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

I think a saving grace for me is that mum and dad don't seem to have a paper tidal wave. Dad now intercepts all post and is ruthless with it. Of course theres historical gumph, and dad obsessively collects one thing at a time. So theres thousands of horse brasses, every square inch of wall is covered in pictures and Too Much Furniture. DH has a plan about when we need to clear the house, involving a giant skip and Ch
Mum has realised something about her ability to read as she's started talking about reducing her book collection - she has thousands of them. She can't name a single one now.

This brings back memories. spent 2 months clearing my mums flat and finally reached the back of the spare room cupboard only to find a big carboard box full of key banking and other papers.

I filled the equivalent of a skip with junk mail.

The charity stuff really irritated me. I phoned or emailed each one saying my mother had been diagnosed with dementia and had moved. Could they remove her from their mailing list. It worked.

Things are good though I feel for everyone else. The latest hiccup though is an HMRC letter saying they were aware that my mother had not declared all her bank interest so planned to launch an investigation. Despite me being registered as POA this was sent to my mum who had ignored it. Luckily I had got her to fill out the paperwork to register my accountant as her agent. So he got a copy. Trouble is that though once I reduced the mountain of paperwork to a suitcase full I brought it home. It has been a very easy thing to procrastinate over. Perhaps I should thank HMRC for giving me focus

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I'm just going to have a little rock in the corner and feel sorry for myself if its OK for everyone.

Its grandparents day at school today. A whole half day of concert, activity trails, workshops. Lots of active, loving grandparents there. And on this day, my dads catheter is blocking again, his diabetes has spiralled out of control due to stress, mum is making a downturn and passing out. And though she vaguely knows I have a son, she can't name him. Neither of them have ever been to ds's school and never will now.

The PIL have swanned back from their 4 month holiday and only stern words from dh got them to go to grandparents day. And thats required a lot of faffing. I just want them, for once, to want to do something for or with ds. FGS, he's spent more time with our cleaner than with them.

Oh CMOT that all sounds very crappy.

Hope you can get your Dad back on track again. Do the medics have any idea what keeps blocking his catheter. My Mum is a diabetic and another thing that can trigger it all going horribly wrong is some kind of infection. Would it be worth them checking to see if your Dad has a urinary tract infection? Could be having a knock on effect on his diabetes too?

Glad PILS are going to be there for your DS. Hopefully, he will never know stern words had to be had.

Need - good luck with HMRC!

Poor you. And really sorry to hear of your dads problems as well as your mums continuing decline.

It was my parents who were the absent ones. The in laws have been much more grandchildren oriented. This now means that my mother is less able to gain enjoyment from seeing her grandchildren or hearing about them. The relationship is not there. One piece of learning from all of this is that friends inevitably drop away and hobbies and interests have to be abandoned, family becomes more important. There is sense in investing in family when you can.

My piece of moralising for this morning....

His catheter is blocking from blood clots. He probably gets the clots as he has an autoimmune condition called pemphigius vulgaris that causes blistering on all surfaces.
No infection currently, but his bg is just all over the place and he had his night insulin reduced as he was having hypos, but now he's running very high.

DH told PIL to take ds to McDs after school, so we'll see if they actually spend some time there, or turn up at home at 4. If they are too early I'll still be on my conference call and they might as well have left him in late club

CMOT that sounds awful. So unfair to have to witness other fit, hands- on and helpful grandparents, when your kids' grandparents are requiring the care, not giving it. And of course you have to smile through the day, and not show the other mums your real thoughts, cause they have no idea what you're going through, and it wouldn't do to look bitter. That is one situation that really gets my green monster going.

Oh CMOT that all sucks. I'm not very sure about this concept of Grandparents day at school, I don't think it's a good idea. Mine would be screwed if they had one and would have to take a neighbour. I hope PIL pull their finger out and do it properly.

We've just gone through a phase with DH and his blood sugar like your Dad is having. It was the stress of Mum that was doing it. He's just stabilising now thank goodness. Really hope your Dad does very soon too and catheter gets sorted.

Well, I'm not very sure about it either tbh, but its an independant school and I think a lot of grandparents contribute to the fees, so I guess this is payback in a way. When PIL haven't been around, we don't have anyone else to go either so I'd have taken him out for the afternoon as in reception he spent the afternoon just watching films in a classroom. Last year PIL were 2 hours late for it.

TBH am worried that MIL may have early dementia. She's certainly lost mental agility and is being odder over the last year.

Dads been on the phone trying to sort out his operation date again. Seems like nothing had been done at all, not even a clinic date, and the longer he has the catheter the more likely it is that he'll always have one.

Oh no CMOT, as if you didn't have enough it contend with without worrying about MIL and that is really bad about your Dad's op. it gets to the stage where it seems to be one thing after another.

