husband has cbd

[Stellabella121]

My husband was diagnosed with corticbasel degeneration 2 years ago. It began with his left foot feeling stiff and has since traveled up to this full leg and now he is unable to move it. His left hand shakes and his upper arm is stiff. Once he holds onto something it’s hard to let go. He can’t walk at all on his own so we have a sit to stand which I use to move him around all day. I take him to the toilet and have to pull his pants down and up. I dress him, get food, bathe and cut his hair and nails. His moods can be very dark and depressed on some days and happier when the kids or friends are around. He saves the cursing, yelling and anger for when we are alone.

So far his mind seems to be ok, I haven’t noticed any decline.

I am just wondering what the next symptom will be. He did tell me his right hand is beginning to shake. The neurologist won’t tell us exactly what will happen because I guess everyone progresses differently.

How long can I keep him at home? He requires 24 hour care. He wears depends now and has started to have bowel movements in the diaper- can’t get to the bathroom on time.

I’m at my wits end. I don’t want him to feel bad but I just don’t think I can keep this up much longer.

[Vraic]

When you are on the 'another pisspot, another day' treadmill that comes with caring, it's damned hard to conjure the strength to keep going. It does sound like external help would ease some of the pressure on you.

[maxandpoppy]

You need help. Family? Friends? Paid carers? Six months ago I had to admit to myself that I couldn't go on - I was ill myself. My husband is now in a nursing home. I was ravaged about the decision, bereft, full of guilt and distress. But at least I'm still here for him and spend a lot of time with him most days.

[Purrlie]

Hello Stellabella121, Please reach out to your doctor, local social services, the hospice if there is one in your community (and, as so many on this list have emphasized, hospice help does not mean that death is imminent) as well as even just asking friends or family to visit for companionship for your husband and for safety's sake, for an hour or two, so that you can go out on your own for a walk or to run an errand with peace of mind. You have to take care of yourself, and asking for and getting outside help now is vital for both of you. Sending you a big hug, Purrlie

[caralime1956]

Hi Stellabella, my husband had CBD but we only had it confirmed after he passed 21 months ago after agreeing to the Brain bank for post mortem. He was in care for 2 years as he was falling all the time & I was still working part time & he had no safety awareness? I felt guilty at doing it but also felt a great relief of stress & visited nearly every day, but felt I could be his wife again & not full time carer. He had lost half his body weight & couldn't communicate, not even thumbs up or down anymore. Its an awful illness, but feel he is at peace now as couldn't have carried on & not nice to watch as a family. Try to take time for you as well, you need it to carry on , best wishes to you. x

[bichonbear1]

Hi Stellabella, my mum has CBD, she is now 69. It’s a challenging journey and life changing for mum most importantly but for the whole family. Grab all the support you can, our local hospice have been amazing and finding the right health and social care is so important. If you read my profile you will get a sense of our journey as the disease has progressed. Remember to take care of you, that’s important too. Best Wishes..

[Tindb]

Hello Stella

My wife was diagnosed for Cbd 6 years ago at age 59

I'm still taking care for her but I must say it's a hell of a job. I had to quit my own job to take care fully for her. She degraded gradually starting with tremors, difficulty to speak and walking almost at the same time. Currently she's confined to chair and I do transfers for going out, toilet/for sleep with the aid of crane and car turny chair. We attend ambulant fysical training 3x per week to avoid muscle stiffness. Washing is done on bed every day with aid of homecare service who comes in every morning. Sunshine weather, music, entertainment on TV, picnic and shopping keeps her going. As far I'm concerned this personal care at home is best for her comfort since she's not able to express her wishes and desires anymore which is very frustrating for her, and her state of mind is slow and undefined. Sometimes I get frustrated myself when feeding is going slow or too many things going wrong.

My children help as much as possible in order to cook or doing errands. But we still cope and hope to have her at home as long as possible.