Falling down a rabbit hole

Discussion in 'I care for a person with dementia' started by HisGuardian, May 23, 2015.

  1. HisGuardian

    HisGuardian Registered User

    May 23, 2015
    1
    Nova Scotia, Canada
    I'm 52, my husband is 73 and we've been married 20 yrs. A few years ago he took a stroke, and then several 'mini' strokes followed. By last summer his behavior was a bit off but we attributed it to the strokes. By October 2014 an assessment revealed he had moderate vascular dementia . .and that's when it felt like I was falling down a hole with no bottom. Since that time his dementia seemed to progress at times rapidly. We've dealt with his spontaneous crying for no reason, irratic behavior - undressing in front of company, urinating in our coffee cups or glasses!, wandering over to the neighbors and demanding she take him for appointments he doesn't have, in his pyjamas . . .then there's the incontinence, stripping his entire bed every morning because he pees through his diaper, and the pads underneath him, the bottom bed sheet, right down to the plastic. He is saturated in urine from his upper side to his thighs and he smells bad so every morning I wash him, change him, dress him, strip his bed . . and go to work where I worry about him all day long although our home care worker gets him out to a taxi and off to adult day care every day. I miss the man he used to be, our talks, his opinion of things, his help with decisions and repairing things around the house. I'm lucky if I hear him speak five sentences the entire day. He follows me around with knives ( which I had to take and hide). The other day he was looking for a lighter ( he said he was going to burn our house down) and when I bought a brand new washer two months ago, I came home the next day to find him trying to dismantle it because he thought it was the old one. To make matter worse, we have a 15 yr old son who is not coping well with this. He's stressed and at times depressed. We both are. My husband doesn't seem to be aware of his situation or ours . . he thinks he's fine and that may be a good thing, for him. I'm mentally exhausted, worrying about our future, his going into a home is going to break us at $1140 a month, I worry about him dying although there are days I think it would be the kindest thing that could happen to him because reading about end of life dementia is pretty scarey, I feel like he's already dead. There are days I feel like I'm already in mourning. I wake up and for a few brief seconds I pretend the world is fine, then realize I'm alone in bed - he's downstairs in his bed, with the plastic undercover wearing diapers and still saturated in urine. No chance of us ever sleeping together again, no communication, just work and worry and stress. I dread the thought that this could go on for another decade. He has kidney failure ( down to 12%) and dementia, one heart attack a couple of years ago and diabetes (controlled) and high blood pressure ( controlled) . . . how much can one person take? I'm so angry that all this happened to him - a man that never smoked or drank and loved God, life and nature. I try to find the good in everything, but I look at him and think this is too much for one person and then he sits here thinking things are great. Me, I feel lost and dazed and confused. I feel my life is over, I'm going to spend the rest of it watching the man I love become a man I don't know and die a slow death before our eyes. HOW does everyone else cope with this??
     
  2. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    Guardian - I don't have helpful words of comfort for you, nor trite words for you - I just feel for you. Only you can decide whether caring for this familiar-stranger is less onerous than the care home bill. But perhaps it is not? *Hug*
     
  3. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,951
    Suffolk
    Guardian, been there done that. Or most of it anyway. I gave up work when he could no longer be safely left by himself, he went to daycare first one day a week ( 5 years ago!), recently three days a week, respite carer for three hours on another day. However, the last 6 months have just been too much and he's gone into a home permanently. Yes, it's a lot of money, but it's my health and well being and the stress has had several not nice effects! We also have an age difference (66/82), not as much as you! And his children are grown up. So I don't know his you cope. Is there a Canadian Alzheimer's Society?
    Meanwhile ((((hugs))))).
     
  4. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,092
    Toronto, Canada
    HisGuardian, here is the website for the Alzheimer's Society in Nova Scotia. http://www.alzheimer.ca/en/ns I realize it's the weekend now, but the Society in my area was very helpful to me. They can tell you what is available in terms of resources and assistance.

    Regarding the nursing home fees, $1,140 sounds reasonable to someone living near Toronto, but even so, here there are subsidies for those who cannot afford the basic fee. Your local Alzheimer's Society should have all that information for you and be able to help you with the maze of paperwork that I'm sure is involved.

    On a personal note, I am so very sorry to hear what you have been going through. Dementia is the absolute disease, in my mind. It's very sad that it's affecting your son, who has essentially lost his father.

    Please call the Society as soon as possible and see what assistance they can give you.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.