I wish I knew what to do for the best

[peppapug]

So, mum has been in a CH on emergency respite care for three weeks after a long period of fear including hallucinations, constant crying and violence towards my dad. She is 62.
Since she has been in there they have removed her galantamine and left her on memantine in the hope that the decline would make her less fearful.
The home is full of 80 plus year olds that can't talk and mum is talking, fully continent and mobile.
During the three weeks my dad visits every day to a turmoil of abuse based around the fact she knows where she is, why she's there and when will he take her out of this prison. It all makes sense and is so lucid. More so than before she went in there.
The consultant says if we took her out she would be returning within days so we are now investigating 24/7 care. we have found one CH which is lovely and doesn't smell of wee!!! Sorry, her current one reaks!
How can she be able to hold conversations, be mobile, lucid but not be able to make sense or function in the real world?

We think we have given up on home care too soon but her community nurse and consultant disagree and feel she will decline quickly but I expected quicker as her knowing what's going on is torture for all.

 

[Noorza]

Sadly, this disease is one that degenerates, it can't improve, it can be slowed with medication, if the specialists think she is in the right place, I would trust their judgement.

Your dad was facing a "turmoil of abuse" when she was at home, she is still being abusive in the home, where as I am not an expert, that is a huge warning sign to me that if she comes home it is back to the abuse just for different reasons.

I think I'd be looking for another home where some of the other patients are still talking but it would have to still be in some kind of a care home.

 

[Grannie G]

Hello peppapug

You can only do your best with the information and facilities you have. There is no easy solution , we just have to accept a compromise.

It is a tragedy when your mum is so young and fluent .

When my husband had to be admitted to an assessment unit, our son asked the consultant if it was really suitable for him. His reply was `Not really, but it is the best we can offer.`

So many of us have to accept the best on offer.

 

[Brucie]

The transitional period from being at home to moving to a care/nursing home is one of the most challenging parts of a very difficult process throughout. This is especially the case where the person is younger, in a disease that mostly affects much older people.

In reality, the chances of someone who has dementia but can still hold conversations being able to have sensible talking within any care home are fairly small.

We are in a similar situation at present with a 92 year old, and have been able to keep her at home only because we managed to have antipsychotic medication prescribed. This has for the moment removed the element of violence towards her 84 year old husband. Without that, she would have been in a home since last August.

It isn't for everyone, and is not recommended for vascular dementia (which our lady has), but we hope that it can enable her to remain in her own place - with huge input from family of their time - for as long as possible.

To be frank, I'd say we may have a month more, but that will still have given her and her family an extended period before the challenges of a care home are met.

At the end of it all, it is the safety of the person and their family that is paramount. It is an uncomfortable thing to have to deal with and I hope you manage as well as can be done.

 

[peppapug]

The new home is perfect but she is local authority funded and it is a little more expensive than most at £1000 a week but includes many early onset patients. There is also huge grounds to get out and about in which I think is important.

The consultant has said the current home isn't right for her but the word compromise just isn't in our vocabulary at the moment.

Is it bad to want her to decline quicker? I hate she thinks that if she eats better or sounds more lucid she will get out. She's like a naughty child feeling like she's being punished

 

[LYN T]

Is it bad to want her to decline quicker? I hate she thinks that if she eats better or sounds more lucid she will get out. She's like a naughty child feeling like she's being punished

No it's not bad. When my Husband has a VERY rare lucid moment I feel worse than when I see him in his usual state. Pete's AD is very advanced now and these moments are very unusual-so yes for all of your sakes I too hope your Mum gets to a stage where she is more peaceful

Take care

Lyn T

 

[angecmc]

The new home is perfect but she is local authority funded and it is a little more expensive than most at £1000 a week but includes many early onset patients. There is also huge grounds to get out and about in which I think is important.

The consultant has said the current home isn't right for her but the word compromise just isn't in our vocabulary at the moment.

Is it bad to want her to decline quicker? I hate she thinks that if she eats better or sounds more lucid she will get out. She's like a naughty child feeling like she's being punished

Hi, no it is not bad to want her to decline quicker, we all have those feelings at times. My Mum was in a terrible care home on emergency respite, which always reeked terribly of all sorts We had to wait a while for Mums place to come up, she is now in a lovely home and very well cared for. I still at times, when she is having lucid moments think to myself perhaps we moved her to permanent care to soon, but then you realise that those lucid moments are exactly that, just moments. I know if we took Mum home she would revert back to the abusive behaviour towards my Dad. My Mum's behaviour too is childlike at the home, she stamps her foot in annoyance etc. Hope you get the place in the nice home soon. xx

Ange

 

[MissBB]

Hi peppapug - and everybody else - I'm new to the forum but have been reading posts and have already found the forum helpful, thanks.

I want to respond to you peppapug because your situation sounds so similar to ours. My mum is 71 and has always looked very young for her age. She has been in hospital (psychiatric unit) twice due to aggressive behaviour to my dad. After the first hospital stay - the drs were recommending residential care - but we felt we had to try again at home (with carers). It was good in some ways that she had another four months at home - but bad in that it was very stressful - carers turned away and increasing aggression towards my dad again. So we tried, but unfortunately had to have her admitted to hospital again after lots of distressing incidents (police etc)

This time that she is in hospital we are more accepting that she is only going to get worse. Its so sad. Words can't describe it really. But she is in a safe place, my dad is safe, and me and my brother are not on a knife edge dreading something really awful could happen.

I guess what Im trying to say is that it is, ofcourse, a very personal decision, but the likelihood is that if your mum went home the same behaviour would start all over again and it will probably be only a matter of weeks until you find yourselves in crisis - again. I really feel for you with her being so young - I know what you mean about everyone else being much older in the homes. Just another factor to have to deal with. I hope you find the best you can find.

KKOO x

 

[annii1]

Oh how this rings true with my mum. She is 71, aggressive to dad at home, was sectioned and now in carehome. She can be lucid in fact had a lovely outing with her today, then she can be so confused, unpredictable,unsafe,angry. I know dad couldn't cope if she came home. He is pretty weak himself and she shouts at him when he visits and it would be the same if she was home, unsafe for both of them again. Pepperpug, our mum's are at least safe with lots of eyes around trying to keep them safe, eat, etc. I hope all works out for you, keep in touch.
Kkoo you tried, well done for that .

 

[peppapug]

Thank you all. This forum is so reassuring. Whilst Alzhiemer's journeys are all different there are a lot of feelings that we all suffer, mainly led by the guilt we all hold that we could have done more.

I read your responses to my dad and he realises it's not personal and he is dealing with alzheimers not his wife. His visits are so hard. She shouts at him, pokes him and sometimes won't speak to him.

My visit tonight was a real eye opener. She seemed quite calm but it was difficult to keep track of her conversation with her train of thought being all over the place. She is also starting to snap at other patients which for a shy little lady is strange to see.

On her more lucid days you can see why she is so sad and depressed but on her Alzheimers days you yearn to have mum back and it's so hard to stay in her company when she makes no sense.

Glad you are all here.