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The Few, the Proud, the MS Spouse Caregivers

The Few, the Proud, the MS Spouse Caregivers

As a MS Spouse Caregiver the whole taking care of yourself mantra borders on being an oxymoron.

If your partner has mild MS, maybe it’s possible, but that has never been our story since Thanksgiving 1989 when I held our 18 month daughter in my arms as Patti was hospitalized for her first major MS exacerbation.

I suddenly had two someones to care for full-time.

Caregiver health is not always a reflection of not taking care of yourself anymore than getting MS is.

Cluster headaches

Soon I began having Cluster Headaches. Decades ago they were nicknamed ‘suicide headaches’ as some experts have suggested that it may be the most painful condition known to medical science.

Years of misdiagnosis as sinus headaches and later Migraines did not help. Multiple Sclerosis is a rare disease with a prevalence of 1 out of 750. The chance of Cluster Headaches on the other hand is so rare the prevalence is 56 out of 100,000.

Dealing with pain

I took care of myself by going to our cellar which I had arranged with room monitors to listen to Patti’s and our daughter’s room while I screamed into pillows until I awoke on the floor passed out from pain. Since I needed to be able to be instantly alert to respond to Patti or our daughter, medications were not an option.

Fortunately duration of headaches was brief from about 20 minutes to a max of two hours and my episodes settled into a routine of recurrence every 14 months, usually lasting about 90 days.

While passing out from pain was frequent it was not the cloudy drugged sleep of medication which would have impaired my caregiving. Fortunately with few exceptions my cluster headaches attacked shortly after falling into REM sleep. Once or twice I was knocked to my knees in public.

Nothing ends without learning

Nothing ends without learning. Empathy for pain in others and a window to better understanding life altered by disabling symptoms are lessons learned from a brain writhing on a corkscrew. You drag yourself off the floor and get back to taking care, remembering above all that you can get back up. The spouse with MS rarely has the choice.

The physical aspects of caregiving

Early on I had surgery to repair herniated groin muscles I had torn lifting Patti’s scooter in an out of our station wagon. Heavy lifting while critical to MS caregiving can be helped with machines and assuming you have the money to buy them.

In 2004 I began the South Beach Diet and lost 50 lbs in 6 months which helped my back immensely for the more physical aspects of caregiving.

Across the decades of caregiving, I’d guestimate I’ve pushed Patti’s wheelchairs at least 5,000 miles (8,000 kilometers). Not getting any younger and with my back aching more and more, in 2010 I joined Planet Fitness.

Hey athletes train their bodies just to play games, spouse caregivers need their bodies.

Long-term MS spouse caregiving

In Caregivingly Yours, MS Caregiver I was guilty of dully sharing the statistics of risk in long term MS Spouse Caregiving.

‘Stress diminishes the immune system and increases my chances of cancer and chronic illness, shortened life expectancy and all that stuff.’ Sharing that I was diagnosed with lung cancer 16 months ago (22 years into MS spouse caregiving) likely gets other caregiver’s attention.

So 6 weeks after recovering from lung cancer surgery what did I do? Where others might take back off, I pushed Patti around an island in the Susquehanna River.

I pray your partner’s MS remains forever mild. If not welcome to the few, the proud – MS spouse caregivers.

Editor’s note: We are extremely saddened to say that on November 11, 2013, Patrick Leer passed away. Patrick was an essential member of the MultipleSclerosis.net community, providing unique insight and perspective as the primary caregiver to his wife, who has MS. His heartful writing continues to reach many. He is deeply missed.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Tomboy59
    3 months ago

    I just read Patrick’s story. Almost 6 yrs late. Iam so sorry patrick. I honestly mean that. I understand most of the caregivers strengths and weaknesses. I know you gave it your all for Patti. While also fending for yourself. GOD BLESS YOU AND ALL THE OTHER CAREGIVERS. Coming from someone who’s been fighting this nasty, ugly, piss me off daily, Disease that not only does it beat the hell out of us m.s.ers. But unfortunately it takes its toll on the Caregivers, Family Members, our boyfriend girlfriends as well as our close friends, the ones that stay around after the symptoms start appearing. Most usually start pulling away when they see you struggling or not able to jump up get dressed and meet you down the pub to watch the big game. The Caregivers are the ones that stick it out. They give up a huge part of there lives to see that we pretty much have the things we need. And to be there for the times we just cant do things by ourselves. And that leaves the door wide open depending on where you are with your journey with M.S. Patrick. Although I’ve never met you personally, I’ve read through your posts. And can feel your own pain along with Patti’s. I see your at peace now. AMEN. I hope Patti is doing ok. I just want to say Thank You Patrick. And All of the other CAREGIVERS who put in so much time, energy, and love helping people get through there days. And that means anything from A to Z. YOU FOLKS PROBABLY DONT HEAR IT ENOUGH. SO HERES A HUGE THANK YOU. FOR ALL YOU DO.
    TOM

