Relationships

Second-Hand MS

/

Before Lynn was diagnosed with MS, my experience with the condition was from a distance.  I knew of a third cousin with it that family members talked about in sympathetic tones of doom.  I had a few encounters with colleagues who had MS and who shared some of their struggles with me when they asked for my assistance in obtaining a reasonable accommodation (I work in Human Resources) so they could perform their jobs successfully.  I remembered some information from my nursing training twenty-five years previously but it was mixed in there with the rest of the chapter on neurological conditions so I wasn’t sure if I was remembering symptoms of MS, Muscular Dystrophy,  Myasthenia Gravis, or something else. I knew enough to know that I needed to learn more.
Our first appointment with the neurologist was a little over-whelming.  We came home with a bag full of literature to pour through to decide which medication he might want to try, the option to participate in a study, and several pamphlets that basically were along the lines of, “so now you have MS…”  Lynn didn’t want to have anything to do with any of it.  He gave it to me; said, “tell me what you think,” and turned his back on the entire thing.  At that point, I believe he was too depressed to let anything in.  He wanted to be in denial and would not even let us say aloud that he had MS.  His philosophy was, “If you say you have it, you give it power over you and I’m not going to do that.” While I could understand where he was coming from, on the other hand, MY philosophy was, “knowledge is power,” so we immediately separated into our two corners to deal with the situation.
…So began my journey of having “second-hand” MS.
Continue reading at http://multiplesclerosis.net/living-with-ms/second-hand-ms/

Second-Hand MS Read More »

I Like Ours Better

/

There’s always a lot of hype that surrounds holidays, and Valentine’s Day is certainly right there keeping pace with all the rest. It’s supposed to be a day to celebrate your love for one another in some special way with gifts, dinner out, and other more intimate ways of expression. I’ve never been overly romantic; though Lynn was.  He used to always send me flowers where I worked or made me some type of special decorative object.  He always did something special because he enjoyed showing his expressions of love in his own way.
Now that he is unable to get out on his own, he isn’t able to do those things anymore. He can’t make anything since his hands don’t work and he can’t order anything to surprise me since I manage the household funds and would have to type in the credit card information. He can’t take me to dinner because he tries to stick to his special diet and by night time he’s pretty wiped out anyway (plus this time of year we avoid crowds anyway due to cold and flu germs).…he can’t show other more intimate expressions of love independently—other than a kiss.  He can’t put his arms around me or hold me or cuddle with me unless I position him like a manikin and honestly, with my arthritis pain and muscle spasms, that’s just not something I want to do for a few minutes of physical closeness.
You would think that this loss of physical intimacy might have adversely affected our relationship, but I honestly think just the opposite is true. Before Lynn became so dependent on me, we both were VERY independent souls.  Both had previous marriages that did not succeed and both had learned to be both a mother and a father, a housekeeper and a maintenance worker, a CEO and a front-line worker.   Learning to share and include one another was not always our first instinct and that oversight often caused conflict. We may have had physical intimacy but we didn’t have as much emotional intimacy.
While it may sound strange to say this, Lynn’s loss of mobility has lead to our relationship actually becoming much closer than we ever were when we could go out and participate in things together.  Now we have to share everything.  If he has an itch, I have to scratch it. If he needs a bath, I have to give it. If he has a problem…he now tells me about it. There is a strong connection that bonds us like nothing we had before. No longer am I shut out of his life; we truly are one.
 
Read more of this blog at: http://multiplesclerosis.net/living-with-ms/like-better/

I Like Ours Better Read More »

The Need to Feel Productive

/

One of the struggles we have had to address with Lynn’s MS progressing so rapidly at one point was the loss of his feeling useful. Lynn was very strong, flexible, and talented all of his young adult life.  Then over the course of three years it seems he went from having the ability to build his own home (drafting the plans, laying the foundation for a full basement, toting, lifting, hammering, shifting, etc.) to not being able to have the strength to push a button on a keypad. He was the supervisor of a fabrication shop that designed and built displays that were the size of small houses.  He was a very talented carpenter but he could do just about anything related to construction and was even good at auto repair.
Unfortunately, just as his MS was progressing to the point that his work was being affected, his company closed the fabrication shop.  He was still in the state of mind that he was not going to acknowledge he had MS and needed help so he did not apply for disability; therefore, he lost access to that financial assistance.  He was convinced that if he didn’t own “it (MS)” then “it” had no control over him.  Though I tried to explain that he could and should fight to keep all of his functions intact and working well, he did not want to accept that disability insurance and other resources were there to help in that fight; not to prevent him from doing what he could on his own….but my husband is very stubborn.  Enough said on that.
While Lynn struggled to continue to “work,” being a carpenter doing physical labor is not safe when you lose your balance and fall often.  Also if hands and fingers don’t grip well, then use of power tools is dangerous.  He realized after a couple of close calls, he needed a new line of work.  His son suggested he start writing because he seemed to have a talent for it and enjoyed using his imagination.  He started with short stories but soon had an idea for a novel. He found that he loved to write and it became his new job.  He had his first novel published (Rising Tide) in 2009 just before his physical spiral downhill resulting in months of hospitalization.
After his third hospital discharge in six months, he was very weak; however, he continued to want to write. He NEEDED to write because he NEEDED to feel productive.  As a man, Lynn had to feel needed and productive to feel he mattered.  Actually, don’t all of us feel that way to some extent? No one wants to feel like a burden.  People have a need to contribute and when they can’t, depression sets in and health starts to deteriorate.  Therefore, I realized that part of my role as Lynn’s caregiver would be to help him work and be productive.  I needed to find a way that he could write daily that would still allow me to work.  It’s often a challenge and can be very frustrating for both of us.
continue reading on: http://multiplesclerosis.net/living-with-ms/the-need-to-feel-productive/

The Need to Feel Productive Read More »

I'm the Primary Healthcare Provider

/

Lynn has never been good at sharing information. He’s one of those men who can go to the doctor about a problem, find out he has a new medical condition, start a new treatment program, and when he comes home will say, “The doctor says I’m fine,” or say nothing at all. He did that for years before he was diagnosed with MS. Used to drive me nuts! I have a nursing background and when he came back from the doctor, I wanted to know everything—his blood pressure, what lab work was done, what was the differential diagnosis, what is the treatment plan, what options was he given before he made a choice, etc. Needless to say, I never got that level of detail from him because not only did he not ask those questions but if he did, he didn’t “hear” the answers and could not, therefore, provide any details.
One day after such an experience, I blew up and demanded that I be allowed to accompany him to his next visit.  Not only was I going, but I was going to make an appointment for him with a neurologist and he was going whether he liked it nor not!  I knew he had MS. I also knew he was not telling the doctor what he needed to share so that the doctor would consider that possibility. THAT was the moment that I truly assumed the beginning of my caregiver role.  I decided his medical care was coming under my supervision and that was that!
To read more go to:  http://multiplesclerosis.net/living-with-ms/im-the-primary-healthcare-provider/

I'm the Primary Healthcare Provider Read More »

