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I'm tired and emotional.....

(57 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 ....?

Nana3 Sat 30-Jul-16 18:44:32

Our family have been on a long journey with dementia. The disease changes as the months and years go by and gets more difficult for those that love them. I'm so sorry jg, I don't know what else to say.
Try to keep her out of hospital if you can, it seems to escalate more quickly there.
My very best wishes to you.

silverlining48 Sat 30-Jul-16 19:15:46

Would definitely agree with nana3, try to keep those with dementia out of hospital if at all possible. Our experience was horrendous.

annsixty Sat 30-Jul-16 19:26:55

I have a small dose of Citalopram every day . I feel I should treble it but don't think GP would agree. If you haven't lived it you have no idea what it is like, and I hope very very sincerely you never do .

Hellomonty Sat 30-Jul-16 19:28:56

Thoughts and prayers with you and your mum. What a difficult time for you all, but how lucky she is to have a daughter showing such love and concern for her. I am sure that, no matter how confused and agitated she may be at times, that love and patience will be felt and appreciated.

annsixty Sat 30-Jul-16 19:55:54

H is now asleep. I will wake him when I am ready to go to bed. I do not know what companionship is any more. Just stating facts and not feeling sorry for myself, I am used to it now and accept it.

Jalima Sat 30-Jul-16 20:32:40

annsixty
It must be like a bereavement in a way, the person you once knew has gone but is physically still there.
It must be so hard flowers

cornergran Sat 30-Jul-16 20:43:00

I'm full of admiration for anyone managing this horrible illness. Sending hugs and a wish for a day without worry.

annsixty Sat 30-Jul-16 20:50:15

Thank you both, for myself I have adjusted and now, just deal with it but I have to admit very honestly at one time I thought there might be a life beyond this . That must sound dreadful and uncaring but realistic for me. However I now face the fact that H could outlive me, he is so fit and well and now I am not.

Jalima Sat 30-Jul-16 21:02:19

It must be a strain, which will take a toll on your health which is not good.

kittylester Sat 30-Jul-16 21:07:34

Oh, ann, maybe you should think about organising more time for you and your own life now. It's important that you keep things going for you. Your situation is so sad from all points of view. Please get more help. You've said that your Dh has said he doesn't need any help but you do and it's not all about him.

Jalima Sat 30-Jul-16 21:17:25

kitty's right, very sensible post.
I do hope you can organise some help and have an occasional break annsixty.

mumofmadboys Sun 31-Jul-16 08:11:02

Annsixty would you consider DH going into a nursing home for 5-7 days once in a while so you can have a short holiday? It would do you good to recharge your batteries.

annsixty Sun 31-Jul-16 08:50:43

I would but he just doesn't think he needs any help at all, he even says he will be fine on his own when I go for my TKR!!!
He thinks apart from having no memory at all, which he accepts , he has no problems.

kittylester Sun 31-Jul-16 09:16:56

Ann, you are maybe going to have to be strong and make dh accept help! flowers

annsixty Sun 31-Jul-16 09:29:30

Sincere apologies jogginggirl for taking over your thread, but it's nice to share our experiences.

morethan2 Sun 31-Jul-16 09:35:10

flowers for you all. My MiL is in the same position so I recognise some of the things you've all said. My heart goes out to you all. I feel I'm neglecting my MiL but I'm torn between her (200miles away) and my terminally ill DiL who has young children. Mum and I are very close. She has confided in me a lot over the years and now she keeps asking for me. Before she became very confused she told me she enjoyed being in my home more than anyone else's. I wished I'd known that at the time. We were the 'poor' relations and I always felt a bit of a failure that we couldn't spoil her as much as others. She was a much better MiL than she was a mother. She still drove me to distraction at times. She always wanted her own way, she was determined and cantankerous. My daughter once described her as eccentric and she's right. She's escaped two or three times from the home (I wasn't surprised,I can read her like a book) but more worrying is she attacked the staff with her stick and they've called the police.! I'm worried they are doing that so they can document her behaviour so they can move her to a more secure unit. She behaving in this way because she's angry. She's stuck in this awful room they won't let her in the garden it's worse than prison. She's so unhappy. I feel it was her very frail state of health and not the dementia that prevents her living alone. The family are continually running too and fro and being called to meetings. How will it end? It's just so sad and we all feel so helpless sad

jogginggirl Sun 31-Jul-16 21:50:20

Thank you all so much for your words of wisdom and sound advice ❤️ I would like to respond to each of you individually but I can't - still many thanks for your input.

I know it has only been a few days but mum is finding it terribly hard to settle. She is leaving her flat often and cannot find her way back - even wandering into someone else's flat the other night! The care team are wonderful and are doing their utmost to help her feel comfortable.

I don't know whether others have experienced this complete and utter bewilderment which becomes so overwhelming that the affected person (my mum) cannot take in even the simplest information. We talked often about this move before it was made and visited the flat probably half a dozen times. Mum was included and made her choices - but of course she then forgot ?

I have been each day (I live about an hour away). Today I met with the care supervisor who advised me that mum needs more care than we first thought - this may be down to her utter confusion or a progression of the dementia - who knows...? I'm pretty sure I have made the right decision to move her but it doesn't make it any easier - I do feel that she needs more care and certainly overnight.... my big fear is that where she is now - they will decide that her care needs are more than they can deal with and I will have to move her again....?

