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Spouse Caregivers Unite

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    Spouse Caregivers Unite

    Hello everyone. Hope everyone is doing well; staying safe & healthy through the current crisis.
    I've thought about reaching out many, many times over the years and it took COVID for me to actually do it. Years ago, there was a chat room with a time frame dedicated to caregivers and I hope that can return. I'm not sure if people are just posting their comments and concerns elsewhere but I haven't seen many recent posts by or addressing caretakers in this forum. Hopefully that can change.

    I honestly do not even know where to start there are so many things in my head and so many things I want to ask, inquire about. I guess I'll start at the beginning and see if I get any 'takers' to my post...

    My husband was diagnosed in 2009. At the time, he was a sales manager for a local TV station and honestly larger than life. Everyone loved Matt - he was THAT guy. Was a perfect fit for me because I could always stand beside him and let him do all the talking. His diagnosis was followed by about two weeks of immobility - where he needed help even getting out of bed. But shortly after that, he was up and going again, working, playing golf, running our son all around who was in tournament baseball at the time. Fast forward a couple years, he had quit his job - to this day, I'm not really sure WHY he did but I didn't question his decision. He then came to work at my parents' business, where I was at the time. My parents were wanting to travel more and it was always the plan to have Matt and myself run the business. Not sure if the stress of the business or a family situation around our son with baseball caused his decline from there but stress is the only thing I can think of and I know it is a HUGE issue with MS. Working side by side, I noticed some memory issues but nothing TOO alarming at the time. His mobility was less and he used a cane for longer than normal walking. Fast forward again and while he was still working the memory was getting so bad that I was talking on more of the responsibilities at work. One day he was in a wreck, his fault and something that should have NEVER happened (he was a great driver) so I knew it was time for him to stop driving. Only to find out later that he actually had gotten lost before driving somewhere in our fairly small town.

    Wow, this is already turning into a book so I will skip forward many years...
    When it was decided that he couldn't work anymore and his memory was getting so bad that he couldn't be left at home alone, I painfully thought putting him in an assisted living facility would be best because he could interact with people. At the time, I thought his brain was the one/first thing I needed to try and 'save'. He lived in an assisted living facility for five years. It may have given me some space and peace but it wasn't easier as the facility was geared more towards older people. Matt was the youngest there at 50 years old. By this time, Matt could no longer care for himself and while he wasn't a fall hazard, his mobility was affected as well. Couple years ago, situations changed for me and I brought him home. I hired a caretaker for when I had to go to work but every other time, it was me.

    Over the course of eight years, Matt has had home health therapy, he has had outpatient therapy, his caretaker has worked with him as well. While he talks about going out and playing golf - which he honestly believes he can even though he is in a wheelchair now - that is about as much effort as he puts into anything. I didn't grow up around my husband and we met later in life so I didn't know much 'backstory' about him. I've reached out to his siblings and have heard that Matt has always taken the 'easy' way out since he was little and that he quit things often. While 20 years ago I would have argued that statement, when I look back at our own lives together I can see the pattern.

    I'm literally at the end of my rope. The things Matt remembers and the things he doesn't baffle me and I know that is part of it. But, my husband is lazy beyond words and he will tell you so. THAT he knows. He doesn't remember anything about our lives together - asked me the other day if we actually ever got married. Talking to him about ANYTHING is painful because he'll either ask me the same question numerous times or he won't remember what we were even talking about.

    Matt currently has mobility, cognitive, memory, and bladder issues (he has had a suprapubic catheter for about a year now). I've come to the point that when something happens because he is too lazy to move, I yell and get so angry. I feel and know sometimes he'll just do the minimum because he knows I'll pick up the slack. That is IF he does the minimum at all. Since COVID I've given him his wheelchair because he will not get up from his chair in time for bathroom use. And since he has his wheelchair, I've been having him do a FEW extra things like throw his own trash away or put his dishes by the sink. The ONE thing I've had to be on him is to actually come out of the bedroom DRESSED! I cannot tell you how many times he has come out in his wheelchair in just underwear and a t-shirt. You cannot tell me he doesn't know better than this.