Hold My Hand

/

Dear Lord,
I don’t know why you do the things that you do
or why you let happen the things that you choose.
I’ve often doubted your wisdom and resented your ways;
not willing to accept what I was facing that day.
Like when I was a young and my friends turned away,
I was sad and alone and tempted to stray
but you taught me the value if I would obey
and brought me a new friend I have to this day.
I went on through school and a nurse I became
my dreams of my childhood were just not the same
I landed a job that allowed me to grow
in ways that prepared me for what I must know.
The trials of a marriage destined not to succeed
taught me reliance on faith for my everyday needs.
Single parenting was hard and many failures I see
Looking back at my choices and need to be me.
But God was right there standing close by my side
keeping me going and being my guide.
A special needs child and another too free
some hard times, some good times, some just meant to be
Though hardships were many and challenges not few
to loving and caring adults they both grew.
My spouse I did meet through your influence as well
A personal ad I did answer, do tell.
We married but struggled in our attempt to unite
our children and habits and expectations weren’t right.
I prayed we’d find closeness and a true family become
But try as we might that “oneness” didn’t come.
Then much to our sadness MS found its way
into the dynamics of family each day
I asked many times “why us?” and I prayed
for a miracle or something to take it away.
But in your wisdom this hardship worked out to our good
We’re closer and happier than we thought that we could.
So thank you, Lord Jesus, though I don’t understand
I’ll trust you and turn to you, just keep holding my hand.
Amen

Hold My Hand Read More »

Follow Me on WWW.Multiplesclerosis.net

/

For those of you to like to follow  my blog, I recently began writing for Multiple Sclerosis.Net, an email newsletter that is published weekly.  My first article was just printed.  In case you’re interested in reading the email newsletter,  just go to http://www.multiplesclerosis.net
Adapting Celebrations to Meet Our Needs
Finally all the Christmas decorating is finished!  What usually takes me two, maybe three days, has taken me twice that long. But then, almost everything I do now takes twice as long as it did in the past – before my spouse was diagnosed with MS. (http://www.multiplesclerosis.net)

Follow Me on WWW.Multiplesclerosis.net Read More »

Who Am I?

/

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.

Who Am I? Read More »

Happy Birthday to Me!

/

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…

Happy Birthday to Me! Read More »

The Best Laid Plans…Oh, Forget It

/

By far, one of the greatest frustrations I have as a caregiver is that I have no control over what I want to do and when I want to do it. I am sitting here so frustrated at this moment that I can hardly think straight.
Today is July 4, my day off.  However, I actually planned to work today to catch up on some projects at work that I REALLY need to do.  I had my plans all straight but here it is 4 pm and I have not done anything I planned to do.  I could cry.
I took some “me” time last night from midnight to 2 a.m. to watch a movie I rented from Blockbluster (been trying for a week to even be able to put it in the DVD player).  BIG MISTAKE.  It never pays to take “me” time.  I always regret it later.  So anyway, I took the time to watch a movie; afterwards waking Lynn for his dinner (yeah, I know we have weird schedules), feeding him, doing his night routine and then mine, so I got to bed at 3:30 a.m.  Up again at 5, 7, and 9 (Lynn thinking it was 10.  He seems to think he’s my personal alarm clock and heaven forbid I just be allowed to sleep till I wake up on a day off!) to cath him. I go back to bed to sleep till 10 so I get 5 3/4 hours of sleep (15 min per cath event).  Getting up at 10, of course, makes me  late getting started but I figure, we have nothing special we have to do today, I’ll easily get started by 1 with what I need to do.
Then the day precedes to be shot to h___.  I do the morning prep work while he does his vocal exercises.  I take him to the bathroom and it doesn’t go as expected.  He has to use suppositories due to limited muscle strength and it didn’t “come back” like it should.  That means disaster.  Now we’re waiting in the bathroom and he decides he needs to pee (why couldn’t he have gone before we go the bathroom–yeah that doesn’t make sense to you unless you know that the cath supplies are in the bedroom not the bathroom). I finish that, get him cleaned up and then he announces he wants to sit in his manual wheelchair (he’s trying to toughen up his butt in hopes he can tolerate the cushion in that chair and maybe go to church again one day).  That means rearranging various pieces of equipment to get the manual chair out of of that room and putting him on it instead of the power chair.  That done, we go to the kitchen for his morning pills.
In the kitchen he takes his meds and decides he wants me to put weights on his wrist to work his arms.  That done, I turn to begin preparing my meal….no wait…. he needs me to help him with his arm exercises.  I do that, then take off the weights, and begin to get ready to take him back to his room. No wait….”I want to do pull downs in the weight room,” he announces.
I again go to the weight room (which I had just rearranged to get the manual wheelchair out), rearrange it again to get it ready for him and back I go to the kitchen to get him.  I roll him to the weight room and help him do the pull-down work out and then take him to the bedroom to set up the massager for his feet. I then go to start my breakfast (two hours after I get up) and eat.  While eating I prepare mushrooms for roasting, and cook spinach for his diet; also make his soup for lunch.  As I finish, I hear, “Sweetie, come back. I need to go to the bathroom again.”  Large GROAN.
With sagging heart, I go and take him back to the bathroom (remember, I only do manual lifts so I’m physically lifting him in and out of these wheelchairs and onto the toilet).  He “goes” and then says he might as well lie down awhile so I roll him to his bed.  “Oh, yeah, I want to do  push-ups.” Seriously???
I get out the PVC work-out pipes that I insert under his mattress (out of the weight room, of course) and help him do push-ups.  Then I settle him down for a nap (put his pants on him again, cath him, put his boots on him so his feet don’t cramp, get the TV set for viewing, wash his face, and straighten up the room.)
While he’s down for a nap, I just finish cooking what I put on while eating, washing the dishes and doing a load of laundry when I hear, “I’m ready to get up.”  I get him re-dressed, hook him up to his peddlar,  hear “I’m hungry,” so I feed him breakfast and as I finish feeding him, hear, “I need to go back to the bathroom again.” Major sigh…..
Back to the bathroom, back to bed, redress, get him back up, reconnect him to his peddlar, make him tea, cath again, and do a few adjustments, and now it’s 4 pm.  Six hours after I get up, I’m finally finished with his morning activities and I’m ready to “start” my day.
I give up! I think I’ll just take the take “off.”  After all, it will be time to cath him again in thirty minutes (true enough, he called to be cathed again at precisely 4:36) and he’ll want a snack 30 minutes after than, and then more tea, followed by another cath…..
So much for my plans.
I know none of the above was unnecessary for his comfort and well-being.  I know that he hates the fact that he had to disrupt my day so much (and I’m sure he hated hearing my complaining about it even more).  But that doesn’t change the fact that it’s depressing to have so little control over my plans. I’m tired of being unable to plan anything and I’m tired of disappointments but most of all I’m tired of the fact that I haven’t found a way to not let it get to me.
I really wish it didn’t. I wish I could laugh it off and just roll with the punches but that “funny bone” just ain’t working right now.  Could be lack of sleep; could be the fact my arthritis is really bugging me; or it could be….I’m just feeling sorry for myself and making it all about me.  It’s not all about me and it’s not all about him.  It’s all about us.  We’re in this together and I need to keep my perspective on it.  In the scheme of my life right now, not being able to work on writing policies for my job is not a big deal. Being able to make him comfortable and take care of his needs IS a big deal. I just have to refocus and get my perspectives right.
Hmmmm….I think I might just have the thing to do that…I think I’ll go make a slushy out of watermelon….yeah, that will make it all better.
Happy 4th of July.

