Please or to access all these features

Dementia and Alzheimer's

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

See all MNHQ comments on this thread

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

474 replies

CMOTDibbler · 02/01/2014 16:13

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

OP posts:
Shenanagins · 30/01/2014 08:47

needmoresleep thankyou, I just needed to get that off my chest last night. Just wish I could be there more for them.

I think its the grandchildren part which is the hardest part at the moment.

pudcat · 30/01/2014 08:48

Rant away. This thread is a safety mechanism for me. I feel I can say things here that I can't in real life without being judged. My Mum cannot now remember her grandchildren, or me sometimes. She never remembers I have visited, but I still go. Dementia is cruel, I dread my future.

Shenanagins · 30/01/2014 09:56

It is a cruel disease. I am quickly realising that its not a sudden on/off switch so those with it do realise what is happening to them. Horrible horrible thing.

Needmoresleep · 30/01/2014 11:04

When you are over the shock, it will be worth sitting down with your mother and siblings and looking at options, first to ensure that your father is able make use of and stretch the capacity he has, but more importantly to help prevent too heavy a burden falling on your mother.

All sorts of options, including a move sheltered housing where your mother would not be the only spouse who is a main carer; a taxi account if your dad had previously done most of the driving: Just Go coach holidays or similar are very tolerant of people with memory problems (and an easy way of having your parents picked up from their home and stay in a hotel somewhere near you!), and and and. If your mother has now previously handled the finances, it might be an idea to suggest a POA or a third party name on the account, which would allow you, with internet banking, to look after this side of things.

The early stages of dementia are very difficult, as your father will be frightened, and trying to deny or fight it. I found my mother's never ending and repeated questions really trying, but understand that she was wanting to make sense of the world around her. She has moved onto a level of acceptance, which is probably why she is less stressed and happier.

As well as the emotional side there are lots of practical problems, but plenty of us working our way through them.

wyrd · 30/01/2014 15:32

Shenanagins- so sorry to hear about your dad it's devastating for all of you. It is possible to get medications to help slow it down if it is diagnosed fairly early. My mum refused to accept there was a problem for too long but they have helped a bit . Hopefully your dad has a good GP who will get the Community Mental Health team in as they can prescribe medication and help with practical and emotional advice.
You can say whatever you want to here, it helps, as we are all dealing with it at various stages.

Shenanagins · 01/02/2014 20:35

Thankyou for your messages of support.

I guess that they are luckier than most as due to where they live they have access to excellent support services with the community health team already having been out.

They did sort out poa a number years ago which does make things easier but mum should change credit card accounts to her being the principle cardholder.

For me at the moment the big issue is that I want to go immediately to see them and talk things through but that really isn't possible. It is the feeling of impotence that is just so hard at the moment but I guess that will pass when the course of the illness gives us bigger problems to deal with.

pudcat · 02/02/2014 17:06

Mum has deteriorated very quickly over night. I decided to visit this morning on spur of moment. I just got there to hear a nurse on phone asking to speak to me. Mum has not eaten or drunk since Thursday. She has refused all meds except morphine patches. She keeps shaking her head away when they try to moisten her lips. Her breathing is shallow and sometimes noisy. Temperature is between 32 and 34. She was sort of asleep all the time I was there. I stayed 5 hours.
The NH cannot tell me how long she will go on for, and they say knowing Mum she might even come round and start eating again. I don't know what I want to happen. I told her I loved her and that my Dad was waiting if she wanted to go.
The NH will ring me if I am needed before tomorrow morning, but knowing my Mum she will probably sitting up in bed as right as rain when I go. This is so cruel, I wish there was something I could do.

CMOTDibbler · 02/02/2014 17:17

I'll be thinking of you Pudcat.

OP posts:
WynkenBlynkenandNod · 02/02/2014 17:44

I will be too Pudcat.

wyrd · 02/02/2014 18:03

so sorry to hear that pudcat, i will be thinking of you too.

whataboutbob · 02/02/2014 19:45

Wishing you strength and a merciful resolution.

Needmoresleep · 02/02/2014 22:32

I hope you get some sleep tonight. My thoughts are with you.

WynkenBlynkenandNod · 04/02/2014 16:56

Pudcat, I hope you are as OK as you can be in the circumstances.

