Mother diagnosed with Alzheimers. I work FT and cant be her carer

[dreamingchild]

My mother who has been forgetful for years now has a diagnosis but is still incredibly stubborm and wont set up POA, or fully admit how bad things are. I work FT and can't care for her full time. PArt of me wants her to move near me but not sure if thats sensible as she may need a nursing home soon - she is deteriorating so fast. And she is not logical, She talks about selling up to move near her friends, but that is in a part of the county that would be a nightmare for me to reach, Just not sure how to proceed really

Nursing home near you has some advantages. I've heard it said that older people get better care in nursing homes if there is family involved, and that would be a whole lot easier if the nursing home is nearer to you.

Alternatively, if she moves nearer her friends, make it clear that this will mean you aren't able to help her should she need it.

Always look long term, and don't let yourself drift into giving more care than is compatible with your own mental and physical health.

If she is deteriorating that fast then selling up and buying somewhere new is not going to happen - I can’t belive a solicitor will accept instruction from someone whose capacity is diminished, and she wont be able to make all the necessary decisions. I would assume she will be living in her own home until she needs to move into a care home. Before that she will need carers at home - do you know about her financial situation? Does she understand that POA will only come into effect if she loses capacity, it doesnt mean she is handing over control now?

You need to work on the POA situation - does she have a friend whose advice she would take and who might persuade her that the POA is a good thing (which it is)? As she gets worse, not having POA will make life very difficult for both of you.

How does she feel about a care home? If she thinks she's ok, then she may not be keen.

I have aged parents and have no idea how people manage who live at a distance - it's hard enough when they're on your doorstep!

I'm sorry to hear you're both in this situation. My advice would be take things a step at a time, things do change but it doesn't change all at once. She clearly needs some time to accept the diagnosis and start thinking ahead. A few things:

1. POA - you must get this. Best thing would be to ask the doctor to tell her to do it, speak to the doctor in advance of a meeting, go along with her and let him / her have the conversation. That way she might listen, also stress it doesn't have to be put in place until she wants it to, it just has to be signed. Be kind to her, it's easy to get frustrated with what this all means to you and forget that this is terrifying for her.

2. Moving - her moving independently to another house isn't a great idea at this time. It would be very hard for her to familiarise herself with a new area, home etc and could lead to accidents and distress. She probably won't do it, try to distract her with other conversation if it comes up. Moving to another house close to you would make your life easier in terms of travel but she would be heavily dependent on you. It sounds early to be talking about a home, you'll see that most people in homes with Alzheimer's are very unwell, it can be frightening to go into this situation so soon after diagnosis. However, it would very much be in your interests to go and visit lots of homes (on your own first) so you can find one that you might like best, talk to them about how best to help her and when a transition might be right, and then be prepared when the time comes with how to proceed.

3. Will she be self funded or state funded? Has she had a needs assessment? Either way, care at home is a good choice (live in is available) for the early years although it means a lot of work for you to coordinate. Does she have a partner or any other children, friendly neighbours etc? Also helpful to you is to find one contact person in each group of family / friends who you can confide in and ask to help if you need, also to pass information out to wider groups. You need to manage the dialogue around your mum carefully, people tend to freak out and draw all sorts of (often ill informed) conclusions. Avoid this by having a good dialogue with key people who can then talk to everyone else

4. You should start to familiarise yourself with her finances, household admin etc as soon as you can, and then when you have PoA just streamline to make them all as efficient as possible. It's a lot of work at first but gets easier over time.

5. Approach your local Alzheimers Society to see if they have a support group for people who've been recently diagnosed. These can be great for her to meet people in the same situation and also for you to get help and advice as well.

6. Look after yourself as a priority at every stage. This is a long and stressful process and you need to be mentally and physically able to help her over the hurdles ahead. Make sure you set aside time for proper sleep, exercise and eat really well, no matter what other things have to wait for you to do so. Keep talking to people, it is emotionally hard for you as well as you're losing her slowly as things change. Get some talking therapy if you feel it's all getting too much, and ask people around you to help you, most people are only too keen. A drop off here, pick up there, online shopping only to save time etc.

Good luck

There's two sorts of PoA, Financial, and Health and Welfare.

Health and Welfare only comes into effect when she has lost capacity, and this isn't an all-or-nothing - she may have lost capacity for some decisions but not for others - everyone who deals with her is required to make a capacity check (which may be very informal if all you're asking is "would like a cup of tea" or "do you need the loo").

Financial PoA can be written to take effect immediately it's registered, or only when capacity is lost. A Financial PoA to take effect without loss of capacity can be useful, so that you can look after, eg bills and one bank account, while leaving her to manage everyday spending from another bank account. But she needs to feel she can trust you.