The Best Laid Plans…Oh, Forget It Read More »

See Me Through His Eyes

/

I’m ashamed of how much I complain to Lynn about the things he asks me to do.  If he calls me to cath him and it’s only been 40 minutes I’ll say something like, “you’ve got to be kidding!  You couldn’t possibly need to pee again this soon.”  Today I was gripping because he now eats four small meals a day rather than three times a day. That’s one extra 30-minute period for me to prepare his meal and feed him.  When he wanted to exercise, I sigh and say, “Guess I won’t be making that phone call I need to return.”  I say things all the time to make him feel guilty for asking for my help!  I don’t see how he puts up with me or why he still calls me his sweetie.
Thinking about how I must make him feel, I envision what his world must be like with me in it.  I want to share that with you and hopefully remember it myself the next time I start whining and complaining.
————————–(this is how I imagine Lynn thinking to himself)———————–
I wish I could go back to sleep. It’s 7:30 a.m.  Is Donna getting up at 8 today or 9?  I really need to pee but I had her up twice last night and I know she needs to get some sleep.  Maybe I can wait…
Did I hear her? “Donna, are you awake?  I hate to wake you up but I really need to go.”
Donna: “I’m awake now.  Can’t you hold off a little while longer?  I’ve only been able to get five hours tonight.”
Lynn: “I’m sorry but I really do need to go. I’m so full, I don’t think I can hold it much longer.” I hope this is not a false alarm.  I really don’t want her to be miserable all day and I hate to interrupt her sleep like this but I feel about to bust. 
Donna: “Okay,” (heavy sign) “I’ll get up.”

(an hour later after he has done his vocal exercises)

Lynn:  “Do you have time to help me exercise?”

Donna: “What do you want to do?  My hands are really hurting this morning and so is my back.”

Lynn:  “Can you help me with the Tram?”

Donna:  “I don’t know.  I need to check emails and get things ready for us to go to the chiropractor today.  I really need to get back to xxxx.  Maybe if you don’t ask me to do anything else afterwards, I can fit it in.”

Lynn:  “Maybe I should wait and do it tomorrow.”

Donna: “No, you want to do it today so we’ll do it today. (heavy sigh)  Just let me figure out how to fit it in.”

Lynn:  I don’t want to bother her but it’s been a week since I was up on the Tram and if I let it go much longer, I’ll stall my progress. I’ll try to do it quickly so I don’t bother her any longer than necessary.  “Thanks.  I really appreciate it and I’ll try to keep it quick.”

As I rush out to get breakfast, Lynn thinks, I hate being such a burden.  I know she’s doing the best she can and she doesn’t have enough time like it is.  I know I shouldn’t add to her work but if I don’t exercise, I can’t get my strength back and I’ll never be able to help her around here.  I want to be her husband again.  I want to take care of her and do the yard work.  I want to fix the front porch rail and get the windshield wipers changed for her on the truck. I want to take her places with me driving so she can sleep in the car or read like she used to do. I want to earn a real living; not just get a few dollars from disability.  I want to take the load off her shoulders.  I’m her husband.  I want her to see me that way again and not have her think of me as one of her children to care for or worse yet, a job she has to do.  I’m afraid she will grow to resent me and my demands on her time, but I get so cold if I don’t drink hot tea and then I have to pee so often when I do. 

“Donna, can I have some tea?”

D___ I dropped the remote. I hate this show.  I’ll type instead.  Let me send another query letter out for an agent. …I’ve written that paragraph four times now and I’ve lost it each time.  My computer is acting up. Maybe she can help me  figure out the solution.  I’ll ask her when she comes back… but I know she doesn’t have time.  Maybe I can get her to help for just a minute though.  Maybe she won’t be as bothered with me if I get her to do everything while she’s here and not have to call her back anymore…

—————————————————————————————————–

In my mind, I imagine those types of thoughts go through his head every day.  I know he hates to be a burden. I know he doesn’t feel like a man and that he’s eager to get his book to sell, not for the glory, but so he can bring money into our home to help relieve some of my struggles. Lynn is very thankful for what I do for him.  He gives me a lot of praise and signs of appreciation.  I’m very fortunate, he is so thoughtful and doesn’t make my caregiving experience so much harder than it already is. I’m a lucky woman; so why am I so critical and complain so much?

Lord, forgive me. Help me to see through his eyes, to feel through his skin, to hear with his ears, to feel his pain and frustration.  Help me to see the man I married and not a patient demanding my attention.  Help me to show compassion and love, respect and gratitude, encouragement and hope, and most of all faith in You that you will see us both through the good and the bad times.

Amen

See Me Through His Eyes Read More »

Loss of Intimacy?

/

When my role as a caregiver became more demanding, I found myself acting more as a caregiver and less as a wife.  In the early stages of MS, Lynn still worked, drove himself around, completed projects, and helped me with things I needed.  He shared in the responsibilities of the house and we shared our lives as a couple. While he needed some assistance, particularly at night when he was most tired, he was independent in his own care and was still functioning as a husband, making decisions about our future, making sure maintenance of our home and vehicles occurred, taking measures to ensure our safety and securing our resources.
Then came the day he was home alone, fell, and could not get up.  He was stranded for almost three hours lying next to a heat register, getting overheated, alone and totally helpless.  It changed him. After that, he was afraid to be alone.  He didn’t want me to leave the house and was even reluctant to let me leave if someone else was with him.  He began to rely on me for everything.  He was afraid to try walking with his walker anymore unless I was right there.  He became very depressed and struggled with the realization that he was becoming or had become DISABLED.  It was at that point that our roles changed.  I became his caregiver and he became my “charge.”
Within a few months after he fell, his condition deteriorated to the point he was hospitalized and was in and out of the ICU during three separate hospitalizations.  By that point, I was responsible for everything–all decisions; his protector; his liaison with the outside world; his life-extension. When we left the hospital after the first admission, we left with him as my patient and only an essence of my spouse.
That was 2 1/2 years ago. He’s much better now, physically and mentally, but the aftereffects of that time remain.  He has use of only one arm and hand which becomes essentially no use of limbs by night fall.  I position his body for him so that I can dress him; I manually move him from bed to wheelchair; I position his arms for comfort and his legs/feet go into his peddler so when his spasticity gets uncomfortable, the movement can relieve that.  He does not have the strength of movement even when he does move his limbs for effective action.  He cannot even scratch an itch or wipe his eye of sweat.   That being the case, when the person you love cannot left their arms to hug you or tighten their muscles to embrace you; how do you maintain intimacy?
We are fortunate in that Lynn’s mind is still very active and engaged.  Though we can have no physical relationship, we do have a spiritual and interpersonal relationship.  We are still able to enjoy a television show or good movie together.   We discuss the news.  We share in the joy of parenthood and now grand-parenthood.  We can still send each other special smiles and looks and we still strive to support and encourage one another.  We still have companionship and for us, that has allowed us to continue as a couple.
I have talked to others whose spouse has withdrawn from being engaged with the events around them or who can no longer remember the here-and-now but instead lives in the yesterdays of their minds.  For them, the person they loved no longer exists in the presence other than as a responsibility.  They still love their spouse but the person who “was” no longer “is.” Therefore, they carry on in a one-sided relationship becoming the caregiver who functions not as a partner, but as the one responsible for everything that needs to be. That type of relationship can be very lonely. Though someone else is present in the same home there is no companionship; no sharing; no refuge from life’s challenges by being able to unburden their load with someone else.  They now have to receive their satisfaction in the relationship though the knowledge that they are making their spouse’s life better, their life expectancy longer, their potential for greater recovery an option.
I am very thankful that I am not at that point yet.  I dread the day that may or may not come when Lynn doesn’t recognize me or where we live.  I know if that day occurs, the burden of caregiving will seem greater unless I prepare emotionally and mentally for what lies ahead.  It’s possible Lynn will not develop memory or cognition problems but many MS patients eventually do.  However, for now, I’ll feel blessed that he “has all his oars in the water,”   and I send up prayers for my friends who are not as fortunate.

