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I'm tired and emotional.....

(56 Posts)
jogginggirl Thu 28-Jul-16 23:59:40

..... after a very long day! we moved my mum from her home of 65+ years into very sheltered accommodation (VSH). She has a lovely little flat with her own kitchen, lounge, bedroom and bathroom and we have taken as many things as we can to re-create her original home.

Mum has been very brave about this move although, because she suffers with dementia, it's clear that sometimes she understands and at others she doesn't ?

She was very happy when we left her but later called me to ask "where am I"; "why am I here"; "will I have to stay here for long" ... emotional and heart-wrenching stuff?

My cousin called in to see her a little later and found her very confused but, on leaving, she said that mum was more her old self and seemed a lot more relaxed.

This is possibly the hardest thing I have encountered since my dear dad died nearly 20 years ago....

Please tell me it gets better ....?

rubylady Fri 29-Jul-16 06:00:57

Aw jogging I really do feel for you, and your darling mum. I'm sorry to say but probably not. It is heartbreaking to have to go through. Probably more for you than for her, I suspect. Is she in a place where there are carers? Does she have any meals cooked for her?

My dad was in a place where he had his own flat but went downstairs to the dining room for his lunch, which he loved. They also had social nights and parties, although he was only there for 12 months. He did love it there though, even though he had dementia too. The carers seemed very good with him, he used to joke with them and he enjoyed their company.

Has your mum got plenty of photos of you all around her? Try to let her keep as much of her own things as possible. I tried to buy new things for my dad when he moved, thinking it would cheer him up, but it was the wrong thing to do, and just got him agitated as he wanted his own things around him, even his old sleeping bag over his knees. Whatever makes her happy.

The one thing I learnt about dementia is not what you do for someone but how you leave them feeling. So if you can, try to leave her feeling relaxed, happy as much as possible, even on a phone call. I tried to joke with my dad, get him laughing. But don't feel bad if this doesn't happen for some reason. If there are carers, then phone them a short time later and see if they will check on her, put your mind at rest. I suppose it's a little like checking on a child in school when they are unsettled. It is hard, very hard and will be with you for some time. Don't beat yourself up about it, you are doing your best. She is safe, looked after and you are visiting and phoning. You can't do any more. Look after yourself, take care of you. Treat yourself a little, it is a rough ride to go through. Lots of love and best wishes. Xxx

f77ms Fri 29-Jul-16 06:08:16

Wise words from Ruby . Very sad for you Joggingirl , next time she asks those questions I would just say what you think she wants to hear ie if she asks do I have to stay here long just say "just for a few weeks" etc She will settle down but the more she has familiar people around her the more relaxed she will be. Is she near enough for you to pop in and out ? Hope she settles soon xx

BlueBelle Fri 29-Jul-16 08:24:43

My friend hopefully it will get better but do be prepared it may not
My Mum had to go into residential when she became unsafe to leave with my elderly Dad in her own home It was the most heart breaking decision of my life (i am an only child) and through the next 7 years I went through every emotion you can imagine as she went through every phase of dementia and each was worse than the last She was a fighter which was to her detriment she fought everything and everyone to try and retain what she knew she was losing her brain her understanding her control ...... I visited nearly every day after work and weekends she ended her days with no hearing (refused her hearing aid it used to go flying) cataracts on both eyes no ability to speak bar gobbly di gook, no knowledge of knowing anybody, not even photos incontinent and in her last hours I had to make the decision of no resuscitation. That was four years ago and I still cannot have peace, I think of things I should have done, things I shouldnt have done, i see all my own inadequacies of those years and beat myself up
My only advice is do all you can, she will ask many times when she can go home I used to say just a few more days it was a total lie but she had no sense of time so i hoped it just gave her help at the moment she asked, I still have no idea if I did the right thing or not Sometimes she would be extremely hostile to me other times loving sometimes take no notice and that could all happen in one visit
However the good news is some people never reach the stages my MUm did your Mum may just remain a bit confused and it sounds as if you have others to share the visits with talk to people as much as possible get things off your chest and share as much as you can Good luck from the bottom of my heart.... Rubylady is right you are doing what is best and all you can xx

Maggiemaybe Fri 29-Jul-16 08:59:24

jg, I've no personal experience to offer, but just wanted to say that I'm thinking of you and sending ((hugs)).

You know you've done your very best for your dear mum, now as you always have, and her flat sounds lovely. It'll be a relief for you too to know that she's safe there when you can't be with her. You're a wonderful daughter flowers

Lona Fri 29-Jul-16 09:00:55

jogginggirl My heart goes out to you. You're doing the best you can so try not to beat yourself up. There's no easy answer and it's all very upsetting. Just keep reassuring your mum and giving her lots of love, but look after yourself too. flowers

Luckygirl Fri 29-Jul-16 09:01:13

Many of us have been there.........my Mum was very confused and was in a residential home in the end. I do not think that she was ever quite sure where she was.

The thing to remember is that for someone with advancing dementia, life is of the the moment. The way to approach it is to try and make each moment as good as you can make it. On those occasions when she is asking where she is, a reassuring answer is the one to go for. She is unlikely to remember what you have said.

annsixty Fri 29-Jul-16 09:12:37

Nothing to reassure you, just understanding. I may be in your shoes myself some day only with my H.
My only good thing is that presently his deterioration is very slow but I can't rely on it always being like that. You are doing your very best for her, take some comfort in that.

POGS Fri 29-Jul-16 13:32:39

jogginggirl

Always a very sad and an extremely emotional time when we get to this point with those we love so dearly.

