I feel I am failing my mum and am very distressed

[seasong]

Hello everyone,

Any words of wisdom or encouragement would be most welcome tonight...as I am taking my mum to care home tomorrow and feel so awful about it. I had promised myself and her that I would never ever do this, and feel I am totally letting her down now. Her AZ was diagnosed a year ago...and is rapidly progressing. The consultant says she is unlucky to have such a quick progression, which has not been helped by either Aricept or Ebixa (she had been taking them both together since diagnosis). She is in moderate stage now (was in early mild stage 6 months ago...and I was the only one then who knew something was wrong with her). She is behaving like an ALZ patient now, the disease is obvious to everyone who sees her, and is verbally abusive to the carers I have been employing to look after her at home. To make it worse, she is also bed bound due to severe osteoarthritis. Every time the carer tries to help with her private hygiene, etc. she screams and shouts with pain...but the words she utters are pure abuse. She apologises later...and is often in a state of a permanent panick attack. Carers have come and gone...I am so worried that if this situation continues with her being at home and not receiving good care...she will develop bed sores, start having breathing difficulties from being in bed all the time, etc. So, after long discussions with myself (I am an only child) and her doctors...I have decided to opt for a care home. My heart is so heavy with this decision...I had never imagined my mum would end up in this situation. But I feel she might be safer there if she gets professional care...and the home carers have been such a disappointment at times.

Any words of wisdom and perspective would be so welcome during this very distressing time.

Many thanks in advance to everyone who will take the time to respond.

Seasong

 

[flossielime]

What else could you do? you tried the care at home - it did not work. You have to move on to the next stage. I totally understand how you feel BUT I cannot see you have any other choice. You made promises to your mum and yourself but these promises were not informed. Unless you have been through it with someon every close you have no idea thow difficult dealing with dementia can be.

 

[CollegeGirl]

Oh seasong, I'm not sure I have words of wisdom, but I do feel that promises like this shouldn't be made, because they can become impossible to keep, and that's probably - in my humble opinion - why you feel you're letting your mum down.

But you're not. You're really, really not. You haven't come to this decision lightly and you are doing it to ensure that your mum gets the very best care possible for her very difficult circumstances and situation.

You're not abandoning her - you will still be around to ensure that all goes as well as it possibly can, and once things are settled you may well find that the time you spend with her is more quality time.

Big hugs for you xx

 

[Solihull]

Seasong, I am sorry to hear your story but as I have said on here before, a care home is not "the end of the world" and is usually the kindest move for you and your loved one. My mum is quiet and although she took a few weeks to settle in I felt there was no choice. If you know in your heart that there is no choice then your decision is the right one. Everyone is different so once you have your mum in the safe hands of the care home, walk away and let the experts take over. You have done all you can. I have a better relationship with my mum now and the guilt is finally fading. Take care.
Sue
X

 

[Miss Polly]

Dear Seasong. I have just been through this myself. Mum's case went to panel on 5th Feb. I took her to a home on 7th Feb. It was all very quick. I had been looking after her for a year but she had become doubly incontinent and her mobility was very poor. Even with carers coming in twice a day it was proving impossible to give Mum the care she needed at home. When I left her that first day she asked me if I was leaving her there. It broke my heart. Since then, each time I have visited her she has been fine. There is always lots going on for her to watch. She's eating well. She's being "feisty" with the personal care but she will never get used to that. When I saw her on Sunday she was wearing someone else's top. I didn't say anything as it was a nice top. Perhaps she will have a whole new wardrobe soon!
That first week was very difficult for me. I couldn't tell anyone because I just broke down. I couldn't get motivated at all. I had to fight the urge to visit every day. However, after visiting her a few times and seeing that she is happy that has had a positive affect on my mood. I too felt I had let Mum down but you can only do what you can do. Don't beat yourself up about it. Prepare to feel wretched for a few days or even weeks. It will get better as most things do. My heart goes out to you and your Mum. Take care.

 

[Solihull]

Miss Polly, I have read your post & it is just the same as I was (even the new wardrobe!) I am six months down the line & yes it does get better.
Love & thoughts,
Sue
X

 

[Sweet]

Try to see the CH in a different way.

I felt my mum had 'joined' a community... And I did too. The positives were mum was never alone, nurses were there to help with dementia conditions. I made friends with them. At the very beginning she went out on trips. Other families visiting their mums/dads became friendly and would often say they had been talking to my mum. I also became friendly with them. I took mum out to local shops in a wheelchair and would sit with her at mealtimes.(I lived locally) We made her room homely with photos. She increasingly wanted to be in her room, which was also ok. She passed away a few weeks ago peacefully and I felt it was the best I could have possibly done for her, I never imagined my mum getting dementia or being in a CH, she's got older sisters in their 90s who are perfectly well but I know I did my best and that's all we can do, it's such a horrible illness.
Sweet

 

[Mums helper]

Dreaded My mum going into residential and thought she would kick off big time, but she settled immediately and was more settled there than she was at home. we were really surprised that she never asked to come home with us. When she was at home she kept asking to go home! I think the memories and flashbacks she had at home were agitating her. She was calm and peaceful at her care home and it was a pleasure to visit. Fingers crossed for you. Never feel guilty as you have done all you can and she needs to be where the experts can help her x


Sent from my iPad using Talking Point

 

[DivingDavey]

My mum went into a care home in October last year, she had rapidly gone down hill since July and my sisters and I were dreading it but felt we had no choice. I too felt guilty and as though I was letting her down, I think this is quite normal, in fact I read a really interesting article by Fiona Phillips which proves it is.

