family

How am I Thankful? Let Me Count the Ways

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I’m ashamed to say that I often use this blog to vent.  When I’m tired and discouraged, I find it therapeutic to talk it through on this blog knowing that there are those out there who have gone through the same things or are experiencing them now,  and that helps to know I am not alone.  When I receive comments of support and encouragement, it’s better than my own private therapy session. So I’m thankful for those who listen to me whine and share and to those who share with me as well.
I’m thankful for my husband.  Though providing for his care is overwhelming at times, I’m thankful that he is here for me to care for.  I’m thankful for his encouragement and his caring.  He’s always looking for ways to make my life easier and to provide his support.  I admit that I often don’t allow him to care for me because I’m so used to caring for him, but I appreciate his reaching out to me.
I appreciate his humor; he is often able to see the funny side of life.  I appreciate his faithfulness; he strives to be a faithful servant of our Lord, Jesus Christ, with whatever abilities he has.  I appreciate his knowledge; I’ve met few people who know more trivia than he does!  Plus he seems to know something about just about anything!
I’m thankful for Lynn’s abilities. His mind is very alert and as I said above, he’s very intelligent and useful.  Though he cannot physically do many things, he can tell me how to do them or guide me on how to get someone else to do them. Though he can’t write, he can speak and he can see so he uses software to write on his behalf and therefore, remains productive and has goals.  Though he has selective hearing, his ability to hear has not been touched by MS. When he puts his mind to it, he can clearly hear the same as I do. His essential organs still function to keep him alive and healthy though not untouched by medical limits.  Though he was a gourmet cook and can tell what’s in a dish by taste and though I tend to burn more than I like to admit, he always compliments what I make him and phrases my cooking to others.
I’m thankful for my job, my boss, my staff.  I love what I do and where I work.  I love the people I work with and for.  Their encouragement keeps me going and the work gives me purpose and reward…as well as enough income and benefits to provide Lynn with the care he needs and both of us with all our essentials and many of our wants.
I’m thankful for my children and their spouses and my awesome grandson who brings us so much joy with his love of life.  All of our children would drop whatever they are doing at a moment’s notice to come to our rescue if needed.  We KNOW we are loved by them and we know how fortunate we truly are to have been blessed with such good people in our lives.  Not only do we love them as our children but we love and respect who they are as individuals in this world.  We are truly blessed by their presence in our lives.
In the same way we are blessed by our extended family.  Lynn and I both have wonderful, caring, and supportive parents and siblings. Each side of our family gives us love in abundance and it’s so special to spend time with them when the opportunities come.
I’m thankful for our church family.  Our church family truly walk the walk of Jesus’ loving example.  Gethsemane Church of Christ is a powerful example of walking the faith; of giving and giving and giving through God’s love; of reaching out to show they care and of never forgetting that you exist.  The last we were able to go to church was in the fall of 2009.  I was rehearsing with the drama team for Christmas.  Lynn went into the hospital and they had to find a substitute for my part.  Though I was replaced in the role, they never replaced me or us in their hearts even though we’ve been “out of sight” and could have been “out of mind” for some time now.  They have never stopped caring and for that

Lynn and Eli enjoying a ride
Lynn and Eli enjoying a ride

we are truly thankful.
I am most of all truly thankful for the knowledge that I have a Savior who will forever be with me.  It’s amazing how He faithfully meets our needs.  He doesn’t remove the challenges; no Lynn still has MS and my arthritis is making it more difficult by the day to provide his care; but He gives us the resources we need just in time; every time.  Sometimes His answer to our cries is “wait” and sometimes it’s “no” but it’s always, “I’m right here; just hang on.”  He is our safety net and the light in the storm.  Always loving; always caring; always there…forever and ever.
For all these things and so many more, I am truly thankful and awesomely blessed.

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Who Am I?

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Looking outside, I see some new orange and yellow colors where last week I saw green.  There is a sporadic fluttering of leaves cascading in front of the window on their way to cover my yard. The air is crisp causing me to need to turn on heat this morning so Lynn would not be too cold today.  It seems that summer is definitely over.
Working from home now so that I can care for Lynn, I find it hard to really be part of the seasonal changes.  I wear the same scrub suites all year.  I am only outside a very few minutes at a time usually so I can always be in earshot of Lynn’s call for help or need to be catheterized so the usual changes in temperature do not trigger time moving on like it did when I went into work each day.  Therefore, it seems at times as if I am a spectator to life rather than participating in the changes.  I find it difficult to “know” instinctually what month it is.
I think about when I worked as a nurse years ago, I used to ask patients, “what is your name, what month is it, and who is the president?”  Honestly, there are times I think the only one I could answer correctly is my name! My world is focused on keeping up with my daily demands moving between being a caregiver to an employee within minutes of each other and that transition occurring hundreds of time a week.  After a while I’m so focused on trying to stay in the “here and now” that I am not aware of what’s going on around me.
Lynn listens to Fox news in the morning so I usually hear a little about what’s happening in the world as I assist him in his morning routine but after that, I rarely know what’s happening outside of my small world unless a family member emails me a question or shares a comment.  I have to consciously strive to stay in the “here and now” both at home and in the world around me.  It’s very tempting to just stay in my little world.  I have plenty to do to keep me occupied if I did that.  But….is that the right thing to do?  I have to say, “not.”
It’s easy to become isolated when you are so busy caring for one person; after all, they are the center of your world. When that happens, however, I think that the “person” gets lost in the process.  It takes extra effort but keep establishing my “personhood” apart from caregiving responsibilities but I think it’s important to do so. I “lost” myself in my first marriage changing who I was and what I liked to be accepted and to try to save that relationship.  I’m a “people-pleaser” by nature and it’s difficult for me to not just allow myself to blend in and go along with the crowd. But when I did that, as in my first marriage, once that relationship ended, I didn’t know who “I” really was.
When you give and give and give and set aside your own wants and needs, you tend to cope with the necessity of putting others first, by repressing your own inner desires and enjoyments.  But then if the relationship ends either through divorce, death, or just separation as people go in different directions, what do you have left?  Sometimes, it’s not so clear. I remember a counselor asking me during the early days of my divorce what I liked to do and I honestly did not know.  It had been so long since I had done anything just for my own enjoyment (other than read occasionally) that I had no idea what I might want to do for entertainment that I would do with others.  It took me awhile to find “me” again; so I’m trying not to let that happen this time around.
That’s why I write this blog, to assert who I am and how “I’M” affected by this role. It’s why last week even though I needed to do so much at home, when my daughter said, “let’s get away,” I said, “yes,” instead of, “another time.”  It takes a lot more effort to get away than it would seem. Something always has to give when you do, but I think it’s also important to remember to let who you are get free at times from being overshadowed by caring for others. Most likely, one day, I will not be a caregiver any longer and when that happens, I will need to know who I am so that I have “someone” to fall into.  When that happens, I want that “someone” to be a friend; not a stranger.

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Happy Birthday to Me!

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T0day is my birthday.  I’m a grand ole 56 years young or old depending on which joint is aching and how much sleep I have had.  Usually, I do not pay much attention to birthdays.  My children are grown and no one is in the house but me and Lynn and he has no way to buy me a card or gift or anything so it’s just another day.  I get cards and emails and they are all fun and make me feel good but today….today was the best birthday I can ever remember having!!
First off, I went in to work.  Usually I work from home which means I juggle taking care of Lynn and doing my job–often a difficult balance at best and can be very frustrating to split thoughts/functions/ activities continuously throughout the day.  But today, I went into work so for most of the day, I only had one focus…  my job.  It was awesome.  I love having only one thing to focus on even though I had multiple issues to address there, it was one role.  My staff took me to lunch and I was treated to a wonderful fat cheese burger, with the works, and sweet potato fries.  Delicious!  I treated myself to a decadent mocha blended coffee; full of calories, and refreshing for my 15-minute walk from my office to my meeting.  I was outside in the fresh air, able to enjoy peace and quiet; not rushing to get back in the house before I got called to help Lynn in some way or to finish up something that was on a deadline.
I got several text messages with birthday greetings and some beautiful cards.  The cards this year were especially wonderful.  Each one made me feel so humble.  Several spoke to how special I was to the sender and how much they admired and appreciated me. It was so uplifting to have such sweet sentiment shared and to know they meant it. My brother and his family sent me flowers (which is no small thing since I live in the country).  But there was one present I received that words cannot fully express the impact it had on me.  It was truly the best, most awesome gift, I have ever received in my entire life.
It was a card.  Not just any card but a card that was a colleague of pictures of my extended family. My wonderful, thoughtful 81-year old Mom, cut out pictures of each member of my extended family, glued them to a card and introduced me to the family I have not seen since Lynn became unable to travel.Family pictures
I grew up with my Mom’s sisters and their children (my cousins) always around. We were all a very close family.  We all got along together and really, truly enjoyed each other’s company. My Mom had three sisters and from those sisters I had 13 cousins.  Each cousin has had children of their own, most of whom I have never met because I live five hours away and have not been able to go home for most of the family gatherings, even before Lynn was taken ill.  For various reason, I could not get there on the days or times that they were able to gather.  The last time I saw everyone was when my Grandmother died in 2000, thirteen years ago.  Since then Lynn’s condition has made it impossible for me to take him with me back to my family home because their house is not designed for access and Lynn doesn’t tolerate travel very well anyway.  The only travel we do now is once a year to vacation area with our children in a condo that is handicap accessible.
In my heart, I’ve known I would never see my “family” again.  I hear stories and see pictures but it’s groups co-mingled together and difficult for me to tell who’s who.  Well, no more! My Mom (what an angel) assembled a separate page for each family group.  Started at the top of the page with her sister and brother-in-law and then introduced each of their children (my cousins) with their children (my second cousins) in groups and sometimes their grandchildren as well.  I have just met each one and KNOW them. I see the family resemblance and it brings back so much love and longing for them.  I can’t stop crying tears of joy.
As a caregiver, you have to give up a lot.  It comes with the job that you have to make sacrifices that just can’t be helped in order to take care of the needs of your loved one.  I’ve accepted that and just don’t dwell on it.  It makes me sad that I can’t go to family reunions and I often fear the day when one of my precious relatives dies and I want to go pay my last respects, to be with our family in our grief, but know that I cannot do so because I have no way to meet Lynn’s needs nor anyone to stay there with him while I am gone.  I hope that if and when the times comes, I’ll be able to find a way but …who knows?  It’s just a sadness I carry in my heart over the loss of that family I loved so much. I’m not referring to my bothers and their families because they are wonderful about coming here so we can get together at least at Christmas but I’m referring to those childhood playmates that meant so much to me.
I didn’t realize how much I missed them until I got that card.  At first I was grinning so much my face hurt. Then I took it to show Lynn what a special present I had received and the tears started to flow… and then the sobbing… and all the longing for my family I’ve storied in my heart for years just came out.  I am still tearing up as I write this.  I miss them so much and I still love each and every one of them the same as the day I last saw them.
So, I learned today there is more than one way to visit and unexpected joys can come that touch your heart in ways you never expected. I have been so blessed today by so many people and am so humbled by the love that has been shared and given freely.  I am so, so blessed.
Happy birthday to me…

