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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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....

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!

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

.

My only comment on the paper is there is a whole load in the woodburner here that's come from Mum's but it's too hot to light it !

PostBellum I think your Mum saying she'll see how the summer goes is encouraging. It seems to be such a slow process to get others to accept the situation. I'm amazed you and Bob aren' at the GP getting your blood pressure checked.

Today's development is brother is arranging 24 hour care and she's seeing consultant at memory clinic on Friday as well as the nurse for med review and capacity assessment. The nurse is familiar with her and her fluctuating capacity, which is definitely does - today she thought she was going I to th flat for two weeks. Left it all for Brother to sort.

Had a good talk with the nurse on the phone. I was saying about the ripple effect and she was telling me about a talk she went to about supporting children who are affected by a family member with Dementia. There's discussion about going into schools and helping. Have also found we have a Dementia Research unit newly opened down here.

whatabout - we could probably fuel a small power station!

M&D get loads of charity letters too and have a vast collection of free charity pens. They have multiple direct debits going out to various charities - fairly small amounts, but still adds up to the best part of £1k a year. I tried to talk to Mum about cancelling them, but was told that things weren't that bad yet.

I nearly burst a blood vessel every time we have to look for something that Mum would like my help with and we have to trawl through the various heaps in the kitchen and then after half an hour of increasingly fretful searching she remembers that she took it up to their bedroom for safe-keeping (where there are more piles of paper)!

As Churchill also said - If you are going to go through hell - keep on going!!!!!!!!!!!!!!!!!

PBB- what is it with our elderly parents and their love of paper in all its forms? I went to visit Dad last week. Needed to meet a builder because his investment flat (which he has forgotten exists)/emo/te/3.gif needs a whole lot of work done, and I am having to get quotes, check I'm not being ripped off etc. Anyway after taking Dad out for lunch (I chose his meal from the menu) visiting the library, bank (the cashiers greet him by name, he's in there most days) I thought I'd spend half an hour tidying his room. Could barely get through the door which was semi jammed with boxes and boxes of random papers: his old PhD work, bills and bank statements some going back to the 1980s, old newspapers, even condolence cards from when mum died in the 90s. And that is after me having done periodic purges. Three or four years ago, before he was diagnosed, I sat down and wrote him a letter about my concerns re the state of his house, and how I feared it was going to become a dangerous place to live in unless he accepted help/ got a cleaner/ started doing some serious cleaning and chucking out. He denied ever receiving the letter. I later found it on his desk, opened. I used to want to scream "why the bloody hell do you need a 2007 copy of the daily mail??" I controlled myself, but nearly tipped over the edge when he tried to prevent me from emptying a dustbin full of used kleenex (he actually lets them dry and re-uses them, and thinks he's being very smart). I just chucked them in the bin bag regardless, and managed not to seriously lose my temper.
So I tidied up the best I could. One of the things that irked me the most were the weasely charity letters "Dear Dr X, you are such a kind person so we know you will not let us throw little Maria back on the streets, she desperately needs this operation" " we are enclosing our gift of 12 pence (wtf???), we know you will faithfully send it back with your donation". I had great joy in bundling up all these begging letters and binning them as soon as I got to the train station.
As Churchill said, keep buggering on.