Both parents have Alzeimer's part 2

[Runner123]

I just wanted to add an update to my previous posting and to say thanks for the useful advice.

Both 80+ year old parents have diagnosed Alzheimer's and I'm an only child so all the responsibility for their care and care planning falls upon myself and my wonderfully supportive wife. I've started the application process for Attendance Allowance for each of them and I've tackled the subject of them not coping (shopping, meal planning and preparation, locking themselves out and forgetting the key safe code to get back in again, remembering to shower each day and getting mixed up over medication) and to give them both credit they agree entirely and are willing to go into a care home.

The subject has been raised numerous times recently and they haven't changed their minds and actually are releaved a change is happening and are once more optimistic about their future.

The problem now is finding a home that is suitable for their differing needs as they wish to remain together and both want a twin bedded room which of course are in short supply.

My wife and I have visited some homes and though the staff in them have been amazing and highly dedicated the overall impression is that my parents aren't as bad as many of the residents we've seen. So, we are beginning to question if we've made the right choice of a care home or should we consider extra care housing (assisted living)? A move from where they live now is a definite and they have enough resources to be self funding.

Have other members had similar doubts and has anyone had experience of dealing with both parents who are at different stages of their Alzheimer's?

 

[doodle1]

Hi there
To be honest I would not make a move twice- go straight to care home . Otherwise you will only have this nightmare twice over. My mum is in a specialist dementia home and there are many people of varying abilities. It depends on the manager of the home as to how well the various needs are integrated. I am also an only child who has coped with both parents with dementia.
But here's a thought I don't know how far away from your parents you live and that is important but had you thought of live in care for them?i managed both my parents for five years at home with live in care and it worked. It was cheaper than two in a care home and I managed it until 15 months after my dad passed away.
Please feel free to pm me if you want more details,
Wishing you well
Jane

 

[Mannie]

I too would agree , consider care at their own home and then move to live in care if they wander or cannot get to the toilet at night or cannot be left safely while they have access to kitchen, electrics etc.

Try and maintain them at their current home as long as possible , and then to a care home .

My dad used to sing and talk at night so my mum was happy in the end to have a separate room.

I also had that dilemma about not wanting to split them, but I felt that it helped that they moved to care home together since they had each other's company.

 

[Amy in the US]

I'm an only child, but only coping with one parent with dementia, my mother, 75, Alzheimer's. My father and FIL are both deceased.

I have been in the position of having to move my mother into a care home, and then within that care home to a higher level of care (from what we call Asssisted Living in the States, to a locked dementia unit in the same facility).

The first move was "easy" in that she was assessed in hospital (US version of sectioning) and deemed to require a care home.

The second move was prompted by the staff at the care home feeling she needed the dementia unit.

Both times, but especially the second, I felt reluctant.

Both times, it was quickly apparent to me, after the move, how much she needed the extra supplies and that I should have done this sooner.

I also moved her from her home of about 20 years, in a city she'd lived in for over 50 years, to nearer to me. She was 100 miles away and even though not a bad drive, the long distance caring wasn't working and was killing me. It is much better to have her only 15 minutes away.

That's my short version, for what it's worth. Please feel free to ask questions. And best wishes finding a way forward. I know it's not easy.

 

[Kikki21]

I’m an only child & my dad had Alzheimer’s - he was looked after by my mum at home all the time apart from his last week when he was in hospital. He passed 18 years ago nearly to the day.
Consequently my mum has developed mixed dementia, she is 89. She was doing well before her admittance to hospital with a chest infection & then readmittance with seizures. She had the standard 4 visits a day.
I know she would like to remain at her home for as long as possible but she is now very anxious that she won’t be able to cope on her own either.

I guess you need to look at that Factor for your parents as in is one of them better than the other in dealing with tasks etc.

I’m looking at all sorts of options for her as my suspicion is that social services may try to keep her at home with the maximum amount of care hours possible. I don’t think that would be a long term solution though so I may be looking at part time care at night ( not every night) that my mum would have to fund herself.

 

[jugglingmum]

My mum is in a sheltered extra care flat and it has been fantastic for her, I think it is a really good solution for early stage dementia, but the provision does vary across the country.

She was 200 miles away from me, and I hadn't visited her house for a long time due to pre dementia hoarding (which had existed my entire life) and she drove to visit me. There was a crisis and we realised she couldn't go back to her own house, and I had to find somewhere. It became clear to me on looking at sheltered accommodation that this would not provide enough support to my mum, so I looked at sheltered extra care (through my job I was aware of the principle of it, and having had contacts with some of the national advocates for it - including dementia sufferers as this reduces the anxiety which arises to due loneliness and isolation in your own home - I am an accountant, but have been involved with housing associations for many years).

I was aware my mum wanted to retain as much independence as possible, and whilst I would have found a care home for her if I couldn't find anywhere else, I wanted to try to find the right place.

With sheltered extra care there are a dedicated team of carers on site - normally 24/7 although when my mum moved in they didn't cover any care calls between 10pm and 6am, they now do. So if the care line is pulled at any time of day there is someone on site to come to the flat straight away not a remote call centre. Mum has her own flat, but daily activities and company when she goes for her lunch. As the carers are on site a 15 minute call is a full 15 minutes. Once meds are given they stay and chat for 10 mins for example.

