How do I make the right decision for my mum

[pamelaj]

My mum is 83 and was diagnosed with AD six years ago. She has been living for the past four years in a bungalow on an estate where the majority of people are elderly and they look out for one another. I have noticed, however, that as mums condition has worsened the neighbours visits are becoming rarer. Understandable I suppose. Mum doesn't make sense a lot of the time.

Recently she had a urine infection and, as has happened before, this sent her particularly dolally. She came to stay with me. I live an hour's drive away, for ten days. She seemed a lot better and said she wanted to go home. I have been trying to persuade her to come and live me but she won't. She really needs a lot of help now ie washing, dressing, making breakfast etc. Basically she does not seem to do anything except watch the TV.

I decided to get in touch with an agency and arrange for some care every day. I am meeting them next Tuesday. Tonight, the lady that currently goes in twice a day to check on mum rang me and said she thought mum was retreating into herself and needed more stimulation. This suggests to me that if she won't come and stay with me perhaps she would be better going into a care home.

I am really stumped at the moment. If I try to talk to mum about it she doesn't answer me at all. This sudden change in mum's condition since she had the UTI has taken me by surprise. Over the years the deterioration has been gradual.

I would be very grateful for any thoughts any of you have. I have been reading the comments on TP for a long time but this is the first time I have written anything. I don't think I have been so confused about the best thing to do before.

 

[diablo]

The community mental health nurse assigned to my mum arranged day centre visits which got up to three times a week. They sent a taxi round to pick her up and drop her off. Maybe there is something like that where she lives?

She really looked forward to going.

Some care homes run private day centres.

 

[cmnotz]

Day Care Centre ...

... would be my suggestion for a first approach.

Day Care does sometimes have a reputation for being all carpet bowls and bingo but Day Centres offer very varied activities so if perhaps your Mum has family photos and enjoys reminiscing find a Day Care Centre that offers Memory Book/Box activities.

Befriending service might be another option - someone to spend social time with Mum and encourage an interest in life.

Either of these options should be arrangeable through referral by professionals whether health or community based.

Another practical thing to consider - when did Mum last have an eye test? if not recently try and get one for her since eye sight deterioration could contribute to her finding her environment more confusing and even a loss of confidence leading to this apparent withdrawal

Sure others will have other suggestions

Cathy

 

[Tolkny]

My mum is 83 and was diagnosed with AD six years ago.

Sounds like it is time for a Social Worker's Community Care Assessment for person with dementia and separately a Carers Assessment, to see what is available to both in the area and in their particular circumstances. Sadly dementia is unlikely to diminish and for there to be less need in future!

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=131

 

[sistermillicent]

Presumably your mum was a sociable person most of her life? Just asking because I like my own company, and have to have quite a lot of time alone during the week, my mum did too, we are both creative and need the thinking space, often sitting and staring at something for a long time, considering the potential....

Having said this my mum seems more settled in a care home when she's on respite and does actively go to sit WITH other people, even though she does not communicate with them, so who knows.

I hope you find the right thing for your mum

pippa x

 

[pamelaj]

Thank you all for your comments. I meet this lady from the agency tomorrow and am full of trepidation. I find it hard talking about mum in front of her and mum gives me looks enough to kill as if I am doing this to spite her rather than help her.

I will enquire about a Day Centre. Mum was never the sort of person to 'join things' but was a very sociable person and used to have lots of friends but, of course, many of them have died or have problems themselves and cannot visit any more.

I find the hardest thing to come to terms with now is the fact that I think mum has suddenly gone downhill and it seems as if she knows this but won't talk about it. I keep thinking she must be so unhappy and frightened but for some reason will not communicate at all. Making decisions on her behalf is hard and I never know if what I am doing is right. The GP, whilst a very nice man, seems to be interested in her urine and blood tests but that's it and when I ask for any advice says he cannot advise on care. I have gained any knowledge I have from TP and listening to other people who have been through all this.

Thank you again.

 

[Katrine]

"as if I am doing this to spite her"

I recognise this scenario, when talking to doctors etc. Unfortunately sometimes facts have to be given or corrected, even though you don't want to make the person with dementia feel inadequate. She probably feels you are showing her up in front of an outsider, shouldn't talk about personal things etc. It is hard, because you do feel disloyal even though you are seeking help. Sometimes you have to just not look at her because you can only see the hard stare if you catch her eye! Very best of luck tomorrow, Katrine x

 

[bethan]

hello Pamela
sorry about your dilemma. When my mum has had UTIs ( and she has had many) sometimes it has taken 3-4 weeks before she returned to where she was before the infection, even though her urine would be clear and she was off the antibiotics. Many times we thought the deterioration was permanent but then she would start to have more good hours than bad, sometimes with blips inbetween, and eventually would be in more or less the same place. We upped the homecare on a temporary basis when this happened, then reduced it when she was coping better.

My mum thrives on company and stimulation, and like in your case would find that as she became worse her network of friends would call less often. Eventually moved her to an extracare sheltered scheme close to me, which suits her well.

Beth

 

[pamelaj]

I drove over to mum's today and found myself rehearsing out loud in the car how I was going to tell mum someone was coming to talk about getting her up in the morning, washed dressed etc. Called at her GP surgery on the way and can't have an appointment till 18th May.

When I got there mum was up, dressed and hair combed. I haven't seen her like this for about two years. I told her about the lady coming and she said ' that's nice'. I cooked her some lunch and she ate it all, having not eaten anything to talk about for a month. She had a gin and tonic after lunch which is unheard of and when the care lady asked her if she would mind a male carer attending sometimes, well, I couldn't really repeat what she said, but it was totally out of character and had the carer and myself laughing so much, we spilled our coffee.

I loved today. I have spent weeks worrying about this day and it turned out to be the best one in years. I don't know what is going on, and whether this is a one off day and it happened just at the right time or something else but I will treasure today because it was lovely to see a bit of my old mum again

 

[dottyd]

a male carer? OMG-my mum would not be happy with that!

 

[Tolkny]

a male carer? OMG-my mum would not be happy with that!

As dementia advances, and people get used to having carers the sex or age becomes less important as long as the manner of approach is appropriate. I was surprised to discover that a male carer was due to call, but when asked about visitors Mum says the same as ever:- "No one has been, I don't need anybody, I can look after myself" - But she cannot!!

In away the delusion of dementia is against the one with the condition - maybe that is best.

 

[BeckyJan]

Hello Pamela:

Although you are seeking your own Agency help I do agree that a Social Services assessment may be worthwhile. You should at least get some idea what they can offer.

I also suggest you telephone the local Alzheimers Society as they know what local support is available.

This link may point you in the right direction; you may find the list on the right hand side interesting.
http://alzheimers.org.uk/site/custom_scripts/branch.php?branch=true&branchCode=14342

Best wishes