Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

[CMOTDibbler]

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

Need you are so kind in your posts....I have got a feeling though that if we all went and had lunch and then a matinee...we would all end up having a snooze during it !!

Not a good advert for the matinee performance !!!

Just a thought- maybe we could all think about meeting up. I know it could be tricky due to commitments, geography etc. but worth a thought- maybe an afternoon in London or somewhere else that would suit most of us.

I am London !! (ready for anything !)

You're all lovely . Bad phone call with her yesterday but by that time I felt really dizzy a d had to go to bed. I've a couple of phonecalls to make about housing. Problem is we don't want it buy. Flat as reality is she's likely to need to move to a home in a hurry because of the Vascular Dementia. But I suspect being a homeowner will exclude her from a lot.

It's time I stop being available to do things. I'm going to say I'm unwell and can't do them blaming my gallbladder (which may well not be a lie at this rate.) meeting for Health and Welfare POA tomorrow which I will do as we need it. Brother has said he will come in the summer and we'll clear her spare room and garage. Meanwhile I'm supposed to remove stepladder but can't face it as she'll kick off.

Taking it easy today, I'm not going to walk the dog. Cleaner is supposed to be changing her bedclothes today, I shall be cross if she doesn't let her, it's been weeks again. I'm down south, towards south west.

Poor poor you.

The kicking off is awful. Some of the stuff hurled at me is unrepeatable. Dementia brought fear, anxiety and a loss of inhibition.

My advantage perhaps was that I could not just pop round to keep propping things up. So mail redirect stayed, and things done simply because I had travelled 150 miles to do them. Also because of the broken hip, my brother accepted something needed to be done, and so though he repeated back some of her complaints, by and large he left me to it.

Looking back the really important thing was the move. I really hope you can find something suitable. Or someone else has advice on how to impose major changes/decluttering when someone remains in their own home. My guess it may have to involve a health crisis where you have no option but to get in there and sort out both her home and her life.

Good news about your brother coming over. I would be tempted to ask him if you and your husband could take a few days away with him holding the fort. You might even suggest the kids stay to get to know their uncle better. The aim might then be to have a conference with your brother and then you both present an ultimatum to your mother, which would cover the things that need to happen to make your life manageable not just for now but going forward, and enable her to stay safely in her own home for as long as possible.

To support this approach you might ask one of the SS or health professionals which tasks they feel you need to be taking over, managing or supervising.

I have felt guilty about my Panglossian posts. But it is amazing. My mother fought bitterly to retain every inch of what she saw as her independence. But taking away those elements that she did not have the capacity to manage, has transformed her life and given her more independence. Feeling better has increased her self awareness to the extent she can agree that decisions made were the right ones.

The difficult thing about dementia is that there is no recovery. It is bereavement in a thousand steps. The good thing is that if you stand firm and insist, your mother will eventually forget, say, she ever had a step ladder, or used to receive post.

Needsmore - your panglossian wisdom is invaluable. Please keep on sharing. It is such a shame that it has to take a crisis to get these things sorted.

I would dearly love to sort my parents out, but Mum will not have it. She is desperately clinging on to their dream of 35 years ago (the crumbling farm) and can't see that they would have a better quality of life & more independence if they were somewhere more manageable. I do understand why she feels this way but it is soooooooooooooooooooooooooooo frustrating.

I know that there will be a crisis at some point. Dad will have another bleed in his brain, his dementia will send Mum over the edge, or she will get ill or fall & then it will be bloody crisis management instead of something calm and well thought through that we could do now.

PBB wanders off to bang her head against the brick wall some more.

Lovely idea to meet up, but for me it would be almost impossible at the moment. I work full time, spend weekends "enabling" my parents to stay in the crumbling farm and any time left over is driving the DCs to all their activities and social life, which I am trying hard to maintain for them. Just as well I am old enough to know that this won't last forever but am sad to know it will get alot worse before it gets better. Sigh.

Sounds like everyone needs some and then later x

I have some good news, mothers dla application was granted and also her ESA so she has some money coming in now. This is a weight of my mind !

Now need to sort out renewing her tenancy agreement which runs out shortly.

