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

(475 Posts)
CMOTDibbler Thu 02-Jan-14 16:13:29

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

pudcat Thu 02-Jan-14 19:30:09

Thanks for making us a lovely new thread CMOT. Saw Mum again today. She has another chest infection. So this is probably why she said she was dying on New Years Eve. She was angry with me today because I couldn't take her home with me.

Chlorinella Thu 02-Jan-14 19:40:24

Hallo , I've been reading the last thread , ( theres a lot to get through !)
My father has dementia ( Lewis brody .. Sorry cant remember how to spell it ) and has been in hospital for 4 weeks after suffering yet another bladder infection
A month ago he was pottering around the house , eating , drinking going to the loo , and now he's doubly incontinent , can barely talk and can sip from a beaker , but has to be reminded to swallow .

It's like a bloody nightmare , I can't believe the decline is so quick .

It's a relief to read this ( last ) thread and know we're not alone

WynkenBlynkenandNod Thu 02-Jan-14 20:43:53

A belated Happy New Year to you all. It's been rather a hectic one for me. Monday I went to Mum's to let the Sky man in to pick up the box. He told me my Brother said I'd go out to Mum's with him (load of rubbish). Seems he was worried about Mum accusing him of steaking anything which wax fair enough but I was a bit hacked off how he went about it.

Inevitably he wasn't finished by the time the SW came but it's no bad thing as I know what was said so can refer back to it when talking to Mum. SW told her she hasn't got capacity but as capacity fluctuates she will repeat test in 3 months . That Mum should spend time recuperating and building up her strength as she went home a bit early last time and she doesn't want to set her up to fail. Mum said she'd have to accept it but is thinking about running away.

I walked SW up to the office and she said she won'T be gong home but felt it was kinder to do it this way. She emphasised to Mum it will do her good to go out for coffee with me, we were both saying treat the flat as a base. Also discussed gettjng her things around her. SW is applying for Dols (rather than the CH)so there will be a further capacity assessment as part of the process but SW said with her history it is very unlikely they will find her to have capacity.

SW also arranging the 12 week disregard and after that interest free loan on house to be repaid on sale of it.. I will need to see someone for another financial assessment on Mum's behalf. Also asked again that it is ok to sell Mum's house at this point (she originally said it would be ) as I don't want any nasty surprises. She said yes it's fine, then stopped and checked that I had the finance LPA as she has a lot of people at this point who don't and she has to say no you can't . She said she'd check with her boss if I liked to be 100% and I asked if she would and let me know (am waiting to hear).

The Health and Welfare POA will shortly go in to be registered but isn't relevant according to the situation as my Mother doesn't have capacity and SW have made the decision that she needs residential care, the family are all in agreement and as Mum talking about leaving Dols entered equation which is SW anyway in this particular situation. I have apologised to her for not going onto the a health one with my Brother so far away as don't want to make things harder in the future but she was lovely, said it made no difference to her and is pleased that Brother and I have been able to pull together to act in Mum's Best Interests to get to this position .

Mum is ok but obviously cross about the decision which she thinks is ridiculous. However her anger is at the SW. I have been getting a fair amount of bits into the flat and have the bigger bits of furniture going Tuesday (SW had noticed how attached she is to her sofa so that's going in). Some things she sent back. She is very very paranoid about people stealing her things so everything has had to be labelled with one of those security markers with a light and I am ordering Stikin labels for her things.

This morning she was in bed when I arrived with some stuff but said it was lively to see me. However she wasn't quite herself and a bit wobbly on her feet and asking whether she had mini strokes before. She couldn't open her combination lock and seemed just a little 'off'. Brother and I talked and think she's probably had another TIA, she has been rather wound up about the SW and being told she has to stay.

She complains bitterly about being there but has made a good friend who is going to come and watch horse racing at her flat on Sky (she is the only on with sky there). She's adamant she is going home in April so I keep off the subject and divert with anything I can think of, picture hanging was today's.

Not planning to go until the furniture van goes next Tuesday as am pretty tired and have things going on here this weekend and Monday.I'm starting a temporary job in a week or so which will fit well around school pick up. Nothing exciting but it has the advantage of me being unavailable to sort much of the house. Her cleaner will be doing some shortly. Was updating some friends on a dog walk the other day and one of them had done a lot of clearance for another one there of her FIL's house when her died and has said she will happily take over most of it for me as could do with some extra cash at the moment. We've worked ours an arrangement that my Brother is happy with too.

Brother and I are getting on fine. He was saying today he knows he needs to get to see her whilst she remembers. Whether he manages to get on a plane remains to be seen and I'm well aware is probably unlikely. He has his friends flying out with their toddler shortly. They are lovely people and their visit well timed -he listens to them and they talk sense (his Friend's Mum is a GP and has gone through the Alzheimer's route with her own Mum). I think he is now hugely relieved the decision has been made and has got his head round it being the only one in the circumstances.