Please accept a hug from me for both yourself and your dear mum. flowers

silverlining48 Fri 29-Jul-16 16:24:29

Like so many others, I have been in your situation with my dear mum who died 3 years ago now after 10 long years with dementia. She had to go into a nursing home and It would be a lie if I said that things improved because they didn't other than she was no longer on her own in her house where she had lived for 55 years, and carers were on hand 24 hours a day, so we were not having to rush over to her to deal with whatever was going on. You will go through all sorts emotions.. visit as often as you can or if not, ensure if possible mum gets a visit a few times a week from someone else, as she gets used to her new surroundings. I felt I needed to visit often, at different times of the day or night, and always was watchful of how staff treated other residents, just to reassure myself. Mum needs to be safe. Good luck and be kind to yourself.

Judthepud2 Fri 29-Jul-16 19:47:38

Luckygirl your comment "life is of the moment" for those with dementia was really useful. I have been trying this with my aunt who is 91 and in a home. As long as I can leave her cheerful after a visit or a phone call it is a good thing. The fact that 5 mins later she has completely forgotten I was there could be distressing if I didn't think like that.
My difficulty is that she continually phones asking to speak to my mother (her only sister) who died 20 years ago. She won't accept that she has gone.

jogginggirl Sat 30-Jul-16 02:02:55

I typed a long reply to all responses to my post and now it seems to have disappeared? It's late and I'm tired, I'll try again tomorrow....

kittylester Sat 30-Jul-16 08:25:18

jg, Ive just seen this and wanted to give you a hug.

From my experience with my mum I think this bit is about the worst time. The confusion can be very frightening for the dementia sufferer if they are still having 'lucid' periods.

As ruby said, photographs can be invaluable and a brilliant source of conversation.as your mum's world shrinks.

My mum is nearing the end and is not giving in but fighting all the way. To see her you would think that she had a really poor quality of life but I think she is happy in the moment and is unaware of her situation.

Mum's psychiatrist told us never to argue with her but also not to tell her lies which is very hard to manage. We found it best not to tell mum that people had died, even if it was 30 years ago, as she became upset all over again. So my father seems to spend all his time at work and mum's parents are on permanent holiday.grin

Keep talking to us - I've had amazing support on here.

kittylester Sat 30-Jul-16 08:42:35

Something I forgot to say is that my brothers and I laughed between us at the things mum said - it helped loads!

Anya Sat 30-Jul-16 08:45:23

You did what you did because you love and care about your mother. So hard a decision.

rosesarered Sat 30-Jul-16 09:08:56

No doubt it was the best decision JG but it's only natural to worry about her.You seem a very caring daughter to me, and your Mother is lucky to have you.?

silverlining48 Sat 30-Jul-16 09:26:54

You were up very late last night/this morning. Hope you got some sleep. I wanted to mention music too is a help, i used to leave mum with a tape of her favourite music on in her room and asked the carers to put music on when they were washing/dressing her. It probably was the thing which helped most as her dementia progressed. I used to hold her hand, do her nails, just sit quietly with her. It is so hard. I cried buckets but on reflection, though it may not get better, we get better at accepting the situation. I feel for you. Just do what you can, be there, love her as she is and as she was, so in future you never have regret. Hope today is marginally better than yesterday. Hugs.

silverlining48 Sat 30-Jul-16 09:34:36

Just want to mention Alzheimers do a memory walk every year, which takes place at venues all over the country. I have done it twice, either walking or as a volunteer helping, and will do so again this year. It is emotional, inspiring, and really quite heartwarming to be with people who have all been involved one way or another with dementia, such a cruel disease. Most walks are end sept/october. Check online for details. It really is a good day out.

Liz46 Sat 30-Jul-16 09:45:17

As kitty says, never argue with someone who has dementia. Just agree with whatever nonsense they say and smile. I had to put my Mum in a residential home after it became too dangerous for her to stay at home. I had to sell her house to pay for her care but she still had a key in her purse.

She used to ask when she was going home. I would ask her if the doctor had said she could go home. I would then ask her if she had the key safe and she would check her purse and find it so I would say 'that's good, you'll be able to get in'. It was a lie but it kept her happier.

It's a dreadful time but you are getting help now jogging girl. Looking after my Mum when she was still in her own home nearly broke up my marriage. In the end my husband, who had been wonderful in helping me, said it was either my Mum or him.

Falconbird Sat 30-Jul-16 10:01:06

This is so hard. flowers My mother had a dementia for six years and I sadly became an expert in how to cope. She was very worried about a picture frame that was broken so I took the picture out. She was then very worried about the frame and the glass. I took it down the corridor and gave it to a Carer to dispose of. However poor mum was a bit paranoid about the Carers so I told her there was a special man who dealt with broken frames and glass. She accepted this with a happy smile. You have to be endlessly patient and creative. Mud died peacfully at 90 and I was so glad I had stayed with her and made her feel better as best I could, that's all any of us can do.

Falconbird Sat 30-Jul-16 10:02:28

Sorry - typo should say mum. Typing too fast - emotional.

kittylester Sat 30-Jul-16 10:14:50

silverlinings, I've just started volunteering for Alzeimer's and am planning on helping on our local walk.

silverlining48 Sat 30-Jul-16 10:27:22

good for you Kittylester. I am looking forward to the walk and also volunteer at a local day centre for people with alzheimers. it took a while until i felt i could cope, but 3 years after my dear mum died, I feel I am ready.

kittylester Sat 30-Jul-16 16:00:35

I am volunteering for the CRISP scheme as friends of around 70 (and younger) have recently become carers and i want to help people like them as much as possible.

silverlining48 Sat 30-Jul-16 17:58:29

I have never heard of the crisp scheme, certainly carers are under an incredible amount of pressure because of the nature of the disease and there is very little support out there for them. Certainly I ended up on medication when I just couldn't cope with things.