Relationships

How caregiving or MS affects the interpersonal relationship

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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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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"I Know Someone With MS…"

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When I tell friends, family, acquaintances, etc. what I’m up to these days (i.e., being a full-time caregiver for my husband while working full-time from home) it’s amazing how many people either have someone with MS in their family or know of someone with MS. What’s even more amazing, however, is how different each of their stories are.  Often how someone views the condition is directly related to who they know that has it.  For example:
“My friend’s sister has MS but they’re fine”
In this situation, they really have very limited information about MS because as we know, no one who has MS is “fine.”  Each MS victim struggles with something periodically, especially during periods of stress. Often they battle fatigue, heat sensitivity, weaknesses in functioning in some aspect of their lives either full-time or temporarily. So if the person you are talking to only knows someone who is “fine” then they have difficulty comprehending the nature of the condition and the potential restrictions imposed and may even wonder, “what’s the big deal?”  They just don’t get the condition.
“My cousin has MS and has to use a cane.”
If they know someone who has mobility issues, then they seem to have an idea that someone with MS has struggles to overcome on a regular basis.  They understand there are special needs and often associate MS strictly with mobility challenges.  Often they have no idea that MS can affect any function of the body either completely sabotagizing it’s ability to react normally or at the very minimum, creating an annoyance on a regular basis.  They have no idea that a person’s bowels, bladder, eyesight, memory, sensory stimulation, hearing, speech, eating, …you name it… can be affected. There is much they do not know but they at least have some insight.
“My sister has MS. What an awful condition.”
Once it’s in the family though, they realize just how devastating the condition can be.  They understand that the person with MS struggles each day to be “normal” to be able to have a “normal” day and fit in like everyone else. They realize that one minute the person may be fine but the next they are so exhausted they can hardly function and where before they could walk alongside someone, once they hit that point that fatigue takes over, they rarely can keep up. They know that some days they feel like a heavy weight is sitting on their shoulders and other times they are optimistic and hopeful.  They know that each new “odd” sensation raises the question of, “Is this an exacerbation?”  “If it is, how bad will it be this time and will it go away or linger?”
I see one of my roles as an MS Caregiver to be that of educating others. In the grocery store, at work, wherever I meet someone who asks about Lynn and his condition, I try to clear up misperceptions and provide insight into what MS is all about and most importantly, that it’s different for every person they will meet.  No two people with MS seem to be affected the exact same way.  Each MS person knows they are unique in their personal struggles but at the same time they are a member of a larger community who has to learn to cope each day with what that day brings. 
That’s one of the reasons why I write this blog, too.  I want those who read it to know there are common struggles but each person is unique. Don’t look at Lynn if you’ve just been diagnosed with MS and believe you will be wheelchair dependent and unable to fed yourself in less than ten years after being diagnosed because that is probably not the case. I tell anyone who listens that the only way to deal with MS is to take each day and each minute in that day for what it brings in that moment.  Don’t look too far ahead or focus on what was left behind; just do your best with what you have that day and keep the faith (literally) that God will give you the strength to carry on through one more day and one more triumph.

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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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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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Family of bloggers

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When I first started blogging I had no idea what I was doing. I had heard about blogging but since I don’t have a lot of free time, I had not read many blogs.  Then while Lynn was in the hospital, I was talking to a nurse whose husband also had MS and we talked about how difficult it was to go to support groups.  If you’re the primary caregiver, getting away from home for very long is a major effort so belonging to a support group, while it might be beneficial, was just one more thing I would have to do without.
I tried Facebook at first to see if I could connect to other caregivers but to be honest, I’m just not that sociable.  I’m not a “one liner” kind of person (obviously as my prior blogs demonstrate) and just giving a “shout out” to someone doesn’t feel like we’re really connected. Therefore, I rarely even go to my Facebook account.
I realized I wanted to “talk” to people who could relate to what I’m living. I thought there might be others out there who were going through the same thing and who might want to also connect by responding to what I had shared.  That’s where the idea of a blog grew….and it’s exactly what I needed.
When I write this blog I feel like I’m actually talking to someone.  I don’t know most of you but if you’re reading this, it may be because you know someone with MS or you have had to care for someone who could not care for themselves, or you otherwise related in some way with something I’ve said.  That gives us a connection…a sense of community.  When I get comments back on something I’ve written, I feel understood and that I’m not alone in what I’m doing.  Blogging truly has become a virtual support group for me.
What’s really cool is that sometimes someone will actually send me an email and they share their story with me as well.  I feel like I have friends that really get it because they are really living it, too.  We’ve become a family of caregivers–people who care enough to give of themselves.  So thank you for being there for me.  It’s really very healing for me to share my life with you. 
PS, guess who has also started blogging?  Lynn. He has just done two so far but he saw how much I enjoyed it and is trying it himself; only his is about writing.  You can check his out at http://authorrisingtide.wordpress.com/

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What a roller coaster!