Loss of Intimacy? Read More »

Trying to be All Things at All Times

/

I’m having one of those “half-empty” days.  Didn’t start out that way.  I was excited because Lynn was having his Tram delivered today and I knew he would be happy to have that.  The Tram is a device we bought to help him stand and perhaps even walk one day so it’s a “hopeful” device based on our faith that he will be able to do more in line with walking, in time.
However, he woke up not feeling well from his Rebif shot last night.  When he doesn’t feel well, my day becomes devoted to his constant need for attention.  I needed today to catch up on work I was behind in from my job.  I count of having some dedicated time on Saturday and Sunday to make up for the time I have to spend caring for him during the week. Well, it’s now 7:30 p.m. and I’ve given up the hope that I’ll get to do any work.  I realized I was depressed and feeling overwhelmed so I decided to talk to you all because I know you understand.  In other words, you’ve “been there, done that.”
I get so discouraged sometimes.  Lynn wants me to be all things at all times and I get so tired of trying to keep up with it all.  For example, he has an itch that needs to be scratched so he calls me to come scratch his leg.  I get there and he looks at me expectedly as if I should know what itches so I go through the twenty-questions routine to narrow it down.  “Which leg, top or bottom, nearer the foot or thigh, inner or outer side,” until finally I get an idea of where the itch is.  Then I scratch wondering if I’m coming close and when I can stop.  He expects me to instinctually just know what he needs.
A few minutes later, “Donna, come fix my patch.”  Lynn has a pressure ulcer on his buttock I’ve been treating and covering with a foam-type patch.  It’s large enough that it pulls on his skin hair at times or sometimes the problem is the air-bladders in his seat cushion that press against it and make it hurts.  Whatever the problem, he expects me to make it better. He looks at me imploringly to say, “make it stop hurting” and I fiddle around under his leg, lifting it up, smoothing out the wrinkles, padding down the sharp points that come from under-inflated air bladders to see if “it makes it all better.” Sometimes it works right away; other times I work and work to make it all better. When it’s the last scenario, I feel like crying in frustration before I’m released by him to go back to whatever job I was trying to do before he called me for help.
When I’m not magically trying to fix pain and discomfort, then I’m acting as psychologist.  This week he got depressed because he had a visitor who choose to tell him about two people she knew with MS who had serious complications or whom the disease had devastated.  One of them died and the other is bed-ridden and in a lot of pain all the time. After she left, Lynn, in exasperation asked, “why do people do that? Why would anyone tell someone with a chronic health condition about someone with the same condition that was doing much worse than they are?  Can’t they understand that I don’t want to hear about how “bad” I could get? It’s hard enough to keep a positive attitude and keep fighting this thing without someone trying to bring me down with stories of how others lost their battle.” After that visit he was irritable and easily annoyed for a while so he needed a lot of attention.
A new challenge lies ahead for me. Lynn now has his Tram which could lead the way to a lot of progress OR it could result in a lot of disappointment and frustration if his condition won’t allow him to stand with support.  However, who is going to be the one to help him with his goal of walking?  I am of course.  Insurance cut out his home visits for Physical Therapy.  They might approve outpatient visits but honestly, if I had to take him in for PT every day, I might as well give up my job now.  It takes a minimum of three hours to get him and I ready if we are going somewhere or having someone come to us; then there’s thirty minutes or up to an hour to drive to wherever we’re going.  Therefore, to save time, I’ll have to become his PT.  I already help him every morning to change weights, apply straps, adjust positioning, hold equipment, etc. while he works out. I’ll be adding to that assistance with standing. He will need to increase his endurance by standing longer at a time so I’ll have to be close by meaning–more time away from my paying job.
Everything he asks me to do he needs to have done for optimum health. Everything he asks me to do though takes time from all the house maintenance, car maintenance, shopping, cleaning, food preparation, personal hygiene, job duties, making appointments, etc.  He REALLY needs a full-time assistant but our bills are significant enough that I couldn’t carve out that much money to have someone full-time–and in-home care is not covered by insurance. I feel like I’m working twenty-four hours a day; seven days a week.  I haven’t had a day away from him that wasn’t related to my going into work since Eli was born and I stayed at the hospital all day/night with Sarah and Greg waiting for his arrival.  That was May 27.  Before that I had a shopping day in October looking for a dress to wear to my nephew’s wedding.  That’s the only time I have been away for several hours unrelated to work in a year.
I’m tired.  I’m discouraged.  I need sleep.  I need to get away…..but I need to go give him his shower, fix dinner, get things ready for his family who are coming to our house for an after-Christmas gathering tomorrow, and meet him many requests for assistance till I fall into bed around 2:00 a.m. tonight. Oh well, life goes on…
PS:  Don’t worry about me. I’m just using you to regenerate myself. Thanks for allowing me to share my feelings with you.  I can’t do that with Lynn; it would hurt him too much.  I’ll be fine.  I’ll see my grandson tomorrow for a few minutes and the world will be smiles and coos again.
Thanks for listening.

Trying to be All Things at All Times Read More »

Which Half of the Glass Am I Today?

/

I have become a “glass half empty” type of person.  I’m not sure exactly when that occurred but it’s definitely true.  Whenever something comes up as a possibility, I think about the risks associated with it and start preparing myself to deal with those possible traumas and disappointments. 
It drives Lynn crazy. 
Lynn is very optimistic.  He looks at the possibilities and he believes in potentials.  He talks about walking again and building the house we started years ago.  I respond with, “you have a lot of muscle groups to retrain. Don’t get disappointed if you are not able to walk by the time you want to be able to do so.”  In my mind, I don’t see walking even as a possibility.  In his mind, he feels that as long as he keeps a positive attitude and keeps trying, anything could happen.   I want to be more like Lynn.
So with that in mind, I’ve decided to turn over my glass and let it be half full today.

  • Instead of dirty carpets that are covered with stains that can never be removed, I see the blessing of dirty carpets that can have anything spilled on them and it not matter at all.  What’s one more stain?
  • Instead of worrying about cleaning up the clutter that has accumulated around the house, I see that I have immediate access to the things I need without having to climb step-ladders or go to the attic.
  • Instead of being sad that I never get to go shopping to pick out new clothes or browse whatever might be there, I realize that I’m not being exposed to the flu and other ailments so many others are getting from being in crowds and sharing door handles.
  • Instead of feeling sorry for myself because I can’t go into work and see people face-to-face so that I get a chance to get away, I’m thankful that I don’t have to put on make-up and do my hair and I can work at my desk in my scrubs and slippers while participating in conference calls with directors and VPs.
  • Instead of complaining about all the medical equipment we have stored in all our spare rooms, I’m thankful that he has access to so many things and is making progress toward moving back to the less dependent modes of movement.
  • Instead of complaining that he’s playing his music so loud I can’t hear myself speak when I’m at the other side of the house, I am thankful that with the music I can hear him sing when for so long he didn’t have the breath to say a full sentence.

I know that as a caregiver, I have to think about the “what ifs” and have contingency plans. I know I am responsible for his safety and for realistically planning for what lies ahead.  But I’m thankful that Lynn isn’t like me.  I’m thankful he doesn’t give up and he keeps hope alive.
I’m thankful that we are different; that he’s “half full” to my “half empty” and that when we blend together we are both “full.”