I am in Essex, :)

And when the crisis comes you may well discover that things were worse than you realised and there will be waves of real anger as you know it did not need to be like that.

What do you want to happen?

My guess is that your mother does not want to move your father. It would in some way be a betrayal of their dream, and a further bereavement. And that you are looking for two solutions. First to help your mother manage whilst your father is alive and then what to do after he has passed away.

My mother, who was 80 at the time, somehow held it together through my dad's terminal cancer, but then had both a major health scare and a marked deterioration of her cognitive functioning. If tiring for us, caring for the elderly infirm must be exhausting for their partners. If you are just clinging on, it is very hard to take a more strategic view.

However eventually, as you say, something will happen which will make it impossible to go on.

There won't be that many local options, so there may be advantage in exploring them now, to enable you to move quickly when your mum starts to waver or the crisis hits. The health visitor or other professionals should be able to provide a steer towards sensible alternatives. You then may need to consider whether you need to sell the farm to buy something else. Or are you and your brother able to access funding. (We ended up extending our mortgage in the short term to be able to provide bridging finance.)

To be honest I was completely unable to have the "what next" conversation with my mum. However if my dad had not had a fatal stroke I think my mother was getting close to a point when she would have been willing to consider respite or hospice care for my dad.

In the short term is there any scope for tenants? A young couple from the village perhaps. Rural accommodation is always hard to find. An agreed schedule of labour instead of rent? Though like au pairs the right person is wonderful, the wrong one a nightmare.

After my father died my mother was still unable to give up their dream flat, even though it meant she was very isolated. I wish I had worked harder to look at alternatives with her. One advantage of eventually buying a sheltered flat was that there was a level of marketing aimed at her. She was invited for lunch with a group of other residents, shown round by staff, and the experienced manager was able to talk through the benefits. Each time she went she left enthused. (Then, obviously, she forgot!) If the next step is likely to be something private then worth visiting early. Half the sales work will be done for you, she will be able to see the alternative on a practical level. Who knows, she may then see that warden support etc, would allow your dad to stay with her longer, rather than having to go to a hospice or hospital.

Needmore, my Dad also has advanced/terminal cancer which is busy metastasising (sp?) all over his body - which I had forgotten in my previous whine. If the bleeds in his brain don't get him, the cancer prognosis is about 2 years.

In my ideal world, we would get a carer to come and live in with Mum and Dad now. The carer would lift the burden off Mum, who is 79 and would let the rest of us stop worrying quite so acutely about them being all alone in the middle of bloody nowhere. With this in place, we could then go about calmly finding a smaller house in the local village for them both to live in. It is going to take about 6 months to clear the farm house & outbuildings of the 35 years of crap that have accumulated (think at least 2 insurance write-off cars, farm machinery, two broken boats and furniture from the houses of 2 dead relatives just to be starting with), plus give notice to the people that rent the fields for grazing. At some point Dad will have to go into a hospice, back into hospital or will die - but at least Mum wouldn't then be on her own in this crumbling place in the middle of nowhere.

I'm resigned to it being a health crisis. I can't get her into Extra Care Housing rentals as she has a house. Don't want to buy a flat as would then have to sell it to fund care home fees and I think she'll end up needing to go at short notice. My only hope is Abbeyfields who are ringing later.

There is no way in a million years my brother will step up to uncle duties. I'm not totally convinced he'll declutter but think he probably will. Just been to see another Home, that was very depressing. Posh expensive one this afternoon.

I love your posts Needsmoresleep. They give me hope I may just emerge from this with a modicum of sanity remaining.

My father had a brain tumour with about a year long prognosis. My mum started wavering when my dad suddenly started to fall, and she could not lift him. I think then I could have got her to look at support, and indeed had her agreement that I attend the next health visitor visit. Then two days later he had a bleed into his brain.

Trouble for me was that having failed to get support in place, or agreement to a move, during that crisis, I had to wait for her own crisis. The farm sounds like a nightmare. The only consolation is that you should help others facing hoarding/accumulation nightmares feel better. You clearly don't want your mother there on her own.

One aspect of all of this is that we end up coping with decisions our parents have made. At the end of the day though, the farm is a decision they made and though you will help if you can, they may have to face the consequences of that decision.