  • Musicang
    5 years ago

    You all are so fortunate to be in the situations you are in. The person I thought was my caregiver informed me after 9 years that he was tired of me not doing my fair share and was not up for this “caregiver business”. Two days later, I discovered he was having an affair. All of this was a week and a half after we had attended a weekend retreat specifically for people with MS and their caregiving partners/spouses.
    Needless to say, I was/am torn up inside. He had been having the affair for at least 3 months prior to the retreat. I have 2 young children and most of my support is 700 miles away. He will not allow me to go back home with my kids even though I am not convinced that he really cares to see them that often.
    He has been verbally abusive for years, but I am not sure I can get anyone to really believe me. The kids have admitted they are scared of him and his explosive outbursts, and I feel completely at a loss. I am trying to be the caregiver to my children because I must. I am also trying to care for myself and the home he still lives in. This is an exhausting, stressful situation. I applaud those of you that stick it out and care for those you clearly love and if you are married, for believing in and sticking to your vows.

  • Donna
    6 years ago

    What if you have a husband and two sons out of three diagnosed with MS. What if your husband and your youngest son are both on disability? What if your youngest son is in worse condition than his father? What if your husband needs to use his cane but will not most of the time and you are left to worry he will fall and hurt himself? What if depression has taken over your life and you struggle to face the reality of being in a loving relationship of 43 years and seeing your best friend get worse every year and you can not stop this disease from taking the toll on your spouse and sons….My oldest son will not get tested for MS, he does not want to know as he sees the toll it has taken? I am really trying to take care of myself mentally, spiritually and am working on the physically part of it but it is so very hard, so very hard.

  • Valerie
    6 years ago

    I truly admire you both. I was dx in 2006 having my first exacerbation, the MS hug. I was put on several different heart meds, didn’t take a one, being in nursing, I knew it wasn’t my heart.
    Then when the dx came I was devastated but not surprised? The symptoms had been there off and on for years.Who would have thought it was MS?
    I have given up so many things due to sever disc degeneration/fusions. Being an athlete/weight lifter/runner/exercise freak; well. I’m 62 now. Funny, I cried when I sold my weight bench and the people came to get it. Still have my treadmill though. Ha! Now since the “major” exacerbation, the heat, the cold, always carry water when going for walks just in case. Been there done that, sigh, not a good thing. Don’t over do, blah, blah, blah. Then there is the itching that comes from no where. But where in the heck is the rash? So now your all bloody from scratching yourself raw. You can handle it yourself for sure with liquid Benadryl, NOT.
    My PCP is more informed with MS than my Neuro and I have learned so much from her. My husband,..has no patience when I try to say something and the words are there but they don’t come out. Spit it out, spit it out. Sic, like I can at that given moment. My daughter on the other hand tells me to calm down mom and take a deep breathe, it’s ok. It works mostly all the time. My own embarrassment and frustration causes more stress and makes it worse.

    My husband is always telling me about the seminars around our area on MS and the monthly ones at the Hospital? LOL. My Neuro and my Dr. said I already know what I have and what it’s doing, they think most of the families and caregivers are the ones that should be going.
    My husband though, believe it or not, gives those who are newly dx’d and struggling my name and # and I will always go.

    I have bad days, cry and feel sorry for myself, not often anymore but I do. For which I or anyone with an incurable disease or an unseen disease (that saying “but you don’t look sick”) is allowed, we are only human after all. But when I do he is there for me because then; it finally hits him.
    I have learned though before I get out of bed I tell myself “today is going to be a good day”. It could turn out to be stress filled, overwhelming, painful, etc., but I remind myself that I told ME; it was going to be a good day. Somehow, it does turn out that way in some form.

    You caretakers, kudos to those of you who have an understanding or try to have an understanding of MS. I truly do admire you for taking the time to learn about what having MS is. If you haven’t, go to some classes or seminars.

  • JulesPMH
    6 years ago

    I commented on the article “Living Well with MS: Surviving an MS Relapse” on how difficult it can be when your only caregiver also is or becomes disabled.

    This article sounds so familiar, except for my issue is not as serious as cancer, fortunately, but chronic pain due to a neck injury sustained in a car accident. Additionally, because I happen to be “the wife” and 5’3″ to a 6’2″ “hubby,” the looks are/were a LOT different when I would be systematically loading and unloading the 60 lb. ramp and his power chair into and out of our Saturn Vue (which they JUST barely fit into, so most of my back injuries were the result of trying to “yank out” the ramp, which was WEDGED into the cargo gate, in addition to being chest height and weighing half as much as I did…

    We don’t have children…yet. We talked about it, before he suffered his first onset of symptoms. We had just moved to Las Vegas, we were 2,400 miles from all of our family and friends and had left our entire support system behind. I was terrified of having kids and we said we’d have our one and only child as soon as he finished school and we could move closer to home.