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Choices and Calculated Risk

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I had to make a choice this week about my own care that turned out well but according to the urgent care doctor I saw, was not very bright.  Maybe so, but it was a calculated risk and one that I felt was the right decision at the time and as it turned out, was the right decision in retrospect as well.
You see, I have a lot of allergies and sensitivities.  I am often caught off guard by some new thing I’ve become allergic to so I keep epi (epinephrine) pins around just in case.  Well, Saturday night I noticed I sure had a lot of bug bites for only having been on my deck picking hot peppers for a few minutes.  As the night progressed, they were even itchier and in more places.  By morning, I had patches of hives all over which itched me to a frenzy if anything touched them; especially my hands. I wanted to claw the very skin off my hands!!  It was awful.  I figured the cause was either this new drug I had been put on for arthritis pain or the extra dose of a supplement I was taking so I stopped them both to wait for it to pass.  By night time though, I wasn’t feeling so well.  Besides the hives, I had started to feel a lot of burning pain in my GI tract and my esophagus was feeling like I had a thick lump in it. Since I have lots of medical equipment around here, I took my blood pressure–fine–my pulse–fine–and my breathing was not labored nor was my oxygen saturation off.  So having assessed my own condition, I decided to use the epi pin to stop the progressing reaction.
It helped a bit but I was still miserable and it was worse again the next morning.  Being Monday, I thought that Lynn’s family was coming so I was preparing to go to the urgent care center when they got here.  They were late so he called to see where they might be. His mom reminded him that she had told him the week before that they were coming on Tuesday, not Monday, this week.  Now what? I couldn’t take him with me because he was not feeling great either (his thyroid hormone level is way off) and besides who would take care of his needs while I was being examined etc.?  Though I hated to do it, I decided to call my daughter who has the baby that doesn’t like to eat so she is busy all day long with his feeding tube, therapy, and such.  I honestly had about decided not to go but to just suffer with the intense itching when I realized that I needed to take care of me for once. I also knew that if I didn’t call her she would have felt awful that I did not ask for her help.
As it turned out it was the perfect time of day for her to be able to come over.  I finished Lynn’s care for the morning, put in an indwelling catheter, and hooked him up to his peddler. She got here before I even got him completely ready and off I went.  I’m now on prednisone and the BEST non-itching medicine I ever had, Zyrtec. It was amazing.  I went from frantic scratching to no itching at all in a few hours.  I highly recommend it.
As I look back on this situation, I realize that I have become so used to being the caregiver that I cease to care for myself at all.  While I’ve had enough allergic reactions to be able to gauge pretty well what I need to do, those reactions can trick you and I should have done as the doctor said and call 9-1-1- right afterwards.  Why didn’t I? Because what would I have done with Lynn that late at night?  I hated to call someone out of bed to come stay with him.  I didn’t feel like I had the energy to put in a catheter.  How would I get home if an ambulance took me to the hospital? It just seemed too much of a hassle so I decided to just wait it out.  In reality, any one of our children would have come over to help if I had called.  One would have stayed with Lynn, one would have gone to the hospital and the other would have helped in whatever other capacity was needed.  I know this but I just didn’t want to ask for the help.
I am a caregiver and not a care receiver.  I know that one day something will make me a receiver but I don’t want to change that role right now.  I want to give and not receive…but then so did Lynn when his MS got worse….
We don’t have a choice often in life but to deal with what we get and make the most of it.  Sometimes we make the right choice; other times not so good.  I was lucky this time but I do need to keep in mind that if I don’t take care of myself then I won’t be here to care for him.  Therefore, as his caregiver, it is my responsibility to do what I need to do to be well enough to keep going….and going….and going…..

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Awesome News, Patrick!

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When I first began to write about my experiences as an MS Caregiver, Patrick Leer was there to share an encouraging word.  Since his first comment on my blog, I have followed his journey in caregiving for his wife, Patti, whose MS has progressed to the point that she is in a long-term care facility ( http://caregivinglyyours.blogspot.com/).  However, not having her at home has not lessened his participation in caring for her.  His dedication to her well-being has been constant and remarkable.  Now Patrick is the one who needs care and support.  Patrick was diagnosed last year with Lung Cancer and a few months ago discovered it had spread to his brain (http://lung-cancer-survivor.blogspot.com/).  After intensive treatment, I am thrilled to share that the brain metastasis is no longer showing on the MRI.  He continues to fight for victory over his lung metastasis but I have no doubt that he will beat that demon as well.  Way to go, Patrick!!  I’m pulling for ya!
Since I have heard about Patrick’s new challenges with his own health, my own personal health and future have been on my mind.  I’m pleased to say that a recent medical appointment indicates I’m doing well other than for on-going struggles with arthritis and the associated pain. It’s odd though how when something starts needling your brain, it seems to come up from multiple sources…
At my last caregiver’s support group at church, one of the participants challenged us to create our own personal mission statement along with a vision for our future and goals to accomplish that vision/mission. Her premise, which I think is spot on, is that we get so engrossed in caring for our loved one that we can easily lose ourselves in the daily struggles.   I totally get what she’s saying because I’m really struggling with even seeing a future beyond tomorrow.
Don’t get me wrong, I’m not being morbid and I’m not depressed, but one of the ways I cope with all that I have to do is not make too many plans beyond today or next week so that I don’t get disappointed if plans fall through. To be honest, if I was not caring for Lynn full-time while trying to work and maintain our home, I would go back to school to get my Masters Degree in Business Administration or maybe Criminal Justice. At the very least, I would study and get my certification as a Human Resources Professional.  However, every time I start to “apply” for one of those, reality sets in. To take a course, you must have quiet time to study, time to think about what you read, complete projects, maybe attend study or project groups, and go to the library.  While I might attend class online, I still have to find time to attend. I currently don’t even have time to read a book for pleasure anymore (I listen to them on tape instead).  I can’t get coverage at night to attend classes and during the day I work; shoot, during the evening and night I work because I get interrupted so much during the day, it takes me 12-hours to work 8 and 7 days to work 5.  So if I signed up for a course, I would flunk out through inability to attend or inability to complete assignments therefore, making that dream unrealistic.
My other desire is to write a book about my experiences as a caregiver.  I really enjoy writing and sharing with others and there might be 10 or 12 people out there who might find what I have to say interesting (those 10-12 include family, friends, and my church).  I know; however, since my husband is a writer, that writing a book takes a significant amount of time and getting an agent or publisher takes even more dedicated energy….not sure I have that available. I expect I would get frustrated wanting to get to my writing when so many other things were calling for my attention.  In fact, I actually started on a book on vacation last summer and da moment to look back at what I wrote since then.  Okay, then strike that goal.
Maybe the secret to this personal vision and goal business is to keep it simple.  So trying to be realistic, I need goals that only take a few steps to reach and limited time and which are in line with what I have to do each day.
Okay then, here are my goals for the future…

  • I want to have sufficient income and low enough debt to retire when I turn 66, the age at which social security says I can retire.
  • I want to be healthy enough that I can still enjoy my family and watch my grandchildren grow up.
  • I want to have been successful in being able to keep Lynn healthy enough that he is still here to share those good times with me.
  • I want to be able for us both to go back to church and participate in worship there among our church family.
  • I want us to both be well enough that on occasion we can leave this house for something other than a doctor’s appointment and actually be able to enjoy the time out without rushing to get back before he “crashes.”
  • I want to go out to dinner in a restaurant and order what looks good including dessert.
  • I want to attend a movie or a play without having to leave early or miss part of it to cath Lynn at least once.
  • I want to go shopping and get a new wedding ring to replace the one the doctor had to cut off my finger last year when I had an allergic reaction to fish oil.
  • I want to take my grandson to the park and play.

My pessimistic side tells me none of the above are likely to happen. My optimistic side says don’t give up hope.  I’ll go with optimism and keep my eye on the goal….Just maybe, I can make them happen.

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Call If You Need Anything

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Ever had this conversation?
“How’s (insert family member’s name here)? You know, that if you ever need anything, anything at all, that all you have to do is call….”
Really?  In my experience most of the time that is a polite way of letting me know the person cares and at that time, they certainly mean they would be willing to help, but they hope secretly that you’ll never actually call. Getting unsolicited offers of help is rare and asking for help is just hard.
When Lynn first got sick, I always declined offers of help.  For one thing, I didn’t want anyone to think I couldn’t handle it.  He was “my” responsibility and I didn’t want anyone saying I wasn’t doing well by him. The other reason though was that Lynn had still not come to terms with his condition and he didn’t want anyone to see him so dependent on others.  In fact, when we had visitors he would stage an appearance.  His clothing had to be reminiscent of the clothes he wore before his disability.  He only ate what he could manage himself.  He would slip in and out of the gathering discretely so people would not notice him needing special attention.  He would also push himself to talk more and do more to the point of exhaustion most of the time.
As I became more exhausted from caregiving 24/7, I began to realize I had to have some help but I was still reluctant to ask for any. What a blessing it was to have someone come and offer to do something specific for us!  Offering to come to stay with Lynn so I could go shopping for supplies, to cut the grass, to prepare meals, to help me get my car repaired–all these are things I need help with, and the offer to do them for me would certainly be received favorably by me.
I realize most people don’t know what to offer and are concerned about offending me by offering to do housework or other similar things.  Trust me, I’m not offended!  Anything that I can cross off my list is something I don’t have to worry about getting accomplished and is appreciated.  So, if you’re wondering how you can help someone who is a caregiver, here’s what I would recommend.
1.  Offer to do something specific.  Think about what is a task that takes a long time or may require special skills.  For me, now that summer is here, I need yard work done. I can’t go outside and mow the grass because I cannot hear Lynn call for me and if the phone is on vibration, I can’t feel it if I’m riding the mower.  I need the grass cut, weed eating is done, grass in the driveway sprayed, repairs done to the rotten rails on my front porch, trash taken to the dump (I live in a rural area where we actually take the trash to the dump ourselves), or similar things.  I finally hired a maid service so I no longer need my house cleaned but shampooing the carpet, helping to pack up things to take to Good Will, you know all those weekend projects that take a lot of time, would be suggestions on how people could help.
2. Offer to stay with Lynn for an extended period of time.  It’s very difficult to find someone to stay with Lynn for long periods so I can run errands on the weekend.  Most people work and have busy weekend schedules themselves so setting aside an extended period to be a companion to someone is not a favorite pastime.  Also, some are intimidated by his condition.  Since he cannot do much for himself, they’re afraid he will need something they can’t handle or that they will hurt him in some way.  I remind people that he’s not fragile.  I always take care of his medical needs before I leave.  Really, all they need to do is help him with food, typing (if they know how), drinks, and other comfort items.  He really doesn’t need anything special; just someone to be his hands and feet for a while.
Once the offer is made and accepted for a specific job, there are some caregiver etiquette rules I would recommend you observe.
1.  Treat this as a job.  If you can’t come, call in advance; give a specific time and be there at that time; be prepared to stay as long as you said you would and build in a little flexibility with the time so the caregiver won’t have to stop in the middle of shopping to rush home before the sitter has to leave.
2.  Realize you are there to help out; so help.  I’ve occasionally seen people offer to come help but when they get here, they sit back and do nothing. They are just here in the body only; not connected to the needs of the patient. If you’re here to help, ask the caregiver what they need and then jump up to help promptly if the patient requests help rather than letting the caregiver still do the work.
3.  Don’t tell the caregiver, “You just have to take care of yourself better.  You need to start exercising and getting more sleep.”  When someone says that to me, I want to say, “Don’t you think I would do that if I could?  There are only so many minutes in the day and if things have to get done, there is no one else here to do them so ‘taking care of me’ will just have to wait.” They mean well but they just don’t get it.  Telling a caregiver to do something more, even if it’s good advice, just means more for us to do and it takes, too, much energy to even think about that.
I have been very fortunate because Lynn and my family are wonderful about helping us out; plus we have our church family who comes through for us all the time; however, so many caregivers are not as fortunate as me.  It’s hard to ask for help and it’s even harder to relinquish our loved one into the care of someone else but it’s a blessing when we can get some relief; some time away for ourselves or to do the things that need to be done but can’t be when you’re caring for someone.  Thank the Lord above for the angels He sends to help.  I know I couldn’t have made it without them.

