Advice on best place for my mum to live - own flat, retirement flat, CH??

[Cek]

Hello,

I'm new to this Forum but badly need advice as I just don't know what to do for the best. Bit of a long one, but I'll try and keep it as concise as possible!

My mum was diagnosed with Alzheimer's last year but suffered with the symptoms for two years before that. This has been confused by, apparently completely coincidentally, suffering a brain haemorrhage several years before which left her with 'mild cognitive dysfunction'. So she was having trouble with paperwork, finances, memory concentration and energy for many years before we twigged it was getting worse and that there was something else up - which led to the diagnosis of Alzheimer's.

Our big dilemma at the moment is where she should live. She lived with my for several months last year but it didn't work out. We have always been close but shouldn't live together and this was made worse by her condition, and my character (I have found it unbelievably hard not to get frustrated and irritated with her), and her character (very negative and wants to moan but doesn't want to try and solve anything). This led to huge rows and we were both very unhappy and stressed to the point of illness.

She has been back in her own flat for a few months now, which is near my home, and I still help with all the things I have been doing for the last few years (paperwork, finances, things that need fixing etc). However, she is still finding it very difficult to manage.

She is also getting more panicky, anxious, emotional and a bit paranoid (about the neighbour for example). She is on Donepezil (and anti-depressants) which have improved her cognitive function a bit but I think she's getting worse. She insists on wanting to put the flat on the market immediately but has no sense of where she could live/where she wants to live.

We've now narrowed it down to a few options but I just don't know what's for the best and would welcome any thoughts from anyone who's gone through the same thing.

1) Living with me again

I've offered this option but she doesn't want to.

2) Buying a flat in a retirement complex

This would help manage her fears of security and safety, not needing to be involved in managing the building, meeting people/social events etc. But she is only 69 and not frail and everyone who lives in these types of flat seem to be older. Also, they wouldn't cater for her condition at all. I'm concerned about buying a flat and then finding 6 months down the line that even that is not manageable for her. (I'm also not sure that they would happy for her to live there - do you have to declare your condition?)

3) 'Extra support care' housing

This would be great for her condition but the people there seem much worse than her. I'm not sure how helpful it is for her to have that. I want her to be in a supportive environment but not her whole existence defined by her condition - afterall, she's still technically in the early stages.

4) Another 'normal' flat

I'm presuming there's absolutely no point her moving to another flat. My dad (my parents are divorced but he know about her situation) seems to think that her living in a house with just one other flat (as opposed to where she lives now, which has 5 flats in total) would be easier for her as it should be quieter and less people to deal with. But I think that's wishful thinking. He's convinced she's ''too young'' to be living in a retirement flat...

I just don't know what to do for the best - is there anyone out there with a parent who is not really 'old' but needs more help and has gone through a similar decision?

I have a brother but, in all brutal honestly, he is useless, has done nothing to help, doesn't live nearby and just doesn't seem to 'get' her problems, and there is no-one else, so it's down to me really.

thank you

 

[marionq]

By the sound of it the progress of her illness will dictate what will be necessary, I would not be rushing into a decision as within the year the route to take will probably become clearer. Have you thought of a "Befriender" to see her through the next few months at least. Talk to Age UK about the situation and they will have more ideas.

 

[Jessbow]

I'd go for 3) She will no doubt 'grow into it' and moving while you are not desperately in need has to be better.

You may find there is a wait anyway

 

[Cek]

By the sound of it the progress of her illness will dictate what will be necessary, I would not be rushing into a decision as within the year the route to take will probably become clearer. Have you thought of a "Befriender" to see her through the next few months at least. Talk to Age UK about the situation and they will have more ideas.

Thanks for your response. I have previously suggested a Befriender but she says she doesn't want to talk to a 'stranger'. I will ask again - she often changes her mind and doesn't always remember what has previously been suggested...

Completely agree with you about how her illness will dictate the best route. It's what I find is the most frustrating thing about what is already a hideous disease. Not knowing when she might get worse or how worse she might get makes it so hard to plan! Her impatience/lack of tolerance makes it even harder. But I have to remind myself that she can't help it.

thanks again

 

[Cek]

I'd go for 3) She will no doubt 'grow into it' and moving while you are not desperately in need has to be better.

You may find there is a wait anyway

Thanks for your response - I think you might be right. No point in finding in a year's time she needs fuller support. We have applied to a place but didn't want to rely on that - as you say, long waiting times and no guarantee you'll get a place at all. But fingers-crossed.

thanks again

 

[FifiMo]

Another option that you don't mention is a residential care home. There are new sorts of dementia homes popping up where they care from the person from early stages through to end of life. The benefit of a place like that is that as she deteriorated then she could move to different parts of the home without becoming confused and scared about moving yet again to another place. I hear you saying 'she's not ready for a care home' but a residential home might have few restrictions and she would be able to come and go as she wished - that type of thing - but she would be supported - meals provided - laundry done for her, cleaning done. All the things that she is struggling with already in terms of the responsibility for managing her existing home on a day to day basis. Equally, as she deteriorates over time, the staff will be there to notice this and when they consider that she is in need of more complex care they can just move her to another room with very little trauma on her part.

