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What should they do? What can I do?

(29 Posts)
EdithSimcox Wed 16-Mar-16 00:18:31

I'll try to be brief. DM has dementia (not yet diagnosed but very obvious). DDad is fine mentally but starting to lose mobility. They live in a big house in the country. Dad drives and does everything - shopping, cooking, organising. DM loses things, forgets everything, doesn't know where she is half the time (even at home), and has every appearance of anxiety and depression (also undiagnosed) - often distressed, lots of tears etc, and pain from arthritis. Dad is a saint dealing with her moods etc and very patient but not always brilliant at sorting her out (e.g. when they came to visit last week she had no coat, and not enough clothes packed). DM is also paranoid so won't accept help and genuinely thinks everyone is out to get her.

I live in London. They are 3-4 hours away. My DB is abroad. For years they have been talking about moving - downsizing, being nearer me and the DGC. We have been looking at houses on our road. DM is very keen on the idea most of time (but swings around too). Dad just wants a quiet life, and if she wasn't so keen would v happily stay put where they are, or move into sheltered accommodation. He sometimes thinks it's too late to move at all.

The idea of moving now seems absurd. They could never pack up the house, or decide what to keep, or cope with the move. But staying put is impossible long term too I'd have thought as DM will never accept carers until she is too far gone to have a say - by which time Dad will be on his knees.

Obviously I need to step up and do what I can - I've already pencilled in a load of weekends to go and visit etc. But there's a limit to what I can do from this distance other than phone often (so Dad has someone to talk to mostly - he must be so lonely as she can't have a normal conversation anymore).

So, people with experience of this dilemma, how did it work out for you?

Canyouforgiveher Wed 16-Mar-16 00:25:42

This is so hard. My complete sympathies to you.

I think first of all you might want to take a few days off if possible and go up and meet with the local health team and see what they can put in place for the immediate needs.

Also get your brother on board. I live abroad and my sister did most of the heavy lifting for my parents but in fairness to her she involved me in every decision (I deferred to her for most) and in fairness to me I came home more to do doctor's appointments/helped out with money etc.

To me the best solution might be sheltered accommodation now - with the proviso that it would provide accommodation for your mother if her dementia got worse. Don't worry about the packing up etc. You could help with that. there are companies who can help with that. That will work out. The big decision is what is best for your mum and your dad both for the future.

I am in the US so it is a bit different but is there such a thing as a geriatric consultant you could hire/ask for help in arriving at this decision? Someone who knows the help available from NHS etc. someone who can help you weigh your mum's needs with your dad's needs with your own resources?

This is a very hard stage of life. I wish you the best.

EdithSimcox Wed 16-Mar-16 00:39:33

Thanks canyouforgiveher. What do you mean about meeting immediate health needs? I have seen the GP with her once, and got a referral to the memory clinic - but from talking to others I think they will just prescribe Aricept (or not) and send her away again. She's non-compliant with pain-killers for the arthritis despite the pain, and won't acknowledge mental health issues at all (depression etc) so there's no chance she take pills of any kind I don't think. Is there anything else I haven't thought of? It seems to me that in fact there's nothing medical that can be done..?

One thing I forgot to mention is that they are hoarders. Not full on Channel 5 documentary style, but they have loads of stuff - including most of their parents' furniture, books etc. - and they are very very attached to things. So it's not so much the packing up, as the mental hurdle of the getting rid of stuff that's the big issue with moving... just to add a further complication.

Canyouforgiveher Wed 16-Mar-16 01:52:03

Edith, I kind of meant maybe some support for your dad. Maybe a day center one day a week or a health visitor coming.

My knowledge is in US and Ireland (so hoping bumping this will help to get UK posters involved) but we did get a home help for my mum when she was going a bit poorly through the health service in Ireland.

Also really do involve your brother. If he is halfway decent he should ask what he can do to help. Maybe nothing now but maybe he will be able to help later.

My parents weren't hoarders but they did have ALL their stuff-including my grandparent's stuff. When they died, clearing out the house for sale was .... incredible. My sister can be a pill and a half but I forgive her a lot for bearing the brunt of that one (I did come home for a weekend or two too).