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Second Generation Caregiver

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It would seem that as of this week, my daughter has officially become a caregiver thus establishing a second generation of caregivers in our family. In reality, she has been a caregiver for many months now, but with the hospitalization of her son, my grandson, it now seems official.
Eli will be one year old on Memorial Day. He is full of energy never wanting to stop exploring his world.  He notices everything and remembers what he sees.  He’s becoming independent crawling wherever he wants to go with determination.  He pulls up and walks around things holding on so it’s just a matter of time before he takes off running across the floor.  He has a smile that will light up the room.  He LOVES people.  He has never met a stranger (yeah, that means we will have to watch him closely) and he makes whomever he sees feel as if they are the most special person around.  He’s adorable.  He also weights only 15 pounds (he weighed eight at birth) and is the size of a 5-6 month old.  He stopped growing around five months.  While most children by age one are eating finger foods and sucking down 7-8 ounces of milk, we’re lucky if we can get 3-4 ounces in him at a sitting or 1-2 teaspoons of level 1 baby food.  He just won’t eat and what he does eat, he burns off.
Until last week he was classified as “failure to thrive” with stunted growth.  He grew a little in height but did not put on any weight and was then reclassified as mildly malnourished. With malnutrition, if it progresses in severity, it can result in organ impairment or collapse and brain damage–all serious stuff.  So he’s now in the hospital with a feeding tube trying to boost his nutritional status.  If he doesn’t drink at least 3.5 ounces at a feeding the rest is added by feeding tube.  At night from 9 p.m until 7 the next morning he gets a continuous flow of formula (about 2.5 ounces per hour).  The process seems to be working.  He has put on 2 ounces since he was admitted on Thursday; however, he still does not take the food in himself so that tube is going home with him.
Since Eli was born, he has had difficulty with his feeding.  When very young his cried a lot and could not be calmed very easily.  Then he realized he could refuse to eat.  Now he takes in just enough to no longer feel hunger (or so it seems) and then he clamps those little lips like a vise–so something is wrong but what, we do not know. Therefore, Sarah, his mom, has officially become a caregiver.
All moms (and dads), of course, are caregivers–without them children would have a difficult time living very long; however, when a child develops special needs, that caregiving challenge doubles or triples.  Like me, Sarah rarely gets adequate sleep. Eli does not sleep well and needs assistance to fall asleep (we now know that is probably due to acid reflux causing him discomfort).  She breast feeds so every night around 4 a.m, she has to pump to make sure he has enough to eat since breast milk is his only nutrition.  Since he’s so active, he needs constant interaction and observation even with the help of baby safety devices (it’s amazing how he gets around those things). She has to fix him special formula to supplement her milk.  Feeding him takes 1-2 hours to get 3 or 4 ounces in him. Then once he has finished with milk, she has to try the baby food.  Once that is done, it’s time to get the next bottle ready, so on and so forth.
Eli will likely be in the hospital for 1-2 weeks while they see if he continues to gain weight and while they try to determine why he won’t eat in the first place.  Once he comes home, Sarah will be managing his feeding tube.  If he pulls it out (which he has done every day he has had it) it will need to be reinserted.  That takes two people.  Since I have had more experience inserting feeding tubes in my former nursing career, I offered to do the insertions for her (which she gladly accepted). It’s going to be very tough on us both because it’s not fun for him or us trying to get that tube through his little nostril, down his throat and into his stomach and not his lungs. Being nurses, we both know if it comes out while he’s feeding, he will likely get aspiration pneumonia which could be critical.  There is also the trauma associated with the people you trust holding you down and forcing a tube down your throat.  That’s traumatic for us all actually.
As a second generation caregiver, Sarah knows how her life will be centered on her charge.  She will eat and rest only when her patient does not need her.  Her first priority will be her patient; her child; and ensuring that he gets the care he needs as safely and expertly as possible.  All this she will do while at the same time probably neglecting her own health.  She found out the Monday before his admission that she has osteoporosis.  She has already broken three ribs just by bending over things. If she falls, she could break something else that will interfere more with her life.  They currently have no idea why she has developed osteoporosis at 28 years of age so it’s important for her not to ignore this.
That’s where I come in.  I’ll be her backup caregiver for Eli as she is now my backup caregiver, (along with Lynn’s son, Eric) for Lynn.  We will be the other’s support system and resource.  While I never wanted my child to have to become her child’s caregiver, I know he’s in good hands.  I also know that God will give her the help she needs to make it through this.  She has a wonderful, supportive husband and other family members she can also call on for support so though it won’t be easy, she’ll make it though and hopefully this will be a short ordeal without long-term consequences. 
I hope so.  Having one full-time caregiver in this family is quite enough….

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Caregiver or Mom?

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Happy Mother's Day
Happy Mother's Day (Photo credit: Wikipedia)

Having just celebrated a great Mother’s Day with my three children and their spouse’s, I couldn’t help but think that although my kids are all now grown, my mothering days are not over. I’m not referring to my status of “once a Mom, always a Mom,” which is certainly true but I’m talking about how being a caregiver is much the same as being a mother.
As a Mom, I did everything I could to keep my kids safe, happy, and well.  As a caregiver, I do the same.  Whenever I’m in the presence of my “child” (Lynn in this case) I watch for signs of danger.  Is he about to run over something with his wheelchair that might topple him over?  Has he allowed his food to sit out too long without being eaten so that I need to throw it out?   I even automatically throw my arm out in front of him when I have to stop quickly!  (He always asks me what I think that will do to protect him since he is bigger than I am but what can I say, it’s an automatic reflex.) I always reach out to protect him from whatever dangers I feel might be lurking around. 
I also protect him from “bullies,” others causing him harm in whatever fashion,  by overseeing his health care, going to bat for him in defending his rights, making sure all his “stuff” is secure and cared for.  I am his “mamma bear” protector in the same way that I was to my children.  When I feel a doctor or other healthcare worker is not paying attention to his needs or missing something that I think is important, I step in. If I think someone is trying to take advantage because of his condition, I’m ready to go to battle.  I am his protector….Just like I did for my kids….
When I was raising my kids, I liked to always see them happy. I do the same for Lynn (and have the same challenges and defeats as I did for my children.)  I try to make sure he has what he wants; that he has entertainment and fun in his life; that he feels comfortable and secure. I try to keep his fears at bay and lighten his load so that he doesn’t worry or become depressed.  I try to keep him “happy.”  Hum, okay, I admit, that’s not always true but it wasn’t always true for taking care of my kids either. There are days that I strike out with my sharp tongue that can be cut like a knife.  I don’t always protect his feelings and I often fight back when I think I’m being taken advantage of but overall, I’m very sensitive to his emotional needs.   I try to help pick up his spirits if sad. I comfort and encourage him when he’s down and discouraged.  I bolster his ego and am his cheerleader.  I’m the proud Mama clapping and shouting for joy when he gets good news about his book promotions or gets a good book review.  I glow with pride when I hear him sing knowing that God gave him that voice to praise him (and praise him, he does).  All these emotions I have for him and give to him; I had and gave to my children as their mother.
Another goal I have is that I strive to keep him well.  Now as a caregiver, I seem to spend most, if not all of my time, in this category.  What I feed him, how I care for his physical needs, where I step in to ensure he has a balanced life; all these actions are done with the goal of keeping him well.  I make sure his food provides the best nutrient balance to fight MS.  I assist with his physical therapy to keep his muscles, respirations, and circulatory system in the best shape possible.  I see that his hygiene is kept up and watch for skin breakdown or discoloration that could indicate a problem.  I try to make sure he rests when he shows signs of being tired and I attempt to keep his life a balance of stress and joy. All this is done for his well-being.  All of this I did for my children and their well-being also.
So being a caregiver is essentially the same job description I had as a mother, EXCEPT as a Mom, I knew I was “growing up” my child to go out on their own.  I was giving them the best start they could have in life and laying a foundation for them to enter their adult life with health, knowledge, abilities, and emotional strength so that they, in turn, could raise their own families and be successful in their own right. 
Not so as a caregiver. 
What I do each day as a caregiver is not to prepare my child for a future to go out on their own but instead to continue in this life at my side and under my care for as long as they live or as long as I am physically and mentally able to do so.  He will not “leave the nest.” If he leaves its for a worse situation; not a better one (except personally, I have a strong belief that heaven is an awesome place and much better than earth could ever be; so in reality, it would be a better place for him; just not the dying part). For us, right now, there is not an end in sight, for which I am fortunate because as a caregiver to someone with an incurable condition, an end means THE END and is not a happy goal to achieve.
So as I reflect on Mother’s Day, I realize, I have my three children, my three children-in-law, my grandchild, and my spouse-child.  I have a house of children and in my opinion there is no better (or harder) job in life than being a Mom. 
Thank you, God for blessing me with my children.

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Just Sharing

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Usually I have a theme for my posts, but not so today.  Instead, I just want to share what’s going on in my life because life doesn’t stop for a caregiver; it just gets busier and busier.
Lynn:  He has started to feel better from taking his Rebif. Hallaluyah!  It only took a year.  Though he still has fatigue, it’s much better; except for this past week. For some reason when pollen comes out each spring, it really hits him hard.  He needs about 25 squirts of saline mixed with nose spray every time I enter his room and sometimes twice while I’m there.  He has felt very tired all week and rather depressed. The depression leads to impatience and irritability so my tolerance has been stretched as well.  He seemed better today so I hope he’s getting adjusted.
Eli 146My grandson, Eli:  Poor little guy has been labeled with “failure to thrive.”  He’s 10 months old and the size of a five month old.  He has not gained height or weight in several months. He will only drink 2-3 ounces of breast milk at a time and if he eats solid food, he breaks out in a rash.  The GI specialist says his tummy probably has the same type of rash inside as he skin outside and so it hurts him to eat. He’s on an formula that has been added to the breast milk and it smells bad and must taste bad because he pushes it away as soon as he tastes it.  We’re trying to get him to drink at least as much as before adding the supplement but he’s really fighting it. If this is not successful, he may need a feeding tube.  It’s very frustrating and anxiety producing for his caregivers but the little guy is just as happy and loving as he can be! His smile is infectious and he’s a joy to be around. 
His mom, my daughter:  She bent over a chair Monday and broke two ribs!  She also broke her ribs bathing Eli when he was about two months old so now we have the added concern of why are her bones breaking so easily?  Bones don’t usually break unless an unusal stress or intense pressure is applied. She just leaned over the chair.  So, she’s having all sorts of lab work done plus a full body bone scan and a bone density test to figure out what’s wrong.  Though they do not suspect cancer, bone tumors or bone infection can be the cause of such breaks.
While she goes to the doctor, I keep Eli and Lynn.  A typical hour from such a day:
     Lynn:  “Sweetie, I need to pee.” (I pick up the baby, settle him into something he can’t get out of, cath Lynn and deal with whatever else he needs.  Meanwhile, baby gets fussy.)
     Eli:”Mamamamamam, (squeal), dadadadad, (whine)” hands reaching up, whining getting worse; he’s rubbing his eyes and needs his bottle. (I settle Lynn, go heat up the bottle, with Eli crawling around my legs begging for his milk that he wants THIS MINUTE)
     I rock Eli to get him sleepy so he won’t fight eating.  As his eyes start to shut, I remove his pacifier and stick in the bottle. Success, he eats 2 ounces.  I try it again in a few minutes- another ounce-and that’s all he will take.  I finish rocking him to sleep (he’s a very light sleeper; if you move he wakes up and is ready to play) I start to fall asleep (I’ve only slept six hours so I’m always tired) and after about 20 minutes, I hear:
     Lynn:  “Sweetie, I need to pee”  and we start over.
      I never ends…
My son:  He’s getting married on Friday at our house and having the reception on Saturday at our house so Lynn can attend and have a place to rest. So my house is covered in flowers and wedding preparations and every spare minute I’m busy working on something related to the wedding.  I’m taking next week off from work to get it all done because I’m WAY behind. I don’t even have a dress yet!  But I’m very excited and happy for them both.  It’s been a lot of fun helping them put it all together.
Me:  I’m seeing a surgeon on Monday.  My right thumb joint needs to be replaced.  I can’t really put it off any longer.  It’s painful all the time, I can’t open anything with it, I can’t grasp anything so I need to get it done BUT, what am I going to do with Lynn? I’ll need some respite care of course but I won’t know till I see the surgeon how long I’ll be unable to use my hand.  Ugh….I dread dealing with his needs more than I dread surgery for myself.  I don’t know how I’ll afford the continuous care but I’ll need to see if we can get help for 24 hours because I can’t cath him with one hand nor can I transfer him into or out of bed with one hand.  Wish me luck on this one.  May take several weeks to work this out.
My work:  busy as usual, still needing me when I’m needed at home. 
So as a caregiver, I find there are many ways I need to provide care and to many people. Lynn and my daughter for their medical needs. Eli for medical and baby care.  My son for sending him off into the world with his own family.  And myself. 
Who takes care of me?  God.  He provides me with what I need, when I need it and thank goodness for it.  
PS:  All prayers are welcome!

