Mum doesn't want to go home

[Yorkshire Girl]

Hello,
First a bit of background: my 84 year old mum was diagnosed with mild Alzeheimers a few months ago. She seems to have accepted her diagnosis and is on medication (memantine) which seems to be helping with anxiety. Until my dad died 3 1/2 years ago mum had never lived on her own and she really hates it. From the outside she copes fine, she has a cleaner and a gardner plus a network of tradesmen who she can call on to help her run her home. She's lived there for 45+ years and so has friends and neighbours who look out for her and call round quite frequently.

I have a half brother and half sister (mum is their step-mother) and they both get on well with mum. The problem is that all three of us live at least 150 miles away from mum (in opposite directions!) My husband and I see mum once a fortnight (alternating between visiting her and having her to stay), and my brother has her to stay for a week every few months.

Mum came to stay with my husband and me just before Christmas (she has done first with dad, and then on her own, every year since we got married) and will be here for another week. It is lovely to see her relaxed and not worrying. But now she is starting to make lots of comments about how she'd love to stay here and move in with us.

I really don't think it could work. My husband and I both work full-time, so we are out of the house at least 11 hours a day. Mum doesn't know anyone here except for us and a lot of things I've read seem to suggest the best thing is to keep someone in familiar surroundings for as long as possible. It is one thing to have mum to stay for a couple of weeks at a time, but I really don't think I could cope if she were here full-time and I can imagine myself getting very resentful.

Does this make me an awful daughter? I really do want what's best for her, but I'm pretty certain moving here isn't the right thing. I'm already dreading the day we have to drive her home as I know she will be miserable - even though we will be back to visit her within a fortnight. Help - how do we know what the right thing to do is? Where is the life-manual for this?

Thanks for listening.

 

[Pickles53]

Your mum still has a network of friends and neighbours where she lives so does have a social life independent of you and people to turn to for help. She may think that if she moved it would be like a short visit ie that you would be able to keep her company all the time.

If you don't think it would work, (and I can see why it wouldn't) you have to stick to your guns and support mum in other ways, otherwise you will all end up unhappy and resentful.

My mum lived 60+ miles away and I would visit and stay for a couple of days every two weeks. She could not have lived with us because of her mobility problems and no way of having a bedroom or bathroom downstairs. However I don't think it would have worked in other ways; she had no confidence to even step out the door alone and would gave wanted me to be with her all the time. In the end, as she kept saying she didn't want to be at home, the best solution we could come up with was to move her to a residential home near us. She didn't much like that either but by then it seemed nowhere would suit her and at least we could visit more often. Sadly she died in November after just a few months stay but we don't regret our decision for a moment.

 

[Yorkshire Girl]

Thank you so much for replying. We are definitely convinced that it would be best for all of us (especially mum) if she can carry on living where she has spent so much of her life. Mum and I have been to a series of "Living Well with Dementia" talks and we are having a follow up session with one of the volunteers early in the New Year to get mum more involved in the social activities that are organised by the group (another plus point for staying put - the meetings are held 10 minutes walk from mum's house in the church hall of the church where my sister got married!) And we (mum and I) are looking at other groups/activities. Fortunately later yesterday evening mum was talking about things to be done when she got back home.

Alas I'm not convinced that this time next year mum will be able to live on her own in her house, but it's so hard to know what to do for the best. We are beginning to think about having carers come in, or maybe sheltered housing but neither mum nor we really know what we're doing. I will definitely be back with lots of questions in the coming months.

 

[cragmaid]

Hi, If I was to give advice, I would think about carers at her home rather than moving into sheltered housing ( whole new layout, personalties etc), when you cannot predict if there will have to be a further move into residential care quite soon.
Sorry...can't help any better than this..x

 

[Pickles53]

Hi, If I was to give advice, I would think about carers at her home rather than moving into sheltered housing ( whole new layout, personalties etc), when you cannot predict if there will have to be a further move into residential care quite soon.
Sorry...can't help any better than this..x

I agree craigmaid. I looked at various types of sheltered housing for mum, including some which were advertised as 'extra care' (though this seems to mean different things in different places). There were a number of reasons we eventually ruled this out...