EdithSimcox Wed 16-Mar-16 08:03:01

My brother has suggested they go to visit him - a long flight on a small airline they won't trust, or a change in another European city first. Last time they went it took 10 hours and they were beside themselves. In some ways it's a good idea - a bit of respite for a week or so - but the travel will be truly awful for them. I told him it would good if he could come over more - we'll see if that happens!

It's a good idea I'm sure but my DM wouldn't go near a day centre - that would be for 'old people'!

PurpleWithRed Wed 16-Mar-16 08:31:39

My 95 year old mum has recently moved from Devon to Surrey to live near me, and we're facing a very similar situation to yours with the PIL. FWIW here are my suggestions.

Like Canyou said, you need to split this into short term immediate needs and longer term plans. Short term it sounds as though a proper diagnosis for your mum would help - obviously it won't help her dementia much especially if it manifests itself in non-compliance with medication, but it might help you access more suitable support. You also need to get lasting power of attorney in places for both your mum and your dad and make sure their wills are sorted if they aren't already.

It might be a good idea to assess just how useful DB is going to be. Sounds like not at all useful in a practical way, possibly in denial, but get this straight in your head now so you can plan ahead. Does he have money? That may end up being more helpful than anything practical.

Then you need to consider them selling up and moving, especially if DM is on side with moving near you. Roughly what's their house worth? Check out all the local options - sheltered, assisted living, or ordinary residential so you can have a plan, and also check out the housing supply. You may have to wait and pounce. If you are near London and they are 4 hours away do they actually have enough money to move close to you? Yes moving them will be hideous, but it will be hideous anyway and will only get worse so you're going to have to get your head round it. With Mum she put the house on the market as it was, got no interest, DSIS and I went down and did a ruthless declutter which she resisted to start with then got really into, repainted it, and it sold next day. Mum engaged with the declutter because she really wanted to come and live near me but you could always put stuff in storage to start with.

From my own experience of moving my mum this distance at the age of 95, sooner is better so they can build up a bit of a local social routine and meet new people. It also helps with getting accommodation and into care (which your mum may well need eventually) if they're local.

All this is going to be a big drain on you, but you need to get started now. We left it 10 years too late and Mum is struggling to find friends (at 95 she is fully with it, fully mobile etc). It's tough, but it has to be done. Good luck.

BoboChic Wed 16-Mar-16 08:35:24

Have you got a sheltered housing development near you? It sounds as if your parents will need a lot of support moving forward.

As for possessions - you just have to bite the bullet...

whataboutbob Wed 16-Mar-16 14:26:07

Hi Edith I can see quite a few similarities with the situation I was faced with: a Dad with dementia and a brother with worsening mental illness living together in a hoarded house. That was 5 years ago. I live about 2 1/2 hours away on public transport. Here are the things I learnt:
Getting power of attorney was essential, if it is too late for you to get it for your mum try and get it for your Dad. In my Dad's case sooner or later bills stopped being paid, tax office needed to dealt with etc etc.
I only managed to de clutter when Dad's dementia was such that he didn't care anymore when I walked out of his room carrying black bin bags full of junk.
Getting other people on board (not family, there was none ) was v helpful Dad was referred to a dementia treatment team and they helped with some home stuff such as smoke alarms. Eventually he has to have daily carers as my brother could in no way cope with the day to day care. The team helped find competent carers.
He went into a care home in January as his needs escalated to such a point it wasn t manageable at home anymore.
Moving home might yield limited returns and a person with dementia prefers familiar surroundings. It might be more realistic to try and improve the home environment and get support there until your mum needs to go into care.
I think it is fine to be quite directive and ruthless as Purple was. Elderly persons can be very resistant to change especially if dementia has set in. You also need to think of yourself, what you can take on etc as supporting the dependent elderly can be very hard work. Don't feel guilty for just switching off sometimes.
Post again on these pages if you need more support.

EdithSimcox Thu 17-Mar-16 20:46:56

Thanks all. We have some of those things sorted already, so that's a start. The thing I'm struggling with though is whether there is actually much to be gained by moving. DM would be even more disoriented, and it might hasten her decline, and dad doesn't like London. Maybe it makes more sense in fact to stay put. And when necessary get some care in. I don't think they would make any friends if they moved to near me. Not that they have many left down where they are.