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Wanted: Caregiver Ten Hours a Day

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I needed to go into work on Monday.  I was supposed to be meeting someone at 12:30 so I had to leave by 11 (an hour to get to work, 30 minutes to walk to the  location of the meeting and time to prepare for the meeting).  To leave by 11, I have to allow three hours preparation time at least.  To leave, I don’t necessarily have to have someone here but Lynn has to be out of the bed and “set up” for both comfort and safety.  Therefore, to get to work to attend a meeting at 12:30, I need to be out of bed to start by day 4 1/2 hours before the time I need to be there.
Because I come on site only one day a week, I usually set up back to back meetings for while I’m there.  It also never fails that when people see me in the halls, they stop and ask my advice on whatever is happening in their area at that time (that’s my job essentially; I give advice).  I usually take some type of ready-made lunch bar as my lunch to chow down as I walk between meetings.  The entire time I’m on site, I’m watching my time knowing that on my way home, I have to stop and get groceries while I’m “in town” and whomever I’ve asked to stay with Lynn is usually anxious to get back to their lives.
It’s almost always the case that I’m running late.  Lynn always needs several “just one things.”  My relief usually walks in the door as I’m trying to walk out so I get no help getting out the door.  Once I’m at work, I always have at least one or two, “have you got a minute?” requests.  Then grocery shopping always takes longer than I think and I almost always need to add a stop of two (library, post office, another store).  Therefore, I’m always late and always feeling guilty for being late.
Monday it really got to me.  I ticked someone off at work before I ever got there about a class I was supposed to teach and didn’t want to because the registration was only for one person.  I finally said I would teach it but they had arranged for someone else to cover for me and that someone was annoyed when I said I would take the class over after all since she had spent her weekend re-doing my slides.  I felt so guilty for having her cover for me that I cried all the way into work.  Then I went to her office to apologize for her being asked to do my class and I cried again. I hate for anyone to do my work for me! I don’t want people to think I’m slacking off and I know that because I work from home, people think that I’m not doing my job as well.They don’t say that to my face; on the contrary they tell me how amazed they are at what I get done; but I see  the looks.  I know the tone of voice.  I know when I’m not told about things that I SHOULD be told about and when I’m not included in things that I should be included in deciding.  I also know what is usually said about people who work from home–Are they really working all the hours required?  Can they be counted on?  Are they really meeting the expectations of the job? Should they be required to come back into the office?
That last question is the big one for me.  I would love to be able to work from the office and escape from being a caregiver/full-time worker every day.  However, I know that if I was required to come into the office, I would probably have to find a way to quit.  On my salary alone, we could not afford a 24-7 caregiver for him.  I also know that if I took over his care when I got home that with all I would have to do between arrival and departure the next morning, I would get even less sleep than I do now which is on average only six hours a night.  Driving would not be safe; physically I could not keep up.  Plus if Lynn had to use a foley every day and still used the peddler as much as he does now, he would get a urinary track infection from the trauma of the constant movement.  His last UTI landed him in the hospital for three months due to various complications.  I don’t want to go there.
So I decided to hire a care giver one day a week for 8-10 hours a day to arrive an hour before I had to leave and to stay long enough for me to do all I needed to do.  I wanted an employee.  Someone I could give instructions to and who would do all I asked because he/she was being paid to do so.  Someone that was a stranger so he/she could help Lynn with hygiene and tolieting issues without embarrassment to either.  I told Lynn what all I wanted this person to do … and he asked his son to do it.
Don’t get me wrong.  His son is awesome about helping me out but he has a new job that is already making it difficult for him to be here as often as I need him.  Plus Lynn doesn’t want him doing as many personal things for him because he doesn’t want to embarrass him or make him feel overly burdened.  I know Lynn was trying to help out and I know he would feel more comfortable with his son than anyone else but now I don’t think my goals for what I need will be met. I’m going to see how it works and plan to request of him all that I would have requested from a paid caregiver just to see, but I’m not confident.
Keep your fingers crossed for us!

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What do I do Now?

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Following the get-together last Saturday with my family, Christmas was fast upon us two days later.  Christmas Eve we always have our children come over for our family time.  Since the baby was still recovering from his cold, my daughter brought him to our house before heading in for the Christmas Eve church service.  I planned to watch him, cook dinner and be ready for everyone to come back around 6 or 6:30 for dinner.  However, shortly after they left, Lynn started running a fever.
While fevers can be a source of discomfort and can make anyone feel bad, for an MS patient, they can be devastating. Between 4 and 6 p.m. his temperature rose to 103 degrees.  Along with the aches and malaise brought on by the fever, his spasticity became so severe he was asking me to stretch out his arms every few minutes.  Meanwhile the baby needed to eat and I had dinner to cook. I fed the baby but other than that, just rotated him from play site to play site.  Then he began to get sleepy and wanted attention.  I had put potatoes on to cook, and was literally running from kitchen to bedroom every five minutes as I bounced the baby rhythmically trying to “rock” him to sleep in my arms (it didn’t work). 
I called Lynn’s son, Eric, and told him, “Dad had a fever and I needed help; come early,” but by the time he got the message and could get ready to come, it was already six. When Eric and his wife walked in, I was so relieved. I handed Erin the baby, told Eric to stay with Lynn (I had finally gotten the temperature to start coming down) and I took off for the kitchen. Fortunately the other kids were late and didn’t get here till almost seven.  By then all had settled, and dinner was ready.  Whew!!!
Lynn was not able to join us because he felt too bad but everyone would go visit him periodically to keep him company and then let him rest.  It was disappointing that he could not join in the festivities, but, all in all, Christmas Eve was fun and certainly memorable.
The next day, Lynn was very tired from the aftermath of the fever but was able to participate in a late lunch with his family.  His sister came over in the morning and fixed the meal and it was delicious.  She left us some food for dinner and after everyone left (and Lynn had a nap) we rounded out the evening with a movie.  Later we had leftovers (his were made just for him according to his diet) and we went to bed around 2:00 a.m.
At 3:30 a.m., I woke up terribly sick.  My stomach was grumbling and I knew I better rush to the bathroom before I had an accident.  As I rushed past Lynn, he said, “I need to pee.”  I replied, “too bad, I’m going to be sick.  Hold it!” and rushed on to the bathroom where I proceeded to have both vomiting and diarrhea. Several people in the community had GI bugs so I was not sure what was going on.  I thought it might be food poisoning because the stuffed mushrooms with cream cheese had set out for several hours and I finished them off for dinner, but what if it was a virus?  I didn’t want to expose Lynn.  I could not imagine managing him through hours of diarrhea and vomiting, plus something like that could be a major set-back for him or even require hospitalization.  But he needed to pee so I needed to figure out how to care for him and reduce his exposure to me.
The entire time I was being sick, I had in the back of my mind, he needed to pee.  I figured if I could get a foley inserted he would be okay for a while till I could get someone to come take care of him.  So after I would vomit, I would have that period of peace between events.  I shuffled off and got the foley insertion supplies and laid them out.  Then went  back to the bathroom.  When all was calm again, I came and put in the foley and then went back to the bathroom.  Knowing he had a foley, I figured he should be okay for a few hours.  I grabbed my cell phone on one of my trips out of the bathroom and sent a text to his son, “I’m sick.  I need you now! Come take care of Dad.”  It was in the middle of the night so he did not get the message for several hours but came as soon as he could afterwards. By then the worst was over and I was sleeping the needed sleep of recovery.  Eric stayed most of the day until I felt strong enough to eat and take over Lynn’s care.
I had wondered before what I would do if I got sick like that.  Now I know.  I just keep going and work around the illness.  I thought about calling the rescue squad to put in a foley but I have heard they won’t do that.  They would take him to the emergency department and have it put in there.  Can you imagine?  I’m sick, they load him into an ambulance and take him in to get a foley.  He’s then stuck in the emergency department somewhere totally ticked off and worried about me and I have to figure out where he is and how to get him!  That would be a mess, wouldn’t it?  But then again, if you can’t pee, it does eventually become an emergency.
You may recall I have a daughter who is a nurse and you might be thinking, “why doesn’t she call her?”  Unfortunately, my daughter has a phobia of being around vomiting.  This is a true phobia and she becomes dysfunctional in such a situation.  She would be no good.  She could handle just about anything else calmly and professionally but knowing I was vomiting would make her avoid my house as if we had the black plague.  Her phobia is beyond her control and something we have dealt with since she was six so I know better than to try that route unless there is no other option, and even then, I’m not sure she could handle it.
Anyway, I figured out my own solution and managed to take care of Lynn while I was sick. I’m sure what I had was food poisoning not a GI bug because by the next day I was fine.  So all ended well.  Lynn’s fever did not return.  My cold is slowly getting better and tonight is New Year‘s Eve.  I’ve started taking down my Christmas decorations and hopefully will make a big dent in them tomorrow.   
I hope 2013 will be a good year full of family and love and hope.  I know if challenges come, as I’m sure they will, we are not alone.  Our Lord is with us and the angels he has given us (a family, friends, and acquaintance who look out for us every day serving as his hands) will met any need we may have.  We are truly blessed.
May God bless you all throughout this coming year! 
From my house to yours, Happy New Year.  
Donna

What do I do Now? Read More »

Warning! I have a Cold!