Which Half of the Glass Am I Today? Read More »

They're Married and Lynn was There for it All

/

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.

They're Married and Lynn was There for it All Read More »

Rush to RUSH

/

Lynn’s favorite band every is RUSH.  For years, him, his son, his son’s friends, and Lynn’s friends have bought tickets to their concert as soon as they went on sale and anxiously awaited the day they could see them live.  It used to be a fairly big production with a group of 5 or 6 guys spending the night at our house after the concert and reliving the experience while they blasted out RUSH songs as if the concert was still in progress.  He always wanted me to go with them but I am not a big fan of concerts and had rather listen to Christian rock or country music so I would just smile and decline.
He finally convinced me to go to RUSH’s 2010 concert.  By that time I had heard their songs so much that I had learned to appreciate their music, though not as much as Lynn did.  The concert that year was during the time that his health was starting to decline.  I remember the day of the concert his being so ill that I really did not want him to go; however, he stubbornly insisted.  We drove two hours to Jiffy Lube Amphitheater in northern Virginia and just left in time to get their before the concert started.  Lynn’s friend from his former job went with us and was going to sit with Lynn while I sat with the rest of the group many rows back.  I could not enjoy the concert at all.  Knowing how sick Lynn was, I constantly was looking for him and checking my phone to see if John needed my help.  At intermission I found them.  They had never made it inside.  Lynn felt too bad to be among the crowd.  I tried to get John, his friend, to go inside and let me stay with Lynn but he’s a very loyal friend, and choose to stay with us.  Shortly though I managed to convince Lynn that we needed to take him home and we left.  That was the beginning of a very long period of illness and hospitalization so for me, a RUSH concert did not bring forth pleasant memories.
Fast forward two years and guess who is back in town?  RUSH.  Guess who is going again?  Me and Lynn.  This time; however, I’m sitting with him and he’s feeling well enough to enjoy the show.  However, he is still fighting the fatigue and irritability that comes from getting adjusted to Rebif so the trip up was not as much fun as expected.  We took the van, of course, and I connected his peddlar to him so he could pedal all the way to northern Virginia but he just could not relax. 
About 45 minutes before show time, we got to the road leading to the entrance of Jiffy Lube park.  Traffic was not moving!  The concert was due to start at 7:30 and i took till 7:30 to move far enough ahead that we could pull into the entrance to the park.  To make matters worse, Lynn was convinced I was going the wrong way to handicapped parking and was “losing his cool” while I was losing mine in trying to maneuver through thousands of cars. (By the way, I was right about the direction I was going.)
We had left early enough to be able to eat a packed lunch I had brought just before the show…or so we thought.  Since we arrived right when the concert was due to start, we sped out of the van and toward our seats.  RUSH always does something unique for the beginning of their shows so Lynn was determined not to miss it and upset because he knew he would.  Well, we made it on time.  Our seats were as good as you could ask for considering he was in a wheelchair.  We were located between the cameras and sound equipment so no one could stand up in front of him!  Perfect! I could not see as well as he could but I didn’t care as long as he got to see the show.
Just as we got to our seats, the show started and Lynn began to relax.  Knowing though that he needed to eat, I got him comfortable and proceeded to pour him soup into the top of a thermos container.  I first poured the liquid and handed it to him to drink.  I should have known better but it was a small, light-weight cup so I thought he could handle it.  I was wrong.  As he took his first sip of hot onion soup, the full cup fell out of his hand and soaked his shirt….We just looked at each other and laughed. I asked him if it was warm enough and he said, “for now, but cooling off fast.”  Fortunately, I had brought in a blanket to help him stay warm because the temperature was supposed to drop to the 50’s that night.  So, since I did not have a spare shirt with me, I took the blanket, covered his legs and stuffed the rest of it under his shirt so that the wet shirt would be able to dry without touching him.  Then I proceeded to feed him his dinner, only this time, I held everything.  We probably looked rather comical. Here I was with a load of supplies feeding him soup from a thermos while a rock concert was blasting away and he’s covered with a blanket stuffed under his shirt. I kept thinking to myself, “a caregiver never takes a holiday or goes on break; you always have to be prepared for the ‘what if’s’ of life.”  
I finished feeding him dinner, got him comfortable again, and went in search of food myself. The rest of the concert was uneventful and enjoyable.  It was actually the first date we have had since he became immobile so it was nice to be out, with just the two of us and several thousand of our closest unknown companions.
When the concert ended, we waited for some of the traffic to head out and then loaded up for the trip back home. We were directed to leave by a different route than we came in.  So needless to say, we got lost. We started heading west to Fort Royal instead of east to Washington. Finally found out way back heading east to the 95-south connection and finally headed for home.  He was exhausted but content.  He fell asleep not long after we got on the road.  Other than a lengthy delay for construction, we made it back without issue.  I woke him up, got him inside and settled, then fixed our dinner (at 3 a.m.) and off to bed at 4.  He was very tired; as was I; but glad we made the trip.  He’s already planning for the 2014 tour!  I think next time I’ll pack finger foods and an extra shirt…..

Rush to RUSH Read More »

The Healing Touch of a Baby's Smile

/

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!)

The Healing Touch of a Baby's Smile Read More »

I DON'T WANT TO BE A MAN!

/

As a caregiver, I’m asked to assume many roles–comforter, nurse, counselor, banker, chauffeur, and many others; but the one role that I really hate is being the man-of-the-house.  I’m sure the same holds true for men who are caregivers to women.  I would venture to say that most caregivers are satisfied with their God-given gender.  I know I am.  I like being a woman accepting both the bad with the good.  It’s a role I know how to do since I’ve been this way for 55 years.  On the other hand, I was not born a man and I do not have any desire to become one, compete with one, or assume the responsibilities of one, but that’s what I’m asked to do at times.
What caused me to get on this soap-box you may say?  My car.  I went out to the car while my step-son was here to stay with Lynn so I could go to the grocery store.  When I climbed in and reached up to adjust my rear-view mirror, it was not there.  Instead, there was a cord hanging down with the mirror at its end and a black bar in the seat beside me.  Needing to get to and from the store quickly, I left it all there and took the van instead.  When I got back, I told Lynn that I would need to call our mechanic on Monday to get him to fix the mirror on the Impala.  Lynn’s response was, “You don’t need to get Ronnie to do that, you can handle that yourself.” He then proceeded to tell me how simple it was to take the mirror apart and glue it back in place. 
Now any of you men out there who have ever repaired a mirror that has come unglued will realize this it really does not take a rocket scientist to repair this situation nor do you have to know how to tune an engine or use a lot of tools.  You’re probably shaking your heads saying, “Yeah, it’s a five-minute fix.  Don’t pay a mechanic to do that.” That was Lynn’s opinion, too.  Mine was, “well if it’s so easy, then you go out there and do it.” 
Ouch!  Not very sensitive of me, I admit.  My purpose was not to make him feel bad about not being able to fix the car but to instead emphasize that while it’s easy for some people but not for everyone…including me.   Perhaps it IS so simple a process that even I could do it, but I DON’T WANT TO KNOW HOW TO FIX MY CAR! 
In exasperation, I declared, “why do I need to make a special trip to NAPA (which is next door to our mechanic) to buy glue, then figure out how to disassemble the casing (or whatever) on the mirror mount, glue it and then reassemble it all, probably getting frustrated and stressed in the process when I can take it to Ronnie and he can do it in five minutes, on the first try?”  Sure I could save some money.  I might even feel a sense of accomplishment for repairing it myself BUT I have enough to do with what I have to keep up with every day. I don’t want to learn something new.  I want to go see Ronnie and have him fix it.  He’s a mechanic and a good one; let’s let him have the business, okay?
I do realize, it’s really not about fixing the mirror.  What I’m upset about is having to learn to do things my husband used to take care of so easily.  He was a carpenter.  He was very good at doing repairs to homes and vehicles.  He knows his stuff so well that his first response is to tell me I can fix it myself with him telling me how.  What usually happens instead is that I get stressed and frustrated and he gets stressed and frustrated–for different reasons–and neither of us is happy. I may eventually get the thing fixed but I resent having to do it. 
There…that’s it.  I resent having to do it.
I resent the fact that I have to be both the woman and the man of the house.  I felt that way some when I was divorced because I had been left alone to fend for myself, but now I have my spouse who wants to help but can’t.  He gets frustrated and angry because he’s not able to help me. Then he feels depressed and inadequate because he sees me struggling to do it all.  I’m juggling so many plates in the air at one time that I can barely keep them going before they all fall down.  He hates to ask me to do one more thing but knows that if he could just explain it well enough, then he could still be useful by saving us money on repairs. But then if I take on the new task, nothing gets taken away; it’s just one more thing to do so I debate, “do I try to fix it with his help or call someone else for assistance?” Lately, I’ve been calling more because I realize I just can’t do it all and I don’t want to be the man anyway.
There are times I swallow my fear of failing when something needs to be done and I try to do it myself.  When I succeed, I admit, I feel proud but I’ve learned I have to balance my life.  Sometimes, it’s best just to ask for help, so come Monday morning, I’ll be making that call to Ronnie, “Hey, can you fix my mirror?”