I guess I can see this Grandparents Day then but that does make it very difficult if you're not well endowed on the GP front. At least this year PIL have actually gone.

I am ashamed to say this Wynken, but I have already said to dh that I cannot be involved with any support for them if this is what is happening. DH has two brothers who live much closer, and neither has a child under 16 - oldest brothers children will both have left home in October and his wife works part time with no other responsibilities. DH is fully on board.

CMOT - don't be ashamed. There has to be a limit somewhere. Men are so much better at limiting themselves than women. We seem to expand our capacity to care & multitask until we need care ourselves!!!!!! So, don't ever feel ashamed that you know you've reached capacity (or probably way surpassed it already).

I'm spectacularly rubbish at doing it myself - but I talk a good talk!

Agree, in the circumstances it's really important your BIL step up. And very good your DH agrees. I am massively pissec off that out of DH's family it is him and his sister who ring his Dad daily. His other two brothers have grown up children (one's about to be a Grandad) yet it's DH with full time job, two children, MIL problems who faithfully rings every night at 6pm.

One thing I have learned this last couple of weeks is to keep going until you crack is not fair on young DC's and it is ok to say I have had enough, I can't do any more. No one benefits by you going under.

At the in laws last weekend I rather rudely gave a monologue about how my mothers crisis could have been avoided if they had set up a POA before my dad died and he had passed some things over to me, if they had considered moving when they were still able, and about the wondes of Aricept andd the value of early diagnosis.

Of course they have not prepared in any way either and indeed are planning building work on their home. They are of an age where some form of health crisis is likely within the next few years. Plus I too spotted a level of 'forgetfulness'.

However I felt quite sympathetic. Old age is miserable. Why not try and put it off by ignoring it. They may be the lucky ones and remain active and independent into their 90s. However the POA would be good and something I plan to do as early as appropriate.

I dont like the idea of Grandparents day. It would be pretty impossible in London. Both my kids did the geography lesson where the class plots where parents and grandparents were born. Less than 25% in both DCs schools have 4 British born grandparents. At least my mum and the in laws are at the other end of motorways rather than on the other side of the world.

Hello everyone, hope you don't mind me butting in.

Please forgive me for not having read through the whole thread yet but I am exhausted.

Sorry, this is quite a long story so please bear with me. My parents are in their mid-60s and have been married for 40+ years. A year ago, they were healthy, vibrant, globe-trotting, sport-playing people. Now, I can barely believe what's happened to them.

In January, my mum was diagnosed with stomach and liver cancers and began a gruelling course of chemotherapy. Dad did a wonderful job of caring for her.

About 6 weeks ago, dad began complaining of a mild cough, loss of appetite and fatigue. We all expressed concern and asked him to a see a Dr but he kept deflecting it and insisting that mum was having a much worse time than he was; which was true. A few weeks ago, mum mentioned that she thought dad's memory wasn't as good as it used to be.

Then, 10 days ago mum became so ill that we had to have her taken to A&E by ambulance. Dad was bewildered and very quiet. In the next few days, he became more and more withdrawn, forgetful and vague. We all thought he was suffering a 'nervous breakdown' for want of a better phrase. However, he has suddenly become even more vacant, confused and forgetful. My brother took him to the GP yesterday, who did several memory and cognition tests, and feels that it is likely Dad has vascular dementia. He's been referred to a memory clinic.

Mum is now doing much better and is being discharged from hospital tomorrow. The husband she had when she was admitted is not the one she is going home to. He was a very intelligent, competent, successful and active man and now he is like a lost child.

The last 10 days have been exhausting and devastating. My mum's illness is terminal; we already knew that. At least she now gets to go home for the remainder of her days. But now our dad is very suddenly not our dad anymore.

Hope you don't mind if I pick your brains for advice; or otherwise just hang around and try to appreciate the positives and the humour that are lurking in the middle of this otherwise giant pile of shite.

My positives for today are that:
-my mum still has her marbles
-dad does not seem to be distressed or suffering, so although we are painfully aware of what is missing, he apparently is not.

• I have a wonderful husband and children and a great brother and SIL and we are all supporting each other as best we can.

Hope everyone's had an ok day today.

But for a negative (I should've got this out of the way first):

Floating around in my head- and which I can't quite bring myself to actually properly think about- is the thought that we could have perhaps minimised some of the damage to both mum and dad...
-if we'd insisted dad got his health concerns addressed earlier
-if we'd given dad more support in his care of mum

(But the health concerns were only minor at that time, and we were all so focused on mum and getting her through the chemo...and we did try to support dad as best we could, but he kept insisting he was managing fine and he seemed so in control...)

Sorry for the stream-of-consciousness style of posting. I'm so strung out.

Welcome. Though that is far from the right expression. You have done a good job in finding positives from what sounds a shocking couple of weeks.

Do ask questions. Between us we seem to have built up quite a range of skills. Plastic penis's?!