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Yesterday we celebrated Christmas with my side of the family.  Several traveled about five hours so that we could be together. We had a wonderful time but it almost didn’t happen.
Earlier in the month I posted a blog about how difficult it was to choose between caring for Lynn and helping out my daughter who was sick and whose baby was very sick. After reading that post, my loving, self-sacrificing, 80-year-old parents jumped in their car and drove five hours to come help her out so I would stop worrying about her.  (See where I get my caregiving tendencies?)  It was such a relief to have them here so I knew Sarah could get some much-needed rest.  They kept the baby at my house, and I could help from across the room or up close if I was careful to stay away from his little contagious face.
My parents needed to get home for some things previously planned so they left early Friday morning of that week (two Friday’s ago).  A few hours after they left, my daughter sent me a text, “do you have a spare stethoscope?  I think Eli is wheezing.”  Though I didn’t have a spare, I immediately took what I had and went over to check his breathing.  In doing so, I walked into virus city but I took the risk because I was worried about the baby.  I’m glad I did because he was certainly wheezing and, in fact, ended up in the emergency department a few hours later to get breathing treatments.  I stayed away from them after that but it was too, late–the alien invader cold virus breached my armour and attacked.  I now have a horrible cold and I’m miserable…and feeling guilty and worried.
Several other members of my family had also been sick last week with colds and one developed an intestinal illness which was a totally new bug to throw into the mix. We almost postponed the family get together; but by yesterday morning, most were feeling better so we decided to have a “no touch” celebration.  Honestly, I think I was the sickest one there so I hope no one gets sick from me!  We occasionally forgot and gave a hug but for the most part, we did not touch.  Since the baby had finally gotten better, the only ones who could touch him were his parents and me (other than my parents who had no symptoms of illness and had already been exposed to him) which was disappointing for the others.  I was ill but from the baby sharing his germs so he could not be re-infected from me.
As I sit here, now, sneezing almost continuously, my biggest fear, of course, is Lynn.  I can’t help but share these germs with him.  I’ve washed my hands till they are cracked from dryness.  I put a towel over my shoulder when I have to move him to keep his face away from my clothes. I turn away when I cough and sneeze but he’s living in my germs.  I give him Zicam around the clock. However, I fear it’s just a matter of time before he is sick, too.  In fact, he said his throat was a little sore this morning and his use of nose spray has started to increase.
Everyone hates to get a cold and hates the miserable symptoms that cause sore noses, difficultly sleeping and other unattractive and inconvenient maladies.  However, for a person with MS, it carries even greater concerns.  MS is considered to be an autoimmune disease because the immune system in an MS patient is “confused.”  Where in the lives of a person who does not have an autoimmune condition, T-cells and other infection fighting agents are good guys, in a person with MS, they are traitors.  Instead of helping the body, they attack it.  Think of it this way…
Two little countries are located side by side and they hate each other with a passion.  Both countries train their soldiers to attack and destroy any soldier from the opposing country on sight.  The two country’s inhabitants have unique skin colors.  Country-A inhabitants have yellow skin and Country-B have green.  Finances are an issue one year and Country-B is low on resources.  They came up the strategy to put a blueing ingredient in the water of Country-A.  The next morning when Country-A wakes up, everyone who has had water to drink during the night has turned green.  The rest of the “yellow” inhabitants think they have been invaded and began to attack and kill the “green” invaders.  Thus they destroy themselves and the Country-B gains control.
Something similar happens in MS.  The person’s immune system senses danger and attacks itself so when a new infection is introduced, more “defenders” are produced by the body and these new defenders not only attack the invaders but also the person’s own body.  That makes the individual susceptible to having an exacerbation and developing new MS problems. 
That happened to Lynn two years ago.  He got a bladder infection that was not treated correctly. He lost his desire to eat and his body’s inefficiency to fight the infection led to him being hospitalized.  Once he was hospitalized, he developed pneumonia due to an accidental aspiration from the feeding tube he had, and between the two infections (respiratory and urinary), his body engaged in WWIII tactics which nearly cost him his life.  He has just now gotten back almost to his pre-hospitalization level but still has a way to go even now.  Before hospitalization, he had better balance, could use both hands, and had voluntary control of urination. Now he has none or limited ability in these areas.
So, it is with great concern I wait to see if my cold leads to an illness in his body.  I’m also concerned because he currently has a stage III skin breakdown on his right buttock.  Therefore, his body is already under attack trying to repair the skin damage.  I fear that adding in the defense of a cold will be over whelming. 
I’ll just have to wait and see and ask for prayers of defense.  I know if he gets sick not only will he need prayer support but so will I.  (He becomes even more needy when he doesn’t feel well and I’m already on overload from that front as it is!)
On a more pleasant note, I look forward to two more family events this coming week and one next week for New Year’s Eve if he isn’t sick. 
In closing, I wish you and your family a very MERRY CHRISTMAS and God’s blessings on your new year!

Warning! I have a Cold! Read More »

Pass It On

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One of the hats I wear as the caregiver support for Lynn is to help him promote his book.  As I have mentioned before, when he no longer was able to work, he began to write. His first book, “Rising Tide,” was published a couple of years ago.  Those who are not in the publishing industry assume that the publisher promotes the book.  Not so these days as the only books that are advertised or extensively promoted are those from already known authors. Therefore, Lynn spends a great deal of his day contacting book clubs who might be interested in reading his book and offering them a free promotional copy.  He also writes a blog about writing and interacts with book sellers.
One of his contacts who writes a blog about authors is featuring him and his book this week.  Check it out!   This is a link, www.kaitlinmichelle.com, to a feature article which includes a short interview with him as well as an except from the book, the official trailer, and a short bio about Lynn.  Due to the limitations he has from MS, Lynn is limited in marketing his book to the use of social media.  He is trying to start a grassroots movement to promote his book, “Rising Tide.”  I hope you will check out the article and pass it on to others who enjoy reading.

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Whom Do I Choose?

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I am feeling so frustrated tonight because my good sense tells me not to do something I really want to do but my heart is longing to do it.  Here’s my dilemma.  I want to be a caregiver to two different people (actually three) and it’s tearing me up that I can’t.
My grandson is very sick tonight.  It probably won’t amount to anything but he’s only six months old and has a very bad upper respiratory track infection.  He can hardly breathe, his mucus drainage is so thick he’s choking on it, and he can’t drink (he’s only had nine ounces of milk today) so he’s becoming dehydrated.  His mother (my daughter) is scared to death. Her husband’s cousin died at this same age of an upper respiratory infection and she’s afraid it will run in the family so she doesn’t plan to sleep until he can breathe.
She had him in the emergency room last night unable to breathe and she’s had him to herself all day today so I’m sure she has not slept since yesterday.  That means whether she wants to sleep or not, she will at some point and when she does she needs to make sure that little Eli is safe.  I’ve coached her on some tricks-of-the-motherly trade to try to help her with the approaching night (everything from poweraide for hydration to sitting in the shower steam to open up his head).  I’ve any suggested using the carry sling to hold him against her tonight so when she falls asleep, the baby will not fall off her chest.  I’ve offered prayers and my limited experience to her over the phone, but what I really want to do is to go over there and keep him for a while so she can rest. But, I can’t do that…
With MS, one of the big risks is contacting infections.  MS is an autoimmune disease meaning that the immune system does not function properly.  People with MS must avoid getting sick because it’s more difficult for them to recover.  Lynn, for example, will take a month to recover from something most people are over in three days.  His lung capacity is compromised due to weak diaphragm muscles.  Therefore, if he gets a cold he has a more difficult time coughing up secretions and keeping from getting pneumonia.  Therefore, we don’t go out much in public during cold and flu season to limit his exposure.
We were already exposed to Eli all weekend.  I kept him Saturday afternoon and then again Sunday morning.  At those times he wasn’t eating much but he did not appear the least bit sick.  He was happy, breathing well, and sleeping without any congestion.  I was very surprised when his Mom called to warn me he was sick and Lynn had been exposed.  Oh well, you can’t avoid everything.
But here again, MS gets in the way of what I want and need to do.  I want to help my daughter and grandson but I can’t because Lynn is my first priority and responsibility.  I worry about my responsibilities getting in the way in meeting the needs of my other family members too.  My parents are around eighty years old.  They are very healthy still but every time the phone rings, I’m afraid I will hear that one of them is sick or injured.  I will want to go to be by their side but what will I do with Lynn? If I take him with me, his wheelchair can’t go into their home. He couldn’t stay alone at a hotel because he can’t do anything for himself.  I could maybe get someone to stay with him but no one in the family really knows how to care for him 24 hours a day and besides, everyone works or has other responsibilities.  I could have my parents brought here but I know they would not want to leave home.  It bothers me a great deal because I’m torn between who I get to help when I want to help them all if they need it.
So I deal with it by not thinking about it.  (visions of Tara and Scarlet O’Hara run through my mind…”I won’t think of it today.  I’ll think of it tomorrow.”) I know one day I’ll have to make a choice but that day is not today.  I just pray I’ll make the right one; the one where I can do the most good and the least damage.

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Transition

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I got a text message early this morning from my son saying that his fiance’s mother, Leslie, was beginning to transition toward her death.  I hadn’t heard dying referred to in that way before but it made a lot of sense as I thought about it.  There are specific changes that occur as our bodies begin to stop functioning and prepare us to die.  For those who are followers of Christ Jesus, it prepares them for accepting their heavenly bodies and begins the process of ashes to ashes; dust to dust.  Tonight at 10 p.m. she finished her transition and she has now gone home to her heavenly family.
Anticipating his call (admittedly, not quite this soon) that she had died, I’ve thought a lot about how we transition our lives.  For Leslie, she no longer suffers.  She is being welcomed by family and friends who have gone before her and by a heavenly Father who’s love surrounds her in warmth.  She has no more pain, no more worries, no more fear.  Her transition to the purest form of bless possible is now complete.
For her family, they transition to sadness mixed with some relief.  They are relieved her suffering was so brief (she was diagnosed with lung and bone cancer just two months ago) but sad because they cannot have her with them physically anymore.  There will be many adjustments for them to make since my son and his fiance lived with her and her husband.  They will each assume new roles and new responsibilities.  It will be tough on all of them and has been since she got sick but they have also grown and matured so much in the last few weeks.  I am so proud of both my son and his fiance in how they have worked together and handled this difficult time.
I also have thought about the transition that occurred in our lives when Lynn was diagnosed with MS; then again when he fell and was left helpless on the floor for several hours till I could come rescue him; and then again when he came home from the hospital so weak and de-conditioned that he could not sit up on his own or do any self-care. We transitioned from being a couple fully involved in our church to a couple who only attend church electronically now.  We used to help others and now we need others to help us.  He used to build and create with his hands and now he must do so with his mind.
Transition implies a gradual change from what was to what is.  After the transition, you’re left with a new reality.  It takes a lot of adjustment and sometimes it’s a struggle. Sometimes it’s a welcome change; other times we go kicking and screaming but in time, if we’re wise, we accept it and move on.  We take a deep breath and move forward taking it one step at a time without looking too far ahead.
Leslie has now transitioned into her new life and her family are transitioning into theirs without her.  I pray for comfort and peace for them all and am thankful for their faith and the knowledge that they are not alone.

