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How the heck am I going to do this???

(24 Posts)
Justneedsomeinfo Wed 04-Jul-18 12:41:32

My mum has Alzheimer's and vascular dementia diagnsed only a few months ago. Although we have known things haven't been right for 12-18 months or so.
Due to a problem with her mobility which took hold a few weeks ago we have had to put carers in 3x per day. Prior to that even with dementia Mum was still able to walk to local shops and back and visit me and my siblings. She has deteriorated rapidly in the last month and as she hasn't been at home 3 times when carers due to visit they are now saying it's time to consider residential care. How the heck do I explain this to my mum ? She was a strong, opinionated and very independent woman this will not be easy. Any suggestions from people who have experienced this?

MiddlingMum Wed 04-Jul-18 12:58:31

Sympathies Just, it can be really hard. Sometimes dementia happens at a fairly slow rate and sometimes there can be a progression in a short period of time.

I think it's usual for elderly people to hate the care home at first. I certainly found this with my aunt, but with sensitive and patient staff she loved it after about 3 weeks and then couldn't remember any other home. When I showed her photos of her house - where she'd lived for over 50 years - she said "Have I ever been there?"

You might like to try the idea of just saying it's for a visit, and hope that she settles in enough to not want to go home, or forgets that she used to live somewhere else.

Dementia is a hard and emotional road for families - don't forget to take good care of yourself as well as your mother flowers

roseblossom75 Wed 04-Jul-18 13:08:25

It is heartbreaking.
Not the same situation but I am in the process of placing my 19 year old son in residential care.
He has the mind of a baby, no speech and due to the level of care he needs (two carers when out in the community) and the fact I have three younger children at home (youngest has a different unrelated disability) I just can't realistically be my eldest son's carer (also single parent).
My son has days when he just looks right through me as though he doesn't know me.
I know it's hard but you are doing all you can.
Adult residential care is something I am really struggling with as I just keep thinking of "what might have been" and seeing young men of his age out here in the big wide world living their lives to the full.
I don't resent them. I just wish he could be right there with them.

FawnDrench Wed 04-Jul-18 15:11:32

Would she listen to her GP if they advised it? A third (independent) party to suggest the move would be preferable - someone your mum respects and would listen to.

Then you wouldn't have to be the "bad" daughter and could remain supportive but sympathetic while organising everything in the background to try to ensure as smooth a transition as possible.

Whatever scenario is not ideal I know but hopefully you will get some well-deserved support with this.

Justneedsomeinfo Wed 04-Jul-18 18:57:41

Thank you for your replies.

@MiddlingMum - yes it seems to have taken hold this past month or so, it's very sad to see. I can't even say my mum is 'elderly' in these days as she's only late 60's.

@FawnDrench- yes I hope that if it is suggested by a 3rd party she would be more likely to listen.

We have had a chat with the care agency today and they are going to monitor her wandering. She currently has an infection and they have advised this could potentially have made her prone to wander out more.

We are also going to speak to social services but her caseworker is on leave until the week after next.

I would definitely try middlingmum's suggestion of saying it's for a visit and that she goes on to like it. There's part of me that thinks it would perhaps be good for her as in the last 3 months she has pretty much stopped all her social activities so at least she would have some company.

Justneedsomeinfo Wed 04-Jul-18 19:02:27

@roseblossom75 - I am so sorry for your situation. I don't think I have any words that would make this easier for you, but yes you are right we are doing all we can for our loved ones with their best interests at heart. You're right it really is heartbreaking.

Sending you lots of hugs keep strong flowers

MiddlingMum Wed 04-Jul-18 20:34:37

It's really hard, but I agree with the idea of getting the GP to suggest it. My aunt would argue with us, but loved her GP and sometimes we said "But Dr Lovely says you need to do this" even if it wasn't actually true.

Roseblossom - that's a very difficult situation. I hope you can resolve it to be the best for everyone. I know someone who has a severely disabled little boy and she says she sometimes looks at other little boys and thinks "What if..."

helpfulperson Wed 04-Jul-18 22:03:33

From experience my advice would be to think in terms of one day at a time. So initially arrange a spell of respite care. And just work on the principal of 'you are staying here tonight'. That will give you a chance to see how she gets on. Obviously it depends on her level of understanding and capacity but don't try and get her to understand that this is for a week or so or a forever change.

cosmiccat Fri 06-Jul-18 16:51:27

It is hard but as others have said I would suggest looking at a respite placement to start with. My mum has vascular dementia is extremely proud and independent and doesn't think there is anything wrong with her. I managed to get her into a residential home for a 'short stay' to recover/recuperate (near to where I leave but a long way from her house). She has now been there 7 months. She became a permanent resident after 2 months. To start with (several months) she talked endlessly about going home and the home were concerned for her safety if she wandered. But now she talks in much vaguer terms about wanting to leave but she can't remember where home was. I think its her way of expressing some frustration at loss of independence rather than a real desire to leave. Typically its so much harder for the carer but I now know my mum is safe, well, entertained and cared for so life is a lot easier. Good luck.

chrissie28 Fri 06-Jul-18 19:16:47

home is a 'safe place' as is 'mum'. You can also tell mum that the doctor has said she is going to recuperate, get stronger and leave it at that
which will save any distress

BalloonDinosaur Fri 06-Jul-18 19:30:56

We had this with my dad's dementia a years ago, and I won't lie, it was difficult. He was wandering more (went missing twice) and kept falling at home and just got to the point that my mum couldn't cope. He was also considerably worse when he had a UTI.

He was taken into emergency residential care after one particularly bad fall (behind a door so they couldn't get to him) and eventually needed nursing care.

