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Caregiver Perspective: Screaming on the Inside

Please do not read this if you are not a caregiver. I do not want to cause anyone with MS to feel guilt or pain because you cannot help having this horrible, horrible condition if you have secondary or primary progressive MS. If you don’t have this type of MS, you don’t want to imagine it and hopefully you will never be where we are in dealing with it. But this is our reality. This is written for those who spend every day of their lives trying to make it better for those who have been ravaged by this disease.

Here’s what I am screaming on the inside….

I JUST CAN’T TAKE THIS ANYMORE. I WANT TO QUIT. I WANT TO WALK AWAY AND NEVER LOOK BACK. I JUST CAN’T FACE ANOTHER NIGHT OF NO SLEEP; ANOTHER DAY OF PAIN; ANOTHER MINUTE OF FRUSTRATION AND DISAPPOINTMENT; ANOTHER FAILURE.

Yes, failure. My husband cannot do anything for himself except think and feel. Everything he needs, I do. If he hurts, he looks to me to fix it. If he’s tired, I put him to bed (which is a 30 minute process). If he needs to eat, I prepare it, cook it, feed him, and clean up afterwards. If he needs to empty his bowels or his bladder, I do it for him. If he has an itch, I scratch it. If his leg is stiff, I move it. If he needs anything; anything at all; he looks to me.

If what I do doesn’t make him feel better, then I have failed. As irrational as that is, I see him suffering and it tears me up inside. I know that if my efforts are not good enough, he will die. Sure, he’s going to die anyway one day; we all do, but if I don’t do all I can for him, he’ll die sooner than he should. I hold his life in my hands. If I don’t make sure he gets good nutrition and hydration, then he will have skin breakdown; be more likely to get sick; develop secondary complications and die from those. He got a urinary tract infection once and was in the ICU for three months. He changed medication another time; lost his appetite, had to be admitted to the hospital for a feeding tube, coughed it up during a feeding, got pneumonia, and almost ended up on a ventilator. About two months ago, the skin on his buttock got red. I put a bandage on it that irritated it more. I kept trying new things, some of which required tape, and new skin break down occurred. Now his skin remains tender and irritated. His entire buttock is red and sore. I can’t seem to find anything to heal it and so he can’t sit on his cushion as long anymore. Therefore, I am up every hour or two all night long adjusting the pressure in his cushion until I give up and put him in the bed. That buys us three hours at most before his spasticity requires him to get back up and use his peddler to relieve the spasms and we start over. I aim for five hours of sleep a night but in reality it’s less because of the number of times I have to get up to cath him or help him get comfortable.

I feel guilty all the time. Guilty because I resent him interrupting me when I’m trying to get things done. Guilty because I have to say no to my family when they want us to do things with them or for them. Guilty because I can’t give the attention to my job I used to give and I resent not being able to do what I know needs to be done. I feel guilty because I don’t want him to put in an exercise pool in our spare bedroom even though it could very well make him healthier because it will be just another thing for me to do…another task to perform in a day already so full of tasks that I get to bed between 3 and 4 a.m. every night. Guilty because when he calls for help, I grumble. Guilty because in my frustration I share how upset I am and he feels guilty for needing me so much. Guilty because I lie and tell him I’ll only be gone to the store 30 minutes when I know I need to be gone longer. Guilty because I know I’ll never get out of the house if I tell him the truth about how long I’ll be gone because he panics at the thought of what might happen if I’m not there and I know he’ll really be fine till I return.

I feel angry that I need to hire a nursing assistant or someone who can help me take care of him so I can go into work but I can’t because they are too expensive and insurance won’t pay. I’m angry because I want to go into work instead of working from home so I can feel successful and a sense of accomplishment and have others appreciate that I know things and can do things other than providing physical care. Angry that I can’t go to support groups because there is no one who can stay with him so I can do the things I want to do because I use them all for things I have to do. Angry because I’ve put on weight eating to stay awake. I hurt and can’t walk very far due to unconditioned muscles because I can’t take time to work out. I walk from my office to his room from his room to my office; back and forth about fifty times a day but they are short trips so I have no endurance. I could work out if he’s asleep but that’s when I do my job, or take a shower, or do things that I need to do without interruption, or I take a 30 minute nap just to keep going.

I’m scared. I’m scared that I’ll fail and he will die. As difficult as this is, I want him to live. He’s my best friend and I love him. I would be so alone without him. He is my purpose for living now. He is the center of my world and I would be lost without him. I’m afraid my employer will want me to start working onsite again and stop teleworking from home. I’m afraid my arthritis will get so bad I can’t take care of him and can’t afford help. I’m afraid I’ll get really sick and there will be no one to take care of us. I think of all he needs and how much it costs to provide it and I realize I need to work until I die so that my life insurance from work will take care of him when I can’t. I’m afraid of failing him, failing my employer, failing my children, and failing me. I’m afraid.

