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.

I can sort of see their point. Why prolong her unhappiness?

While she was still able to talk and vocalize her wishes, she was saying she just wanted to escape up into the woods to lie down and die. Before she got ill, she saw her mum, and two brothers go down this path, and told me "If I go down that route, let me escape into it, dont call me back but say your goodbyes". She was very clear on this.

We need to let go. I feel devastated though.

I spoke to my dad, and we were of the same mind.

But we wont let them stop the cancer medications. We cant risk her getting further agony from a stroke.

Well done you, then Quint and yes, I do really see your point of view, especially if it is what your mum would want. A hard decision, but the right one for those involved. (((hugs)))

Hello all.

I'm sorry to hear all that Quint they have stopped all mums meds too. But she does not have cancer. She was not really accepting them on a regular enough basis for them to do any good.

Personally I wish there was an option for a big dose of morphine. I've had a day battling for mums anticipatory drugs to be held ready at the CH instead of being in script form at the doctors. What good is that? They need to be readily available- surely that's the point?

Anyway, another day fighting for mum to receive the care she deserves. I managed to sort it with another GP so everything is in place. Just a waiting game now.

Personally I wish there was an option for a big dose of morphine. Sounds awful but I wish for this as well. I love my Mum but hate seeing her as she is - frightened and angry and not understanding.

Thanks everyone for your suggestions and insights. Well, I took dad home today, gp visited (I really rate him, he will do a visit whenever I ask, wish he was my gp ,not the cold fish I happen to have). The home treatment team were quite bullish that Dad's days of living at home are at an end due to safety risks. They strongly advised respite, progressing on probably to full time care and a place at the home the GP had said was good was available. So I packed a case, and we trooped there with bro and 2 persons from the HTT. Dad was amenable enough art first, had a meal and a chat, they assessed his capacity (lacking). However, when it was time for us to leave and him to stay, he got very very agitated, verbally aggressive and demanded to be brought home. The manager said they would not be able to cope with him, and so we all went back to dad's home. Sobering talk in the car about DOL, psyche wards, restraints etc being the next likely stop on this road. It never ends, but I did make it clear I cannot have my life hijacked and will not be Dad's carer. The HTT totally accepts this.

May I join? Dad has dementia. He is still living alone but should really be in care but he won't go. He wants to die at home,it is the last thing he has any control over. He is still managing to wash and microwave meals for himself and the house is in reasonable order,but he can't go out and is terribly co fused and terribly frail. He just repeats things over and over and wants to die. He really isn't safe at home on his own but he won't have any help other than what the family can do and all my siblings live away from here.

Dementedma - sounds like my MIL. Just wants to be at home, can't see why everyone is trying to foist carers on her etc. Will post more in the morning, but you have my sympathy. We have to accept that now, we do know better than our parents.

Welcome Dementedma and sorry your family are going through this.

Quint and Bob it sounds like you've both had pretty horrendous days. Quint I can only imagine how you are feeling. My Mother has made it clear she would want what you have decided to do. I would do the same in your position, keep the cancer meds.

Bob I'm sorry it ended as it did. It is good though that everyone is accepting you won't be his carer. Did the HTT think there are any other places that might be able to cope ? I noticed a fair difference in attitude between places as to whether they can cope with aggressive behaviour.
I visited Mum at teatime as some of her furniture was going out to her. It didn't go well and she is increasingly talking about running away or taking an overdose and paranoia still very high. My mantra is 'she is safe'.

There was one slightly lighter moment - her outrage that I would not take home her dirty knickers to wash them!

I laughed at your last sentence Wynken. Sometimes we do have to see the funnier side. I was going to see Mum again today but I am crying off til her 91st birthday on Friday. My sister went yesterday (first time since that dreadful have a go at me visit) and was a lot better when she got there. She was up and in her bed chair and had had her hair done. She has refused this for a long time.

Sister said she was happy but all of a sudden changed. Mum started getting nasty. She reckoned that I had been in the morning and had abandoned her. I last went on Sunday. She called me all the names under the sun, (usually she often doesn't know who we are), and when my sister tried to calm her she said that she doesn't want to live any more and she is going to stop eating and drinking.

She has only been eating a few tiny mouthfuls most days anyway - some days not at all. My sister got the carers to come and said they were wonderful with her and sister came home as she was making Mum worse.

I am so tired that I can't cope with this today so will just go Friday. If Mum is back in the lounge after her infections she will have company any way. I will just have to try and not feel bad about it.

I'm sorry Pudcat, that must be hard to deal with. Personally I think self preservation is vital and it is sometimes necessary to take time out. I'm planning not to see my Mother for a bit as I think seeing me brings up the why am I here questions all over again with me having to run over what the SW said over and over. Then she says if she thought she had to stay forever she would take tablets. Distraction works but only up to a point.

Hair washing a big issue with us too. She was saying yesterday how she hates it how they (everything is 'they') control her and try to get her to wash her hair. I said well you do need to wash it at least once a week. 'Once a week, you must be mad' was the reply, at which point I had to breath deeply and opted for 'doesn't your orchid look lovely' . Can't get my teenager out of the bathroom or my Mother in it, not what I was expecting !

We had a surprise today.

After appearing to be at deaths door for the last few days, mum was sitting up, bright and smiling, looking at cards and able to speak. The nurse said she doesn't know what's going on or where mum has got her burst of energy from. I think I do. It is her birthday tomorrow and my brother is arriving from abroad ( the golden child!)