So all going in the right direction. Not under any illusions that it will be plain sailing but counselling has helped me with my boundaries and taught me the importance of time out as means of self preservation so I feel on a more secure footing. Am hoping my posts from now on in 2014 will be much much shorter !

WynkenBlynkenandNod Thu 02-Jan-14 20:50:06

Chlorinella, welcome and I'm really sorry to hear about your Dad. It sounds like you've had a really tough few weeks at a difficult time of the year flowers.

flowers to Pudcat too. It's horrible having the anger directed at you.

WynkenBlynkenandNod Mon 06-Jan-14 15:16:58

Quick update. Received email from SW this morning confirming we can sell house at this point as have finance POA.

Hope everyone is ok.

CMOTDibbler Mon 06-Jan-14 15:20:08

Thats great to hear Wynken - you can move forward now.

My oldies are ok atm, though mum is staunchly refusing to wear the new trousers I bought her, and is sticking with the size 18s. The 12's were a little loose, but looked lovely so you can imagine how she looks!

whataboutbob Mon 06-Jan-14 19:56:57

Hi CMOT that does sound familiar! Bought Dad a pair of realistically sized trousers which I put him in when he came to London. Not one incident of falling trousers. Then went to his home on saturday- and it was back on with the benny hill sized trousers, and an embarrassing incident of full frontal flashing, trousers sliding down his legs as we were walking down the street. Fabulous. And couldn't find the new trousers amongst all the rubble in his bedroom (despite shifting about 4 bin bags of rubbish).
Then today, phone call from the transport police, your father is at charing cross, very confused, can you come and pick him up.Luckily I was at home because of kids' inset day. Also, miraculously, he was wearing the good trousers!
Well done wynken. I know I am very close to you in this queue to get our parents re homed. The situation is unsustainable, I have realised it. Tomorrow I have to take unpaid/ carers leave to take Dad back home. Then on Wednesday I need a 1:1 with my boss, i am going to need a couple of weeks unpaid leave at least to research residential care, find a place I think will suit him., maybe even get dad moved. I don't really know but I need to start the process.

WynkenBlynkenandNod Mon 06-Jan-14 20:34:28

Glad your parents are OK CMOT. Can well imagine the trouser scenario !

Very sorry to hear about your day Bob flowers. Glad he had the good trousers on ! Have you got many places in mind to look at ? Mum has ended up somewhere I hasn't heard of before and it was Google that came up trumps followed by personal recommendation when I asked around. I found it helped me to have someone was with me when looking as it was good to discuss after and get another point of view.

whataboutbob Mon 06-Jan-14 20:54:27

Hi Wynken- is your mum not at the place she was before? I have asked the various dementia professionals involved in Dad's care. I find they can be a little cagey about recommending somewhere. Come to think of it a friend from school days said I could ring her mum, who has known various people in CHs in Dad's town, so I think I'll do that. After that I'll just put my walking boots on and systematically go round a few, I guess. I don't think there are that many of them anyway in his town.

PositiveAttitude Mon 06-Jan-14 20:56:45

Thanks for the sparkly new thread. I had been unable to load the last one for a while - laptop is ancient and on its last legs!

I had posted quite some time ago. Things are plodding along here. Mum had a fall just before Christmas, which highlighted a load of issues......but now dad is back to head in the sands and pretending that everything is fine.....until he cant cope again and then I will have a panic call!!

WynkenBlynkenandNod Mon 06-Jan-14 21:08:18

Sorry that wasn't clear, she is, I was thinking back to the summer when I was looking. I also found the professionals cagey though one made a cryptic comment about not being fooled by the trimmings and her Mum had personal experience of that. I think I got the one she was alluding to, they are big on getting editorial in the local paper.

My allotment neighbour's Mum had been in a fair few visiting which was helpful, worth ringing your friend's Mum. Physios or OT's are great for info as often have colleagues who have been into a fair few if you can access them informally, friend of a friend scenario. I found there were far CH's than I realised when I got looking that I had never noticed before.

whataboutbob Mon 06-Jan-14 21:16:40

Thanks wynken that all makes sense.

MiddleAgeMiddleEngland Mon 06-Jan-14 22:12:51

Thank you for the new thread. It's really useful to have somewhere to go and even if I don't have anything to contribute, it's helpful to read everyone else's comments.

QuintessentialShadows Mon 06-Jan-14 22:18:05

Just noticed this new thread. Glad to hear you are progressing Wynken.

