My mother has dementia - need some advice please

[P_1609]

My 93 year old mother sadly had a fall a week ago and is now in hospital. Before the fall she was showing some signs of dementia but not enough to indicate that she wasn't able to function independently.

Unfortunately since the fall she has become considerably worse (CT scans revealed no obvious brain damage). Other than the bruising and a minor upper cheekbone fracture from the fall she has had a bladder infection which appears to be responding to antibiotics.

Because of the now much worse dementia her short term memory is terrible and she is easily confused.

Every day I speak to her on the phone and every phone call consists of her begging me to take her home and her repeatedly asking me what is wrong with her (and me telling her). This is utterly heartbreaking for me and very upsetting for her. Naturally I can't take her home until the doctors are happy that the infection has abated and even then the doctor has confirmed that she will need 24 hour care every day for the rest of her life so this too needs to be arranged once social services do their thing. This means she will either end up in a care home or, if it can be managed, a live at home carer will be arranged for her at her own home. I do think that she will be much better in her own home.

My query is as follows: how do I handle her repeated queations to take her home? I'm finding it incredibly difficult to find an answer that doesn't upset her and I don't want to have to lie to her.

What can I do? How can you calm down and reassure somebody with dementia who says she is very unhappy (the ward she is on is actually very nice, as are the staff)?

I just don't know how to deal with this. I can't bear to hear her so unhappy and tearful.

She also frequently asks the ward staff for her son (me - I also have a brother in America) and also frequently asks them when she is going home.

I'm convinced that the hospital environment is making her dementia worse.


Thank you

[bowlingbun]

The hospital should now arrange an " NHS Comtinuing Healthcare Checklist Assessment " , look this up on Google. Learn to tell love lies. When am I going home? Can be answered by When the doctor says you are better, for example. Whats wrong with me? Can be answered with either an infection, or the doctors are not quite sure. Doctors views are usually held in highest esteem. In the meantime, when visiting, perhaps take mum small cartons of juice, especially cranberry, and other drinks, lunchbox size, and she is encouraged to drink as much as possible, to help the UTI and the confusion. Maybe you drink one at the same time she does?

[Dancedintherain]

Sorry to hear this.
No the hospital environment isn't the easiest place for her and the doctors will be well aware of this. Very anxious time for you. Do speak to the staff when you can they may be able to reassure you. There is of course no standard answer. Just remember you know her best and will find a way to comfort her.

And do check with Ward sister any food or drink you want to offer. Contrary to popular opinion, cranberry juices can be contra indicated during urine infections.
Dementia care....you might find some support on the Alzheimer's org website and from its forum. You will find people ther coping with all sorts of situations, all the dementia illnesses too. Much busier than here.
Hospital discharge procedures....plenty of information on our main website.
hang on in there.

[P_1609]

Thanks very much for the words of advice - a Continuing Healthcare Assessment form has already been completed (I signed it at the hospital when I was there yesterday).

I appreciate the advice about eh "love lies",. but I have yet to find a way to get mum to calm down or to really accept what I say.

Also, is there any kind of Dementia-related body/charity who would be able to pop into see my mother, assess her "happiness" needs and maybe advise what might help her to while away the hours while she is in hospital?

As she is so down she has lost interest in everything and just wants to go home. And that's all she wants.

[Cathie_1611]

Dementia sufferers are always unsettled by being in unfamiliar surroundings. When you cannot hold short term memories for long you have to constantly relearn. So you ask the same questions again. Actually its gets a bit better the longer it goes on - as hospital becomes the new norm. Try to bring stuff she would recognise from home - cushion, vase, photos to make hospital home, make sure your visits are regular a routine your mother can learn. Yes learn to tell love lies. Keep answers simple. Its a hard journey but you will have to become harder (and I still wonder less nice). You cannot tear yourself apart every time you talk or think about your mother.

[Anne001]

Hi,

A very distressing time for you both. Personally, I would blame the doctors. They want to make sure she is fully well before she can go home etc. As far as her mental wellbeing is concerned, is the hospital part of the butterfly scheme for dementia sufferers? Does the hospital have dementia coordinators who can advise? It may be worth "dropping in" on the hospital social worker to ask.