A few months down the line I feel much better about taking the decision and it is now a pleasure to go and visit her. Once the surroundings became familiar to her she very quickly relaxed there, I also think it helps that the staff have become familiar to her too.

You really shouldn't feel as though you are failing your mum, it's clear it isn't a decision you've not made lightly and you are making it in her best interests, hopefully she will settle in quickly.

 

[seasong]

Update - Mum refused to move to Care Home

Hi again everyone,

Firstly, many thanks to all of you who took the time to get back to me following my message yesterday. I felt really encouraged and less alone about the prospect of my mum moving into a CH today. Well, when the time to move her came today...she flatly refused to leave her house, said she was willing to sell it so she could pay for a live-in carer (of course, we have tried all of these options and none has worked...but she cannot recall this), she even asked the paramedics who were going to transfer her whether they knew of someone who could be a carer for her. It was tragic to see her in this state. So, she is still at home with a private carer who is blackmailing me by making unreasonable demands because she knows my bed-bound mum (and I) fully depend on her.

I spoke to her consultant today following what happened. He is very understanding and is suggesting I give her a higher dose of an anti-psychotic drug she is already taking, so next time she is asleep when the transfer takes place. I am very hesitant about this scenario...as I would hate for her to wake up in an unfamiliar place (even if I am beside her) where she has been transferred against her will. I don't think I will be able to live with this...and although I know that going to a CH is in her best interest...I still want her to go willingly. What a mess do I find myself in?

Any thoughts would be very soothing during this awful time and as I am contemplating what to do next.

Warmest wishes to all of you.

 

[Jessbow]

What is the carer doing or saying to make you feel blackmailed? Thats not on.

You might like to remind her who pays her wage.

How understanding is her GP? Would he/she talk to her? Would she go ''until you are a bit better''. We never told my now late mum that is was forever - it was always ''until you are a bit better''. Of course she declined as we expected, and never came home.

I feel for you - its a horrible job, one which none of us ever want to do. Sad thing is, many of our relatives actually enjoy the company once they are there.

 

[DivingDavey]

I'm sorry to read that her move to the CH didn't go ahead, that must be so very difficult for you.

My mother went into a CH straight from a stay in hospital so we thankfully didn't have to take her there from home, so I'm not sure I can offer any useful advice except to say that I know hardly anyone who's loved ones have moved into a CH voluntarily. Maybe you could talk to the staff at the CH to see if they have any ideas, I am sure they will have experience of the situation.

 

[Moonflower]

To be honest, harsh as it sounds if the move is in your mum's best interests I'd go along with the consultant's suggestion. When she wakes up you can be there - and if necessary tell her she was taken unwell and is in a convalescent hospital until she's better.

 

[canary]

Seasong, I think it highly unlikely that your mum will ever go into a CH willingly, even though it would be the best thing for her.
Now is the time to use "love lies" - its a convalescence home, its assisted living, its a new flat, its a hotel............. whatever works.

Mum doesnt know that she is in a CH. She went there after a hospital admission and we told her she was convalescing. Now she thinks it is her own home and does not remember the bungalow that she used to live in. It is very sad to realise that she doesnt know, but she is so much better now she is there. She is calmer, put on some weight (she was just skin and bones when she went in as she hadnt been eating) and enjoys the company.

 

[Belleooo]

Oh dear. When Dad used to go for his visits to respite in the local residential home we used to tell him he was going to the hotel, it was his holidays. Used to feel terribly guilty about deceiving him but he used to settle very quickly and forgot, and always seemed content. Would have done the same if he was going into full time residential care. Alzehimers Scotland told me not to feel guilty if I have to lie or make up stories to keep a calm Dad. Hope you are able to sort this out quickly. And I agree with the consultant.

 

[Mark H]

I knew my mother would not willingly move to a care home so the cover story was she was going to see a doctor. When we arrived at the home we went straight to her room. A male nurse came in to take her blood pressure & weigh her and mum thought he was the doctor. After she had settled in the room we told her the doctor said she was run down and needed to stay a few days. That was 5 weeks ago and she is now settled & contented and rarely talks about her old home.

Emotionally it was tough the first week that mum was in the home as we'd been advised to not visit so she got used to the staff. Now 5 weeks on I feel a weight has been lifted as I know mum is safe & well cared for.