Spoke to CH this morning. They said Mm is certainly no worse and more resigned to staying and they feel acceptance is on the horizon. Considering a few weeks go they felt she would never accept being there, this is huge progress.

whataboutbob · 04/02/2014 17:35

That s great WBN. Let s hope with a bit more time she ll settle well. You certainly deserve some peace of mind.

CMOTDibbler · 04/02/2014 18:02

WBN, thats really good that she's settling.

After her good week, mum has forgotten entirely how to cut anything with a knife, and is refusing to eat. Though entertainingly, she was talking of going on the bus to buy wool. She hasn't done the bus for 3 years, can't walk, and has approx 3 tonnes of wool and 50 million patterns - none of which 'work' Hmm

OP posts:
whataboutbob · 04/02/2014 18:31

How is your Dad coping CMOT?

CMOTDibbler · 04/02/2014 18:36

He's really angry with her again - he just can't understand why she goes from seeming 'well' to the sharp downturn. And then they enter the cycle of her accusing him of moving/losing/doing 'things' (as nothing has a name), and he argues back, so she shouts...

And she put his first ever packet of smoked salmon somewhere, so he wasn't happy!

But on it goes..

How are your dad and brother?

OP posts:
WynkenBlynkenandNod · 04/02/2014 18:37

Thanks. Phone line going in Thursday so that might be end of peace !

Oh dear CMOT Confused Nothing is straight forward with any of this is it...

DH back from his Dad's . He's doing ok as his neighbour does what we've all been doing with our parents. DH suggested she steps back and she looked horrified. Two conversations of 'what plans do you have for the future' resulted in two conversations about the war. And the think you need to give up driving Dad talk was a non starter . Luckily DH thinks he has pretty much stopped. Back to waiting for crisis strategy, we've both given up stressing about it.

whataboutbob · 04/02/2014 19:21

Oh dear CMOT it must be really hard on him. I sometimes think it must be really hard dealing with the well(er) parent's stress. Mum died many years ago, one of the only silver linings is that she s never had to deal with dad s dementia.
Having a last ditch attempt at keeping dad at home with enhanced, 3 times a day care package. He s utterly confused about most things and I know it s only a mater of time before he has to go into care. Bro is not too good. Apathetic, I'm not sure he s taking his meds. He s terrified of dad going into care and being left on his own. Obviously that is going to happen one day, probably before long. Then I have no idea what will happen to brother, will take it one step at a time. I hope he ll go into the residential program his case worker has been trying t talk him into.

whataboutbob · 04/02/2014 19:22

WBN unplug that phone!

WynkenBlynkenandNod · 04/02/2014 20:10

Yes I agree Bob. My parents are separated so I don't have that issue either. I think with your Brother and Dad you are totally right, one step at a time. You have a lot on your plate for one person to deal with Flowers

oskybosky4 · 04/02/2014 20:14

How do you ladies all cope. I am feeling completely stressed and exhausted now visiting hospital every day

wyrd · 04/02/2014 20:15

Wynken-glad your mum is starting to accept her situation it is so stressful trying to help them come to terms with it. Sorry to hear your DH has all the hassle to come with his dad there really isn't anything you can do if he is resisting.
CMOT- Your poor dad can't imagine the stress of living with someone going through this it's hard enough dealing with it and being able to come away.
bob-Again an impossible situation and so stressful for all of you.
There is such a lot going on for everyone, glad we can talk about here.

wyrd · 04/02/2014 20:28

Can I ask you about the care homes your parents are at. I am pleased with the care mum receives but when I am there the other residents are usually sitting down asleep. To be fair most of them are at later stages of dementia an are unable to hold a conversation,some don't talk at all, so are probably incapable of much. They do have a woman with a keyboard come and sing to them once a fortnight and stuff like that but on a daily basis mum says there is nothing to do. She isn't up to reading or doing any crafts tho but she can talk about stuff sometimes.She still wants to leave. I just wondered if it's the same elsewhere. The CH only has residents with dementia.

pudcat · 04/02/2014 21:11

My Mum's NH was good. They have 2 ladies in charge of activities. They play throwing beanbags at skittles, into holes etc. The have a huge hoopla game. They have big balloons to bat back. They do colouring and other arty things. There is music and upper body exercises. Entertainers come in for special occasions. They also have large cards, connect 4, dominoes etc. I have just realised that tomorrow is my last day there as I am going to clear Mum's room. I shall miss going there.