Support for anyone with a parent with dementia - drop in for support, a rant, or a cry. All welcome.

[CMOTDibbler]

Welcome to the thread no one wants to be on, but we are all travelling with our loved ones along their journey with dementia.

Osky is your mum getting better? Perhaps you could just have a day off visiting. I know I had to. There is no point in making yourself ill as you will not be able to visit. Any more news on what is going to happen?
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Oh pudcat how are you doing. thanks for answering sounds a more stimulating environment than mine.

Surprisingly wyrd I am doing ok. Have a busy day tomorrow clearing Mum's room, getting medical cert. and then the registrar. The drs is near Mum's home, but then have to go to another town to register. So will have lunch out with son and will be gone all day. Then will be able to wind down a bit til the funeral a fortnight on Friday.
This NH has a lot of dementia residents but they are all encouraged to try activities even those in bed.

There's such a lot to do at such a difficult time, nice you have your son with you for support. Hopefully you can rest a bit after. Take care of yourself.

Hi Pud, so sorry about your mum but you were with her at the end and now she has peace at last. As my mum would say its probably a blessing.

My mum has a chest infection now or it could be all the excess fluid that has gone on to her lungs, whatever it is, its a nasty cough and she is tired, very tired, although not confused.

I didn't go today as my sisters friend went instead, but theycame back early as mum kept telling them to go.

We still havn't seen a doctor, he said he would see us last Tuesday but was on a course, staff nurse told us he would see us Wednesday, but again no show. Mum seemed to be so much better that we didn't pursue this last week.

I got a call from the one home we looked at yesterday, did we still want a nursing bed. I had to decline as mum still not been assessed as to what her needs will be, so we are still on the waiting list.

We are going to look at some more homes just in case we need to be ready when the time comes, if we can summon up the energy.

A week ago we were expecting the worst news, then she improved and now she seems to be getting worse.

Its nearly a 4 hour round trip everyday to the hospital and its so tiring, the atmosphere in the hospital is just draining.

You will have a busy few days but look after yourself.

Hi all I was doing OK til today. This morning collected cert. of death from dr. and cleared Mum's room. This was all OK. Everyone was lovely. Then had a lovely lunch with son before going to next town 30 miles away to register death. Registrar said she couldn't do it. Shock horror. She said the dr who had signed the cert had ticked she had seen Mum after death but put she had last seen her alive 30th Dec more than 14 days ago. I told her that Mum had only been seen last week for a chest infection and that the cert says the dr signing must have seen the deceased either after death or not more than 14 days before. That means one or the other to me. But no she had to ring coroner in next city. Surprise surprise his day off. So now have to wait in for Coroner to ring me tomorrow and give his permission to register and than make another appointment at a different town on Saturday.

First time I have actually heard the phrase "It's more than my job's worth"
Rang funeral director who said he will ring dr and try and see what went wrong.
So more hassel. And does it matter? She was so ill and was 91. Can do without this. Why don't they make things easier for bereaved families?

That's dreadful pudcat how can they be so pedantic. I hope you get some answers quick.

Thats awful Pudcat. I'd put in a complaint when you feel up to it as there must be a better process than this, and in any case you should be treated kindly and professionally.

Pud, thats terrible, as if you don't have enough to deal with without all this extra hassle, it must be so upsetting for you.

another downturn for mum. She's now wandering round more, constantly asking dad 'whats this'. It is driving him insane.

I'm visiting my late great aunts house on Monday, so dad has been giving me instructions on how to load the car He's obsessing about small stuff now.

so difficult CMOT . Hard to know what to do. Would your mum be agreeable to daycare at a CH to give your dad a break? How is your dad physically, the emotional strain makes you tired.

saw mum this morning. She is still saying when the money from her house sale comes thru she wants to get out, get back to normal and go somewhere else. She doesn't like the CH she says she wants to go back to the previous one but everyday there she told me she hated it. They only has a small percentage of dementia residents and the care wasn't as good she seems to think she worked there. I sometimes think maybe I should move her but it's a good home and I feel it would be a really hard to find another one, she would probably dislike it anyway. Has anyone else been here and if so did you try another CH?

Very sorry to hear that CMOT, it must be very difficult for him. Daycare sprung to my mind as well when I read your post... Hope the trip to your late Great Aunt's went ok.

Wyrd, we have similar issue with my Mother. She wants a flat in a gated community apparently. When she heard first sale went through she just said good. I think my Mother will be unhappy where ever she is to be honest. I am not going to see her much as she just get worked up. We have a cash buyer now for house so fingers crossed this one goes though.

