My husband was hospitalized on Tuesday after a 3 month follow up with his neurologist. She could see that I was burned out too. After two days of not much being done to psychiatric and cognitive assessments he meets the criteria for medical assistance in dying. He was to begin a mild sedative to settle his constant fidgety and restlessness but they forgot. So hopefully it was administered last night. The psychiatrist told me that with Parkinson’s patients it presents as tremors in other neurological conditions it shows as being fidgety. Keeps him awake at night it is so bad. He is constipated, urinates frequently, and is completely dependent on me for his daily needs. I told the “team” that when he is released I need to be his wife not his caregiver because I cannot do both knowing the end is soon. Not sure if he will be placed in long term care if there is room or hospice while waiting for his request to be granted and the 10 day waiting period is over. I am heartbroken, extremely sad, outrageously mad and exhausted. We have lots of friends and family that will help us through the next darkest of days that lay ahead.
Thanks to all of you.
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catherineann
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My thoughts are with you, Catherineann. It is a terrible time.
You are right to insist on help before you have him home again. We had carers who did all the personal cleaning and changing so I only had to put washing machine on and tend to him. I also had 24 hour telephone support if I was concerned about anything. I found it all reassuring and was able to keep him at home. But he slept well and wasn't agitated or in pain. It is not always possible so don't feel bad if you can't manage him at home.
Hi Catherineann, I'm sorry to hear your news and that the end might be coming. I had help with David, but we were not at the end game, or at least we didn't think so as it was a sudden death in Davids case.
Make sure you let them do everything, and just enjoy being husband and wife again. It will help you make some more memories, and they are so so important. If you need any help, make sure you ask, I was a little too stubborn and now know a little more of what is out there.
Take care of him, and make sure you tell him how you feel...
Thinking of you CatherineAnn: If I recall, you are one of only a few of us who are on this site from British Columbia. There is also Dee (dw1234) I know this is not what you will be focusing on in the near term, but I wonder if at some point there is something we can write together to put to our Minister of Health regarding the apparent lack of coordinated support for patients suffering from PSP & CBD (and likely the other FTD neurodegenerative diseases.) Not now - I realize you have so much more to deal with - but maybe later. I'm willing to partner with you if that strikes a chord, when the time is appropriate.
Anne G you are so right! We all need to shout about these conditions. Who else will do it? We have a different system here and the lack of awareness is dire!
CarherineAnn I am heartbroken looking at your message. Many of us have been where you are at the moment. It is very hard to fight for help when you are exhausted looking after your husband. I had Carers to do all the personal chores. My husband didn't get to a nursing home or hospice he died in hospital . Please take care of yourself and you are in my thoughts xxx Ronnie
Hi, you are so right, you need to go back to the really important stuff. Being a wife again. Anybody can do the physical caring, but only you can make him feel safe and loved. Hold his hand, cuddle him, tell him you love him and that's it's alright to let go.
None of this is easy, but I did find, that at the end, suddenly the medical profession knew what to do, instead of floundering around in the dark coping with PSP. This helped me enormously to relax and take comfort in those last precious days.
So sorry you are going through this. It's horrible. But you are right in needing to be his wife at this time. Make him comfortable and just be with him. Take care of yourself too. Prayers and hugs.
Catherine anne. I do want to tell you that we have all been thru what you are going thru but now knowing that maybe that really does not help though I have said it to many. What struck me on your post was that you are going thru the dark days. Perhaps, if your faith is strong, you can focus on celebrating as your loved one goes to a much better place, pain and anxiety free, a whole man again. Yes it is a sad time for you because you will miss him horribly and feel alone but he will not! He will be in heaven watching over you as he used to and even more. He will only be happy. Hold his hand squeeze it and tell him to go that it is ok. Perhaps all he need to end this horrific suffering is to know you are at his side and that you will be ok. And his days and yours at some point will be bright again God bless
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How much sleep?
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