Although activities were on offer, a resident would have to remember what was happening when and be self-motivated enough and physically mobile enough to get there. Mum would still have been at home alone a lot of the time.

Mum's CPN agreed with us that mum would have difficulty learning how to use any new appliances or even remembering how different taps or light switches worked.

Almost all the local housing was controlled by LA housing priority list, and it appeared that you would only qualify if you were already having at least 4 care visits a day and this was clearly insufficient. You had to register and 'bid' whenever a property became available, and there was no way of predicting how long you might have to wait.

Non-LA housing was only available to buy, not rent, if you already owned a property.

Mum would still have needed carer support just as much as at home.

Added to this, the concern you raised that a second move might be necessary before very long was the deal-breaker. We put our energies instead into finding the best possible care home and events subsequently proved that this at least was the right decision.

 

[marionq]

My sister in law lives in very sheltered housing which is brilliant but definitely not suited to dementia as it is independent living with help. I can see several residents with early dementia who will have to move on soon to more care.

 

[Yorkshire Girl]

Wow - what a lovely caring group of people you all are. Thank you so much for taking the time to reply and to give us your experiences and things to think about. We are just embarking on our first steps along this path and you are more helpful than you will ever know. You've pointed out things that, when I step back, I should have thought of and have helped me focus my thinking. I don't feel quite so alone in all this - thank you so much

 

[Witzend]

Something to bear in mind is that someone with dementia may get worse quite quickly, and speaking from experience here, what can seem quite do-able at first can soon take over almost your entire life. Being unable to leave the person even for half an hour, because you just don't know what they might do, endlessly, badly disturbed nights - I could go on.

There is also the fact that Social Services (if you should need their help) are less likely to do anything if the person is actually living with you, since obviously they know you are on the spot and are not going to walk out.

We had my FIL living with us for quite a while, and I can only say that when it came to my mother, there was no way I was doing that again. I was on my knees with stress and exhaustion - and he hadn't seemed too bad at all at first - we had blithely thought it'd be fine.

None of these decisions are easy, though. Nothing to do with this beastly disease is easy.

 

[tracey6585]

Hi

We have recently taken the decision to move Mum and Dad up with us. They are only an hour away, but mum is really struggling to adjust to her life now. All my uncles are in their 70's and have their own health problems so she has no-one day to day to ask for help and advice.

In the last six months, dad has deteriorated from being completely independant to now mum having to fight him on everything - taking medication, getting washed, trying to go outside all the time, trying to go home every time they arrive somewhere and it is all too much for mum. Local services expect her to do everything without much support and she needs some kind of 'crisis' line to speak to that offers practical advice to vulnerable carers.

So we have taken the decision that the stress of moving them up with us is worth it if we can be off assistance. I can be there for her then in the evening, and we can help her manage the issues with sundowning and sleeping - which might give her enough sleep to function

So sad to see my lovely dad at age 68, being dressed like a baby, not quite the retirement he was looking forward to. Anywhere where your loved one is surrounded by the most help has got be the best option

 

[2jays]

From me noticing mum had memory problems until now it has only been 4 years. The first 2 years when she was in her own home were manageable... ish.... sort of..... Actually it was a dreadful time for me...

Moved her into care 2 years ago because of wandering down dangerous roads and banging on neighbours doors 10pm at night accusing them of stealing

1st year was ok.... Better than when at home.... Last year she had dramatic down turn after dramatic down turn.

Since late September last year she is doubly incontinent, doesn't often know whether it's day or night, wanders constantly and falls regularly and just recently is needing to be fed as she cannot work out what to do with the food in front of her. Or have a drink even though she is desperate for a drink, she cannot work out how to use a cup. Fights anyone who tries to help her. I've Got the bruises to show....

Just be aware that things can change so quickly






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