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Hope you Enjoyed Thanksgiving

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I am very fortunate that almost everyone in my husband’s family likes to cook because I don’t.  I enjoy eating but I eat to live; I don’t live to eat…except maybe for desserts. 
Early Thursday morning, my wonderful sister-in-law arrived at my house to start the Thanksgiving feast.  She did the entire meal, start to finish, and it was absolutely delicious.  I am so thankful that she will do this for us. 
Lynn cannot access anyone else’s home in our family and therefore, it would be difficult, if not impossible, for us to go somewhere else other than maybe a restaurant. This year we also had the challenge that my father-in-law is now blind due to macular degeneration. Therefore, we have learned to be creative. At one end of the table we made a space for Lynn’s wheelchair and at the other end, we made sure everything was set in an “easy to locate” design.  It worked.  We have great food; everyone ate their fill, and I think we each had a plate for dinner as well.
Lynn and I have much to be thankful for. Though he cannot do much for himself, he still manages to stay productive with the help of family and friends who help him type his manuscripts.  When they are not around, he slowly works on marketing his first book through the internet.  This activity has kept him working toward a goal and maintained his creativity.  Furthermore, he has not had an exacerbation in two years and he is gaining strength gradually with his diet plan and exercise.
I am still able to work from home and keep our income source which is essential in order to keep a roof over our heads and access to the things we both need to make life comfortable.
Our church family continues to take care of us in every way possible.  They are awesome and remarkable in all that they do for us.  We are so blessed to have them in our lives and to have a Lord and Savior who meets our needs everyday and blesses us in abundance.
We have family who love and care for us and who are devoted to lifting us up at all times.  Lynn’s mother, sister, and son come every week to spend time with him which takes a burden off me.  My daughter now comes over two or three times a week to type for him.  My son helps as he can (though with his fiance’s mother, whom they live with, is terminally ill; therefore, most of his time now must be devoted to helping them–for which I am also grateful that he’s there to do so).  My son-in-law takes great care of our daughter and helps us often around our house.  Our new daughter-in-law takes good care of Lynn’s son and loves us all.  And last but not least is the blessing our wonderful grandson who has spread joy throughout our lives in so many ways.
Our blessings are too many to list and more than we deserve but for each we are grateful.  I hope your Thanksgiving was also blessed.

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They're Married and Lynn was There for it All

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Before every big event, there is always the fear that MS will get in the way of its enjoyment.  I am pleased (and relieved) to say that did not happen during any of the festivities associated with Lynn’s son’s wedding.  For days prior to the event, Lynn would comment on how he hoped his Rebif shot would not make him so miserable that he could not enjoy any of it.  He was determined to be there and I expect he would have been there if it meant going by ambulance but fortunately that was not an issue.
Friday was the rehearsal lunch at our home.  Once again our church came to our rescue and a group came and set up for the meal, while others prepared the food and brought it to our home hot and ready to eat.  It was prepared according to Lynn’s dietary restrictions so he could fully enjoy the meal.  It was delicious.  Following the meal, this group also completely cleaned up and cleared out so that I didn’t have to do anything but take care of Lynn’s needs.  I can’t tell you how grateful I am for them doing that.  I was so freaked out about having to prepare the meal and get everything ready for up to twenty people to arrive at our home.  Knowing Lynn would need a lot of assistance I couldn’t imagine being able to do it all.  In fact, I know it would have been impossible without me having a complete breakdown. I asked two of my friends for suggestions on who might be able to cater and before I knew it, all was arranged.   What friends and what a church family!  Our blessings from them overflow!
After lunch, we were a little late to rehearsal but got there in time to learn what was needed from him.  Lynn was feeling pretty rough by that point so we were a little worried about the next day.  With the help of some Valium to decrease his spasticity and a nice warm shower, I put him to bed for a rest and made sure the remainder of the night he relaxed.

Saturday morning, he woke feeling decent.  He did a limited exercise routine, ate breakfast and laid down to rest till it was time to get ready.  All the groomsmen were western characters so I made sure I had extra time to get him assembled into his outfit. 

As you can see, he looked quite dashing.  We actually made it out the door in plenty of time to get there which was a good thing since Richmond was having a marathon and you literally couldn’t get to the building where the wedding was being held!  Finally by cutting through one of the barricades and taking an alley we got to our destination.  Then into the freight elevator, through the obstacle course, to the ballroom.  He could not join the rest of the groomsmen since the balcony area was not handicap accessible so we hung out in the coat room till they were ready for the men to come into view.  He was Eric’s best man and managed to fulfill his duty of giving Eric the rings without losing them. 
Eric and Erin wrote their own wedding vows and they were priceless.  The promises they made to each other were so “them.” The entire ceremony maybe took ten minutes and it was wonderful.  It was fun, loving, and memorable.  They included the families on both side in all their planning and I couldn’t be prouder of how thoughtful they were to Lynn’s needs.  He was included in everything.  The hotel staff knew about what he would need and made sure he was well taken care of.  Though I was right there to take care of what he needed when he needed it, all I had to do was catch one of the staff’s eyes and they immediately helped me get what I needed. 
The care that Eric and Erin took in planning this wedding was very evident as they considered Lynn’s accessibility, his dietary needs, and his fatigue.  Through their thoughtfulness, he was able to be fully involved and today, the day after, he is not in the midst of extreme fatigue.  He is tired but then so am I.  We are both very grateful that the wedding went so well and Lynn was able to fully be a part of such and every important event.  Lynn adores his son and is so proud of him.  We love our new daughter and we look forward to many years ahead with the two of them. 
Now only one child left to marry off and I wouldn’t be surprised if that one isn’t hitched within the year as well. We look forward to that union as well and feel so fortunate that all three of our children have found partners who love them and are already part of our family.  We are very blessed.

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There are Worse Things Than MS

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I got a text message from my son this week asking us to pray for him, his fiance, and her family.  His fiance’s mother was recently diagnosed with stage IV lung cancer that had spread to her bones. She has had a month of radiation and a couple of weeks of chemotherapy but she is not tolerating the treatment well (she has lost 28 pounds in a month and was already very small).  The doctors are recommending that they stop treatment and consider hospice.  Her only child, my son’s fiance, has been holding up extremely well during all this taking on the burden of support and caregiver for her mother; but it finally got to her when she was asked about a “do not resuscitate” order. 
My son and this young woman have been dating for about six years so I’ve grown very fond of her and when he shared this information, it really hurt my heart to think of her upcoming loss and what her mother must also be considering.   Next weekend my step-son (Lynn’s biological son) is getting married.  I have to wonder whether my son and his fiance will now rush to get married while her mother can still participate in the wedding.  It would be a very simple affair I’m sure since time will not allow for planning but I can imagine the desire of the daughter to have her mother there and the desire of the mother to see her daughter married.  Suddenly plans change when your focus is narrowed in on time and what’s of utmost importance.
I’m fortunate that Lynn is currently doing well.  He’s stronger and better able to move than he was at this time last year which is a blessing; however, his ability to do things for himself is no better and may actually be a little more limited.  But still, he is doing better so I’m not focusing on avoiding readmission to the hospital or making plans for greater support.  However, I know that one day, that will occur…just not now.
Sometimes looking at the long road ahead and the expectation that as he needs more support, I’ll be getting older and less able physically to provide the care he needs it becomes overwhelming.  On the one hand I hope that he won’t linger in a state of total dependence on anyone while he lies in bed unable to move or do anything on his own.  I know he had rather die than end up like that so if that point occurs, I hope he dies quickly.  But I hope that is a very long way off because even though it takes so much out of me to care for him as I do, I had rather have him as he is now than not at all.  We still share so much and still find joy in our lives and I hope that the blessing of being together continues for a long time to come.
So when faced with the awareness of how fleeting life can be, I realize once again that there are much worse things than having MS.  What he has is a nuisance but he still has life and joy and hope and that makes MS just A thing not THE thing.

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Hygiene and Grooming – Sweating the Small Stuff

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Today was Lynn’s six-month visit with his dentist.  Tonight, after his shower, was time to cut his fingernails and file them.  Between the two activities I began to think about all the small things a caregiver takes over for their charge that are so important to that person’s self-image and feeling of being clean and neat.  Most of these things are those intimate tasks that you shut the door to the bathroom to perform as you scrunch up your face and look in the mirror or drool as the toothpaste runs down your chin.  They are also those tasks that on TV comedy skits get a “yuk” when it’s mentioned doing them for someone else but which if you can’t do them for yourself, are demoralizing if they do not get done.
Mouthcare
No one wants bad breath or to be speaking to someone with a big chunk of spinach stuck between their teeth.  Nor is their anything more annoying that a piece of meat stuck between your back molars and your tongue can’t work it loose.  Right?  Absolutely!  So dental hygiene is really important for everyone; not just to keep your teeth so you can chew food but also because you want to look attractive and not disgusting when someone speaks to you.   It’s one thing to floss and brush your own teeth but it’s quite another to do someone else’s.  Sticking our big fingers into someone else’s mouth to floss is pretty difficult–there’s just not much room in a mouth. Knowing when you’ve gotten all the chunks out is another–you can’t always see that stuff; sometimes you have to just floss, rinse, repeat till it doesn’t feel weird anymore. 
Dental care is very important for maintaining teeth and gums but also, as I mentioned before, for the person’s self-esteem and comfort.  When your teeth are dirty, you feel dirty all over.  You don’t want to talk up close to anyone for fear your breath stinks.  It can really make a person self-conscious and more isolated.  Something seemingly so small can be very significant to overall mental health and a positive attitude.  So as much as I don’t enjoy leaning into Lynn’s mouth to pick his teeth, brush and rinse, I try to do a good job and not complain, too, much when I have to repeat, and repeat, a process.  I must be doing okay because he got a good report today — “look, Mom, no cavities!”
Manicures
When I hear manicures I envision beauty salons with a manicurist filing fingernails and applying the perfect shade of polish.  I’ve never actually had a manicure but that’s what I think it would be like.  But for caregivers, giving a manicure to someone can be a scary experience.  When you clip your own nails, you know how deep you’re going to avoid pain.  Lynn likes his nails short so I admit, I’ve drawn blood a few times and it’s a really bad feeling to see that red spot ooze up.  He also has a little anemia at times causing his nails and his skin to be similar in color so it’s not always easy to tell when I’m going, too, deep. 
Fingernails though are at least easy to file and cut but for some (and Lynn is one) toenail clipping can be very difficult.  Sometimes I think I need the strength of the muscle man at the circus to cut the nail on his big toe!  But just like cutting fingernails is important to keep his nails from hanging on clothes or tearing or to keep him from scratching himself (or me) accidentally, foot manicures are also important to keep socks (particularly toe socks like Lynn wears) and shoes from causing cuts to the skin from sharp nails.  Foot hygiene is also important because circulation to the foot is often impaired for someone who is immobile so you need to keep a close watch on skin tears, blisters, or wounds so terrible things like gangrene do not set in.  That’s an extreme but if you’ve ever seen a poor diabetic’s foot after a foot ulcer goes deep, you’ll never ignore foot care again.
Hair
Doing hair care, at least for us, is easy.  Lynn has very curly hair and all I have to do is shampoo, rinse and towel dry and he’s good to go.  I think about men who are caregivers for their wives or other female family members.  Learning to curl and style hair must be tough and probably must give way to simple styles for most.  I’m fortunate that Lynn’s sister who cuts hair for a living, cuts and styles his hair when she visits so we don’t have to go anywhere to get it done.  Just another reason I’m glad I’m caring for a guy because you can bet that if I had to care for a woman’s hair, I would have a standing appointment at a beauty salon for her for sure.
For me, learning to shave his beard was interesting.  Learning to shave so that all the hair was removed by cutting against the way it grows was not instinctual.  Also, learning to shave loose skin around the neck or tight places around the mouth or nose was challenging.  He’s growing a beard and side-burns for his son’s wedding and I have been a slow learner on how to shape his mustache and side-burns so that they turn out like he wants. Lucky for me again though that he’s not a girl and wants his legs shaved or his underarms.  To my male counter-parts:  I salute you if you shave legs, underarms, and pluck stray facial hairs.  Those things are important to a woman’s image but must be a pain for you to do.  Furthermore, if you apply make-up, there’s an angel in heaven smiling at you for your gift to your lady friend. Thank you for those efforts on her behalf.
Sweating the Small Stuff
Those are just a few of the little things in life a caregiver takes on that most people do automatically but which become a challenge when you’re doing them for someone else. They’re very important though and therefore, well worth learning to do.  I certainly hope when my day comes and someone needs to care for me, they will do the small stuff, too.

