Life is all about change. Nothing stays the same. Not in any cell in our bodies, not our circumstances in the play of life, not our hopes and dreams.

Everything changes. Some changes are scary. I love to move and we’ve moved 16 or 17 times over the last 35 years. Four of these moves have been to either other states or in one instance another country. These moves were scary and the change was exhilarating – big understatement.

Now I’m faced with change within my family. From reading this blog you may know that my husband is seriously ill. He doesn’t have an acute illness but rather a chronic debilitating disease. He has cortical basal degeneration. This is a Parkinson’s like disease only worse as the progression and debilitation is much faster. He has to hold onto a walker – or a wall mostly since he won’t use the walker much – to walk. He can’t move sometimes at all and stops and starts.

The doctors say he will become more rigid until he needs to be fed with a tube because he can’t swallow. He chokes when he eats and coughs all the time when he isn’t eating.

He sleeps in his chair at the dining room table all day. The chairs are super comfortable with cushions and arms. He falls over in his chair sometimes and he has repetitive leg movements. Sometimes he will jerk and tremble while sleeping.

He can’t make it to the bathroom a lot of the time. Our home is inconvenient for a person with a movement disorder. We have one bathroom upstairs and a toilet downstairs in the basement.

He can no longer bathe himself appropriately. He doesn’t shave unless nagged and most of the time will come downstairs in the morning without his glasses. He’s super nearsighted.

He can’t carry dishes to the sink because he’s so unstable that he can’t hold something and walk.

He also suffers from dementia and this is getting worse – I thought there was no worse to be had, but there is. He shuts off the TV at night when I’m not in the room by shutting off the power strip. We have satellite so I have to reboot the satellite all the time. He doesn’t pay attention when I tell him not to do this. He unplugged the satellite connection which has a separate power source and I didn’t know he had. I couldn’t get the TV on so that he could sit in front of it. Those are the only times he stays awake.

Last week he ended up on the bedroom floor trying to put his pants on. We – our son and I – could barely get him off the floor. The same day he crawled up the stairs to go to bed. He takes 5 or 10 minutes to get into bed because he doesn’t have the energy to push himself up and into it.

Last evening our son said his power went off to his room. DH was in the basement. I went down and he’s in front of the circuit box flipping switches. He has done this before and was told not to ever do this again. He was doing it but couldn’t tell me why because he can no longer say anything except yes and no and good.

Messing with the circuits in the house is dangerous. I guess some part of his deteriorating brain still holds onto the fact that he was an electrical engineer. He thinks he can do things. The last time he was flipping circuits was because a light bulb was burnt out.

I noticed he also had been changing settings on the washing machine. He’d switched a super load to a small load. An enormous king size quilt was in the washer. i’m surprised the washer didn’t break. It may have, I haven’t used it since then.

Saturday night our son flipped out over the sheer depression of the whole situation. The constant need to watch his Dad and the pressure we’re both under. We are to the point we can’t take care of him anymore. We both are in a word or two – burnt out.

I took DH to the ER and spent 3 hours there seeing if his greater debilitation over the last two weeks had a physical reason rather than just the progression of his disease. They said no. No infection, no heart attack, nothing that could have led to his being more confused and with less movement ability.

I was told by the on-call physician at our clinic that I need to call in and talk to our primary care physician to start the plan to get him alternative care. In April our agency on aging had told me he sounded like he needed assisted care. If so I don’t think Medicaid will pay for it and I certainly can’t afford it. We will have to see. There will be an assessment.

A year ago I was told to get guardians and conservatorship for him. He was past the point where a power of attorney would work. I will have to do that now.

So changes are coming. I didn’t want him to have to go to a nursing home but DS and I have some value too and we can’t live like this. If this goes on, both of us will be ill. We are hanging by a thread.

Change will have to happen. I hope it’s a good change.



8 Comments Add yours

  1. Jennifer says:

    Oh but it does feel so selfish, to not want to do this any longer. I know it’s not under my control, but then why must I always think I am needed in ways I can’t give any more? Questions to ponder on a dark midnight.


  2. It’s not in your hands, Jennifer. It never has been. In love and for your personal peace try to find serenity in surrendering to a Higher Power. This is not selfish; it’s extreme self-care.


  3. Jennifer says:

    Reblogged this on A Little Fluff and commented:

    A post from over a year ago ………. time has moved on but the situation is the same. I do not know how long the Cosmic Consciousness will decide to keep him in this life. This is the hardest thing I have ever lived through, and I’ve been through a lot.


  4. Jennifer says:

    Thank you so much. I’m sorry your mom is still having a rough time. I hope she finds comfort knowing she did all she could. My dad lived to be 84 and when he was my husband’s age he was still roofing garages – so I surely wasn’t prepared for this. We have an appointment Friday with our primary care physician and social worker so I have my fingers crossed. We surely do need a break! Thanks again – God love you!


  5. Jennifer,
    First of all, I thank you for visiting my page. I came to return the visit and read this piece about your husband and the stress and strain you and your son are under in caring for him.
    My heart goes put to you all. It sounds so sad and difficult. I lost my dad seven years ago to Parkinson’s and Alzheirmer’s. And his care fell mostly to my mother, who’s been permanently altered by the experience and loss. You’re in my thoughts and I just wanted to tell you that someone you don’t know out there is moved by your story,


  6. Good. I hope Friday turns out to be just what you are looking for. It’s obvious he can no longer manage at home and your son doesn’t need to have this kind of stress and worry either. You never get any rest. At least when he is in a safe place…you will both have a moment at home to recharge and not have to stress yourselves constantly. There comes a time when we are often forced to make decisions we never thought we would have to make. Horrible as they are, we still have to choose. Good luck.


  7. Jennifer says:

    I hope so too. He’ll be safer with professional care because there’s no way we can watch him 24/7. We can’t stay awake all the time. We have an appointment for Friday with his primary care physician to get the ball rolling. Maybe at a facility he can get physical therapy or something that will help! I’m about catatonic ———


  8. Certainly a difficult situation. It’s no ones fault. You and your son cannot give up your lives to care for someone who needs more help than either of you can possibly give. It sounds as if he needs professional care and you have done all that is possible. I hope the move is a benefit to everyone.


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