Another thing to bear in mind is that her expressing a need to move is a factor of the illness. Families want the person to be happy so they arrange a move, only to find that the person is not content there either. It is almost as if they are searching for 'something', perhaps somewhere that is familiar to them or where they feel safe and secure. Very often this takes the form in their mind's eye of a wish not to go home to their current home but to return to were they lived as a child and where mum and dad looked after them. Sadly this is the very thing that none of us can deliver. In view of all this, you might want to take a moment to ponder whether this is the case for your mum and whether the idea of moving her is not going to provide the answers that everyone thinks. Indeed, if she doesn't settle in her new abode, no matter where that might be, then you are going to feel under pressure to do something else to try and appease her.

I know we don't have a crystal ball and that it is difficult to decide what to do for the best. If I was pushed then I would probably pick either the sheltered housing or the residential care home, although the sheltered housing is not going to be a long term solution and you will probably need to move her again in the not to distant future.

Fiona

 

[Cek]

Another option that you don't mention is a residential care home. There are new sorts of dementia homes popping up where they care from the person from early stages through to end of life. The benefit of a place like that is that as she deteriorated then she could move to different parts of the home without becoming confused and scared about moving yet again to another place. I hear you saying 'she's not ready for a care home' but a residential home might have few restrictions and she would be able to come and go as she wished - that type of thing - but she would be supported - meals provided - laundry done for her, cleaning done. All the things that she is struggling with already in terms of the responsibility for managing her existing home on a day to day basis. Equally, as she deteriorates over time, the staff will be there to notice this and when they consider that she is in need of more complex care they can just move her to another room with very little trauma on her part.

Another thing to bear in mind is that her expressing a need to move is a factor of the illness. Families want the person to be happy so they arrange a move, only to find that the person is not content there either. It is almost as if they are searching for 'something', perhaps somewhere that is familiar to them or where they feel safe and secure. Very often this takes the form in their mind's eye of a wish not to go home to their current home but to return to were they lived as a child and where mum and dad looked after them. Sadly this is the very thing that none of us can deliver. In view of all this, you might want to take a moment to ponder whether this is the case for your mum and whether the idea of moving her is not going to provide the answers that everyone thinks. Indeed, if she doesn't settle in her new abode, no matter where that might be, then you are going to feel under pressure to do something else to try and appease her.

I know we don't have a crystal ball and that it is difficult to decide what to do for the best. If I was pushed then I would probably pick either the sheltered housing or the residential care home, although the sheltered housing is not going to be a long term solution and you will probably need to move her again in the not to distant future.

Fiona

Hi Fiona,

Thanks very much for your post. Your point about her searching for 'something' is interesting. Yes, I suspect nothing will be quite right for her.

But I think anywhere that takes the stress off her in terms of safety and security and takes away some of the responsibility will be beneficial - but absolutely it may not totally 'fix' the problem. I've tried to manage her expectations, that nowhere might be perfect but as long as it's better than her current situation. But as you know, rational, problem-solving thinking is very hard for her, as is understanding her own expectations.

I will definitely look into residential care homes. Thanks again -

 

[snowygirl]

Befriender

Thanks for your original post Cek I'm not sure I have the answer(a residential home to me seems the best answer) as I'm searching for answers myself to this terrible disease but can you tell me what a befriender is please?

 

[marionq]

Thanks for your original post Cek I'm not sure I have the answer(a residential home to me seems the best answer) as I'm searching for answers myself to this terrible disease but can you tell me what a befriender is please?

The best place to find out is on the AgeUK website. I spoke to a fellow in Alz Scotland who worked as a Befriender and he made it sound like a really good option for early stage sufferers.

 

[jugglingmum]

I have recently moved my mum into a sheltered extra care flat. She has carers popping in twice a day to help with meds, and they are meant to help with cleaning but so far she is refusing but this is gradually changing.

She says she doesn't want to be there to others and wishes she was still in her old home. I think that she remembers how she was coping a few years ago, and not how it was when she was struggling and lonely.

She has said to me that I made a good choice as she is still in her own flat with her independence, but doesn't have to cook and can use the restaurant. I think she would have been happier in a similar place near to her old home, but that is a 3.5 hour drive away and I am doing her shopping and dealing with all the finances whilst working part time and a lot of family commitments so wasn't a viable option.

At the moment she has 5 hours of care a week and this can be increased up to 20. At this point or if she started wandering, they would then suggest she moved.

There are a team of carers based on site so she has got to know all of them, and with a supervisor on site there is extra time available when needed from time to time. They have called GP out and dealt with it when I was at work.