It's would be a huge drama, for very little benefit. I also think it's very likely that even though Mums big moan at the moment is being so far away, if they were nearer there would just be something else. She's like that.

So maybe we just need to try and make the best of things for now. If her decline continues at this rate it'll only be a couple of years and she'll probably have to move into some kind of residential care.

God, it's all so depressing though isn't it?

whataboutbob Thu 17-Mar-16 21:22:40

FWIW that's what I did- kept Dad in his own home till it was unmanageable. You know your parents best, I just knew Dad would not have coped with a move and the strain would not have been worth it. I think events have proved me right.

Needmoresleep Fri 18-Mar-16 09:17:43

Hi, I faced similar three years ago, though my mother was widowed. I live in London and my mother is two and a half hours away. DB is "busy" and so is not able to do much.

I have sort of fumbled my way to a solution.

1. She stayed where she is. She lives on Costa Geriatrica where the variety and quality of care provision is far better than it would be in London, and cheaper. Networks matter less now she no longer really remembers who people are, but they still exist.

2. Sheltered housing has been the solution, or rather very sheltered in my mother's case. The really good thing is that you can ignore it if you don't need it, but as problems increase she has access to everything and we are able to buy in extra care. And, once you have bought the property, it is far cheaper than a home would be. There are quite a lot of couples, where one is more disabled than the other. The restaurant, coffee lounge and activities, many run by residents themselves, mean company and support for the more able partner.

3. Day trips got me down, especially the days when I struggled to get into or out of London, so we ended up buying a holiday flat. We use it when it is not let, which gives us a chance to explore nearby countryside. DH has decided to follow the local football team so is happy to join me. Being able to make a long weekend when she has an appointment makes it an awful lot nicer, plus it gives me a better chance to have "quality time" with her. Lettings, especially during the summer holidays cover our outgoings, and some of the mortgage. An alternative would be to negotiate an off season discount with a local small hotel, b&b or holiday chalet.

4. DM had a fall so I needed to move her fast, made possible by us remortgaging and her then paying us back. The joy was that initially I only moved a minimum, and slowly added a few items of significance. Oddly the hoarding then stopped, perhaps, I think, because she no longer drives so has to carry everything back. It took three months to then clear her stuff. I cheated a little by packing anything she might ask for (as in anything she might think had been stolen) in large plastic containers and piled them up in her store cupboard.

Rosa Fri 18-Mar-16 09:26:01

You have to start getting the wheels in motion NOW regarding your mums dementia . As sorry to be blunt it is going to get worse. She needs regular assessment from the mental health team - they decide if thy come every 6 months or less. They can assess your dads needs as well and then hopefully help. Day centres are not just for old people yes there are some old people but I met people as young as 45/ 50 ( so very sad) . Find out of there are memory clinics as they are usually very good and also can give your dad a couple of hours break. Agree get POA for both parents abnd get your dad to have POA over your mum. If your mum is getting disorientate d then a move maybe will not be a good idea as it helps to stay in familiar sourroundings. Age Concern website is really helpful.

lorelei9 Fri 18-Mar-16 09:36:30

I'm not sure how helpful I can be but didn't want to read and run flowers

I am actually trying to persuade my parents to move because they can't manage their home any more, especially stairs. They are not hoarders but several years of living in the same place mean stuff accumulates etc.

They are not keen at all and I am just accepting that they will have to hit "crisis" before they move.

However I have watched friends etc dealing with older relatives and I've seen a few people who had to move at crisis point. It sounds awful but the fact that there is no option puts a different spin on things. One of them was a hoarder but after he had to go to a care home, he said it was okay for his children to just throw everything out. Prior to that they had tried very hard to talk him into it, but once he could no longer see his stuff, he realised it had to go.

What I'm wondering is, if you are possibly better reaching the crisis point. I am in the stage of persuasion and help and i'm about to drop it because I think I'm wasting valuable energy - my dad is in hospital as I type! - on something I will never talk them into and I will need every scrap of energy to deal with whatever else their old age brings.

I would advise against them going away to your DB by the way - sounds like too much trouble.

I appreciate you are dealing with a dementia case as well but that sounds like even more reason not to go away - DM will be disoriented and confused I guess?

a hand hold is all I can offer really. Sorry not to be more help.