I DON'T WANT TO BE A MAN! Read More »

God's Blessings

/

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.

God's Blessings Read More »

So Many Choices

/

Have you ever stopped to think about how many choices you make in a day? Mine start before I open my eyes

  • Wonder if Lynn will know I’m awake if I pretend to still be asleep?
  • What time do I really have to get up to be ready by xxx?
  • Do I want to get up now or just lie here?

Those are simple choices without much consequence.  Then as the day wears on, more difficult choices have to be made

  • Do I take this call that’s probably from work or just let it ring while I put Lynn in the bed?
  • I’m hungry but if I heat my food up now, he’s probably going to need to be cathed soon so it will get cold?
  • I really need to go to the grocery store but he’s so tired and feels so bad can I make it another day without xxx?
  • Do I agree to come in for the meeting or try to arrange it by conference call?

Those type of choices take more thought and calculation so the difficulty level is slightly more, but what I’ve encountered this week in talking with others who are caregivers is that often the choices are much more difficult and have a potential to deeply affect many.
One person I spoke to was trying to decide whether to limit the number of hours they worked in the office by going home at a certain time each day and hopefully finishing up from home.  While that sounds like a simple decision to make, if you’re a manager in an office and a crisis occurs, you have responsibility to see that it gets addressed.  If you say, “I have to go home to feed my xxx,” then you risk being viewed as being unreliable or not caring about your job. 
Those who are not caregivers don’t realize the internal turmoil that we caregivers often go through each day.  Each decision we make impacts not only ourselves but the one we are looking after and sometimes others as well.  For example, in my job I offer guidance to managers on issues often related to conflict or safety.  I often have to choose when to make a call or check for messages as opposed to answering a “call” from “down the hall” related to a comfort need.  While I often try to do both at the same time, there are times that I need to concentrate solely on one or the other.  In those situations, someone has to wait so I have to determine whose need is greater at any given moment and who might be at greater risk of harm if I don’t choose them? Making that decision often produces tension and anxiety into my day. But even when the decisions are not as potentially risky, every time I have to make a decision, it seems something has to be postponed or denied while something else is addressed. 
Do you ever get tired of making all the decisions?  I do.
On the other hand, making the decisions gives the decision maker power.  Poor Lynn is totally at my mercy to make decisions in his best interest.  Our relationship has to be solid so that he can completely trust that I will consider what he wants and do what is best for him, if possible, or as long as no one else is hurt.  I guess that’s one reason why when I make a decision that does not put him first, I have a twinge of guilt.  He doesn’t get to have the choice; I do.
There are times though that the one being cared for gets to have the final say.  I think about someone I know whose husband had to have his larynx (voice box) removed, shortly after suffering a stroke which paralyzed in his writing hand, and affected his eyesight.  He had virtually no way to communicate his wishes.  He made the decision to die.  He stopped all medical treatment.  He was of sound mind.  Faced with a lifetime of not being able to communicate, read or write, he just decided he had had enough and was ready to go home to heaven. His decision…not hers and she had to honor it–that’s tough.
As much as we might get tired of making decisions, it’s one of our most important functions as a caregiver.  We need to know what the person we are caring for values in life; what their personal preferences and choices would be in most situations.  Then we need to respect that choice even if it’s not what we personally would want.  This is especially difficult when you don’t agree with the decision or the decision adversely affects you in some way.  I’m thinking now about a conversation Lynn and I had today.  He’s still feeling lousy from starting Rebif.  I told him I thought that if he wasn’t feeling better by the end of summer, he needed to come off it.  He said he planned to give it a full six months which would be closer to the end of October.  I realize he needs to make that decision even though I, too, have consequences from his taking the medication (he feels worse so he needs more help, he’s depressed and angry at times, and I just hate to see him feel bad every day all day).  So sometimes not making the decision can be just as hard as making it.
One other decision, I recommend you make.  If you haven’t already, ask the one you are caring for to make you his/her medical decision maker in the event he/she can’t make their own decisions.  If you’re the legal next of kin maybe it’s not as important, but I’ve found that even now while Lynn’s perfectly able to make decisions on his own, that document gives me credibility when I’m talking to his medical team about options or trying to obtain information.  I highly recommend you get that signed in advance and give the medical team a copy.  It also wouldn’t hurt to go ahead and designate someone on your behalf as well.  That would be one less decision that has to be made later on….

So Many Choices Read More »

"Cut! Take Two…"

/

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 »