And yet, I push through it all. I cry in the shower so he can’t hear me. I fuss and cuss in a room away from him to get the anger out. I smile and tell others that we’re doing fine. I always get up when he needs me and I encourage him when he’s down. I sit my alarm for 30 minute naps to keep going; I eat a candy bar for energy (no wonder I have a weight problem), I write my thoughts out to share with others so that I don’t feel alone. Then, I take a deep breath and exhale out the tension. I tell myself, “that’s enough self-pity,” and move on. I find something to amerce myself in and change my focus and I strive to stay in the moment and stop looking at what might be and accept what is.

This is the life of a caregiver whose spouse has end-stage MS. I strive to keep him healthy, alive and encouraged each day and will continue to do this for as long as I can because I care and I love and I hope for a better tomorrow…and will do all I can to prevent a worse one.

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

  • xoni2f
    4 years ago

    I read this and thought I was talking to myself. My wife was diagnosed with PPMS about 3-years ago, but she has been suffering from this disease for much longer. We are both retired and spend most of our time at home. It frustrates me how little most people know about this disease. Even her doctors have told us there is nothing they can do. I am also frustrated at how others view her. They just see a woman in a wheel chair and think all is fine. They don’t see the other problems that you so correctly addressed. It’s just so frustrating and depressing, but we continue to push forward.

  • Donna Steigleder moderator author
    4 years ago

    I understand your frustrations with others lack of understanding. People as how he’s doing and all I want to say is, “how do you think?” but instead I say “fine” or “just the same” because I know they don’t really want to see the real side of this life. God bless you and just put one foot in front of the other and keep trudging along.

  • SusanM
    4 years ago

    This is my life! My husband was diagnosed 5 mths after we got married. (26 yrs ago). He has been unable to work for 15 years and it’s been tough and our two children and me! I’m lonely, no time with family and friends, and I too am stressed out worrying about finding him dead when I walk into our bedroom to check on him:( Every 4 mths he is admitted to the hospital for UTI/Dehydration and I feel like they are judging me! He is at stage 9.5 with his MS and I have taken him to so many neurologists, tried every single treatment possible, even holistic, but I cannot eat and drink for him! He is the love of my life and seeing him lay in the hospital bed tears my heart out! He needs to be in a nursing home but like others no funds. Tried to get him on Long Term Medicaid but little I would be allowed to live off of wouldn’t pay the bills and I only have the mortgage, utilities, insurance because used what little savings we had to pay off car and do home repairs. I feel for the caregivers! I am the only one, no family nearby, can’t afford anyone to come in and watch him. Each time he’s in the hospital then nursing home for 21 days (bring him out because I can’t afford to pay after Medicare pays the first 21 days)therapy doesn’t help at his stage. Friends have their own lives so I just sit in the house and cry. Everyone tells me get out, walk, go to the beach. They don’t understand that it’s depressing to do these things alone plus you worry about leaving your spouse for an hour! Caregivers are stressed out, lonely, depressed, and always feel like they haven’t done enough for their loved one! I never knew 26 yrs ago that MS would do this to my husband! Yes, I expected maybe weakness and possible wheelchair but not Dementia, swallowing issues, etc.My heart goes out to each and everyone of you that go thru this!

  • Donna Steigleder moderator author
    4 years ago

    Susan, I feel your pain, truly. I have the same issues and concerns. I keep a monitor on all the time so I can hear him call out if I’m not in the room. I never leave him home alone unless he has his phone and all he will need right beside him and is in his wheelchair in case he needs to urgently get out of the house. I have to go to the store at times but I worry each time that he will fall over or something will happen and he will need help and I won’t be there to help. Fear and guilt are constant companions. God bless you and all you do for your spouse.

  • MarcieKim
    4 years ago

    Donna, I hope it’s OK to ask this… Why is your husband not living in a nursing home? The current situation seems incredibly unhealthy for you (and your health matters as much as his, right?). I am guessing it’s just too heartbreaking for you to consider. This is all top of mind for me as my husband has SPMS and will soon have a level of care beyond what I think I can manage effectively at home without compromising his health and mind. I am a busy mom to our young children and have a full time corporate job. Something’s got to give, right? I have been online researching the financial implications so we can figure out how to pay for his care – which essentially will mean liquidating all of his/our assets. I would love to know your thoughts on nursing home care since you didn’t address it in your post. Hope I have not offended you!