CMOTDibbler Fri 18-Mar-16 09:57:56

My dad cares for my mum who has severe dementia. Dad has decided that they will stay in their own home, and although mum has no friends now, he at least has lots of people that chat to him when he's out on his mobility scooter (which is a saviour in keeping them going). If your dad doesn't want to move, then I don't think its something to be encouraged tbh

Mum absolutely hated the day centre, but they have a lovely private carer who was initially presented as 'giving you a bit of help round the house' and has gradually upped the number of visits and what she does as mum and dad have declined. Now they have someone 6 days a week - one day its a cleaner who cares iyswim, one day they take mum out in the wheelchair (dad can't push her, so its a nice outing), and the others they help out with stuff, help mum have a bath and so on.

It is worth asking for a social services assessment now as it can take a long time for it to happen. Dad is a hoarder of things (not rubbish), and it was the OT that got at least the floor space cleared.

EdithSimcox Sat 19-Mar-16 00:14:28

We have POAs. rosa I don't mean to be obtuse, but what does she need regular assessment from the MH team for? Do you mean so she can get care? They'll do all that privately, so although I'm certainly not against any help from social services I'm not sure if it's needed.
Mum is very proud, and partly in denial and partly fearing the stigma of both the diagnosis and needing help. I don't want to force any tests or assessments on her that can be avoided, she will find it humiliating.
She is adamant that she doesn't want to consider sheltered housing, and won't accept any help until it's unavoidable.
CMOT I like the idea of 'someone to help out a bit' - we may well end up there when dad's energy starts to flag.

Thank you all, it's really helpful reading about different people's experiences and solutions. Anyone got any thoughts on managing the constant tears?

Tartyflette Sat 19-Mar-16 00:37:35

I agree with the poster who said it will only get worse, I'm afraid. Your can either do something now, or as soon as is practical, and have a choice over what you do, or wait for some unfortunate event (illness, accident) to befall either of them which will rob both you and them of some of the options they would have otherwise had.
If money is not a problem a flat in very nice, expensive sheltered accommodation may be the best bet, one that has provision for increasing needs. It will be a lot of work but if you can manage to get them somewhere where they will be both safe and have a measure of independence, with some care facilities, it will be a huge relief to you, and for your father too.
It is very distressing that early-stage Alzheimers can be accompanied by depression, my DM was exactly the same, although I did not really recognise it as depression at the time. My DM was on Aricept for two to three years and I think it certainly slowed down the prgression of the disease. I think, with hindsight, she could have been put on anti-depressants too. She was so sad.
I wish you lots of luck and hope you reach a solution soon.

Tartyflette Sat 19-Mar-16 00:47:53

Sheltered accommodation (upmarket) can be presented as staying in a country house hotel for a bit of a break. I think there are places where you can try it out first.
My mother could be distracted and cheered up by music, and especially singing songs from when she was young. I believe that there are therapists who are looking into music as a way of reaching, and engaging with, people with dementia.
The 'pets as therapy' dogs and cats were also very popular in the nursing home where my DM Lived, they really brought the residents out of themselves. Similarly, visitors who bought babies and toddlers with them -- many residents, mostly women, it must be said, absolutely loved to see young children.

EdithSimcox Sat 19-Mar-16 09:27:05

How would I go about finding sheltered accommodation that's like a country house hotel? I've tried googling but didn't find much. Even if they end up staying put, I'd like to do the research.

Tartyflette Sat 19-Mar-16 10:42:34

I found a couple
And the builder McCarthy and Stone seem to do quite a bit in this field.

CMOTDibbler Sat 19-Mar-16 13:06:55

This is one localish to us which is gorgeous, and this is a more town centre one, and this one is a bit more flats in a complex.

I honestly think you need to start getting them some help now though if your dad is doing everything. How about a cleaner (not an agency one, an independent person) who will at least help him clean, change beds, do laundry, iron etc a couple of times a week so your mum gets used to someone coming to the house. It can be presented as him needing help.
I do online shopping for my dad when he can't get out, and he loves an Ocado delivery, so thats something that can help. He's also a great fan of my Amazon Prime account which deals with most of their other shopping needs!