Thank you. I've mentioned POA again and she may be amenable to it - my dad is still alive but very low energy and on lots of meds. But she seemed reassured when I said I could set it up for both of them ie its not a judgement call on her mental state.

that's interesting about not moving them. Where they are now is about 2 hours away which is doable and a nice drive but I obviously cant just pop in after work.

Up to this point she has even refused to sign permission for the doctors to talk to me - so I don't even really know exactly what the diagnosis is, only that she has been given meds for Alzheimers. Sometimes she says she had a scan, other times she says not.

She tells all her friends and family different things, and is very convincing in every scenario, so no one has a full picture of what is actually going on.

Good advice from @xsahm & @MereDintofPandiculation

It's early days still. Btw unfortunately that's nature of short term memory loss, DM will say different things to different people and at different times, as she can't remember. Is Dad unable to keep you updated?

Try and get that poa - there's actually 2 separate ones and getting both is important. Next step is to get adult social services on board - they won't do much I admit but their advice was invaluable and if things deteriorate fast they can step in easier if she's known to them. As to where they live, closer is better but if that's not an option, residential care is the best option in the medium term at least, once they get worse carers 4 times a day simply isn't enough

Not an expert on this but when I was in hospital there were a couple of nice but stubborn frail old people in there who wanted to stay at home and they were getting social services to get carers in place to come a few hours a day. Think you have to pay for it with assets over a certain level but something like that may help. I would also be looking at nursing homes though incase you need them longer term.

I just wanted to say @dreamingchild, to respond to the emotion behind your OP, it is very hard when a parent (or loved one) is diagnosed with dementia. As well as practical issues, it can bring a whole gamut of unanticipated emotions, including guilt at what you think you should do but can't do (especially if you already have other responsibilities)

You will find good advice on alzheimers society UK website , age concern, as well as information website for local adult services (to your DM's address).

Thank you so much for all these comments. It really feels sometimes that I am losing my own grip on reality as the situation is so confusing. On the upside, I went home at the weekend and got my mum to sign the POA forms - my mum agreed when I suggested that both she and my dad sign as that meant it was just something related to age and not a judgement on her, iyswim. She seemed so her normal self for most of the time....maybe the medication is working. I dont know.

That's good! Great to get sotting POA underway, far cheaper to set up LPAs than than waiting until it has to be Deputyship (for finances) and debts are mounting up whilst you wait the 16+ weeks COP can take. I hope you get some support & advice too.

Don't get overly anxious & worry what might come, as far too soon to be thinking nursing homes (I mean really a couple PPs have hit pedal from 0-60 in 10 seconds because of hearing the word dementia)
Those organisations will help you understand how it might affect your DM but she'll take her own path still.

Keep posting when you need to.. .. There's a few of us with experience from different fields/or personal experience in some form, replying on here.

*sorting not sotting

Whereismumhiding2 in fairness to other posters the OP herself had said that her mum was deteriorating fast and that a nursing home might need to be considered. Happily this seems that this may not be the case.

And I presume everyone offering advice on this thread has some sort of experience of this situation whether personal, professional or both.

Thank you for all the perspectives. The problem is that sometimes she seems utterly incapable: forgetting to eat, leaving taps on and flooding the house. And other times, she is functioning very very well and the only signs that things are wrong is that she gets a bit muddled with dates or times. So sometimes I think she absolutely needs to move to a home, and other times can't bear the idea of her in one when she seems so mentally alert.

I think that the fact that your dad is around is also helpful - not that he can necessarily do any heavy duty caring, but he may be able to provide structure for your mum’s day and also alert you if things are going badly wrong?

hi there - my mum is 10 years into alzheimers and moved into a nursing home this summer, with my dad who has mild dementia but serious physical conditions. We held off as long as we could and the move has gone ok for both of them.

i moved to live near them and that bought them another 2 years at home. I have finance power of attorney and used their savings to build up a package of care over time.

in terms of advice, read up on compassionate communication and also the book "contented dementia". I ended up treating that like a manual to follow and it has been the most useful resource. if you want to understand dementia a bit more, try Sally Magnusson's book about her mother. It gives you the brain science alongside a lot of love.

Thank you for the book suggestions. I will look.
My dad does sort of shadow her to make sure she doesn't get too lost, but he's not very good at remembering mealtimes either I think. They are both losing a lot of weight. I cant move near them - they would have to move near me, which means an unfamiliar place.
And I live in a much more expensive area so they would have to very dramatically downsize too and they both do love their home.