Patient Advocate

/

Out of the blue today, Lynn asked me to write about advocacy. He said, “please stress to your readers the importance of having an advocate or being one for yourself,” so here goes.
When Lynn and I first got married, we were both VERY independent.  Both of us had been married before and both of us had learned to survive as single parents and single individuals. Therefore, unless we needed someone to drive us home after a procedure, we never accompanied one another to medical appointments. That was fine at first but then I became very frustrated with that approach because Lynn’s approach to health care is “the less I know the better” or “ignore it and it will go away.”  Mine, on the other hand, is “tell me absolutely everything, give me a copy of every medical report you receive, and where can I get more information?”  Therefore, as I began to notice more and more often, symptoms that, to me, signaled MS, I began to ask more and more, “what did your doctor say?”  The answer was always the same, “I’m fine.”
Finally after one intense discussion around this factor, I announced that the next time he went to ANY doctor, I was going, too.  I’m glad I did.  I sat silently to the side and listened as the doctor asked Lynn how he was doing.  His response, “Fine, if I was any better I could not stand myself.” Knowing that doctors do not have x-ray eyes and cannot read minds, I spoke up and said that wasn’t exactly correct. So began, my role as MS Caregiver, and patient advocate.
Initially Lynn continued to have a hands-off attitude.  He told me he didn’t want to know anything other than what he had to know to get by day by day. When I would be reading about MS or looking at something on the internet about it, he would turn his head as he walked by.  This attitude continued until his second admission to the hospital.
Lynn’s first hospital admission was pretty serious.  His body temperature dropped so low it could not have sustained his life for long.  That was due to aspiration pneumonia which occurred when he coughed up a nasogastric tube through which he was getting a tubefeeding and the feeding went into his lungs. He was actually too sick during this admission to participate in his own decision-making so I stayed with him 24/7 and did it for him.  I was present whenever the medical team visited and I asked hundreds of questions to make sure I understood what was going on and what it all meant.
Then on his second hospital admission, he learned for himself that he needed to speak up on his own behalf.  Lynn’s diaphragm was weak; whether from an MS exacerbation or the intrathecal baclofen dose being too high and making the muscle weak. There was a period where I expected him to be put on a ventilator at any moment.  Thanks to prayer and a good medical team, we avoided that but when he became more alert, he started taking a more active role in the decision-making.  He was convinced he was NOT having an exacerbation so he refused the IV steroids.  There was one doctor in particular who kept insisting he had to go on steroids and he flatly refused to do so.  He insisted the baclofen dosage be adjusted and that, along with some aggressive pulmonary care, helped him to overcome the respiratory depression he was having and be able to leave the hospital. 
During that admission, he had difficulty talking because he had limited oxygen and had to wear an oxygen face mask all the time.  Often the doctors would assume he was going to go along with what they wanted and would not wait to hear him out.  However, I learned to read his signals and would at times, block the doorway and say, “he wants to say something to you, listen.”  They would apologize and indeed listen.  Sometimes they just get too busy to slow down and listen to the patient and you have to force the issue.
That’s what patient advocacy is all about…making sure your opinions are known and heard.  Healthcare professionals can be intimidating.  They are trained to be very confident in their decisions and in deciding what is best for someone; they have to be so that they will have the courage to do what has to be done. However, sometimes they have a hard time turning that off.  That’s when you have to speak up.  You know your own body and how your body reacts to situations.  In much the same way, you know the body and the reactions of the person you care for. 
As a caregiver, you can often spot changes that even the patient doesn’t notice.  I’ve intervened in Lynn’s care several times and having done so, prevent a great deal of pain and suffering for him. You won’t always know the answers but listen to your gut instinct when you feel something’s wrong. 
…and be a pest if that’s what it takes.  Don’t be abrasive or rude; that will backfire.  No one likes to be bullied or threatened so don’t go there but be persistent.  Keep asking for an explanation and pointing out discrepancies until you’re satisfied that what you know is being considered. I’m not saying to always disagree with the medical team or to insist for the sake of insisting, but just make sure you’re heard and your opinion is considered.  Get a second or third opinion if necessary, but always look out for your loved one like a mother bear watches over her cubs.  It’s just one more essential role of being a caregiver.

Patient Advocate Read More »

Why is Getting Help so Hard to do?

/

Ever since Lynn became totally disabled, I’ve had lots of encouragement to get some help.  I know I need help.  My muscles hurt from over use; I get frustrated trying to do everything I need to do; I know that there is a high risk as a caregiver that I will have a shorter lifespan.  So why don’t I just get some help?
I’ve heard from several of you the answer to that question because you have already struggled to make that decision and you encourage me to do the right thing for both myself and Lynn. So why don’t I just get some help?
Protection – Just like a mother lion protects her cub, we caregivers protect the person we give care to.  There is usually a connection with the person both of emotion and responsibility.  As a spouse, I love Lynn and want his every need to be met to his satisfaction, if possible.  As his spouse, I promised to love, honor, and obey in sickness and in health, etc. so I also feel a sense of responsibility.  Rationally, I know that promise does not mean I have to provide the care but there is a commitment and emotional piece that leads me to want to put his needs first before my own.  I also know that I know him better than anyone; what he likes, how he likes it, when he likes it, etc.  I know that any caregiver we hired would not likely be as attentive to him as I am.  Would that person catch signs of distress or illness soon enough to prevent more harm? Lots of “what ifs?”
Selfishness – This is a bazaar one but selfishly I like being recognized for how well I care for him.  Pretty sick, right?  I like to hear compliments about how well he’s cared for and to feel appreciation from family members for “my sacrifices.”  I also have somewhat of a martyr complex for some sick reason.  I find self-worth in sacrificing for others so there is some secondary gain in what I do as well.  Plus I rather like working from home in scrubs rather than putting on makeup and going into work (at least some of the time anyway.)
Financial – This is a big one.  Lynn gets basic social security benefits–hardly more than he took home every two weeks–so my salary is the primary salary.  I make a good salary for the work I do so I’m very blessed in that respect but I’ve run up a lot of credit card bills buying things to make our life easier, medicines, supplies, nutritional supplements, equipment, etc.  All that stuff is expensive and I also had children getting married, unemployed and needing help, going to college, etc.  All that cost adds up.  I don’t have spare money that could cover much in the way of daily care.  I know I need to carve out some income in that direction and over the last year, I’ve managed to pay off some of those bills but buying the wheelchair accessible van and saving to build a new house doesn’t leave much to use. Another consideration is that insurance doesn’t pay for home caregiving, plus I live in a very rural area so resources are limited. 
Lynn’s insecurities – He’s afraid for me to not be here.  He knows that I’ve “saved his life” several times by noticing changes in this condition and getting the help he needed sooner than later.  He knows I will find ways to make what he needs happen and quite frankly, the thought of having a stranger around all the time is not a welcome thought.  What do you do with a paid caregiver when Lynn doesn’t need anything at the time? Do they sit in the room with him and watch TV?  That’s like having a guest around all the time and we’re just not that used to having company.
Then there’s the safety issue.  Criminal background checks, how well does the caregiver know their job, do they lift safely, will they be patient and nice or mean and abusing? 
So much to consider….It’s not easy to take that step even when you know it’s something you really need to do.  I’m getting closer but I’m still not there yet…but it’s only a matter of time.  Pray for me that I’ll get there and find a way to make it work.  Thanks for all the words of encouragement and support.  It really helps.

Why is Getting Help so Hard to do? Read More »

Going to the Movies

/

I have always enjoyed a good movie. It’s one of the things I miss about not being able to get out and go places now.  However, you don’t have to go out to see a movie any more; you can now do it in the comfort on your own home and with the benefit of a “pause” button. 
What would we do without “pause”?  We rented from “the big red box” a movie called, “We Bought a Zoo.”  Fantastic movie!  I highly recommend it.  So after I gave Lynn his shower, got him dressed, took my own shower (which I find necessary every time I give him one), got him settled with his peddler, and gave him his afternoon meds, I put the DVD in to watch. 
About 10 minutes into the movie, I paused to cath him and fix him some tea.  About 20 minutes later, his foot was hitting his wheelchair so I had to fix that (didn’t pause that time), ten minutes after that, he needed nose spray.  I settled back on the bed for about thirty minutes and it’s “pause time” again for another cath.  Clean everything up and back to the movie.  A few minutes later, he needs his arm scratched.  Ten-fifteen minutes later, his foot hurts and his socks need to be pulled up.  (This one takes a pause.)  Got him settled, restarted the movie, and he needed nose spray again (he has chronic sinusitis).  Then another cath (yes that’s three in the space of what should have been a two-hour or so movie.  Ah, yes more tea is needed too. 
I lost count of how many times I was interrupted during the movie.  Seems like at least every 10-15 minutes.  I used to think the kids were tough to watch a movie with.  I think Lynn wins the contest as to who needs more attention.  It’s not always like this but it often is at night.  Late evenings are always bad and this past week has been significantly so.  He just started Rebif so he’s having to get used to that.  His dietician started him on some new supplements that help with removing bad stuff and rebuilding good stuff.  The pollen is heavy which always takes a major toll on his energy level.  So it’s been a hard week for him and it doesn’t seem to be getting any better.
But with all the pauses and the interruptions, we managed to go to the movies and we both really enjoyed it.  Certainly isn’t something we could do at a theater (can you image how irritated our “seat mates” would have been if I had gotten up to help comfort Lynn that often?)  But we adapt to our limitations and we find ways to have fun and get entertained.  Our Friday night date was different but enjoyable for us both.  Hey, and if you haven’t seen that movie yet, it’s a really good “feel good” movie.  I recommend it!