EdithSimcox Sat 19-Mar-16 18:37:44

Thanks for the links - that'll get me started. They do have a cleaner once a week, which is great, and a gardener. Fortunately Dad was an early computer whizz so is still very competent - he doesn't do supermarket shopping online but he could, and he's certainly pretty good with Amazon/ John Lewis etc when necessary. He buys things like seeds and bits of digital photo tech, software etc too, and travel. He'll be fine with the life admin. Tbh, they shop for food in the village or nearest towns most days. It's something to do.

At the moment mum still fluctuates wildly and can present as completely fine when she thinks she has to. The distress and confusion is kept in check except in front of me and dad. Though it's embarrassing sometimes because she sometimes does things like stage whisper 'well that was rude' eg. When the vicar walked past without saying hello - because he had stopped for a chat only minutes before but she had forgotten! So everyone is aware I think, but not of the extent of it.

Needmoresleep Sat 19-Mar-16 19:39:21

Tartyflette, I dont know how much direct experience you have had with McCarthy and Stone, or alternatives such as Churchill Retirement Living and why you recommend them. My understanding is that their general retirement living provision is unlikely to provide much for someone with dementia. Indeed you might find, as I did when enquiring about a development my mum admired from one of these providers, that there are strict lease provisions, including one which did not allow anyone under a certain age staying over - not even a paid carer. Plus they can terminate the lease of someone needing too much support.

They usually have very limited warden support, and services charges can be surprisingly high, leading to problems with resale. The latter can be spotted by looking at resale values on Rightmove where the value of same types of property in the same area can vary by as much as 400% depending on the quality and cost of management . A management company called Peverel, now renamed First Port, has a particularly poor reputation.

There are also lots of great places, sometimes run by established local charities (Almshouses, Abbeyfields etc). The trick is to ask as many people involved in elderly care in your area as possible. Even though they cannot "recommend" people like physios or health visitors will be able to suggest places you might look at.

One I have direct experience of is Strongly recommended.

I am not sure it needs to look like a country house hotel. 24 hour warden, decent sized flats, proximity to shops, helpful staff etc all count for a lot. Dementia is a scary place and the key thing is to feel safe and secure. My mother jokes that they all trot along to the Tesco next door and are perfectly happy. Two decades ago they would have all bumped into each other in Waitrose.

whataboutbob Sat 19-Mar-16 22:57:29

I agree NMS. One of these developments sprung up a 10 minute walk from dad's house but I knew that once dementia got past the mildly beffudled stage there's no way he would have been able to stay there. I think those places are fine for the frail elderly, but not for those with dementia.

Tartyflette Sun 20-Mar-16 00:31:33

Gosh -- I have no ulterior motive, I just googled luxury retirement living, or some such.
I do have experience of an elderly parent with dementia, however.
(If my DF had still been alive when my DM developed Alzheimers, i would have considered a solution like a good quality sheltered flat for them, with support, as it could help keep an elderly couple together.)

Needmoresleep Sun 20-Mar-16 09:35:30

Tartyflette, thats what I sort of assumed. Sorry I was a bit harsh.

There is a problem that might be described as close to misselling where older folk, which large family houses to sell, are sold a vision of elegant "retirement living". Unfortunately old age is often not elegent.

Things that matter are things like 24 hour warden, a restaurant on site if you need it, reception - who can keep a discreet eye on residents, a handyman, a coffee louge and other easy access to the community. Key words are sheltered or very sheltered.

A good and supportive sheltered property should delay entry to a care home, and thus save money even if services charges are fairly high. It is very important that lease restrictions are not such that the property is hard to sell, at a point when a parent might need to sell it. Remember you are still liable for fees even after a parent has moved out or died. It is really worth finding a solicitor who is experienced in this type of lease. (PM me for a suggestion.)

Look out also for big fees payable when you sell a property. Restrictions that mean that someone too disabled can be asked to leave are quite common. This is normal but a lot depends on how such restrictions might be applied. Behaviour amongst people with dementia can be very challenging and impact on the lives of others, and the management will have a legal duty to ensure that someone is safe within their setting. I have been asked to increase the amount of carer support my mum receives, whilst my initial worry would be that she started wandering so she was not considered safe.

And now for some "age-restricted" property porn

The fees on the latter are structured in an interesting way. First the firm takes a cut on any capital increase, then management fees are deferred so only payable on sale. Eg parents are able to spend the children's inheritance without compromising their own life style.

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