I'm sure she has registered this. I'm glad that it has perked her up but I fear it is a flash in the pan, in fact, I am quite worried that she was so lucid. I have heard about a few hours of lucidity before a big crash. Maybe I am being silly, I don't know. It's a roller coaster, for sure.

4 weeks now without a mouthful of food and still only 10ml - 50ml of fluid. It can't sustain her much longer.

I know what you mean about the lucidity before a crash Downton. Unfortunatly, it seems to be how my mums dementia progresses as she'll be great for a few days, and then, blam, another chunk of function gone.

I hope your mum has a good birthday so you get to make some happy memories.

Wynken - I think thats a v good idea to stay away a bit. Would your mum accept dry shampoo? Touch of Silver do a good one that also keeps white hair white.

Hope everyone else is doing OK, and welcome to those joining for the first time

Another Brother who is a Golden Child then Downton, there seem to be a fair few around. I also get why you are nervous. Hope she has a good birthday tomorrow.

Tried dry shampoo CMOT and Hair colour is another issue. She isn't happy about the hairdresser in the CH and is going to ask me to take her to a salon so she can have her hair dyed. However she has for now forgotten she is going to ask me this which is very handy. I have a great excuse now I am working though.

Found my Grandparent's photo album last night which I didn't know existed. Germany in the 30s and 40s, very interesting.

These flashes of lucidity and rallying round again after being near the end must be one of the possible symptoms of this dreadful illness. I have lost count of the nights i have not slept properly because i thought the end was near, only to find her bright and breezy the next day. I remember this happening last year in particular on her 90th birthday. Mum was in hospital. I took cards and flowers etc. She did not know me and was so sleepy and more or less comotose. I was so worried that my son drove me back there at night (I can't drive long distances at night) only to find her sitting up in bed reading the paper. She was sent back to the CH the next day. But a fortnight later she was back in again, even worse. Then discharged but sent back again til May when she went into this NH.

Well we have got through this year and she will be 91 on Friday. Wonder if she will know this year.

So Happy Birthday to your Mum Downton.

Yup. Flying in from abroad on his once A year, fleeting visit. Bitter? Me? I should add, he has no wife, no family/DCs. He just has A LIFE.

I virtually told him he had better come if he wanted to see mum before she died, on advice of the nurse I might add. And now she's sitting up smiling, all twinkly eyed. It was lovely to see her like that, don't get me wrong. But he has no idea of the stress involved with mums care. Rant over. I will, of course, be nice.

Thanks pudcat she will be 86 and past the dreaded 85 which seems to herald the end for most of my relatives.

Happy birthday to your mum for Friday too!

It's strange isn't , Dad sometimes has a flash of being the dear Dad that I remember , then he's the sleepy thing lying in a bed .

His wife ( 2nd wife , only a bit older than me ) is the one he responds to really , he will take drinks from her , and me sometimes . He really enjoyed a tub of vanilla icecream I gave him the other day . He mimed licking a lolly , then licked his fingers to get the last bits !

Nursing homes are being mentioned for the next stage , but he has a cough at the moment , he is on and off a drip for fluids too , and peg feeding has been mentioned .

The registrar we spoke to the first week said they didn't do alternative feeding , as it was so emotive . Force feeding in other words .

I don't know what to think about it .
Eating ( or not ) is about the only thing Dad has control of now , but if he's not eating , he's going to starve to death .
But is peg feeding just prolonging his life artificially ?
Who knows .

I'm pleased I found this thread , good to know there's others in the same situation .

Please think very carefully about PEG feeding. It is not ideal for those with dementia.

My mum has taken control of her eating. She just refuses and is, in fact, starving to death. But that isn't as grim as it sounds. She has no hunger, or thirst. The NH have the drugs to deal with the issues that may arise from this- or she may just slip away ( I hope) we are very close to the end now.

I really don't like the idea of peg feeding . I feel it's against his best interests and wishes , but it's his Wife or the medical team who will have to have the final say .

I think I'll offer to go and help feed him at lunchtime , he might respond better to one of us , rather than the nurse / auxiliary

I have not heard of PEG feeding and looked it up. I wish I hadn't. I can't think of anything worse to inflict on my Mum. It is only my opinion but I do not see the point of prolonging a miserable existance by feeding like this. My Mum is going through a bout of refusing food and drink again. This goes in fits and starts.
How old is your Dad Chlorinella ? Sometimes we want life prolonged for us because we cannot bear to think of our Mums and Dads dying. Like Downton I just want my Mum to slip away in her sleep.

pudcat Dad is 79 . My Mum died 12 years ago , aged only 61 . Dad remarried about 5 years ago , 2nd wife is 20 years younger .
I am like you , just want him to slip away peacefully , maintaining as much dignity as possible

I can't see any health pro advising PEG feeding.

Have they given your Dad the supplements? Fortisip or Calogen- like milkshakes. These helped mum for a while.

He has fortisip ( likes the apricot best ) and has a thickener in all his drinks

Mum has Fortisip - when she will drink!!!!!!! Mum is not being forced to eat and drink and the NH will not send her to hospital any more to be put on a drip. They will give her palliative care. It amazes me how long anyone can go without food and just tiny sips of liquid.

if your dad likes ice cream Chlorinella, then I'd take him as many as possible. I reckon my mum is only alive because of icecream - when nothing else will be accepted, she still eats that and the dr said that it was a great food as full of protein, fat and sugar, and solid enough to swallow but melts easily so no problem in sticking