Also do vent when you need to. Lows happen and are easier when shared.

Your poor mum as well. Having to worry about your dad. The stress of trying to look after your mum wont be helping him.

Welcome Waterlego, though as NeedMoreSleep says, sorry that you need to come here.

I think the first thing to say is that theres no point worrying about what could have been done. You can't stop vascular dementia, and its very unlikely to have been made worse by caring for your mum.
What does normally happen though is that a couple manage, even when one is in very bad shape physically and the other mentally as they keep each other in rhythm. Take the physically infirm one away, and the other will suddenly seem to take a massive downturn as they have all their coping mechanisms removed.
My grandparents were like this - when my grandfather was admitted in his final days of life, you suddenly saw the real nana who was totally adrift.

waterlego - so sorry you find yourself here.

Hopefully, others will have some more info for you. The more I find out about the various forms of dementia, the more I realise I don't really understand it at all.

My father has vascular dementia, and as far as I know, there is very little there can be done to prevent it. So, please don't beat yourself up about that aspect.

Push for the memory clinic appointment as soon as possible. If you are very worried about him and his deterioration - it might be worth trying to get a brain scan to see if something else is going on.

Thank you; that's really kind.

Ahem...plastic penis's?

Yes, poor mum. My brother and I had a frank conversation with her last night in which we tried to prepare her for how much dad has changed. She was obviously very sad but is amazingly strong for a 5.5 stone lady and she will find positives in this situation, I have no doubt.

There is no way dad can care for mum now (indeed, he can barely care for himself), or vice versa. So my brother and I have a lot of sorting out to do re district nursing team, social services, home care agencies... We'll work it out.

Thank you CMOT and Post. I think the GP told my brother that dad will be getting a brain scan too- I hope so.

It is really very comforting to hear that there was probably nothing much we could do to prevent what has happened.

And CMOT, what you say about couples being able to keep each other in rhythm really makes sense. I think the GP said something similar yesterday.

Really appreciate your warm welcome, thank you.

Hi Waterlego, very sorry you are here in these circumstances. I agree that it does no good worrying about what has/hasn't happened. I've read very often about parents keeping the true reality of their circumstances hidden from their children until a crisis brings it all out in the open.

Before my Mum got to an actual diagnosis she had a panel of blood tests to rule out other things and also urine infections can sometimes cause problems. Did the GP say they would take bloods ? My Mum had a CT scan which showed she had had multiple TIA's but also changes indicating Alzheimers which meant she is considered suitable for some medications (though that hasn't gone well).

Please keep posting a stream of consciousness, it's good to get it out and we're all in the same boat here.

You will have to read back a bit.

The routine seems to be GP referral to memory clinic. 90 minute memory test. Brain scan. Formal diagnosis. Then possible medication. My mum, who in the pattern CMOT described, took a real dip after my dad died has really perked up with thyroxin (thyroid problems affect memory) and Aricept, as well as a move to very sheltered accommodation.

After a very difficult period she is now as happy as she has been since my dad became ill, and with support has resumed a reasonably independent life. Carers are now down to 30 minutes a day.

When your dad gets his diagnosis the doctor should be able to give a prognosis. Some dementia progression will be fast. The psychiatrist suggested my mum should manage a further 15 years. She is mid 80s now! Options and longer term solutions will depend on this. And also how much money there is. The ability to buy care direct and not have to negotiate with Social Services is valuable.

This all takes time. In the short term perhaps worth observing and trying to work out where help is needed. Driving? Shopping? Cooking? Home delivered ready meals and a taxi account may be as useful as a care package.

Hello, can I join too please? I haven't read the whole thread yet but I will.

My fil was diagnosed with vascular dementia 4yrs ago, over the past year he has deteriorated very quickly and the last 3 weeks have been hideous.

He has been increasingly abusive to mil who has been keeping the worst of it from us but 3 weeks ago it all came to a head when he threatened her with a knife and she was so afraid she called the police. He was brought to our house where he stayed for a week but because we have a downstairs bathroom and very steep stairs we had to insist he was placed elsewhere for his own safety.

Cue lots of meetings with the mental health team, social services and admiral nurses about where to place him, no respite home could be found because they refuse to take him because he has a history of aggression. He has been placed in a mental health unit while he is assessed despite everyone agreeing it isn't the right place for him.

Dp and I have visited everyday and he is calm but adamant he is going home but when mil visits he is agitated and aggressive.

Today dp and his sister have had to face the fact that mil is the trigger to his aggression and that it would be unsafe for him to return home.

Sil is no help at all and dp is struggling to cope with the change in his df so I seem to have taken on the role of decision maker and dealing with the professionals.

Poor you and how awful.
It must be very sad for your husband to see his father in such a state, not forgetting the distress his mother must be feeling. I hope they can find somewhere suitable.