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Just when you think things are getting better, they start rolling down hill again…
Lynn’s dietician put him on a special MS diet with the purpose of improving absorption of nutrients and more importantly, iron, since he struggles with iron deficiency.  He has to eat three cups of green leafy vegetables per day, three cups of vegetables high in sulfur (broccoli, brussel sprouts, asparagus, etc), three cups of bright-colored vegetables or fruit and the meats each meal must be grass-fed meats or seafood.  Seems like I’m feeding him all the time!  And talk about hard to find…grass-fed meats are not at most grocery stores so the saint who makes Lynn’s meals for him had to really shop around to find them.
Anyway, it doesn’t seem to be working.  Instead of feeling better, he’s much worse over the past week.  I’m sure his hemoglobin, iron, and ferritin levels must be dropping.  He has absolutely no energy, he’s cold all the time again, and just miserable.  I look into his eyes and he just looks sick and weak.  So, I’ve put in a call to get an appointment with a hematologist to find out if something is wrong with his blood. Meanwhile the dietician is working on getting tests to see if the issue is the permeability of his intestines causing him not to absorb what iron he’s taking in.  Unfortunately most of those tests are not covered by insurance so we’re waiting to see how much that will be.  Of course, we will have to do the testing because we have to find out what’s wrong. He’s miserable and when he’s miserable, so am I….Not because I’m such a sympathetic person…no I’m no saint…I’m miserable because he needs constant attention and my patience over doing the same thing over and over is limited.   Like now.  I have to go cath him and I just did that less than an hour ago, and the hour before that…!  Ugh…
I was hoping now that I need to try to go into work one day a week that he would be well enough to make this process easy but when he feels bad and needs so much attention, it’s more difficult.  It went well this week but I was only gone from 7:30 until 11:30.  His mom stayed with him.  Next week my friend will stay with him and I’ll probably be gone a little longer.  He’s been a bit depressed about me going back.  He feels that I’ll be so glad to be away that I’ll want to go in more and more and to be honest, I expect he’s right.  It was actually very nice to be among the working again and to not constantly be interrupted to do something totally non-related to what I was trying to accomplish. 
As tired as I expect I’ll be on those days, I’m looking forward to it although I admit I feel guilty about that.  I know how much he wants me to be here and I know I can probably give him better care than anyone else but I really need a break and some time to myself.  He reminds me of my children and how they would cling when I left them at daycare when they were young. I always felt guilty to walk away when they were clinging or crying–that is until I got to my car.  When I drove away, it was a relief not to have the pressure of the crying and clinging and I admit, that’s how I feel now–relieved to be away.
I hope this works out–my going back to work–but I see trouble on the horizon.  If he’s got a blood disorder then it may be a long-term problem that makes him more difficult to leave.  If it’s malabsorption; hopefully medication will fix that.  I don’t know what it is but it’s something and I sure hope they figure it out soon.  It’s time to move on to some healthy days….
 

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What happens when the caregiver gets sick?