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The Healing Touch of a Baby's Smile

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Elijah

Shortly after we returned from vacation, my daughter started having a lot of right-sided pain just under her ribcage and nausea. After a week, instead of it getting better, it was getting worse.  She called me to “consult” on what I thought it might be (nurse to nurse).  I ruled out liver problems, thought it might be muscle irritation but knew she needed to get it checked out.  I told her to bring me the baby (2 1/2 month old Elijah, Eli if short) and go get it checked out. Being that it was the weekend, she and her husband went to the emergency room. A quick work up ruled out anything serious but they suggested her gallbladder might be the issue and recommended a follow-up to her primary care doctor.
Her pain was not getting better and was at times worse so she got an appointment the following week.  The doctor immediately scheduled a STAT CT scan.  As she was coming into our house to pick up Eli, she was hanging up her phone, “Mom, I’m going to have to have surgery!” 
Surgery….  Wow. 
I immediately went into “mama” mode, getting what details she had and reassuring her that we would be here to help her out.  Apparently she had multiple gallstones which were periodically blocking her bile duct.  If one lodged there, it would be emergency surgery.  Regardless, she needed surgery as soon as it could be arranged.  He also told her she could not “jiggle, bounce, or do any other jerky movements and could not carry heavy items.” Eli is a fussy baby and we do a LOT of bouncing with him to calm him down.  So, we came up with a way to reduce her risk of bouncing.
After I get Lynn through his morning routine, I run over to her house, about ten minutes away, pick up Eli, and bring him back to our house.  During the day I rotate taking care of Lynn’s needs with Eli’s often while handling requests from work. The first week wasn’t so bad.  My parents came up and totally took over the “Eli” job.  They were awesome and loved every minute of it; however, when they went home to take care of a few things, they found their floors had been flooded by a cracked toilet fixture and there was mold and ruined carpeting to address.  I felt awful.  Had they not been here helping me, their things would not have been ruined.  I also admit though I was very disappointed they could not return here because they had been wonderful with Eli and I really enjoyed their stay with us (they live five hours away from me). But when life throws you a curve ball, you take a swing and see what happens.
Actually, though it’s like Grand Central Station here with everything I’m trying to do, it’s really rather enjoyable.  Eli is a great diversion (in more ways than one).  He’s now three months old and loves to smile.  He recognizes me and my voice, as well, as Lynn and his voice.  Though Lynn can’t do as much with him as he would like, we have developed a way of allowing him to help out with “sitter duty”.  When Lynn is lying down, I put Eli under the arm that has limited movement and wrap it around him.  Eli is then lying with his head and back against Lynn’s side.  Lynn sings and talks to him and Eli coos and talks back.  When Lynn is in his wheelchair, I have a “rocking chair” for the baby that allows me to strap him in and it has a play bar over it.  Lynn keeps the rocker moving when the baby gets fussy and entertains him with songs and stories. I also often lift Eli so he’s eyeball to eyeball with Grand-dad for some heart-to-heart conversations.
Eli is like a drug for Lynn.  Before I go and get the baby, Lynn might be feeling tired and out of sorts.  Once I come back and Eli gives him a few of his famous grins and gurgles, Lynn just lights up!  He laughs with him and forgets for the moment all his frustrations and hardships.  He told me after the first day that we kept Eli that he was the best medicine he had every had.  He calls me to bring the baby back to his room for a visit, often throughout the day and each time, their bond gets stronger.
My daughter’s surgery is now scheduled for September 7.  She will not be allowed to lift Eli at all for three weeks afterwards so his Dad will drop him off here when he goes to work and pick him up when he comes home.  Mom might come initially but I expect it will be easier for her to resist the temptation to pick him up if she stays home. It will certainly be hectic but I’m actually looking forward to it. 
Having a baby around is healing.  He brings joy and the promise of bright tomorrows.  It’s wonderful to watch him discover the world though his hands and feet and see the amazement he experiences over things we take for granted.  It’s really a blessing of healing having him here. … (Though if you want to send up a few prayers for my sanity and stamina for the next four weeks, I wouldn’t object!)

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God's Blessings

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Often my journal entries discuss the challenges of being a caregiver but today I want to share a blessing–my church family.
Before Lynn was diagnosed with MS, he and I were very involved in our church.  We both were in choir; I helped produce drama enactments to support the sermon;  Lynn played drums for the praise band; we both played  hand bells; and we both were in dinner theater productions.  Three years ago, Lynn had to drop out of most of the activities he did due to fatigue and loss of coordination and strength.  Two years ago, I had to drop out due to my need to be home to care for him.  Since December 2010, neither of us have been able to attend church but are blessed to be able to attend through listening to the sermons on the church’s internet site.
Though we were well-known when we attended, there were many people who did not know us when we attended and I am sure that there are many more who have never met us or had any contact with our family since we had to stop attending church.  I share that fact to emphasize that the blessings we receive from our church are not due to a family connection or special relationship.  No, the blessings we receive from our church are due to the outflowing of God’s love for us through them. I think you will agree when you read what they have done for us.
First off, we are on the prayer list regularly and we get uplifting cards for all occasions and sporadically throughout the year telling us that we are being thought of, prayed for and remembered.  That is such a comfort when we live our lives in somewhat of an isolated fashion.

  • When Lynn started having difficulty walking, a group of men put in a ramp on the back of our deck so he could come in and out using the wheelchair instead.  Without that ramp, he would not have been able to leave the house for medical appointments much less any other trip.  The labor and supplies were provided by church members.
  • We asked who in our church could advise up on getting a handicap shower installed.  Within days, a shower had been ordered and two men from church installed it.  Not only was the labor free but the shower was provided by donations from the church members.
  • When Lynn was in the hospital two years ago and I was depressed because I could not decorate for Christmas, a group came over and decorated our home.  Not only did they decorate, but discovered that our refrigerator was on its last ice-cube and they got us a nice second-hand one that works wonderfully (without multiple containers to catch the leaks it produces like my last one.)  Last year several people came over once again to help with putting up decorations AND taking them down.
  • Groups have come over to rake leaves, mow grass, clean up debris after storms, and do all types of yard work.  One group came and tore down an old play house and a fence that was falling down.
  • One of the angels from our church cooks for us each month.  She fixes all of Lynn’s special diet meals and freezes them in individual containers so all I have to do is thaw out a meal when it’s time to feed him.  You can’t image (or maybe you can) how much I appreciate not having to take the time to prepare those meals three times a day.  Several members contribute to the cost of the food she prepares so that most of what he eats, doesn’t cost us a thing.  There is another Sunday school class that brings us bottled water every two weeks.
  • One of the members comes each Thursday to help Lynn with his writing (typing).  She helps him write his blogs or chapters in his book or whatever other correspondence he needs to get out so I can concentrate on my work.

If the church finds out we have a special need, they take care of it or at least help us find a way to meet the need. Every once in a while we even receive donations to help us with some of our expenses (which you know are a lot if you’re caring for someone with special needs.) I know there is much more they have done than I have listed here.
In fact, what lead me to write this was what happened while we were on vacation.  We came home to a house that had a new coat of paint, a newly stained deck, and fresh landscaping for my azalea beds!  A group got together to spend their time off this past week painting our house while we were on vacation!  What a blessing they have given us!
Our church, Gethsemane Church of Christ in Mechanicsville, Virginia, (http://www.gethsemanechristians.org/welcome/) is a God centered place of worship.  Their mission to follow Christ faithfully through word and deed and to demonstrate Christ’s love through action.  The blessings they have provided our family are not unique to us.  They have done the same for many other members.  If a member has a need, they try to help.  They are not a wealthy church or a large church; they are a rural community church made up of average people who love their Lord and each other.  We are truly blessed by their generosity and faith and by the Lord that they (and we) serve. 
I wanted to publicly thank them for their love and support over the years.  As a caregiver, I can’t do it alone.  As a person with MS, Lynn has much he cannot do.  But through the love of Christ demonstrated through these saints of the Lord, we are truly blessed each and every day. 
I hope you are fortunate enough to have such a church family as well.  Their actions are not about religion or a particular faith-based group but are instead a commitment to the Lord Jesus Christ, our savor, and our healer, who never forsakes us and who will be there for anyone who chooses to be his follower.  Thank you, Lord Jesus, for being there for us.

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Was That a Vacation?

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We were on vacation when I wrote this blog this week. I was not able to post a blog this week because, unknown to us, the condo we use changed their practice this past year and each home owner is now required to provide their own internet service to their renters.  The home-owner for the one we rented, apparently decided internet access was a non-essential amenity for their guests (I found out later that most initially believed that to be the case but most are changing their minds now with all the complaints).  Fortunately, the condo office allows you to come to their lobby and “borrow” access while there. Unfortunately, for some reason, I could not get my computer to work with their service (probably my limited knowledge of computers being the “fault” in this case.)
Every year I look forward to vacation and being at the beach.  Lynn’s son and fiancé, goes with us as well as my daughter, her husband, and this year we have the addition of our new grandson.  The family time is wonderful and something I really look forward to but vacations now are very different from years gone by.
First off, the preparation is different…all preparation, along with all the daily activities of our home-life are my responsibility.  Periodically, Lynn would provide instructions like…”don’t forget my small white fishing rod,” (which I forgot) and “I want to bring the red and blue weights to use to work out…no change that to the small and large gray ones…no I think the red and blue ones will be enough…” By the time I finished packing, I had ½ a suitcase of clothing for myself, my computer, and a few books (none of which I had the opportunity to read other than a few chapters in one) and everything else was about Lynn.  I brought an extra-large cooler for all his specially prepared food; clothes for hot, cool, cold, and warm conditions plus layers for in-between; exercise equipment; shower and toileting equipment; his medication and supplements (which aren’t a few); his peddler (plus a spare in case one broke); his foot massager; catheter supplies; nebulizer and supplies; spare wheelchair; spare cushion for power chair; charges for all aforementioned equipment; a microwave for our room; and many other miscellaneous supplies.  Yes, I packed our house.  I barely had room for us in the van!
Then the drive down is very different.  He used to do all the driving because I get very sleepy when I drive.  Now I do all the driving and just being the passenger is extremely tiring for him.  It’s a debate whether to stop and let him out of the van to rest or to keep going so he can lie down when we get there.  Since we were traveling with a new baby in the car behind us, we stopped a few times for feeding and coffee for me so I could stay awake before we decided to travel separately.  Once we got to the condo, it was time to unpack and arrange everything…no small feat.
It took almost two days for Lynn to recover from the trip.  During that time he needed almost constant attention…and he seems to think I’m the only one who can do anything for him.  By Monday night, I was in tears.  My family vacation was no more than me in a room with the door shut (because Lynn was cold) taking care of Lynn’s every need and him  being unhappy because he didn’t have access to the internet, the cable package in the condo was limited, and he felt lousy, exhausted, and miserable.  Plus he decided he would try standing up with the help of our son and son-in-law…which didn’t work at all, so he was depressed about that.  What a vacation!  
I finally spoke up and shared my depression about spending our entire vacation shut up in a room with our children in the next room but inaccessible to me.  He realized what he was doing and then it got better.  He came out of our room each night after that point for us all to watch a movie together plus I put in an indwelling-catheter two days and managed to go to the pool for an hour (where I slept).  In fact, I’ve spent a lot of time on this trip sleeping.  I think my body is trying to tell me something.
So after a rough start, things got better.  The others put in a lot of effort to make sure I had some “me” time.  I had to remind Lynn periodically that others, besides me, could help him when he needed it but he would better at asking others for help when I reminded him of that fact.  Plus on Thursday when he tried to stand up again, he actually did better.  He could not really stand but he was almost there, so he was more satisfied with his efforts.  We also watched “JAWS” together and had a JAWS breakfast in honor of the meal scene in the movie.  It was a very nice time of family sharing.
One morning we got up at 5 to go fishing but by the time he could get ready, the sun was too hot and that trip was cancelled.   We tried again the next day, skipping some of his morning routine, and he managed to be on the pier for about two hours before he had to come in.  He was too tired to hold his own rod though which was a disappointment.  He tried twice but just didn’t have the strength to control it.
Today is the day after we got home.  I’m exhausted and irritable from the unpacking and trying to get caught up.  He’s exhausted and irritable from the traveling and being very needy but I guess things will settle in soon.  It’s good to be home though where at least he can get on the internet to entertain himself and watch his favorite programs.
So, “Was this vacation?”  Yes, it was…and one was able to enjoy periodically.  Different from the ones in years gone by but one still full of family and love and occasionally relaxation…just different from what we did in the past.
… Just another adaptation that comes with being a family caregiver.