I know it is the best place for her at the moment. A warden flat would not have provided enough support and a home would have removed too much independence for now. Every one is different so just giving my experience.

I have to say that when we looked round a saw a lot of people with more needs than her, but since she has moved in there are clearly many with less.

 

[Cek]

Thanks for your original post Cek I'm not sure I have the answer(a residential home to me seems the best answer) as I'm searching for answers myself to this terrible disease but can you tell me what a befriender is please?

Hi there,

A befriender is a volunteer (AgeUK and Alzheimer's Society both have them) who literally 'befriends' the older person - chatting to them on the phone or in person and going out for a walk with them, for example. They're not there to be carers or anything like that, but offer friendship and support to someone who might be lonely.

 

[Cek]

I have recently moved my mum into a sheltered extra care flat. She has carers popping in twice a day to help with meds, and they are meant to help with cleaning but so far she is refusing but this is gradually changing.

She says she doesn't want to be there to others and wishes she was still in her old home. I think that she remembers how she was coping a few years ago, and not how it was when she was struggling and lonely.

She has said to me that I made a good choice as she is still in her own flat with her independence, but doesn't have to cook and can use the restaurant. I think she would have been happier in a similar place near to her old home, but that is a 3.5 hour drive away and I am doing her shopping and dealing with all the finances whilst working part time and a lot of family commitments so wasn't a viable option.

At the moment she has 5 hours of care a week and this can be increased up to 20. At this point or if she started wandering, they would then suggest she moved.

There are a team of carers based on site so she has got to know all of them, and with a supervisor on site there is extra time available when needed from time to time. They have called GP out and dealt with it when I was at work.

I know it is the best place for her at the moment. A warden flat would not have provided enough support and a home would have removed too much independence for now. Every one is different so just giving my experience.

I have to say that when we looked round a saw a lot of people with more needs than her, but since she has moved in there are clearly many with less.

Hi,

Thanks for your post. Where your mum is sounds exactly like the place my mum has applied to. Interestingly, we too have seen people who seem a lot worse than her which worried me a bit (would that be too depressing for her?) but as you say, sometimes you don't really understand someone's true needs until you spend more time with them.

Eg. Mum finally had her first day at a Day Centre this week. (Had taken months to get her in...). A real mixed bunch there - some obviously old, frail people but still pretty switched on, and some people who were younger but obviously had quite obvious cognitive impairment. I thought "Is it going to upset her too much to see what the future is likely to hold for her??" - but this is the problem with the system, it does seem to lump everyone together although there's quite a difference between early, middle and later stages of the disease.


I actually got one social worker telling me that if my mother wasn't wandering yet and could catch a (familiar route) bus alone then she was fine. Talk about not getting it!

BUT the fact is she has bad days where I know the best route for her is the extra care flat. What's upsetting is that there are only 2 in the area and both have waiting lists and an average of only 2 flats becoming available each year. I moved 4 years ago to be closer to her so I wouldn't want her to move too far away for me or her 'home' area. Like you, I've got a lot to juggle and am/will still be dealing with her admin etc etc.

But it's incredibly frustrating, stressful and upsetting waiting to know what the hell is going to happen. None of these places seem to be particularly well managed. The same social worker actually advised me against applying for the 2nd place because it was badly managed. Then why doesn't the council sort it out!?

So, I agree with you about the extra care flat - your mum and your situation sounds quite similar to us, so I thank you for sharing your experience.

I also agree with FifiMo in an early post, and which mirrors some of the things your mum has said - that they may never be truly happy anywhere, because the perfect answer doesn't exist. And sadly the disease can mess with their memories of past realities and understanding the concepts of compromise and decision-making on options. We can only do our best with what the options are.

thanks again -

 

[Eleonora]

Hello CEK; I have some small experience of Option 2 – buying a flat in a retirement complex.

I moved here with my husband, who has moderately advanced AH, and we are very well settled here. One has to be over sixty to live here – but there are quite a few residents who are still in their early sixties.

We have several single people with varying, but mild, forms of Dementia /Alzheimer’s living happily here.

They usually have a Carer or cleaner, (either privately funded, or financed by social services) who calls several times a day, and undertake household tasks, personal services and simple cooking for them.

There is also a resident House Manager, who can be helpful if an emergency arises; and, ‘Careline’ emergency service can be contacted by pull-cords, if paramedic attention is needed.

These services, together with family visits seem to keep the resident happy and well cared for. On the social side, there are quite a few outings and informal get-togethers which are entirely optional.
The atmosphere is very caring, and residents tend to be supportive of each other in a neighbourly way.

If your mother’s health deteriorates, and you have chosen a flat in a good area, you would not find it too difficult to sell her flat, possibly at a profit; or it would be highly rent-able.

I would suggest that you take a look at one or two retirement flats – you might be pleasantly surprised.

Another thought; friends of ours have downsized to a retirement community; which is like a small normal village, with extra services for anyone who might need them. They are quite expensive – but offer a great deal of support.