Going to the Movies Read More »

The Secret Life of a Caregiver

/

 I follow the writings of another caregiver, Patrick, (http://caregivinglyyours.blogspot.com) who has been caring for his wife who has MS for 22 years.  Patrick recently discovered he had cancer and one of the comments he made in his blog struck home with me.  Patrick described how he hid the truth of his illness from his wife so that she would not become upset over the news. When I read that, I wanted to reach out and give him a hug and say, “I know.”
Who, as a caregiver, has not been in the position of putting on a smile to hide the true emotions they are feeling?  I have been very fortunate (so far) that I have not had any serious illness to hide, but I have learned that I must be careful what I share. I remember coming home from a medical appointment where my healthcare provider warned me that if I didn’t get some sleep, I was likely to become very ill…and then who would care for Lynn?  More than a concern about my own health, I started taking measures to address the warning so that I would be around to care for him. 
I admit though, I told Lynn what the doctor said.  He initially took it in and encouraged me to follow the doctor’s advise.  Then I started noticing that depression was setting in for him.  He would be on the verge of tears and he was constantly asking me how I was feeling.  I realized that while I felt responsible for him, he felt guilty for the potential harm he was causing me and he was having a very difficult time dealing with it.
In the spirit of full disclosure, I will share that I am sometimes evil.  Sometimes I am so tired of being tired and I’m hurting all over from muscle strain and the burden of doing everything, and I just want to escape…then he calls, “hey, sweetie!” to scratch an itch for the 10th time in an hour or to adjust his clothing…AGAIN… or something else he needs when I’m in the middle of trying to get something done that REALLY needs to be done.  I admit in that moment, I want to make him feel guilty so that he stops needing me so much.  I tell myself that he doesn’t really need that much attention or that he just wants my company so he’s making up reasons to call me, or he’s just being plan unreasonable and impatient…. I’m angry and resentful of the situation so I say something that I think will make him feel sorry for me.  I hope you all will not think too badly of me but at those times, I’m evil and mean.  I don’t like myself after that and when I see I stuck home with what I said to him and he’s feeling guilty then I feel awful and try to make it up to him…but I admit, it happens…especially at night when I’m tired.  It’s embarrassing and I feel guilty that I’m so petty but it’s true unfortunately.
I’ve found that I have many secrets as a caregiver.  I keep my fears a secret (when will he get worse, what do I do about a caregiver, how can I manage repairs, etc.)  I keep my desires secret (I want to escape, I don’t want our life to be this hard, I don’t want to move one day)  I keep concerns about my health a secret (are those just stress palpitations? do I need surgery on my thumb joints?) I keep my “bad” self secret–my grouchiness, my frustrations, my resentment at times.  
I keep all these things secret because I don’t want to hurt Lynn.  Some of it he knows by observation and experience anyway (especially my grouchy nature)  and sometimes I share just enough to prepare him for what may come but not so much as to drive him into a depression.  It’s tough being the strong one though.  Sometimes you just want someone else to carry the burden awhile.  That’s why I wanted to give Patrick a hug and say, “I know.” 
To Patrick:
I’m praying for you, Patrick and wish you the very best. I’m so glad the surgery was successful and you dodged the bullet, but right now, it’s time for someone else to care for the caregiver.  God Bless.

The Secret Life of a Caregiver Read More »

Grieving over things lost

/

I thought I was beyond grieving about how things had changed. …or maybe we are never completely finished grieving over loss.  It seems to come back when you’re not expecting it which in many ways makes it harder to handle.
Here’s what brought it on this week.  Every morning as I’m preparing Lynn’s morning medications and nutritional supplements, he listens to his Bible lesson for the morning and then he plays a few songs off YouTube. He loves music.  He is a very talented musician and has a beautiful tenor voice.  Besides the fact that he can no longer play his guitars or hold drum sticks, he also can no longer sing.  His diaphragm muscles are too weak to sustain the slow release of oxygen needed to sing without having too many “breaks” in the lyrics. 
One of his daily exercises is to sing a little trying to strengthen those muscles.  I usually am not in the room when he sings and since he can’t sing very loudly (you need breath to project) I usually don’t hear him.  This week, however, I came into the room as he was singing along with Elton John’s, “I Guess that’s Why They Call it the Blues.”  I like the song as well, so I came into the room singing along.  As I was unhooking him from the peddlar so he could come into the kitchen to eat, we were singing along together.  I could just hear the sound of his former voice.  (Even as I write this, I have tears in my eyes and feel like crying.)  He could not sing a full verse and he would have to “cut out” at the highest notes, but the voice was still there. 
I miss that voice.
I think it was Lynn’s musical talents that made me fall in love with him in the first place.  I’m a sucker for a ballad singer…especially one who plays guitar. Plus he used to write me songs for special occasions that were beautiful.  He even wrote one for me that he sang at our wedding. (everyone say ahhhh…..)  For me, that was my most romantic part of our marriage and relationship. 
That’s pretty much gone now and I miss it.
I miss those times when we used to sing together with old songs on the radio. I miss when he used to surprise me with songs for special occasions.  I miss being in choir with him and practicing our parts as we drove somewhere.  I miss hearing his solos at church.  His voice could touch your soul it was so sweet.  I really miss it and I’m grieving that loss today.
I hope that it will return one day but I don’t expect it to.  During one of his hospitalizations, I was told his loss of lung capacity was significant and would likely decline further over time.  He’s much better now than he was but I also know that anything that affects his lungs could create a crisis for him.  Practicing singing will help make that more difficult but it won’t prevent it.
I guess the other part I miss is the intimacy that his singing gave us.  Our hearts connected during those times.  We can no longer be physically intimate and though we are closer now than we ever have been, the relationship is different when the husband has to have all his care provided by his wife.  The man wants so much to care for his wife, to protect her, to do for her and make her life better.  It’s the essence of being the husband.  When the wife becomes the protector, the provider, the one who cares for and does for both of them, it changes that relationship.  It’s still a good relationship but it’s different.  I miss my protector and I miss the romance.
I don’t know why I’m feeling this way all of a sudden.  I just got caught off guard by his singing…nothing else….but then I guess that is how grief is.  You think you’re okay and it sneaks up on you even as time goes by.  It’s just one more aspect of MS (or any life changing illness or injury) that we all live with…saying goodbye to what was and accepting what is.

Grieving over things lost Read More »