My mum can still make herself a cup of tea but she can't cope with cooking cleaning shopping etc, She has an am and pm call for meds - this started as a prompt and moved to a locked away administered by the carer position. In May this year I added an evening call to heat her a microwave meal as she was no longer eating much in the evening. She eats in the on site restaurant for lunch. The carers clean her flat once a week - this actually fell outside her allocated hours at one stage and was done by the same carers, but paid for separately as it was cheaper than going up a 5 hour care band. She has always had a weekly prompt to shower but this wasn't very successful, this has recently been moved to a different time, but still doesn't work very well.

They are daily coffee mornings which my mum took part in when she was first in the flats, but she doesn't really understand now. She is happy to be in her flat, and do crosswords and read.

In terms of needing another move to a care home later, I will deal with this when needed. My mum was diagnosed and put on donepezil/aricept just after she went into her flat and she has been there for nearly 4 years, the monthly cost is about £900 including rent, she is very happy and compared to some care homes which cost that much a week there is a significant saving. I do her shopping as she couldn't manage this but I don't have time to do cleaning supervising a care package. With sheltered extra care there are on site supervisors and managers with the care company to deal with problems. In a lucid moment mum has told me she is very pleased with what I found for her, she values the fact that she is in her own space.

There is no guarantee if you move your parents into one care home, they will be able to stay in that home, as dementia develops they may need EMI care (elderly mental infirm) but if they don't need this level yet I don't think it is appropriate to move them to that sort of home at this stage. A colleague moved her mum into one home which dealt with early stages and had to move her to a different one with a secure dementia unit. Even if it is on the same site, a different unit means different staff.

My mum's house was uninhabitable, and 200 miles away so she had to move, but care at home means alot falls to you, they have a large house to rattle around, my mum really appreciates her small flat, and I think too many are left alone for hours on end in their own houses when sheltered extra care is a much better option.

At the meeting I had with a SW when mum's care package was upgraded in May, they stated they now try and keep people in sheltered extra care through to end of life, rather than a care home, unless wandering or aggression arise. This would apply to those that aren't self funding.

I suggest you try to look at the sheltered extra care in your area and see if it is suitable.

 

[Shedrech]

hi runner 123
lots of suggestion from other members
I'm just picking up on this

to give them both credit they agree entirely and are willing to go into a care home.

The subject has been raised numerous times recently and they haven't changed their minds and actually are relieved a change is happening and are once more optimistic about their future.

it may well be that they each/both know just how challenging life is for them and would be relieved (as you say) to have no responsibilities at all - it's not often that a parent is wholly co-operative with a move to a care home, so it may be worth going with that while they both do agree - though I appreciate that it could be said that showing this much comprehension of their situation shows that they aren't yet 'ready' for full time care - you know them best, so that's down to you
I suspect that when you begin your research into what is available locally and talk with the managers of the various options, things will become clearer for you

 

[Linbrusco]

I must be one of the rare ones with both parents with dementia...
Mum 76 with Alz in care18 mnths & Dad 80 with cognitive impairment, pending another assesment, whereby if Dad needs care it would be a disaster for him to go to the same care home as Mum.
It is truly wonderful that your parents recognise the need to go into care together.
Not sure of the system there in the UK but the one move only would be best and somewhere that caters for needs if one parent deteriorated.
My Mums Care home has Rest Home( mild dementia with no wandering risk) Secure Dementia & Hospital level.
We have many in Mums secure unit that have spouses in the Rest Home that visit daily.

 

[DMac]

I just wanted to add an update to my previous posting and to say thanks for the useful advice.

The problem now is finding a home that is suitable for their differing needs as they wish to remain together and both want a twin bedded room which of course are in short supply.

... the overall impression is that my parents aren't as bad as many of the residents we've seen. So, we are beginning to question if we've made the right choice of a care home or should we consider extra care housing (assisted living)? A move from where they live now is a definite and they have enough resources to be self funding.

Have other members had similar doubts and has anyone had experience of dealing with both parents who are at different stages of their Alzheimer's?

Runner, it's probably fairly common to have both parents with dementia at the same time, - I estimate the odds at about 1/16 if they are 80+. (It's less common having both parents with dementia UNDER 80 - about 1/625 I guess - this, sadly, was true of my parents-in law when they both developed the illness in their 70s.)

My advice would be to continue your search for a suitable care home, to see if there are any that are willing to accommodate them both. As you say, twin-bedded rooms are in short supply, and in any case may not be suitable if their needs are very different. It may, however, be possible for them to be close to each other and able to see each other during the day, whilst being cared for separately at night time. My mother-in-law's care home has several couples who are accommodated in this way.

I would also concur with the advice to move them once only, to minimise the inevitable upheaval and stress for you all. You say that your parents don't seem as bad as other residents, but now is the time to be thinking about their future needs, as there is only one direction for this disease to progress in, sadly. It's tempting to think of someone as having only 'slight' dementia, but that's rather like describing a pregnant woman as only a 'little bit' pregnant! The more 'able' they are at this time, the better their chances of adapting to their new environment.

I wish you well, and please let us know how things develop.