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I picked up a magazine as I was waiting for Lynn to have an MRI last week and read an article entitled, “What happens if the caregiver gets sick?”  It caught my eye because I’ve allowed that question to surface just on the edge of my consciousness several times but each time it comes, I rationalize that I’ll handle it when the time comes and move on.  I realized,  however, when I read that article that I really need to do something other than just assume it will all be okay. 
The article commented on two different scenarios–what if the caregiver got sick and what if she died.  I had thought about what if I got sick…Lynn’s care would be taken over by our family members, right?  But then I got to thinking, “what if I was rushed to the hospital and didn’t have time to get everything set up for them in advance?  What then?”
Wow, that’s scary to think about.  Lynn could not go in the ambulance. Who would come stay with him?  There is no one close by but there are people whom he could call to come.  But if something happened to me, emotionally he would fall apart and I’m not sure he would know what to do.  Let’s assume I was incapacitated and could not communicate for a while.  No one knows what medications to give him when. My daughter is a nurse and could cath him but what if he needed more supplies, plus she works full time so she could not stay with him? The children are vaguely familiar with Home Health, but not who to call. Thinking about all that, I realized I really need to develop a plan in writing that communicates the what, when, who, where and how to make sure someone could take over in case I’m not around.
Then what if I died? Lynn says, if I die, he will too, just from depression and giving up and I think that might just be true for him.  He would be so depressed, he would become non-functional. Therefore, no only would he need care but he would be in no shape to help anyone figure out what he needed.
I realize I need to get our wills updated.  We had them wills when the children were little but we need to update that now that they are grown.  Lynn would not be able to figure out who to contact related to life insurance and forget him probating a will…he would not be capable.  So, we need to find a lawyer to re-write the will who will also agree to probate the will and get our affairs settled. I also need to write out all our information for our family to use. 
This stuff is not fun to think about but it’s really as important as what I do for him every day.  I put it off because I think I will have time tomorrow, or next week, or next month and besides I’m healthy.  But what has health got to do with it? Just this month, I have known of two deaths of healthy people my age or younger from unexpected events.  It happens and we do not always have time to prepare.
So my New Year’s resolution (a little late but at least I’m thinking of it now) is to get our affairs in order.  As with all things, it will be up to me to do this and even though it’s one more thing to handle, it’s something I really need to do.  I dread it though.  It’s going to take a lot of time and thought and I had just rather avoid doing anything I can put off that is not essential.  But this is..essential, I mean, and I have to make myself do this both for my own peace of mind and for Lynn’s safety.  Ugh….

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Family Gatherings

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Helping Lynn during family gathering

This past weekend, my parents and siblings as well as our children and theirs, came to our house to celebrate Christmas.  It was a wonderful time; lots of laughing and sharing…as well as good food.  We rarely get to see most of them since Lynn has become wheelchair dependent so these times together are especially precious. 
Changing where and how you do things is one of the adjustments that comes with being a caregiver. Since most homes are not designed for access and steps or narrow doors make it difficult to negotiate around most homes, the places a wheelchair dependent person can go are rather limited. The result is that you either become isolated from your former friends and family or you open your open to them coming to you.  That’s what we do; we have everyone to come our house.  It’s funny but before Lynn became disabled, I used to really stress out and have to have the house clean and neat with everything looking great.  Now, I’m just glad they are coming and have learned to let it go…somewhat.  I still like to make it look nice but I’ve also learned that if I don’t get the chance to do that; everyone understands and it’s no big deal.
Lynn was really looking forward to this year’s get-together.  He has not been able to participate in our  family get-togethers for the last two years due to some aspect of living with MS. This year he thought would be different, but it didn’t turn out as well as he had hoped. He realized shortly after he got up yesterday that it was not going to be a great day.  After breakfast he had to lie down because he was already exhausted.  He rested about an hour and he got up just before everyone got here so that he managed to great everyone and participate through lunch.
He was there for the welcoming greetings and for my daughter’s big announcement.  You
Baby's Ultrasound (profile shot)