Chlorinella - my mum was diagnosed with Levy body dementia 3 years ago. Sorry to hear about your dad. Mum has been in a care home since 6 months after her diagnosis. It really is a rapid decline from pottering about at home and coping (at least slightly) to not being able to live at home. It is a rollercoaster.

pudcat Tue 07-Jan-14 08:00:34

whataboutbob I found that when I was looking for a CH for Mum, I could tell with some straightaway that they were not right. The smell. Also going without an appointment makes sure you see the true home. I met other folk who had been looking round and they told me of a couple not to even bother with. Also looks given by professionals eg ambulance people can tell you a lot when I said about 1 home looking good .

I was lucky to find a good CH which did not smell and looked after the residents well. When it came to Mum needing a NH they helped me to get one in the same group but in a different town. And again we are pleased. Mum is funded and this home was asking for top up fees but because Mum had been in another of the group's homes for 6 years they have waived them.

Hope you find something good for your Dad. Have you looked at the care home web site. I know it does not allow bad reviews but it does tell you of all the homes in your area and links to inspection reports.
http://www.carehome.co.uk/

pudcat Tue 07-Jan-14 08:01:22

www.carehome.co.uk/

AnandaTimeIn Tue 07-Jan-14 09:09:10

You all get a ((hug)) from me.....

Haven't read the thread really but just want to say my DM had it for 7 years. It really is an awful disease....

In the beginning she was really cranky and objected to everything. She regularly was a bitch to DF, so painful to experience. Towards the end she became sweet and let herself be led by others (washing, etc.).
Had to cope with DF dying of cancer during that time as well.

The long goodbye. Yes.

She died 4 days after having a stroke at the beginning of last year. I'm grateful for her release and that she didn't get to wake up from the stroke. Dread to think what state she may have ended up in. Some of the people in the home were in such a sad state.

Wishing you lots of strength to help you deal with it.

AnandaTimeIn Tue 07-Jan-14 09:11:30

Oh god yes, the smell in the CH.

We eventually moved her to another one after DF died (nearer us) which didn't have - that - smell....

CMOTDibbler Tue 07-Jan-14 09:55:53

I think its also important to look at places through your dads eyes - as I've been looking at places, I've noticed that many have lovely grounds. Which aren't secure, so those with dementia can't enjoy them independantly hmm. One I've seen has gardens very obviously designed for wandering so theres twists and turns, lots of benches, different areas with raised veg beds etc - but all within a secure area so people can enjoy it without direct supervision.

Its also important that theres a variety of areas inside so residents aren't forced to sit in the TV area and can be sociable or not as they please.

Def on the smell, and number of staff - are there enough so people are interacting, have time to slowly give cups of tea

pudcat Tue 07-Jan-14 10:03:20

The long goodbye. I agree with this. We thought Mum would only be in the NH a couple of weeks. That was last May. Some days I get home expecting to be woken in the night with a phone call, but the next day Mum has rallied round.

QuintessentialShadows Tue 07-Jan-14 10:29:56

I have had a meeting with mums doctor at the nursing home this morning.

Her doctor (who is on an 8 month placement during a maternity cover) has a philosophy of not prolonging life where there is no chance of improvement and little quality of life. I am sure she is a very efficient doctor, and the politicians must love her budgeting skills, shortening the time patients spend in nursing homes.

She has cut all medication that is not vital for life (so mum still has her cancer meds). The effect is showing as mum has had a very rapid decline since I saw her in September. All medicine relating to stalling the development of the illness, medication related to moods, her psychological state, and her mobility. She wants a rapid progression to end of Life. They are moving into Palliative care, and mum has been given a non-resuscitation order Her illness must now take its natural course. She explained that most alzheimers patients die of infections and pneumonia in particular. If mum develops pneumonia she will be kept comfortable, but not treated with a cure in mind. Once they came to this stage, it will be infection after infection, and there is no point in prolonging this phase.

Philosophically I agree, I can see their point. But this is my mum. And I now need to go inform my dad.

The doctor has asked for my permission to stop the cancer meds. The result of that could mean a stroke, as her blod clots without the medicine. This could leave her disabled, rather than dead.

Fookinell this sort of sucks.

CMOTDibbler Tue 07-Jan-14 11:12:45

Oh Quint, that must have been an awful conversation to have. Strength to you in the conversation with your dad.

PositiveAttitude Tue 07-Jan-14 12:12:43

That sounds awful Quint Was there any opportunity for the Dr to listen to your views and discuss the care plan, or was it just fait accompli? I know I would not be happy with that!
Could you put together a few thoughts and go back to discuss it with her? I understand that most patients do die from infections....but why does she have to hurry her into that path?
I hope you can get it sorted and feel listened to.

pudcat Tue 07-Jan-14 14:59:23

Sounds a bit drastic to remove all meds especially the cancer ones. I am so sorry Quint. Mum is on DNR but they are still treating infections as they crop up and which can be treated without going into hospital. Such as UTI and the chest infection she has now. Why are they hurrying it?

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