However you are right. There needs to be someone there overnight. Is there anyway you and your brother can try again, armed with advice from SS or health professionals and taking on board likely progression of his illness. On the basis that you are helping her help him.

On house clearance you will find that, depending on how much you want to hang onto, there will be an army of auctioneers, scrap metal merchants, charity shops and house clearance people eager to take things away. My problem was that things were chaotic and I needed to clear to find key documents and jewelry hidden in strange places. Also my mother was unwilling to let go, so to keep her happy, I packed anything of value into a set of large storage boxes now parked in the spare cupboard in her flat.

Would any of the tenants mow the lawn. Could some sheep to graze for a day or two?

Needsmore - thank you & as Wynken said your posts do give hope!

We already have one of the local farmers in to make hay on the basis he can keep what he has made and he'll come back at the end of the summer and make silage.

We also have another small holder grazing sheep in the smaller fields, along with the local stables grazing horses, but the problem is the orchard and garden areas which Mum has spent the last 30 years nurturing & will not let animals graze on. My brother has taken 2 days off work to mow these areas this week - which on the face of it sounds great, but is actually just more "enabling"!!!!!!!

I think another problem is that Mum is slightly bonkers too. She has always been eccentric & stubborn & now has it in her head that they will both only leave the place in boxes. It is a real dilema as to carry on "enabling" this state of mind by being helpful and daughterly or just to stop this & force a more realistic conversation.

Anyhow, enough whining from me. I think like Wynken I am resigned to a crisis forcing the issue. It just makes me angry.

Sorry to bleat on so much - but there are so few other outlets to vent - specially as I don't have a significant other.

The stress and the sense of loss and bereavement is bound to send anyone slightly bonkers.

What I failed to spot were early signs of dementia. They are not easy to pick up, though in retrospect I realise that my mother's emotional responses to the situation (including some unhelpful aggression and anger) were probably influenced by the dementia. Later there was further evidence including hoarding, giving up cooking etc, which suggests her memory and ability to stay on top of things had been failing for a while.

If you think there might be a problem, and I assume that there is a list of possible dementia symptoms on the Internet, you should find that good health and SS professionals are alert to the risk of carer failure and so might suggest a quick memory test which could then lead to a referral. Lots of ifs there. However if there is a problem you at least know that your mother's decision making may be impaired, and that your decision making needs to take this on board.

Otherwise I would step back as much as you can, especially from the day to day enabling. Let the grass grow! It could be a long road ahead and you need to preserve your strength.

At least I we get it out on here it is out of us to some extent which has to be better than bottling it up. I now know categorically there is no rented half way house for Mum, it's buying or nothing which just isn't a good idea in her circumstances. I have spoken to some lovely people but they all agree that she falls through a cracking the system. Have told my brother I'm not removing stepladder as she will shout at me and I'm fed up with that.

60 grand, flaming 60 grand a year. It was much nicer though.

Oh my good God Wynken. No wonder some people move into hotels.

It's actually just over 63k a year, times 60 residents . I can't help feeling this is the one the Memory Nurse was trying to subtly warn me against.

Had a long chat with Mum. Her objection to the one which had the little flats were they are on the ground floor. I've explained I've hunted high and low and this is the only option for flats available. Also it has the largest rooms in the main house bit. She has agreed that when (don't hold your breath) it's time for her to move she'll go there, with a view to going into the main bit when needs increasing care. If she gets too aggressive or wanders off then she would need an EMI but I'm not going to stress at this point about that.

It is a Charitable trust that runs it though possibly merging with a larger chain, however the Trust will remain in control. Although not a nursing home it's managed by 3 RGNs who say they will do everything they can to keep people there as long as possible. I've met 2 and they were lovely, no airs and graces and Mum took to the one she met. House could do with a lick of paint in places but I've been told to look beyond that which I'm doing. Residents in the flats get 3 meals a day, cleaning, laundry etc plus access to help 24 hours a day. Health and Welfare POA tomorrow, my list is going down a little bit.

Hats off to you Wynken for managing to move the conversation forward. Knowing what a battle it is, you are a flipping genius.