see, he and I had known since October that Sarah (my daughter from my first marriage) was pregnant but she asked that we not tell the family so that she could do it herself.  Boy, was that hard but we managed. It’s been especially hard because she has had a difficult pregnancy so far; excessive nausea with a lot of weight loss and at least two hospitalizations for dehydration.  She was out of work for about six weeks and used up a great deal of their savings so it’s been hard not to share with our family the struggles she’s been having.  She’s better now but still on an infusion pump for nausea. 
We’ve been talking for a couple of weeks about how she would make her big announcement.  Since the pump is rather obvious, she had me call her when everyone was here so she could come in last with her coat on.  Then she presented a special Christmas present to my parents (her grandparents).  It was an oranament that she had affixed a picture of the baby’s ultrasound scan to.  It took them a minute to figure out what it was but when they did, everyone was very excited.  It made the day extra special, and Lynn was able to be there for that. 
He also managed to eat a pizza that was especially made for him by our church friend who cooks his gluten-free diet entrees.  Often when he’s this tired he cannot feed himself but he didn’t want me to feed him in front of everyone.  The pizza was the perfect solution. Because he could hold the slices, he was able to feed himself successfully, plus since everyone else was also eating pizza, he fit right in.  (Besides that, the pizza they made for him was wonderful!)
Right after lunch, the family gets together to play games.  It’s a way for all of us to be together and share in an activity of fun regardless of the age of the players. We divide up into teams and have a lot of good-natured competition.  Once we started the games though, Lynn had to lie down.  He was absolutely exhausted.  I put him to bed and kept the baby monitor close so I could hear him when he needed something.  For the rest of the day, I divided my time between taking care of him and coming back to the party. Even when he woke up, he was feeling too bad to join back in.  I attached him to his peddlar and would come back about every twenty to thirty minutes to make sure he had what he needed, give him either hot tea or cold water depending on what his body temperature was feeling at the moment, and cathing him since he was drinking so much.  He was very disappointed but felt so terrible that there was no way for him to join in. 
Overall this year’s gathering was better for him than last year’s by far but once again he wasn’t able to really fully participate… and neither was I.  I’m fortunate that my family just steps in and picks up the slack.  They put the food together and set everything out.  They also cleaned it all up and I came out of his room to a clean kitchen with everything put away.  They really try to pitch in with whatever they can do.  I really appreciate that because it allows me to also enjoy the time. 
When you are a caregiver, it’s like when you have small children–you never really get time off except that with children, it’s a little easier to get a sitter.  When the person you are caring for is 6 foot tall, weights about 200 lbs, and can only do very limited things for himself, finding a sitter is not so easy.  And while the person is an adult, you find that you watch over them in much the same way that you watch over a child.  You are constantly watching to make sure they do not run into anything with the wheelchair, you anticipate what they need so that it’s within their reach or you go get it for them, you watch for signs of distress…are they warm enough?  comfortable?  do they need to go to the bathroom? did they get enough to eat? and on and on.  I ate my meal standing up next to him so that I would be close in case of a problem.  I also am always looking around to see if he has a pathway that’s big enough for him to get into or out of areas without knocking over something or someone.  As a caregiver, you must always think ahead and plan for the what ifs?
All in all though, our family get-together was great.  I had time with everyone.  I managed to eat and snack and participate in the games.  I managed to be both a part of our family fun and the companion to Lynn that he needed…so it’s all good.  It’s different but it’s good; just like so many other aspects of this condition.  
I have three more celebrations coming up this week.  Thursday someone is staying with Lynn while I go out with my staff for lunch to celebrate the season.  Saturday night our kids and their significant others will be here for dinner and then Sunday, Lynn’s family will be here for lunch.  I am looking forward to it all and hope that you all will be having similar good times and good memories. 
Merry Christmas.