Before mum leaves hospital, a care assessment should take place - Continuing Healthcare or otherwise? While mum is in hospital, and cared for, it may be worth visiting some nursing homes yourself to see what options are in the area. I did this prior to mum's last admission. When it was decided that mum could no longer cope at home, it meant that I could argue for a care home of my choice.

Thinking of you at this difficult time, Anne

[Henrietta]

Hi P

Here are a couple of links to look at-the Alzheimers Society deal with all types of dementia- I do wish they would change their name! Well worth contacting them and also look at their forum Talking Point. Here is also a link to Admiral Nurses

https://www.dementiauk.org/?gclid=CMOck ... 0wodb8YGSQ

https://www.alzheimers.org.uk/

http://forum.alzheimers.org.uk/

[Pope_Pourri]

Hi P,

I send all my love to you at the moment. For the last year we 've been on a similar journey with my 89yo Nana, who has always been stubbornly (and bloody-mindedly) independent.
After she became increasingly confused and woolly headed and suffered illness and falls, she found herself in hospital earlier this year.
She constantly asked my mum and my uncle if she was going home today (or told us the nurses had told her she was) - we would gently tell her that she wasn't quite well enough yet and besides, she couldn't get up the stairs to her flat. We would tell her that we would see how things were in a few days when she was feeling better.
While she was in hospital she had a couple of assessments and her doctors decided she no longer had capacity to make her own decisions.
The doctors, nurses, physios and OT assessed her as needing 24hr care from 2 carers.
Social care stated that the most they could provide was 4 care visits a day and no overnight care and that her flat was unsuitable as it was on the first floor, had no lift access, her bedroom and bathroom were inadequate for her and the 2nd bedroom was not suitable for a carer.
My mum and uncle were left with little choice but to move her into a care home once she was well enough to leave the hospital.
When they moved her she was told that this was somewhere for her to recuperate.
She's been there since the summer now and has had periodic instances of packing up all her stuff on the basis that's going home today, but we and the staff tend to distract her now - we'll say "Oh, it's alright, the staff will do that, let's go and sit in the lounge and chat as we've got loads to catch up on. We'll come back in a bit and see how they're getting on - look, I took this picture of the cats the other day..." By the time we've nattered for a short while, she's forgotten.
When she does talk about "going home" and we ask her about it, she seems to be talking about a different home - not the flat where she's lived since 1980 - sometimes it's the house where she brought up my mum and uncle, other times it's her childhood home. It's not a literal place any more.
She has settled in quite well at the care home, though - the staff are lovely and the other residents are a nice bunch (if a bit bonkers at times ).

Good luck to you! xx

[P_1609]

Pope_Pourri - so sorry for the lack of response to your reply, for some reason I didn't get a notification of the updated thread. Sorry to hear that your mother is in a similar situation to my mum.


As an update to my mother's condition - she had to go into a care home as she was deemed unable to look after herself any longer. It's a great place (very modern too) and the carers are excellent. I have no doubt whatsoever that mum is in the best possible place given her condition.

Problems only arise when my brother or myself visit - mum soon becomes very upset, begs to go homes, cries and is generally very miserable indeed as long as my brother or myself are there. Apparently as soon as we leave mum very soon settles again and is contented and cheerful - she does still ask the carers from time to time when my brother and I are next visiting, but a reply of "tomorrow" seems to settle mum nicely. It's incredibly depressing to think that our visits are upsetting mum as it's the last thing that we want. Mum has other friends who also visit her and she is pretty good with them, only becoming upset when they have to leave.

The carers have reassured me that mum is fine otherwise, settling in nicely, has a good routine, is integrating with other dementia residents, seems relaxed, is eating and sleeping well, etc.

Naturally I want to be able to visit mum, but the upset that it causes (to her and myself and my brother) makes me question the wisdom of this. This coupled with the fact that mum very soon forgets our visits makes me wonder if our visits are helping or hindering. What do people here think?

[Pet66]

Hello p1609
Continue to visit. I had the same problems with my husband. He's in a nursing home ( strokes and vascular dementia) I've cut my visits to every other day. He doesn't connect the day I don't go.
It took about 6months for him to settle. He has days of wanting to go somewhere, but I'm able to distract now. I'm sure when your mother settles she will be less distressed. It's not easy, heartbreaking etc. You also will feel better to see for yourself that she is being well cared for.
My take on the situation anyway. Realising that everyone is different.
Take care. Am thinking of you