    Then he had his first exacerbation and no one could tell us what was wrong with him, but he was so dizzy, he couldn’t walk unsupported and was in a wheelchair for 3 months. Then he slowly got better and was okay. Until next year. And the next year. He suffered relapsing and remitting symptoms and we had no idea what was wrong with him for 3 years. Every time it happened, I was terrified – as far as I knew, he could be dying, and no one could or would tell me what was wrong with him. The doctors kept saying NOTHING was wrong with him . . .except he would get so dizzy and weak he would collapse, nearly lose consciousness, his eyes would roll back into his head, he wouldn’t be able to speak for several minutes, he would have tremors, and would complain of tingling and numbness in his limbs and other various parts of his body, and we went through this for over three years before the words MS were uttered, but we thought, “No way, he doesn’t have THAT.” Until we actually read about what MS was, and were convinced…only it would be 3-4 more years until he was actually diagnosed, could receive treatment, get accommodations, even proper insurance coverage during exacerbation, since the only diagnoses he ever got were “vertigo” and “vasovagal syncope.”

    Once he got sick, we talked about kids again. Now I was even MORE terrified. 3-4 months out of every year, aside from getting the power chair in and out of the car to keep him mobile OUTSIDE of the house, INSIDE of the house, I was his walker. When he was at his worst and needed to get to the bathroom or to bed, I would walk him there. The living area of our home (purchased after his first onset of symptoms, which we didn’t think would be coming back) is upstairs, very small, and cramped. No room for a chair. We had a walker, but when he is at his worst, staying upright is the problem, and he would likely take down the walker, so help staying upright (balanced) is his greatest need – a walker only provides support.

    I would of course get yelled at by my doctor and chiropractor for doing so, and would also be told, “If he falls, you cannot pick him up.” Yes, I was expected to leave my husband lying on the floor all night. Give him a pillow and a blanket. (After the accident, there are times he does this and I have no idea what is going on because I’m out cold in bed already, having no idea he’s spending an hour and a half crawling to bed.)

    However, prior to the accident, there was a new condition added to our family planning- which he thought was unfair, but had to admit it was reasonable, nonetheless. He had to be diagnosed first. At first, we had no idea what was wrong. We did know that, 3-4 months a year, he was very much dependent on me, and (a) adding a new baby to that mix to make TWO people completely dependent on me would be incredibly stressful, especially with no support system, and (b) considering how he was dependent on me, what would happen when I was 6, 7, 8, 9 months pregnant and he fell? We needed to know what was wrong and what the future held – would I be a single parent? – a widow? – in the near future, or would he be able to get treatment and get better?

    Then, the accident…and I’m on so much medication, pregnancy isn’t an option until I get better and can stop meds. I have been undergoing multiple procedures in an effort to kill the nerves and therefore the pain, one just 2 days ago, and am currently working hard at doing NOTHING and remaining as stress-free as possible – hence my ability to write this – in an effort to give the procedure its best chance to work this time! My husband will be finishing school in January. He was diagnosed in May 2011, 2 months after the accident, started Solumedrol and Avonex, but eventually had to stop both, and is now being treated with IVig, and has not had a serious PHYSICAL exacerbation since starting treatment, though the physical symptoms have been increasing somewhat since stopping Avonex. There has been an increase in cognitive and emotional symptoms, as well. It’s now on me, though . . . he fulfilled his end of the bargain, and now I went and screwed it up.

    So, what happens when you’re an MS Spouse Caregiver who is also sick or disabled? You take care of each other. You figure it out. I can’t do any heavy lifting, anything requiring upper body strength really, or anything requiring looking up for a long period of time. Also, I’m short.

    My husband can’t bend over. He can’t get on the floor. He has trouble climbing stairs. Of course, he can’t tolerate heat, humidity, or loud noises.

    Therefore, we do the best we can, and have hired someone to come in for about 3 hours once a week for those things that neither of us can do without hurting ourselves. I do the dishes as much as I can (but I can’t scrub…) and load the dishwasher…I unload the bottom of the dishwasher, and he handles the top. I do the laundry, and if he can, he carries the baskets upstairs – if not, our “household assistant” does. We trade cooking duties, I get the pots and pans from the bottom shelf, get anything needed from the downstairs freezer or pantry…

    Bottom line, he spends more time lately taking care of me than I do of him. But we do what we have to. That’s what being a Spouse Caregiver is all about, no matter what the disability or circumstances.