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Christmas with Family

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My Mom and Dad arrived today in anticipation of our family get together at our house on Saturday with my family and my brothers and their families.  Everyone comes to our house now because Lynn’s powerchair and other equipment do not fit as well into a home that is not equipped for them. 
For years we all traveled to Franklin County located at the foothills of the Blue Ridge Mountains.  I really miss seeing those mountains with the snow caps through our kitchen window each morning.  Richmond has hills but those Blue Ridge Mountains are awesome with snow on them.  Every once in a while there would even be snow at my parent’s house when we went and that really made it feel like Christmas.
My brothers and parents are the ones who offered to start having Christmas at my house a few years ago.  I was worried about going to my parent’s home that year due to Lynn’s mobility issues and wondered how to help Lynn get around when we were there but did not share my concern.  However, they realized the struggle and offered to change our tradition and come here instead.  I know that was a sacrifice for everyone because, after all, home for Christmas is where you met Santa years ago, right?  I really appreciate them giving that up and coming here.
This year is especially special.  For the last two years, Lynn has been home but too sick to participate or really remember any of the activities.  Though he’s really tired from the ferritin deficiency, this year he should be able to participate.  He’s very excited.  He has decorated his wheelchair with blue LED lights (or rather I put them on with him telling me how to do them) and we have a small Santa hat and scarf on the back of his headrest.  It’s really very cute.  He even has a special Santa hat that lights up and bounces like a spring and blue and white toe socks to wear.   I’m jealous.  I don’t have anything festive to wear but then maybe I’m really okay with that. 
Several people have helped me decorate this year.  My brother, sister-in-law and niece came and got it started two weeks ago.  Then I did a little and a group from church came and decorated outside and finished up inside.  I must say, it really looks nice around here. It may stay up a lot longer than Christmas though since taking it down is not my favorite thing to do!
I love Christmas decorations.  I admit I wouldn’t do as much as we did this year if it was just me doing it but I’m so happy having so many Christmas items sitting around and having all the windows and doors decorated.  There is just too much to do to have spare time to decorate by myself but I’m very blessed that so many people seem to know how much Christmas means to me and came out to help me have the enjoyment I would not have otherwise.  God has blessed me with so many wonderful friends and family members.  I am so fortunate.
Another way our traditions have changed is the food.  My mom used to fix a huge spread.  She made everyone’s favorite food and had about 10 different desserts to pick from.  Really! It was awesome.  She still brings several desserts but we don’t cook on the day we celebrate anymore–we order pizza!  We all love it and not cooking or needing to clean up gives us all more time to visit. 
We don’t exchange presents either.  Most of us are on tight budgets. Instead we play games and win prizes.  We don’t really need the prizes but they are fun none the less.  We divide up into teams and all ages play together.  We have lots of good laughs.
The main joy of Christmas is the love of family and the celebration of the birth of our Saviour.  Traditions are a fun way to celebrate but when they no longer work for you, then it’s time to stretch them a bit and make the love and joy of the season be the focus rather than doing something that takes the joy out of the season.
I hope you get to celebrate with your family.  Christ’s love for us was so strong that he gave up his kingdom for a time and all the comfort and joy of home to come be with us so that we could live forever, if we only choose to follow him.  That’s the true spirit of Christmas and the joy and love of family together reinforces that same love.
May God bless each and every one of you this Christmas season. 
Merry Christmas!!!

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Whose life is he living?

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Last night I talked about the fact that I felt that I was not living my own life and that I was lost in the caregiving role.  Tonight I want to explore the other side–his side. 
Lynn sits up at night to sleep so that he will not wake me up to put him on his peddler when his legs get stiff.  He has given up sleeping in a soft bed until he can create a device that will keep his legs moving at night.  Therefore, when he wakes up he decides if he needs to be cathed or if it’s just stiffness that caused him to awaken. I’m sure he looks over at me sleeping comfortably in the bed under my covers and tries to delay waking me as long as possible.  Often when he does, I groan and ask, “are you sure?  I just cathed you at xxx.”  He is dependent on my getting up when he asks so that his bladder can be relieved.  His relief is contingent upon my cooperation and my timeline.
When morning comes, he lies down while I shower and eat breakfast.  Even if he is stiff and needs to move around, he has to wait until I am available to get him up.  His comfort is dependent on what I’m doing and when I can come meet his needs.  If he has an itch or gets cold and needs covers, he can call out for help, but he can’t take care of it himself unless I’m willing to be his hands.
When it’s time to get dressed, I pick out his clothes and dress him.  I often give him the choice of what to wear but putting it on so that it feels comfortable and fits right is up to me.  If the seams aren’t right or something is twisted and I don’t fix it, he has to wear it that way.  Ever worn a twisted garment for very long?  It’s very uncomfortable and annoying, but I can’t feel his discomfort so how do I know?
When he wants to eat, he has to wait for me to fix it.  I season it according to my taste which is nothing like his.  Though I try to match what he likes, I can’t taste through his taste buds so the flavor of his food is through my taste buds.
When he wants entertainment, unless the remote is within reach, he has to watch what is on until I can come change the channel or put in a new CD or DVD. 
If he’s cold or hot, he needs me to change the thermostat or bring/remove blankets to adjust his comfort level.  He’s anemic but I’m often hot, have a fan blowing, or lowering the temperature when he’s got bone-chilling coldness to handle.
I manage his medical appointments, often deciding with the practitioners the course of treatment.  I arrange his living space, take him where he needs to go, or buy what he needs to have–all of which is done according to my taste, my timeline, my skill level.  He cannot use his hands or his legs.  He cannot change his own position.  All his comfort is contingent upon my being able to help, my understanding of what he needs, and my willingness to do it.
As is true with each of us, inside ourselves we are still young, still able-bodied, still filled with the hopes and dreams we have always had only now that he is disabled, he is a prisoner in his own body that will not respond to what his mind still believes it can do.  In order to live his life, he has to live through me. 
So last night I was lamenting about living my life through him but he can lament the same.  We live our lives through each other…but then isn’t that what a married couple does anyway?  What God has joined together….well in our case, we are truly one.

