How long does this hell go on for?

I'm so sorry OP. It's an awful situation. X

I'm so sorry OP, it's such a cruel disease that robs you of the person while they're still alive 😔 it's amazing how the body clings to life and keeps going. I agree that it's no life for your poor mum and must be a huge strain on you and your dad too.

Would you consider a care home where mum can be looked after and you can visit frequently? Your mum might well get more stimulation with the activities there and a better quality of life. Two of my mum's friends with dementia are now in care homes and they are doing so well - they have hair and nails done, singing and other activities and games in the lounge and just yesterday posted pictures of having a bbq outside and an ice cream van, they were all enjoying a Mr Whippy!

I hope you can carve out a little time to take care of yourself and do some self care - you can't pour from an empty cup. Don't put pressure on yourself to do more than you can manage and give yourself some grace when you need to rest.

Would your dad consider a care home for your mum ? It sounds absolutely miserable, a family member of mine has had mixed dementia for 10 years (diagnosed ) but there was signs before, they are in care now and it is such a weight of their immediate families shoulders.

My dear Mum firstly had a heart attack, several years later she had a stroke and was in a coma for a number of weeks. Within two days of being sent to a wonderful rehab centre my Dad died. Quite a traumatic time. After months she returned home and the only thing affected was speech and the ability to read.
She then had bowel cancer and ended up with a stoma. We all managed to cope along with carers. Just after her 80th we noticed a deterioration which was quite rapid- Vascular dementia. Then macular degeneration and finally hearing loss. She eventually went into a home and became very ill and the hospital sent her back to the nursing home for palliative care. She lived another year but she was just a shell. In truth I grieved from the time of her stroke as we could no longer hold a proper conversation. I feel for both you and your Mum. It was a blessed relief when my mum died peacefully surrounded by her loving family.

I lost my Dad to Dementia earlier this year.

We had been through all.the caring stages - phone calls, then video calls, then him.moving to live with us and then a care home. And in between a and e visits for falls and hospital stays for infections and even sepsis.

Watching and dealing with the slow decline was dreadful.

Everyone has their own dementia story. Dads main risk was that he had retained his mobility but when combined with his dementia this actually increased risks for him.

Eventually we had no choice but to appreciate that a care home was his best option. And it was. At that point the care needed exceeded anything we could offer and be sure he was safe. We found a lovely home, did respite first, and he was happy there.

I went back to being a daughter.

When he sadly passed he was able to be kept in the home, not hospital, with 24 hour care and medical professionals calling. Im sure if he had still been with us at this point he would have died in hospital as we couldnt have coped with those final few weeks of decline.

I hear you and sympathise. Its a dreadful disease and takes its tolls on loved ones and carers.

I would also be thinking of a care home. It might help your dad have some semblance of a life and free you up too whilst also getting her the care she needs.

It true that it won’t last forever, but it’s 10yrs of your life gone too. We used to get old, ill and die promptly. Now we get old, ill and live on for decades. We really need a sensible conversation about continuing to keep alive people with such a low quality of life.

My friend is an intensive care nurse, her advice is don’t call the ambulance…

Im so so sorry but it will only get worse im afraid. My mum lived with Alzheimer’s for about 15 years. I personally would be talking to your dad about a care home at least for mum and if he wants, for him too. Best sort it before an emergency forces it.

It’s no life for any of you, least of all your poor mum. So sorry you’re going through this, dementia is the illness I dread the most, having seen two grandparents lose all dignity in their final years. Sending a hug.

My heart goes out to you. I’ve been through this. It’s horrific and all consuming and it’s torture and traumatic watching someone you love deteriorate like that. Gently, someone once said to me ‘it won’t last forever’ and it won’t - you will have cried all your tears now and you will have some relief when it’s over. Sending you a virtual hug and as hard as it is, make sure you get some time for yourself ❤️

So sorry op, wish i could tell you but it varies. Do make sure dnr is in place, and also remember you have a choice re treating normal seasonal illnesses etc. for us it was covid that was the ultimate cause of death but it was 10+ years including 3 in a full nursing home facility with psychiatric care(very violent) honestly we were relieved

Sorry you’re going through this OP. Sounds very tough.

It’s mad isn’t it. How is your dad?