Had a call from an electrician who was at CH last week trying to sort her Sky. She was insisting she used to be able to switch channels on the set in her bedroom with a normal TV remote and had lost her two sky remotes. Saturday she made a Carer rung my mobile and said 'there you are, why didn't you answer the other line ' It hadn't rung as the line isn't connected, BT cock up but she hadn't noticed the lack of dialling tone or it not ringing.

wyrd, it took my mum some time to settle, but we were able to dodge the issue by suggesting it was only temporary. "Luckily" my mum had a broken hip, so it was "six months till you get better". By then she was perfectly happy, and even oddly we went past her old flat and she did not even think to look up. The manager of the Court said that most people wanted to go "home" but over time their sense of what "home" was would alter and it might even end up being their childhood home.

Its not easy though. Yo9u want her to be happy, but know if what she is asking for is impractical/unsustainable.

Thanks. It would be impossible for her to be on her own again and I would rather not move her to another home as she will probably feel the same it's just sad when she says she's excited about the money coming so she can go. The manager said the same to me. She said horrible tho it is she will only get worse and forget she doesn't like it.

We had lots of days when Mum said she hated the NH and wanted to go home, but her idea of home was Kent where she lived as a child. She also said that she had no visitors and was bored, but this was because she had forgotten it all. This seems to be something they all go through. I used to tell mu Mum that it was too cold, too rainy, too hot etc to go home.
Now planning the funeral this afternoon. So at long last Mum will soon be "home" with her husband.

thanks pudcat seems to be normal for the condition then. how are you holding up with the plans to sort out?

I am OK wyrd Funeral celebrant has just been. We are just having a very simple cremation, no bible readings - just 1 hymn, the eulogy and a poem.

simple is good . i hope it goes as ok as a funeral can.

Thinking of you Pudcat.

Went to see my Mother earlier. I arrived and after a bit was aware of running water, the kitchen tap wouldn't turn off. Reported it and someone came to look at it . I asked him to deal with a bit of the serving hatch which was hanging down and I've mentioned twice before, he went without dealing with it. Mum says she reported the tap quite a few times, I find it difficult to believe no one noticed.

She started with get me out of here, you got me in here, which I nipped in the bud quickly saying I absolutely did not and would go if she persisted with that. She keeps saying she wants me to be joint Health and Welfare Attorney but I have no intention of doing that and have been notified by Solicitors that it is being registered . We got past all that and ended on a more positive note thank goodness.

Regular meds, food etc has made a massive difference to her. She only repeated herself a couple of times. I came away with a nagging doubt as to whether she is in the right place. There are only 6 people who live semi independently , the other 16 need residential care and she is the youngest one there. She's paying 3k plus a month and doesn't need that level of care at the moment, needs a greater variety of people and I do understand why she is pissed off, and pissed off she is. I don't have any answers to the situation, it is what it is. I notice just after she went in the first time in the summer the CQC had a complaint and did an inspection which I found interesting.

Found it.

It is a service provided by the BBA/BSA to track dormant accounts:

www.mylostaccount.org.uk/service.htm

The death certificate came in a jacket which had a tear off thing you could use to stop junk mail (I cleared 2 skips worth so a bit of a problem for me though only found this when it was too late.) I was pretty ruthless about emailing everyone who sent mail and asking them to stop of send it direct to me. You might also ask for a mail redirect from the post office using the form you get at the post office and the death certificate. .

In terms of clearing the flat I would recommend:

1. go to B&Q and buy some big plastic boxes for photos or anything personal and simply pack it up and leave it for another day to go through. Trying to make decisions about personal mementos is draining and time consuming. It took me several months before I felt about to tackle this, beyond the stuff my mother still has with her.
2. I quickly sorted all the paperwork into piles: banking; tax ; insurance; pensions; etc. bought some lever arch files punched some holes in all the paper and stuffed it into the relevant file. I then sorted through each one evening in front of the TV, treating each topic like a project. (My mother had got into the habit of changing utility supplier every month or two so sorting out who she was with was quite complicated.)
3. Then identify someone like a local hospice shop who will take things away, and triage stuff into keep/sell, recycle, bin or have collected. Once I had a couple of rooms empty I was able to use these for the different categories. The lovely hospice people came with a van and simply took stuff without looking through it or questioning it.

Looking back much of the problem was how daunted I felt by it all. My cousin claims he still had not not tackled his dad's flat a year on. A deadline is not a bad thing, and it is good to have it done.

I hope your DH continues being nice to you....

Hello everyone and thank you for sharing your stories, I've only skimmed through a little so far but can see what everyone is going through.

I am joining the thread because I believe my mum has some kind of dementia, although the psychiatrist is of the view that it is anxiety.

If I explain, I would really appreciate any thoughts from any of you - as I am sure you collectively must have amassed a whole load of information and experience.