It took him a little while to adjust, he would ask when he was coming home, which admittedly was heartbreaking. But he did adjust and it was clear early on that he needed more care than we could give him and it was the right decision.

I agree with PP that she might take it better from a GP or someone similar. I hope you have the support of your siblings/other family.

thanks it's never easy, but ultimately, it sounds like the best thing for her.

Notepad Mon 30-Jul-18 15:14:49

So sorry to hear about your situation - don't think anything I can say could make it better.

My mum is going through a similar thing and it's horrible to watch.

I was reading up on the disease and came across this article which might help you.

healthnotepad.com/ways-to-lower-risk-of-dementia/

Hope this helps smile

Justneedsomeinfo Mon 30-Jul-18 19:14:04

So today we took mum to her new 'home'. My siblings and I managed to explain to her it was short term to help her. Saw the Dr last week.she suggested it to mum also, used the phrase Dr says its a good idea. I don't think she really understood. She went in fine, we sat and had a chat it was fine. It was heart breaking when we left because she thought she was coming with us. I'm heart broken right now. I know it's the right decision for her and her safety and security. That's our main priority. I hope she settles , I'm not expecting it to be overnight.
Thank you all for sharing your experiences and thank you @Notepad I will have a look at the article.

chrissie28 Mon 30-Jul-18 19:45:22

keep visiting - don't lose the connection and she needs to see you as her anchor

DiabolicalMess Mon 30-Jul-18 19:52:42

I'm really sorry to hear this. I lost my nan to vascular dementia and Alzheimer's in February. She had been living with the diseases for around 7 years and had been in residential care for only
a year. We had to make this decision for her own safety. Unfortunately she was very confused by this time and we had to keep explaining to her why she was now living where she was living. It's a really tough thing to go through and I'm sending you positive thoughts because it will be the best thing for her in terms of her being safe. X

Justneedsomeinfo Fri 03-Aug-18 21:42:57

We visited mum for the first time today, although we have rang and spoke to the staff 2-3 times a day since she went in. It went better than I expected but it was still very sad and upsetting. She doesn't understand why she's there. She was astonished to learn she has only been there 4 days, she thought she had been there years. She also said she thought she was coming home today and that we don't want her anymore... it was so sad to hear that and see her sobbing. The home is lovely, the staff are fantastic at one point she even said it was 'Ok'. We left when the staff distracted her, I felt so guilty. I called earlier and they said she had a little cry, but she was now settled and ready for bed. This is a hard process and although I know this is the right decision for her, I miss her.

chrissie28 Sat 04-Aug-18 10:27:14

justneedsomeinfo - it's a good idea to visit as often as you and perhaps create a rota of family members and friends so that she still feels connected

Justneedsomeinfo Sat 04-Aug-18 11:11:51

@chrisse28 we are planning to visit as often as we can. Extended family have said as soon as it's ok they will visit too. She had an appt with the nurse yesterday too for her dementia medication, we were advised to stay away for a week or so to let her settle in, get used to her surroundings and the staff. Staff at the home have advised it's up to us how long we leave. It's really hard making the decision and doing what's best for mum.

chrissie28 Sat 04-Aug-18 12:19:18

@justneedsomeinfo I think it is not good when people are told to stay away - you wouldn't do it with a child in hospital or similar so not a good idea to do it with a vulnerable person with memory loss when a day is likely to seem forever. People need to stay closely connected to the people they love and trust most in the world, not to be taken into a home and left with strangers in my view. People I have worked with have settled much much better when family stay close and connected

Justneedsomeinfo Sat 04-Aug-18 12:35:49

@chrissie28 I think you are right. I have spoken to the home and she has been fine. First goodnight sleep too ! I think she thought she had been dumped and that was that but after seeing us yesterday fingers crossed there is some hope she doesn't feel like that as much now. One of my siblings is going today, I will either go tomorrow or day after. Thank you for your response.

chrissie28 Sat 04-Aug-18 14:56:22

@justneedsomeinfo Great idea - she will settle if she knows that people still care and that she is still part of their lives and that this is just a place where she can get her basic care and not have to worry or be stressed but that she is still very much a part of the family. I run a facebook group which is very supportive - please feel free to join if you would like to www.facebook.com/groups/dementiaconnection/

Rockyrockcake Sun 05-Aug-18 15:03:49

Does you Mum have a very poor memory? When mine went into the home we used to tell her that she would be coming home on Saturday, when the doctor said she was better. She accepted this and She got so used to hearing it that she would repeat it to everyone. “I am going home on Saturday”

When it was time for us to leave we would ask her if she wanted a cup of tea. She always said yes and then we would ask her what cake she wanted. Then as we got up we would say, ‘ just going to get the tea and cake, back in a minute”

Eventually we did not have to do this as she thought she was in her own home. I’ve no idea who she thought all the people were. Sometimes she would be quite rude about them. When I said she must not be unkind, she would reply “it’s my house, I can say what I like”

Justneedsomeinfo Sat 11-Aug-18 19:46:16

Hi thanks everyone for your replies. My mum has settled really well. Somebody has visited every other day and she is now fine with us coming and going, And she isn't expecting to leave with us. She does say 'oh I thought I was going home today... but I'm not yet ' I believe she thinks it everyday but the wonderful staff help her understand that she's not going home. Even though they may have to do it most days. It's been nice to visit and not see her upset.
@Chrissie28 - thank you for the link to your Facebook group, however, I think i must be one of the very few people in the world that doesn't use FB !! shock

chrissie28 Sat 11-Aug-18 21:38:09

@justneedsomeinfo that's wonderful news . No worries about the group - tag me if you need me xx

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