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Whose life is this I'm living?

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Have you ever wondered whose life it is you are living?  Sometimes I wonder if I exist anymore. Some days it seems that I only exist to be Lynn’s assistant.  I do not have a life of my own anymore.  Sometimes I try to have one but when I do, I just become frustrated with trying so I try not to try.  I also wonder who would I be if I was not providing care to Lynn?
When you are a caregiver, your entire life is wrapped around the person for whom you are caring. You decide what time you have to get up in the morning based on what you have to do for your loved one.  Here’s how today went for example.  I wanted to attend a meeting today, in person, at work.  In order to do that I had to make sure I had someone who could come in to stay with Lynn.  I had to plan for what he would need while I was away and I had to calculate how long I would be gone, what else I might be able to fit in while I was away, and what he would need while I was away.  I set my clock to get up two hours before I had to leave. I  got up and put him to bed while I showered (he sits up to sleep at night so he can peddle if he gets stiff).  Putting him to bed takes about 20 minutes.  I showered, blow-dried my hair and put in hot curlers. I didn’t apply make up or put on my clothes because I knew they would get messed up as I performed his morning care.  I got his medicine ready and part of his breakfast and went to get him up.  I got him dressed, and brought him into the kitchen to take his medicine while I ate breakfast, then I took him to the bathroom, catheterized him, redressed him for being up all day, brought him back to the kitchen, fixed his breakfast.  He fed himself while I brushed my teeth and applied makeup.  Meanwhile he kept calling me to help with things he was doing.  I was supposed to leave at 10 and did so finally at 10:15.  Not bad; I’m often later.
Today I was able to sit through the entire meeting without being called away.  I was actually able to assume my “worker” role and learn something new.  I was able to talk about something other than MS and to do something that did not involve caring for Lynn for an entire 1 1/2 hours. It was refreshing.  Then I left to go home.
On my way home, I had to stop at Walmart to get some things we needed, go to Krogers to get his medicine, look for a movie he wanted to watch at Foodlion, and make two other stops.  He called me as I was leaving Walmart to ask when I could get home.  Knowing that meant he needed something as soon as I could get home, I skipped a few planned things and headed home.  When I got home, I resumed caring for him for the next two hours and then put him to bed.  Then I resumed working till he woke up.  It’s always a balance between what he needs, what I need to care for him, preparing to care for him, cleaning up afterwards, and planning ahead.  Whatever a caregiver does, he or she has to consider the impact on the one being cared for.  No decision is made in isolation and whatever you might want to do, those plans are contingent upon the other one’s needs. 
My office party is next Thursday.  I’m hoping to go but I know that I can’t be counted on to be there.  If I can’t find a sitter or if he’s sick, I can’t go.  His needs have to come first; just like caring for a child.  I often feel like a single Mom again because it’s the same now as when I was caring for two young children on my own.  Usually at my age, you’re able to start living your own life again but not so if you’re a caregiver.  Your life is not your own.  Your life is lived though the life of your partner or “care-ee” and that’s hard to adjust to at times. 
I have chosen to give up my life to care for my husband.  It’s what I want to do and it’s what is best for him but it doesn’t mean that there aren’t times that I want to just escape.  I would love a day off –a day that I’m not rushing to get what I need done; a day to just relax and be away but in order to get that someone else has to be here and everyone else has their lives to live as well.  I have to ask for help so often that to ask for just a day off seems rather selfish; I already ask a lot from them. I have a lot of really great family and friends who are here to help on occasion so I’m very fortunate.  But I admit, that sometimes I would like to just get away and be me for a while…whoever that is.

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Helping with Lynn’s Career

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As I mentioned in the page called, “Lynn’s story,” he soon became unable to work in his chosen profession as a carpenter after he was diagnosed with MS.  He was in his 40’s at the time and wanted very much to continue to work.  However, his physical limitations and his fatigue made working in a physically demanding job impossible. So he looked for other options and discovered he had a talent for writing.