    I feel he takes advantage - his caretaker is a sweet girl but he tends to wrap everyone around his finger and 'use' them. So, how can I believe some of the things he tells me that he 'doesn't know' or 'can't remember'? I truly believe he knows "right from wrong" and I do not ask him for much. Yet, we have the same 'argument' (actually it is always one sided because from him if asked why anything, I get an "I don't know") day after day after day.

    His last PT was probably 8 months ago and his therapist asked him if she signed off on him being able to come back for more - would he put in the work because he needs to do his part...he said no and by this time, I wasn't going to push the subject.

    He's on anti-depression medicine, but he has never been the depressed type anyway - still isn't really. Seeing a therapist wouldn't do any good because he wouldn't remember what they told him and he definitely wouldn't do any follow up. If I went with him, I would be answering all the questions for him.

    I think I could go on and on but I already know I've probably lost most of you with my whining so I will try to wrap up now. I've heard all the 'make time for you' speeches too but it is VERY difficult to make time when I have to worry about making sure Matt is tended to at every turn. Plus, when I am gone he tends to call me and even the last time I made actual plans to have lunch with a friend, I got a call saying he was having bathroom issues so I had to leave and come home. It's utterly exhausting. I truly believe I would not feel this way if he would give me just an inch. Am I seriously asking too much? Is it not possible? Would he be better off in a home? I do not like the person I am when I'm around him having to 'deal' with him because, like I said, I feel he takes advantage too much. Is that my fault? Did I create the monster? Is ANYONE feeling the same way???

    Thanks for making it this far.
    Stay safe & healthy always...

    Brenda

    #2
    Hello Brenda, sorry you and Matt are going through a rough patch. I really dont have any experience with this type of situation but I can understand your frustration. Sounds like you think Matt should be a little more independent or at least try a little harder to contribute. I know MS can be a crippling disease and some of the fatigue I have experienced is truly incapacitating. I could see where some of my previous behavior could be taken for laziness. I hope you find the information and or help you are looking for.
    The future depends on what you do today.- Gandhi

    Comment


      #3
      Hi Brenda

      I can understand the frustration, exhaustion, and sadness of caring for a loved one with cognitive deficits.

      My Mom had early-onset Alzheimer's disease (she started showing signs in her late 50's), and it was heartbreaking at times.

      If you don't mind my asking, has Matt been seen by a Neuropsychologist for an evaluation or assessment? Thanks.
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        I appreciate your insightful and honest story revealing your challenges. While I am the person with MS, this type of thread can assist me as my disability worsens. Itís important for me to keep pushing myself to remain as independent as possible. Do what I can to still be a spouse and not just a roommate. Thank you

        Paula

        Comment


          #5
          We actually did finally have an appointment with a neuropsychologist but then the pandemic hit and it was cancelled. I'm hoping to get it scheduled again VERY soon because I am very interested to see if he could also have onset Alzheimer's. I asked him neurologist this and while he said it is rare, it can happen so we shall see.

          Thanks for all the replies.
          Hope everyone is staying safe!

          Brenda

          Comment


            #6
            Originally posted by brenmatt97 View Post
            We actually did finally have an appointment with a neuropsychologist but then the pandemic hit and it was cancelled. I'm hoping to get it scheduled again VERY soon because I am very interested to see if he could also have onset Alzheimer's. I asked him neurologist this and while he said it is rare, it can happen so we shall see.

            Thanks for all the replies.
            Hope everyone is staying safe!

            Brenda
            Thanks Brenda.

            If you would, please continue to keep us informed as to how you and Matt are doing.

            Your experience may help other members, and hopefully the experiences of others may be helpful to you as well.

            In any case, we're here for support.

            Wishing you and Matt all the best.
            PPMS for 22 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment

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