I'm Not Coping.

Jinxie4567

Registered User
Feb 11, 2018
15
0
Hello everyone, My mum has been in enhanced residential care for 3 weeks now and is utterly miserable. She was diagnosed with Parkinsons with LewyBody dementia in September 2016 but was fine and coped well. October 2017 she was admitted to hospital as a crisis as she wasn't coping at home becoming increasingly confused... After a failed discharge she was readmitted in November which has resulted her to be where she is now... It is a lovely place she is in and the staff all seem nice but she is miserable and cries every time we go to see her and asks if she can live with my family which is just not possible. I feel incredibly guilty for this as it's what she would have expected of me and has always asked me not to put her in "A Home" I have been the mother to my mum all her life, dealt with all her problems. I am now really struggling to cope with how I feel and see her. After every visit I leave in tears and feel the most awful guilt. I guess what I'm saying is I feel I have given all I can to my mum over the years an I've nothing left to give and feel like walking away. I still have my family at home 22,18 and 15 and my husband who is refusing to go back and visit her because he says she is just selfish!!! He had always been a good son in law prior to this..
Any advice would be much appreciated at this very difficult time.
 

karaokePete

Registered User
Jul 23, 2017
6,568
0
N Ireland
Some people can take a bit longer to settle in their new environment. Have you spoken to the staff to see what she is like when you aren’t there? It could be that she is only so unsettled when you are there and cutting down on the visits for a while to stop raising her expectations and let her settle more would help.
I do believe that there comes a time when we have to remember that selves and family count too and it’s not all about the PWD.
 

canary

Registered User
Feb 25, 2014
25,080
0
South coast
It is always hard once the dementia gets to the stage when it is no longer safe for them to be on their own. I wasnt able to look after my mum in my home either so she had to move to a care home. She too had tried to make me promise not to put her in a care home, fought tooth and nail against going and begged me to let her come and live with her.

Im afraid it is par for the course for the person with dementia to demand to go home to begin with and 3 weeks is nothing at all. It took mum 6 weeks and this is quite quickly - its usually a couple of months or more. Once mum had settled she thrived there. She was eating properly and getting her medication so she was physically better than she had been for ages. her paranoia went, she made friends and joined in the activities and she liked having someone around at all times of the night and day so she wasnt scared any more.

What is your mum like when you are not there? Quite often the PWD is quite happy in the care home, but seeing relatives can trigger this behaviour. If you are upset when you visit you could be inadvertently reinforcing this - I used to find that mums mood mirrored mine, so if I was upset she would be too, but if I was happy she would be. Go in with a bright smile stapled firmly to your face and as soon as you see that she is getting upset distract her - I used to take in little treats for this very purpose. I never found that comforting her made things better, in fact it just used to make it build up and build up, but if I could distract her before it started I could prevent it.

Reasoning with her did nothing either as she was completely unable to understand why she was there and trying to explain made her angry and the whole thing just got worse. I would simply say that I was sorry she was there, but she was convalescing and she could go home when the doctor said - then change the subject. If, despite all of this she got very upset I would take myself "off to the loo" and call over one of the care staff. I also used to visit her in the lounge and not go upstairs to her room until further down the line once she had settled. Being in a public place meant that she had other things to distract her and that I could talk about, without her endlessly mulling over her grievances.

Please dont cry in front of her
as she will find this really distressing and make her frightened. If you feel the mask slipping take yourself "off to the loo"

Dont stay long and dont do long drawn out goodbyes; I didnt say goodbye at all as this would often make her want to come with me. I used to leave my coat and bag in the managers office (other people on here leave them in the car) so there was no visual cue that I was going. I would say I needed to talk to the manager and that I would be "back soon". I also used to time my visits so that it was in the mornings when she was at her best - dont go afternoon/evening because of sundowning - and just before the mid-day meal so that she had something to distract her when I left. If she gets very upset be prepared to cut your visit shorter than you had intended.

Afterwards, remind yourself that she is warm, well fed, cared for and - above all - safe. Perhaps you could plan to do something nice for yourself afterwards. I used to go to a nearby cafe for lunch. Finally, please please ditch the guilt. It is not your fault that her dementia has progressed and she now needs a whole team of people giving 24/7 support.
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
I would say exactly the same as Pete...it really is early days and it is most important to know how she is when you are not there. I’m not just speaking academically, my husband moved into such a home last week. Your mum has been used to you looking after her...it sounds like for a very long time...and now she has to adjust. It is hard for her, but in your own words you ‘have nothing left to give’. You need time to recover, time to spend with your family, time to spend on your relationship with your husband. This is not selfish...it is your life. You have the right to live your life, just as your mother did when she was your age.
You have found a ‘lovely place’ where ‘all the staff seem nice’. Well done! Now give her time to settle and you relax knowing you have done your very best.
Keep posting...let us know how it goes.
 

LadyA

Registered User
Oct 19, 2009
13,730
0
Ireland
Can only agree with the others. My husband, in the first few weeks, would cry and say he "wanted to be with me" when I was visiting, and really cry if he realised I was leaving. I talked to the staff, and they were astonished! It turned out that as soon as I was out of his direct line of sight, he pottered off quite happily! Like @canary I never took a coat or bag in. And I kept visits very short in the first weeks. Around 20 minutes or so. Later, when he was well settled, I would spend all afternoon with him, and would leave when he took a nap.

You have made sure your mum is safe, well cared for, has company and is comfortable. You cannot take away her illness. You really have done the very best that you can, with the cards you've been dealt. Your own family need you too.
 

Jessbow

Registered User
Mar 1, 2013
5,733
0
Midlands
I am afraid I used to tell lies when my Mum used to say the same.
I'd say Yes, she could come home with me, when she was better, when the Dr said it was okay.

I knew that was never going to happen, and of course, as she declined it became less and less likely to happen
 

LadyA

Registered User
Oct 19, 2009
13,730
0
Ireland
I am afraid I used to tell lies when my Mum used to say the same.
I'd say Yes, she could come home with me, when she was better, when the Dr said it was okay.

I knew that was never going to happen, and of course, as she declined it became less and less likely to happen
Oh yes. "The doctors say you must stay here and be looked after until you are back to full strength again. " Or "The doctors will decide when you are strong enough. "
 

Jinxie4567

Registered User
Feb 11, 2018
15
0
Thanks for replying,
"I do believe that there comes a time when we have to remember that selves and family count too and it’s not all about the PWD". I do believe this also, I think it's just going to take time for me to get back on track as it's all been about my mum for so long... I feel I have let myself and my own family down by not being there for them as much...

The staff also think she is very anxious when we're not around, I don't think it's the place I just don't think she would be any different wherever she was right now.
 

Jinxie4567

Registered User
Feb 11, 2018
15
0
Thanks @canary, I would love to think that my mum would settle and eventually be content. Today when I went down she was in her flat and I went in and she just went from one thing to another. How did this happen to her, everything she said was so negative and she was crying all the time. so we went downstairs to the lounge as I felt it was becoming so overwhelming. She didn't want to go as she knows and doesn't behave like this in front of the other residents. Like you I've spent hours trying to comfort her about things but all in vain.
 

Jinxie4567

Registered User
Feb 11, 2018
15
0
Thanks @Amethyst59, for your kind words. I have gave a lot of my time and life to my mum over the years and picked up the mother role from a very young age... I do feel I should have a life and be able to live.she has always expected so much from me and I always found it hard to say no Hopefully in time I will get my life back and she will find some contentment in her new place.