Rising Tide available from internet bookstores

Lynn has written three books and is on his fourth.  Only one has been published so far, Rising Tide.  His publisher did a great job of supporting him during the editing and publication process; however, they do not do a great deal of marketing the book after it is released. They sent out the initial press release and then sent him information about how to market the book himself through book signings and giving talks.  They pretty much leave it up to the author to promote himself.
That’s fine if you can travel across the country or have the energy to do talks and book signings but it’s very difficult for Lynn to do that now. Since we do not have a way to transport his powerchair, he has to use a manual wheelchair for trips.  It’s not very comfortable for him after about an hour, especially since he cannot adjust his position himself. Then there’s the difficulty actually signing a book.  He puts his signature in the forward but truthfully, it’s a scribble.  Also, he has to be catheterized intermittently.  He can’t do that himself which poses a problem in a public area.  Do I take him into the ladies’ room or do I go into the men’s room?  Most public places do not have a one-room restroom where we can  into it together.
So… instead of going “on the road” he’s marketing to book clubs around the country by email.  I’m very proud of him.  I’ve written a draft that he can copy and paste and he searches out book clubs and sends them information about his book himself.  He offers to send them a free copy to consider for their club to read.  It’s a very slow process.  He’s sent out over 200 offers and so far we have mailed out 10 books.  Most don’t respond but if he keeps at it, he will eventually get his book out into the book reading community and, who knows, maybe that will generate book sales.
What I do know though is that it gives him purpose each day. He has a job to go to now.  He can only tolerate doing so much each day, but it gives him something to look forward to when he gets responses and it gives him work to do.
On the other hand, it also gives me work to do….I type the drafts, I record where he sends letters on a spreadsheet, I mail out the books, respond to any emails he gets, help type in information if needed… Whatever he does, I have to be part of it for him to be able to do it.  Many people who do not have experience with being a caregiver, do not realize that there is no part of that person’s life, hobbies, interest, care that you do not take part in.  And while I want very much for his writing to be successful, at times, it just becomes one more job for me to do.
I’m keeping my fingers crossed though on this marketing campaign.  If he could become known and his books provide him some income, I might just be able to get that van I want.  : )    Want to buy a book?
Seriously though, check it out if you’re interested.  Go to his website for more details www.lynnsteigleder.com   It’s a good read.

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Comfort in the face of the earthquake

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Donna and Lynn gazing at each other 2013

I’ve never experienced an earthquake before.  It was a really eerie feeling to have the air and ground moving around me.

I was working at my desk and Lynn was working in the back room at his computer when it started.  At first I just thought it was dynamite being used to get rid of stumps or someone doing construction but it went on way too long for that.  I knew fairly quickly it must be an earthquake and became sure when it didn’t stop.

I admit I was spooked.  I wondered if things were going to start falling (i.e., trees, shelves, whatever).  I quickly looked outside for falling trees (we live in the woods) and was relieved to see none; then I yelled for Lynn.  “Are you okay back there?”  He didn’t answer right away so I quickly went to his room.  He was deep in thought in front of his computer totally ignoring the earthquake.  “Are we having an earthquake?”  “Yes,” he responded very calmly with a smile.  “Do we need to do anything, like get in a doorway or something?”  “No.  This isn’t that bad.  It’s okay.”  He was so calm that I immediately became calm, too.  I felt the comfort of his presence and his assurance.

Being the one who handles almost everything these days, I forget sometimes that he is still my protector and my comforter.  It’s nice to have that reminder.  It felt good to let him be in control for a while.  I miss that.

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We have MS

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You will notice as I write these blogs that I always talk about “we”–  “we were in the hospital,” “we are learning to live with xxx.”  I don’t mean to minimize that Lynn is the one with MS and he is the one who ultimately has to deal with the frustrations, pain, discomfort and significant changes in his life, but he was not diagnosed with MS alone, WE were.

 What happens to him happens to me.  When he can’t move, I move for him.  When he needs information, I get it.  If he needs equipment, I find a way to get it.  If he gets upset, I deal with the emotions.  If he wants to get from point A to point B, I get him there.  So Lynn is not the only one with MS; I have it too.  I live with the frustration of being housebound most of the time.  I live with the fact that he needs to be catheterized every two hours so I can’t go away for long.  I live with being interrupted every few minutes all day and night to help him do what he needs to do. My life is no longer my own–my life is now dedicated to making his better and bearable.

So if you wonder why I refer to everything that happens to him as if it happens to me too….it does.  Just in a different way, but I have MS too.

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