What's the chance of a little white lie? Flats and spaces in the home are hard to come by so you will need to take one as soon as it becomes available. This then guarantees a place in the main home.

Moving will be awfully stressful for her. The better health she is in the better chance she will be able to go on and establish a new sense of place and a good degree of independence.

Perhaps your brother can help you with this when he is over.

But well done. Its all small steps.

We used a mega-expensive nursing home for convalescent care, largely because the hospital discharged with 2 days notice, no home care plan and straight after an operation. It was hotel like and fab, and the quality of the care and food really helped with her physical recovery, and gave us breathing space to find something permanent. A good use of rainy day money. However longer term the level of care did not promote independence.

Thank you . Tried the white lie and failed with that one. Things are actually getting really busy towards the end of term then we're into the holidays anyway. September it's new school for DS , his birthday, Cub PGL and Mum's 75th. So i'm taking the view I haven't got time to move her for now.

My Brother talked dates he'd be coming back and we've planned a couple of days to clear her garage and spare room plus he's coming to look at the flats/home. It was all going well when I got to school and found sports day is at exact time of Memory Clinic, leavers assembly the afternoon Brother due to come down and look at home, DS breaks up a day earlier than I thought and there might be something going on tha final day. Oh well.

POA lady came and I got a Migraine right in the middle. We've had to put down my cousing in Germany as a person to be noticed as there was no one else so I'm somehow going to have to try explaining that in German. We now need another meeting with my school friend who is down here to come and act as Certificate provider which she's kindly said she'll do.

Expensive one in the same chain Needsmoresleep but one of their specialist Dementia ones. It's on a road that's very hard to turn right onto and l could think of coming out was how annoyed I'd be spending that amount of money and not being able to get out the flaming car park! Think overall there has been good progress this week so am ending the week very tired but feeling like things have been achieved.

Oh my goodness ...what a week you have all had....as usual I have no practical help or advice to give but ... (and hugs ...suusshhh !) to you all and thinking of you.

2 issues were a wake up call for me the other day...

1. I made the big mistake of saying to dad " Oh for goodness sake ...dont you remember...I put it where you told me to ""

Story behind it ....

After our cab trip last week I had his card and while in the kitchen I said dad where do you want me to put your card...he said in his orange bus pass holder and then in agreement I put in in the pineapple shaped letter rack on the shelf in the kitchen (where it is always kept )

2 days ago he suddenly starts asking me where his cab card has gone hence the words above

I spoke to mum ...bla bla //.... He wants it on the shelf "where he can see it "

2. Afew days ago out of the blue he turned to mum and said " where does live now ?" mum looked blank and said who ....he said " oh you know ..we went to their wedding and they came to ours"

Mum replied " I dont know ...that was 50 years ago !!

Mum remembered that they were people they sort of knew from a local pub but not lifelong friends or anything.

So my wake up call was ....this is real ...it is really happening ...

Just for a laugh on the brother bashing bit ....older bro deceided to give mum a print out of Alzheimer's disease ...and it's deterioration rate !!!!!!

Nice one bro ,.....just as I was getting her in to positive mode ..

Another crisis here...

DM went to.pub to have lunch with friend ( taken there by carer, we have just got her to accept carers and this is the second, they stay a week in rotation), and almost immediately blacked out. Again. It is now happening about every 10 days. Ambulance, being kept on over weekend. Possibly a pacemaker being fitted next week, I do hope so.

Every time this happens her short term memory gues and the underlying dementia increases, so the short term memory improves marginally.

As she becomes marginally better / convalesces she becomes cantankerous and then aggressive.

Bit her underlying intellect is still darned good. So the memory tests show she is fine. And she is frustrated.

I was hoping to take her to the proper memory clinic on Tuesday. But we have had to cancel it.

And I too have a 200 mile journey. Was there at short notice yesterday, there again next week.

Sympathy all round.

Sorry, so many typos looks as though I am demented too.and from the hoarding you would say I was !

MrsFredrick...Hope your DM is feeling better now ...Must be very difficult when you have so many miles to travel.

Oh dear MrsF . I am sorry and hope they get to the bottom of what's going on. That must be very stressful for you all.