She's 82. At the turn of the year she had a sudden decline, described herself as confused, muddle headed, and starting repeating questions, constantly asking what was wrong with her, she was scared. She cannot remember to make a meal (or whether she has had one), cannot remember if she has taken normal medications - checks constantly. Is now often repeating the same question at minute intervals, e.g. "what did the dentist say?" "what am I doing tomorrow?" "what's happened to me?", "does x know about my confused state?". Many more, on a loop. Literally gone from completely independent, driving herself, doing own shopping, seeing friends, doing voluntary work, managing money - to completely dependent, has to have notes left telling her what's happening - who's popping in etc. When I leave in the evening, always asks me what she's "supposed to do now". Can't make shopping list, can't decide what to with herself at all. Can't follow a book or do anything except tolerate the TV a little. Has become very bound by routines, wants the same tea every evening (doesn't eat well). Constantly gets up to check the notes / her diary (which is now pretty empty).

So I am spending about 3 hours a day with her, split across 2 or 3 visits. Occasionally she will have a visit / trip out with a friend. Can go out for lunch with me / friend and enjoys that.

So, she has notes on her medical record that she has had anxiety in the past - earliest recorded is 1955. Has taken anti-depressants for years - clinical depression is well controlled. GP and then psychiatrist (finally got a referral this week) are saying this is a major anxiety attack causing the confusion and memory loss. In the psychiatrist appointment yesterday he asked her a lot of really leading questions "so have you always felt a little bit anxious? etc, to which she unsurprisingly agreed - she was being compliant and doing her best to hold it together for the appointment (she asked 3 times on the way there where were we going...)

But I maintain the little bit of anxiety she shows (asking what has happened to her etc) is caused BY the confusion and memory loss. i.e the other way around. She really doesn't have many symptoms of anxiety at all. So she has been given very low dose anxiety meds, started this morning, felt faint and sick so they've said to stop them. When I called the psychiatrist about the meds "reaction" (I'm not convinced it was one but she was shaking uncontrollably this afternoon so I felt I had to call them - he said he didn't think was the meds either, as too late in the day after taking them to have this reaction), I told him I felt this really was something like a sudden onset vascular dementia (or other type, I don't know). He maintains because it's sudden its not dementia. But has agreed that I can get an urgent MRI scan privately - he has referred for NHS CT anyway, but that will take weeks. He seems to have listened to me today, but seems to be appeasing me with this scan - really does not believe there is an organic cause.

I am absolutely shattered by all of this - suddenly added an extra 20 hours a week to an already busy life. I'm freelance so have been able to fit in some daytime visits. But I have to be away for work next week Sun to Fri, so she's getting really worried about that - my husband and late teen boys will take over the routines, but she's become so dependent on me. I agree she is anxious, but really really believe it's caused by the confusion. She says - when we have gone through the loop of what the consultant thinks it is - "what have I got to be anxious about?"

So, does anyone have any experience of this type of sudden and catastrophic decline? I know I can't ask for a diagnosis on the internet, that wouldn't be right, but any similar stories would be a really helpful starting point.

Sorry for epic first post, thank you for reading if you have got this far.

Hi Luvvies. That does sound like a massive decline, and something that needs looking into.
If you can afford it, there are private dementia assessment clinics - so rather than just getting an MRI, they'd do all the cognitive tests.

How is everyone else doing?

My dad is whizzing round on his inherited scooter but very breathless and seeing a consultant next Fri , mum is eatingish but confused about everything, and I've been trawling through the papers from my Great Aunts house and found a treasure trove of letters

Hi Luvvies. I agree with CMOT and can see why you are worried. I'd be wanting the cognitive tests too whether it be on the NHS or privately. If going the NHS route she needs a full assessment by a Memory clinic.

Glad you parent's are okish CMOT. Mum a bit of a nightmare with both me and my Brother, we both had bad phone calls yesterday. She predictably hates where she is and I am having doubts I've chosen the right place.,I put having her own flat above everything else and miscalculated the fact that she would want to socialise. There are only 22 residents, she's the youngest and most able.

She grew up on a main high street and loves to watch people going by but at moment can mostly see trees. She's been down here 9 years, never really settled and didn't go out much as a result so doesn't have many established places she used to go. I think the CH are finding her difficult.

Long and short of it is we have found a CH in a retirement village which also has a Dementia unit and accepts SS fees as a charity so no worries about money running out or having to move her if becomes behaviourally difficult. Lots more facilities eg, shop, coffee shop, restaurant, pool. It's up the road from where I grew up which is 100 miles away but it's a place she calls home as spent many years in the area. She never really has settled down here in the last nine years, I think the Dementia had started by the time she moved down. Trips out at the other CH would be to places she knows and liked.

My Dad is in that city and I will need to start visiting more in the future anyway as he becomes less able to drive with a deteriorating eye condition. My Brither is looking at buying a house there as it's where his main business is. IF that happens, i could stay there for trips up. If not Dad is looking at reorganising his house a bit so there's space . I wouldn't see her anywhere near so often but to be honest visits are a disaster, I had to threaten to walk out last week and haven't been back.

That sounds really lovely, and the sort of thing that would keep what she can do going for as long as possible