I really don't think I am making good choices/decisions at this time because I am tired, (exhausted) and overwhelmed by the responsibility of it all. Tonight I have my 8-year-old g/d staying and she is a delight and has forced me to think outside the box (she's a wise old girl). Tomorrow I will start again with my mum but tonight my g/d is exactly what I need.....

I send my heartfelt thanks to you all - it's reassuring to know that there are others out there dealing with the same issues. I wish you all well with your individual tasks and I will certainly be posting on here regularly.

Night night xxxx ❤️

morethan2 Sun 31-Jul-16 23:33:29

Night night jogginggirl nip into your granddaughters room and watch her sleep for a few moments it'll lift your spirits a little and hopefully you'll get a fairly decent nights sleep.

janeainsworth Sun 31-Jul-16 23:58:59

jogginggirl you and your mother have my sympathy, I've been on a similar journey sad
Just to echo what silverlining said about music, here's a link to a charity started by Sally Magnusson, after she found that music was the only thing that helped her mother.
Hope it helps you a little too, I wish I'd known about it for my mum. flowers
www.playlistforlife.org.uk/#2946
www.bbc.com/news/uk-scotland-north-east-orkney-shetland-33787628

jogginggirl Mon 01-Aug-16 00:03:18

That brought a smile to my face morethan - thank you. You are right - the simple pleasures certainly lift your spirits - I'm away to DG's room right now ?? xxx

rubylady Mon 01-Aug-16 02:12:00

I do think that is one reason we are sent GC, (if you are lucky enough to see them) to balance dealing with the older generation. It brings back the innocence of life, the charm and loveliness of the young.

It was very overwhelming to have my dad have dementia. Apart from some one here, I was lost at sea with it all, no support from the NHS or anyone in the health care community. I had no idea what would happen, how he would react to things, how his temper would be, anything. He demanded his finances back in his control at Christmas last year, and even though he was an adult, he was behaving like a child, kept cancelling his cards every week etc. But I still had no choice but to let him do his own thing. I can understand that it must feel confusing in more lucid moments when he maybe felt like he was being taken over, but that wasn't my intention at all, just to care and make sure he was being treated right off everyone. There were benefits he could have applied for , DLA for one, as he was terminal, but no one tells you these things until it was too late.

jogging and morethan Would it not make it easier to move your mother and MIL to somewhere nearer to you now? They don't know really where they are and you are both travelling for a good while to go and see them. Maybe it would be easier on you both to find somewhere nearer and then you can get more rest yourselves. I moved my dad to a care home near me, it made it easier on me to be nearer for any emergency. When you are travelling each way for an hour and then visiting, it can be really draining and driving while so tired out isn't good for anyone. Part of all this is making sure that you are looked after too. Are either of you in touch with any dementia society? Or are you being left to just get on with it, like I was?

My heart and thoughts go out to you, it is incredibly difficult to go through this dreadful disease. Me and my dad did it with humour and I hope, still some dignity. He died with cancer in March, thankfully the dementia had not got really bad, which is the only thing I have to be thankful for. But up to then he would get frustrated, tell me he keeps forgetting things and be sad about it. I used to play it down and say that I do that too and then tell him a funny story to cover it up. It's no wonder my DS is going kicking and screaming into adulthood when there is all this responsibility to deal with as a grown up. Take care, all of you. Xxx

jogginggirl Tue 02-Aug-16 00:18:09

Just when I thought it couldn't get more difficult .......

A meeting today at the VSH scheme that my mum has just entered ... the news is that the care company who provide 24/7 care are pulling out in December. Their contract with the local council will terminate on the 15th of that month. The local council are suggesting that full time cover is replaced with domiciliary care which is NOT 24/7....

The deciding factor for this move for my mum was the 24/7 care....
After just 4 days in her new home (and she is struggling) I am now having to think 5 months ahead and the worry and the stress begins all over again.....

I have a very heavy heart tonight ?

morethan2 Tue 02-Aug-16 06:33:21

flowersdeep breath, shoulders back,head up and a big fat ((((((hug))))) because I just can't think of anything to help make things better.

kittylester Tue 02-Aug-16 06:59:55

jg, what a worry for you. (((hugs)))

It took my mum a fair while to settle into the first home we found but we realised quite quickly that it wasn't exactly right for her. If you have followed my posts about my mum, you will know she is a real snob and we convinced her to go into that particular home because it was brand new and looked like a hotel.

With hindsight we should have picked a home which offered much more care and, when we did, mum was much happier.

Have you been given a list of homes that are registered for dementia patients? We found that lots of homes which would cope with residents who got dementia while they are living there it was better for mum when she went into a home specifically for dementia patients.

It's a sad fact that deterioration happens faster than families would like and it is a good idea to look at homes that can look after your mum as the dementia worsens.

I hope the above makes sense. Pm me if it doesn't. I'm only on my first cup of tea. grin

Gononsuch Tue 02-Aug-16 11:23:13

Its sad really, that the way to end ones life with dignity is not allowed. I hope this helps.