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"Cut! Take Two…"

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In the early days of my journey as an MS Caregiver, Lynn would fall, or we would get into a situation that was difficult and we would look at each other and laugh. We coped with a lot of our hardships by laughing at how bizzare the situation would become as compared to our lives pre-MS.  A friend of mine reminded me this week that when Lynn used to fall, I would pause for just a moment and listen, then call out to the back of the house where he usually hung out and say, “anything broken or bleeding?”  If the answer was, “no,”  I would just keep on with what I was doing and never miss a beat. 
I remember how difficult that was at the time–that is, to just let him fall and not immediately go to help.  That took a lot of will power on my part.  Now I find the opposite happening.  He will let me do almost everything for him if I don’t remind him to try it himself first.  I was wondering when that change occurred and I think it happened when he was in ICU for so long.  He couldn’t do anything for himself and got used to me doing everything for him.  Then when he came home, he was still too  weak to do much on his own so I continued giving maximum care.  Gradually over time it became a habit so that now, we have to consciously stop and determine when should I move his arm for him and when should he do it himself?  That was also when I began to tell myself that he was taking advantage of my being helpful.  Or I would say to myself, “he could do it himself if he would just try”…I think that’s also when we began to laugh less.
For example:
I got upset with Lynn this week over something that was absolutely not his fault. I was trying to take some type of device that cuts circles out of wood out of the electric drill.  It was in there very tight and now that my arthritis is so bad in my thumb joints, I have no strength in my hands.  So as I was struggling to get it out, it cut my finger. Just a small cut–didn’t really hurt much, but when Lynn tried to reassure me that it couldn’t cut me if I held it right, my feelings got hurt and I almost cried. I also got aggravated and curt in my comments and with an edge of hysteria to my voice, threw my hands in the air and said, “I just can’t do it.  Can’t you see that I just can’t do it?  I cut myself!  See? Right here. Why do I even try to do work with tools, etc. etc. etc.”  Lynn’s reaction then was to try to do it himself…which he can’t and I’m annoyed that he feels like he has to try and I know that he’s feeling bad because I’m feeling bad and downward we spiral….
Finally, I stop the spiral and explain.  “All I wanted you to say when I got cut was, ‘I’m sorry. Are you okay?'”  His response to that was, “Oh.  Why didn’t you say so?”  UGH! 
Later, I thought about what happened and why and here’s my insight….
When I got cut, the following thoughts went through my mind in rapid succession.

  • “Oops, I cut myself.
  • Oh, no.  Now I have a cut which will burn when I have to wash clothes and dishes in a few minutes.
  • Why do I have to clean up after his friends when they use his tools?  That’s just more work for me.
  • I’m stupid when it comes to tools. If I knew how to work with tools better, none of this would have happened.  I know how to use a drill.  What’s wrong with me?
  • He (Lynn) just expects me to do everything.  He expects me to do everything he used to do plus everything I need to do for him plus everything that needs to be done around the house and work full-time and do it all perfectly.  He doesn’t ever think about what I need.
  • He doesn’t care that I got hurt.
  • He doesn’t appreciate what I do.
  • My life is miserable and it will never be any better.”

All those thoughts went through my head in a matter of seconds.  Based on what I told myself, I went from a simple, “oops, I cut my finger and need a bandaid,” to, “my life is miserable and it will never be any better.”  Now if I had put the brakes on my internal conversation after the first bullet, I would have gotten the bandaid and moved on.  Instead I sulked for a while and made both myself and Lynn miserable for a while. 
None of those things I said to myself other than, “I cut my finger,” were true.  All the rest was just me feeling sorry for myself and telling myself a story to reinforce my self-pity. What a waste of precious time.  If I had instead just laughed and said, “what a klutz,” or “looks like the drill is working,”  I would have felt better in the long run, Lynn would have felt better, and we could have had a fun moment to share rather than sadness and emotional pain. 
So the morale of this blog is, “watch the stories you tell yourself.” 
I’ve got to get back to looking at the funny side of life more often. “Hey, did you hear the one about….”

"Cut! Take Two…" Read More »

911-Do you do catheters?

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One night this week, just about bedtime, I became very nauseated and started feeling really lousy.  It had the feel of when I’m about to have an allergic reaction to something.  I have lots of food allergies and I often find out about a new one though several hours of agony and being tied to the restroom.  I thought it might be that or food poisoning.  Fortunately, it turned out to be neither but it sure gave me a scare.
I, like most people, hate to be sick.  It’s miserable but usually if I have someone to bring me things, I just stay put in the bathroom, often on the floor on a blanket, till it passes.  As I was contemplating possibly having such a night I went between dread of being sick and panic as to what was I going to do about Lynn?
There were several issues.  The most immediate was that I felt like I couldn’t stay up another minute but still had to finish feeding him, giving him his nebulizer treatment, cathing him, and getting him ready for sleep.  With each request he made, I became more and more cranky and desperate to lie down.  I finally did, lying very still, breathing shallowly, and praying I would not be sick.  Thanks, God for granting that wish….
As I lay there in dread, the other struggle was what was I going to do if I did indeed get sick?
1.  What if I needed help?  Lynn is attached to a peddler at night so he can peddle when his legs get stiff. He could pull out of it but he also doesn’t usually hear me if I yell from the bathroom and he can’t get his wheelchair through the door to bring me anything.  Solution:  Take a phone into the bathroom with me.  Plan:  Get a phone for the bathroom permanently.
2.  He needs to be cathed several times a night.  He cannot urinate on his own. If I was too sick to move, who could cath him?  That’s where my mind went to 9-1-1.  I figure if a rescue squad could put in a catheter in an emergency, not being able to empty one’s bladder can lead to one, so the solution is to call 911 to get them to come put in a foley.  Did you know that if a person cannot empty their bladder that after a while they will go into shock?  The urine backs up to the kidney and then on toward overloading the heart and lungs.  It doesn’t happen immediately but it can cause a lot of pain and the shock comes long before the other parts. So I think 911 is a good option.
3.  If I’m sick for hours, I sure am not going to feel like taking care of him the next day. Lord, give me strength!  I know I would try to push through though.  I would certainly have to call for help I expect but there are so many things family and friends just don’t know how to do and I still don’t have an arrangement yet for intermittent nursing help.  Got to get back into looking for that again.
Just so much more to consider when someone is so dependent on you for everything they need.  I also know that emotionally Lynn would be devastated if I was very sick.  He gets so afraid if I seem to be sick or hurt.  He worries about me but he’s also very afraid of what would happen to him.  He says all the time that he would give up and die if I was no longer around to help him.  Talk about pressure…
Anyway, I dodged the bullet.  Whatever was wrong finally went away.  I felt yucky the next day but functional so it was a false alarm, thank God.  So once again we were blessed to avoid another crisis and managed through what we had.  Aren’t we fortunate to have such a caring God to take care of us that way? 
Yes, we are….

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The Blessings of Children

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Elijah Gregory moments after his birth

May 27 at 3:51 p.m., my daughter gave birth to a beautiful son, Elijah Gregory–Eli for short.  I was fortunate enough to share in the experience with her and her husband and at the moment of Eli’s birth, my daughter weep tears of joy, as did I. 
The decision to have a child was not easy for her.  Though she does not have MS, she has a chronic health condition that has dominated her life (and mine) since she was five years old.  The condition has required multiple medication adjustments, much lost time from school and work, and interfered on more occasions than I can remember, with being able to enjoy plans made.  It made her different from her peers, which created many difficulties for her as a teen.  There have been many tears and many discussions about the quality of her life…but we made it through those times.  Her condition is now controlled on medication that she must take every day for the rest of her life and it still is a factor in all her decisions but she has matured into a beautiful and kind young women, with a deep sense of responsibility, and wisdom beyond her young years.  She is very fortunate in that she also has a very devoted husband who is unbelievably understanding and supportive of her.  Now he has taken over my role as her “rock” and together they face their future.
I share all this as background for her decision to have Eli.  She knew her pregnancy would be difficult and there was a risk that the medications she was on could cause birth defects (thankfully that does not seem to have happened) so she worked with her doctors to prepare her body, her mind, and her spirit to take on the challenge of having a child.  For her that decision was the right one but for some people with chronic health conditions, the prospect of reproducing and sentencing a child to the same possible condition is not something they can do.  Neither decision is wrong; both decisions are right…for those individuals.
As for my daughter, she has a strong faith in God and has learned to rely in Him to help her through the difficulties of this life.  Though she certainly does not want to invite hardship, she also knows that her strength comes from the courage He has given her.  Her life experiences, though very difficult, have prepared her to face what may be ahead since she probably won’t know if Eli has her same condition for several years yet.  However, if he does develop it, who better to help him through it than his mother who can not only empathize but coach him in how to cope with it?  That is true for any person thinking about having a child that might inherit a serious condition.  There are some conditions, that I am sure would cause her (and me, too, if faced with the choice) to decide to adopt.  In fact, she may decide to do that next time.  But it’s okay either way.
My step-son knows that he may very well develop MS as he gets older.  His father and grandfather both had it so his changes are significant. When he asked his girlfriend to marry him, she and I talked about their having children.  They are fully aware of the risk of inheritance and that he may end up as his father but we also know that new medications and treatments are always in development.  BECAUSE of his father, he’s prepared.  He knows what things seem to reduce the risk and what to stay away from; he knows the symptoms and when to seek evaluation; he will know what to do if the time comes that he has to face the prospect.  Plus, like with my daughter, he will know that his father and I are here to help out anyway was can and that God will bless them whatever the decision regarding children may be.
I belive that each challenge we face in our lives prepares us for what lies ahead.  We gain strength, knowledge, and courage with each obstacle we overcome.  Life is hard…no doubt about it.  I truly wish and have prayed often that these burdens be removed from Lynn and from my daughter and that He would protect our other children from them as well. However, I know that we are not alone.  I know that this time on earth for us is like a speck of dust compared to eternity in heaven.  I know that although we have trials and difficulties and get depressed and hurt that I love this life we have.  I feel so blessed to be married to Lynn and to have two wonderful children of my own and an awesome stepson.  I love the partners my children have chosen to share their lives with. I can’t wait to spend time with my grandson and to share with him all we have learned that might be helpful to him on his journey through life.
I am very thankful my parents decided to give me life.  I am very thankful that God blessed my decision to have children.  And now I’m thankful that God has given my daughter the courage to face the unknown and to share her love and commitment to Christ and to her family with a child.
Yes, for me and my family, having children is truly a blessing for which we are thankful.

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