Worries about a professionals meeting

[liz99]

My Mum is 86 and has recently been diagnosed with Alzheimer's. She had been suffering for two or three years prior to the diagnosis, but my Dad had been covering up for her and would not accept any help. Sadly he died in October last year and we have been getting help and care in place for Mum since then.

I am an only child and live 100 miles from Mum. I am also still working part time. Mum has four hours of care per day helping her with food preparation,shopping etc as she is physically extremely fit. However, all professionals involved with her are now concerned for her safety and a meeting has been arranged for this week. I am very anxious because Mum's social worker is talking about respite in a care home as one of the possibile outcomes of this meeting. I have not had time to investigate care homes where Mum lives yet but I hope to visit some this week. My fear is that Mum will absolutely refuse to go for respite care. What happens then? Can anybody make her go? Mum loves to walk every day and can find her way home from the shops to her house but if she was to be in a home, I am worried that they will not be able to accommodate her going out for a walk every day and then it will seem as if she is imprisoned. I have so many confused thoughts going round in my head all the time.

Mum has rung me twice today (and she has said this on other occasions too) saying that she wants to "go home" as she doesn't want to live at her house any more. By this she means the house where she lived as a child. I simply don't know how to answer this but I have been saying it's not possible (because it isn't!) but this is just very upsetting for her. Mum is fine if you speak to her in the mornings, but later in the day she just gets more and more sad and lonely.

It would be good to hear other people's comments who are in the same situation.

Thank you.

 

[chrisuz]

Hi welcome to the forum, I'm sure you will be glad you did. I am not in the same situation as you, my husband has fronto temporal dementia, but I know that with alzheimers the regression you descibe is a regular part of the illness as well as the decline in the later part of the day. It is generally felt that distraction from an impossible request can be helpful and avoid unessessary distress, hopefully someone will come along soon with more experience of your situation than me, I just wanted you to feel heard.

 

[BeckyJan]

Hello and welcome from me too.

I think white lies are acceptable in this sort of situation and can you rather than saying 'not possible to go home' indicate that repair work is being done and the heating/water/electricity (whatever) is not on yet. This should be enough to make more sense of staying where she is.

Re the professionals meeting, I think it will be wise to accept the possibility of respite if offered. Many members have trouble getting it even when in desperate need. I hope the SW is a good one and she is prepared to listen to all points of view. My husband spent his last 3 yrs in a Nursing Home and there some residents did go out for daily walks, but only those who could be relied on to return safely. Others were taken out from time to time by a carer.

You need to ask the Social Worker the question 'what if she refuses'. Some good ones will do it on your behalf. Again white lies are acceptable, perhaps again on the pretence of work needing to be done and she needs to be kept warm and comfortable.

I wish you luck and please let us know how you get on.

 

[Rita66]

Is it not possible for your mum to have respite care near to where you live? I only say this because it would be easier for you to visit and quiet possibly in the future she may require 24 hour care so if she has regular respite in same home it would make it easier for her in the future, should she need it.

When looking for Care Homes check these sites. A little like trip advisor for care homes
good care guide .co.uk and carehome .co.uk

The care quality commission (a little like OFSTED) publish reports for unannounced annual inspections of care homes.
cqc .org.uk

At the meeting ask the social worker the reasons behind them requesting for your mums respite. Changing her environment will possibly add to her confusion. It maybe that they feel she is more vulnerable now, especially at night. It is usual that care can be provided up to 4 times a day, but when a night service is required it is usual for a person to require 24 hour care. If you calculate the cost of a night sitter for the week this is comparable to the cost of 24 hour care. A difficult call to make and depends on your mums financial status.

If your mum is liable to fund her own care, if nursing care is needed she will be able to claim funded nursing care ( FNC ) about £109 per week towards her care. Attendance allowance is also still payable if in care home with nursing.

I hope this helps.

Good Luck.

 

[liz99]

Result of professionals' meeting

Thank you for your response. The result of the meeting was that more care is being put in for Mum for a trial period. Care homes were not mentioned! However, I did go and visit three the following day on my own and am now very confused. The three I saw were all very different but I don't think Mum is ready for any of them.

Moving Mum near to us would not be an option. She has lived in the same town for nearly 60 years, so doesn't get lost when she goes out from her own home. She would be totally disorientated in a new place and I just feel that would be cruel. We shall be moving closer to her when I retire in July which will make things easier.