Guilt overload

[Viva]

Hi everyone

Since I last posted on here things have moved on a pace. Unfortunately following an event at home my MIL was taken into hospital and stayed there for a month. She is frailer and we have been told needs 24-hour care by the hospital social worker. She went into a nursing home for an initial six week assessment period yesterday but we fear she won't be going home. Her mental state has really deteriorated and she is very confused. Some days she believes my husband (her son) is her brother and on other days she can be lucid. She tends to slip in and out of reality. We have been ringing her everyday as we live abroad but are coming to the UK to see her next week. I just wondered if other people have experience of how fast dementia has worsened for their relatives. My MIL has mixed dementia - Vascular and Alzheimer's. I look forward to hearing from anyone with any thoughts about this. We both feel very sad that things have accelerated so fast and fear her morale will go down when she realises she is staying in a home what looks to be permanently. Many thanks.

 

[Helly68]

My Mum has mixed dementia. It is very difficult for anyone to make an assessment of the speed of decline as everyone is different. From my own experience with my mother, she had an emergency hospital stay (appendicitis) and the stress of the surgery and recovery hastened her dementia considerably, though she did recover a bit. For example, initially she was very depressed (unsurprisingly) and very confused, she is now much more calm and content. It is very hard to judge, but sudden traumatic life events are associated with an increase in dementia symptoms I think.
In terms of her realising that she isn't going home, this is always hard, but depending on her state, she may not react quite as you expect. For instance Mummy used to say to me, when she was more capable "I am staying here until I am better" I worried that she would start to twig that she wasn't going to get better. I am not sure she ever really did this and now she doesn't talk about going home and takes a lot of comfort from the routines of the home and the care of the staff.
I think we are lucky, in that she has adapted very well but I think sometimes when they are very confused, this sort of environment can help.

 

[canary]

You dont have to tell her that she wont be going home - I never did tell mum.
Mum went to her care home from hospital like your MIL did and so I told her she was "convalescing" - something that she recognised - and I would say this to her every time she asked when she was going home. After a while she forgot about her old home and accepted that the care home was her actual home

 

[Helly68]

@canary I think you put it much better than I did.
I agree, don't tell her, distract and after a while the issue may stop arising.....

 

[Sirena]

I think it can sometimes appear that there have been sudden deteriorations partly because the person has been masking it. A hospital is not a good environment for someone with dementia, so she will inevitably have felt more anxious and confused there. You may find that once she settles into a care home she is less confused. Also if you are mainly in contact by phone, you only get a snapshot of how she is, when you visit for longer you will get a better idea of how things are going. As others have said, there is no reason to tell her she is never going home, it will just distress her.

I know moving to a care home is usually seen as a negative, but having gone through this with my mother a year ago I no longer see it that way. She is surrounded by people who understand her needs, has company 24 hours a day, and she is very content. For her the move was a positive thing.

 

[canary]

She is surrounded by people who understand her needs, has company 24 hours a day, and she is very content. For her the move was a positive thing.

Yes, I found this with my mum too.

 

[Kikki21]

I think moving to a nursing care home actually prolonged my mum’s life.
We had a crisis hospital stay, first of all there was a chest infection, not discharged safely followed by a massive seizure when she had been home for 5 minutes so back to hospital & several more mini seizures. She was in hospital for nearly 3 months. She declined badly afterwards & her mixed dementia, same as your MIL’s never recovered.
There was no choice for my mum but a nursing care home. We were dreading her going in one but actually I think she might have quite enjoyed it after a while & we never actually told her it was a care home but a little hospital which she accepted.
Yes she did ask about home but by this time, she didn’t remember where home actually was anyway & we also blamed the doctor for lots of stuff.
Choosing the right home is important. I visited several before making the choice & largely I am happy that it was the right home for her.

 

[charlie10]

Hello @Viva.....sorry that your mum seems so much worse. We also live abroad and have concerns over FiL who is soon to be discharged after a long hospital stay.....don't know if he will go home or into a CH yet. It is really hard to get a clear picture of someone based on phonecalls....we suspect he may be 'hosting' during the call and not present himself as he is in the rest of the 23 hrs or so. We do a lot of reading between the lines in an effort to get a picture, but won't really know how good/bad he is until my husband sees him. I hope all goes well for your mum and settles and becomes happy in a CH......and that you can relax a little knowing that she is safe

 

[Viva]

Hi everyone

Thank you for your comments. Yes it's true to say that we will get a clearer picture of how she is when we see her face-to-face and spend some time with her. However, on the 'phone she isn't able to hide her confusion because she often says crazy things. On a positive note though my husband rang her last night and the nursing home staff said she'd already made a new friend. My husband spoke to his Mum for a few minutes before she walked off and leaving the 'phone dangling. He said he could hear her talking to someone in the background. So this tells me she is not unhappy at the moment. She is socialising with people which is not like her at all. She has spent most of her life living in isolation with no friends and in the 15 years I've known her has never wanted to even talk to her neighbours. Maybe the nursing home will help her not to be lonely anymore.

 

[Dotka]

I'm sorry to hear about your struggle, I think that all people will finally feel at home regardless if it is care home or 'real' home. The most important thing is that she is safe and that there are good professionals looking after her. Being around other people is always good and in the care home she will have possibility to spend time actively with others. I think we get so worried about people we care the most that we forget about ourselves. I know that from first hand. After such a long time I'm starting to forget about looking after myself and give everything that I have and all my energy to another person. But we have to be strong and do what we think it's right. Take care

 

[KatieR]

Regarding the quick decline in dementia, my husband has been having problems (nothing's been diagnosed yet, but symptoms of dementia were definitely there) for about 4 years, gradually getting worse. Then, in February, he had a heart attack. He declined rapidly with delusions, hallucinations whilst in hospital. They sent him home and he was aggressive and violent, so back to hospital - which probably didn't help things. He's now in a memory care centre being assessed. But, like Viva, I wonder if anyone else has noticed that hospital stays make things worse? And does anyone know if things get better afterwards (my husband is physically better, but his mental health is poor although the delusions and hallucinations have stopped).