  • Donna Steigleder moderator author
    4 years ago

    No you have not offended me at all. There are several reasons I don’t have him in a nursing home; the first being that I know that he cannot get the care and attention he needs in a place where he is just one of several patients needing attention. I know that the fact that I have been able to continue to intermittently cath him has kept him from getting UTIs and kept his skin in as good of shape as it is. I honestly think if I was not caring for him, he would be much worse off than now because realistically when you have many people to care for, even a nice nursing home can’t give the level of care I can.

    Second is the cost. I make too much in my job to qualify for financial assistance and if I quit and liquidated our assets, it would not be enough to put him in a nice facility and still allow enough for me to live and pay off our debt.

  • mob29d
    4 years ago

    I’m glad you write these posts because it makes me feel much less of a bad person for feeling the way I feel. I often find myself furious and spiteful that I have to be the one taking care of my mother who has had ms since I was 9 and I have been taking care of her throughout my adult life – leading me to miss out on all sorts of opportunities with my career and personal life. There’s no way for us to hire care at all so at 24 I am basically stuck at home all the time taking care of her and it makes me feel so guilty that I hate it so much

  • Donna Steigleder moderator author
    4 years ago

    I think the feelings you describe are very natural and that we have all felt them at one time or another. I hope that you will find a way to make peace with your situation but I also know that each day can be a struggle and the battle to overcome that anger, can be a daily commitment.

  • mario lobo
    4 years ago

    Donna,
    I’m caring for my wife who has SPMS. Her condition is not nearly as severe as your husband’s (yet?) and therefore my life isn’t impacted nearly as much as yours is, but even so, I feel how you feel, but maybe not to the same degree. I resent the situation, the lack of sleep, the lack independence and spontaneity, the financial impact… The list goes on and on. If there is a positive side to being a caregiver, it’s that it really strengthens one’s character and tests you.You encapsulated it at the end of the second to last paragraph when you said “….strive to stay in the moment and stop looking at what might be and accept what is”. That’s a lesson for everyone.
    Thank you for your no holds barred postings. They mean a lot to many of us who walk in shoes similar to yours.
    Mario

  • Donna Steigleder moderator author
    4 years ago

    Thank you Mario for your kind words

  • Chloye Bailey Pogue
    4 years ago

    Donna, you described my life with my incredible husband’s journey through MS from 1976 until his death in 2007. He was virtually bedridden the final 20 years of his life and I cared for him the way you described caring for your husband. I can remember so often saying in my mind some mornings “I don’t know if I can do this another day” and then I would feel a presence next to me saying almost audibly “Chloye, we are going to get through this together just like we did yesterday”. I would have to smile and nod my head and agree with Jesus, who was the presence beside me. Look to the Holy Spirit to guide you each day and you will survive. I rarely left my husband for a respite but I went to the beach with my friends for a few days and he died while I was away. I had left him with a caregiver whom he knew well and was extremely capable. I still have guilt feelings at times thinking he would not have have died had I been there. I’m convinced though that God was sparing me the trauma of seeing him die. I will pray for you and your husband as you are continuing through this journey.

  • Donna Steigleder moderator author
    4 years ago

    God bless you for sharing your story with me. I feel on many days that Jesus carries me through the day and know that without his arms to hold me up, I would surely collapse.

  • Joan
    4 years ago

    Donna, I believe that you must take a break by getting someone (family, friend, paid caregiver) to take over long enough for you to get proper sleep. Sleep deprivation is torture, and I know something about this. My 38 year old daughter is almost like your husband, but she still can speak a little (it’s getting harder and harder). I don’t know if your husband is blind, like my daughter. She has just decided it’s time for a hospital bed because being propped up on the couch during the day is too hard for caregivers and for herself, etc.

    It’s a shame that you can’t find a way to get someone to help you. There must be a way – it’s the only way you’ll be able to save yourself, and you must save yourself first, even before saving your husband.

  • Donna Steigleder moderator author
    4 years ago

    Thank you for your concern. I do at times have people to come help him while I work from home. I’m very blessed to have that support but the reality is that there is only so much they can do and the rest is up to me. It just takes a lot of time each day to do the essentials.

  • mscaregiver99
    4 years ago

    THANK YOU so much Donna for keeping it real. I was feeling super-guilty thinking “why can’t i just be strong and take-it! like Donna”. “I just can’t take it anymore” pretty much sums it up for me. It has consumed me. I feel overwhelmed and paralyzed.

  • Donna Steigleder moderator author
    4 years ago

    I am glad you were able to connect with this. I often worry that my sharing real life will bum some people but for those who are deeply immersed in providing care, I hope it helps you to know that your emotions are normal and expected and can be shared here if it helps.

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