  • Patrick Leer author
    6 years ago

    Jules you have the nail on the head … thank you for sharing … story after story I sit and awe and frankly frustration that decades ago before the Internet that we never knew there was another couple like us .. thank goodness for MSNet

  • Bill Bennett
    6 years ago

    “The few, the proud,MS Spouse Caregivers”, is a very interesting presentation. I too am an “MS CAREGIVER” except my situation is the opposite. I am the one with MS, & fortunate in my ability to be able to “BE THE CAREGIVER” for my wife (76 yrs of age) who was diagnosed this past Dec, with Alzheimer’s (vascular dementia). I keep patting myself on the back and saying “GOOD JOB” it is great for my ego. I always refer to my MS as “A MINOR INCONVENIENCE”, this week-end I discovered it is no longer minor and it scares the hell out of me – forget the ego.

    According to her doctors,my wife’s Alzheimer’s is progressing much more rapidly than expected. Yesterday morning (5/27/13)I discovered how severe her situation was as well as mine. I was in our front yard video taping the deer which frequent our home, when my wife opened the garage door (which she never does) and came out via the garage. She had decided something needed to go in the trash. She is supposed to use a walker, but this time she used a cane. She is also disabled not only by the Alzheimer’s but as a result of several age related problems.

    She saw where I was standing and decided to come toward me. Not paying attention to where she was stepping she put her can down and it caught against the curb causing her to fall backward into the street where she hit the back of her head on the pavement and knocked herself out. I learned then I can neither move fast enough or steady enough to stop things from happening. I hobbled to into the garage called 911 and got a blanket to keep her warm.

    To make a long story short, she was taken to the ER and has a mild concussion as well as minor abrasions and bruises. The scary part is, several years ago she had two aneurism surgeries and has metal clips to avoid additional bleeds in her head. She developed a very large lump exactly where the one clip is.

    It was then I learned “EVEN THOUGH THE HEART IS WILLING AND HAS THE DESIRE — MS’ers make lousy caregivers at times. I do however, make great fudge so I guess that is a point in my favor. THANK YOU TO ALL OF YOU WHO CARE FOR US MS’ers and US MS’ers WHO TRY TO BE CAREGIVERS. We may stumble and fall but we never stop trying.

  • Patrick Leer author
    6 years ago

    Bill what a powerful story … thank you for sharing

  • Rachael Majka
    6 years ago

    It really sucks that you’ve had cluster headaches and then lung cancer. I would hope that Patti would have done all she could do to be a caregiver for you as well. That’s what partners do: take care of each other.

    As someone who suffers from MS, your article reads as though you’re deeply resentful. It seems like this article highlights that your long time suffering is ignored, because your wife’s suffering is more important.

    I was hoping, when I saw the title “The few, the proud, the MS Spouse Caregivers” that I would have an article that I could share with my husband, who is my caregiver, to help him feel a sense of solidarity with others. Instead, it reads like a warning: caregivers don’t matter as much as your partner with MS.

  • Patrick Leer author
    6 years ago

    Sorry Rachel I guess bad writing on my part as you misunderstood my post … resentful no … my hope was simply to be a ‘heads up’ for those who may suddenly find themselves stepping into a quarter century of spouse caregiving that no matter what personal health problems we have … as a caregiver we will always be secondary … kind of intended to debunk the concepts of respite, etc or caring for yourself .. it just ain’t going to happen because MS is relentless

  • Ronald Huff
    6 years ago

    God speed to all of you, from a long-term MSer who has relied on many others, including a spouse.

  • Pops
    6 years ago

    This is an interesting thought, I’ll take it one step farther, What if both the husband and wife have MS?

    I met my wife while working for the local MS Chapter as a almost full time volunteer. I was helping out with the MS walk and my wife to be got into a conversation about needing some assistance with some house repairs. I volunteered to come out and take a look, I had my own handyman business before MS.

    We hit it off pretty well and I repaired some items at her house and before you know it, we were engaged. I have PPMS and she has RRMS. At the time she was using a wheelchair for anything out of the house but was getting gradually better. I was just starting a bit of a downhill slide which forced my retirement after 22 years in the Navy.

    There you go two people with MS and each of us b

  • Patrick Leer author
    6 years ago

    Congratulations! … and actually I do know another couple through cyberspace who both have MS… Dan and Jennifer Digmann have even published a book … “Despite MS, to Spite MS”

  • Pops
    6 years ago

    Sorry, hit the wrong button. We were married almost 20 years ago and have two wonderful children 17 and 14. We also opened up a business,which is a hobby business, we don’t draw a paycheck, but it pays for itself and gives us something to do. We are together pretty much 24/7 and we compliment each other in the running of the business. There is almost always a to handle any situation as long as you can work it out together. We have also been lucky in the slow progression of my MS and her fairly infrequent exhaserbations. It can be done.

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