Second time lucky!!!

anaworm

Registered User
May 30, 2023
41
0
Update ...... Mum has not settled at all, she has pretty much stopped eating and drinking and has been fighting care staff over her personal care. I have spoken to her just twice in the last ten days and to be honest it wasn't really a conversation and I think she is very close to checking out :-( I am wracked with guilt .... in 6 short weeks she is not the person we left in the UK .... should we have kept her her with us? I know the care home are trying their very best but I feel like she has given up because maybe she felt abandoned. How do you all do this - the guilt is ridiculous and the constant 'what ifs'. I am struggling but now in a different way - while she was here it was constant anxiety but now she is in the UK it is guilt and angst about how she is feeling and the fact that she is not with loved ones. She sounded so broken on the phone .... old age is rubbish, dementia is soul destroying for everyone involved ... sorry use this board to vent as family all have their own view of the situation and I look like a permanent crying wreck trying to navigate this in my own way.
 

Donk1

Registered User
Mar 26, 2022
100
0
This is awful for you….i am about to be in similar situation with my OH (if I go through with it)…a specialist care home which is a long way from where I live as there is nothing close…the guilt at the very thought of it is making me doubt myself although I know for him it may be better in the long run. When we live out of the UK there are so few options
 

Toopie28

Registered User
Jun 7, 2022
345
0
I'm so, so sorry - I know exactly how you feel. Ma is in the UK and I'm in the US.
On really, really bad days (for me), I just want to sell up and move back to UK and deal with what I have to. The guilt and "what ifs".
On just bad days, I realise even if I'm next door I can't fix it.
It's dementia. She's not going to get better. Most of the time she's trembling over the phone and crying when I video call with her. Oh and yes, I've abandoned her too.

You don't stop thinking about it. You don't stop trying to "fix" it. It's blimmin awful. The guilt - aaarrrrgggggg! It's always there.
Ma's been in the home for over 4 months now and not settled. But she won't. She's feisty and stubborn and that won't go away.

The staff at one point tried to complain to me about Ma. She was pacing all the time and going into people's rooms (looking for me - not sleeping or going in the beds like some have done in her room)
I mean, seriously?!?! I've seen people spit and be verbally abusive and Ma's pacing is annoying you? There's more but I digress.

My point is -
Today is not such a bad day and I realise I've done everything I can possibly do to help her. I've put her in a safe place. YOU have put your Ma in a safe place. You have done the right thing.
Ma's not happy there but she wasn't happy at home.
She doesn't wanna bathe - leave her. I asked her one time why she wouldn't shower and she said "where am I going? who's going to notice?". She has a point. I did say, well the people in the church will notice but whatever. The more they left her alone and made her think it was her choice - the more she's fine with it.
They stuff her with food all the time - the more they force her to eat, the more she would not eat. I told them to NOT force her. Just leave it there and if she wants it, there you go. If not, that's okay too.
I let the home deal with it. That's why she's there.
They will never take care of her the way you did. But at some point, you wouldn't be able to either. :(

If anyone ever harmed her or I felt she was unsafe, then I would move her to another home (lord help me, I will have a breakdown if I have to do that) but never back "home".

Try and breathe. And not be so hard on yourself. There's only so much you can do. xxx
 

anaworm

Registered User
May 30, 2023
41
0
This is awful for you….i am about to be in similar situation with my OH (if I go through with it)…a specialist care home which is a long way from where I live as there is nothing close…the guilt at the very thought of it is making me doubt myself although I know for him it may be better in the long run. When we live out of the UK there are so few options
Thank you for replying - Good Luck with it all, I wish the very best for you and your OH.... and yes it will be better for him in the long run and may be better to get him in and settled and used to the new routine when able to do so more easily. We questioned our timing (I have questioned all my decisions a thousand times) and the bottom line is that you will never know if you had done something else or something different if it would have been better so you just try hard to move forward and not over analyse what's been and gone ... take care (P.S. I am much better at saying this stuff than doing it .... :)
 

anaworm

Registered User
May 30, 2023
41
0
I'm so, so sorry - I know exactly how you feel. Ma is in the UK and I'm in the US.
On really, really bad days (for me), I just want to sell up and move back to UK and deal with what I have to. The guilt and "what ifs".
On just bad days, I realise even if I'm next door I can't fix it.
It's dementia. She's not going to get better. Most of the time she's trembling over the phone and crying when I video call with her. Oh and yes, I've abandoned her too.

You don't stop thinking about it. You don't stop trying to "fix" it. It's blimmin awful. The guilt - aaarrrrgggggg! It's always there.
Ma's been in the home for over 4 months now and not settled. But she won't. She's feisty and stubborn and that won't go away.

The staff at one point tried to complain to me about Ma. She was pacing all the time and going into people's rooms (looking for me - not sleeping or going in the beds like some have done in her room)
I mean, seriously?!?! I've seen people spit and be verbally abusive and Ma's pacing is annoying you? There's more but I digress.

My point is -
Today is not such a bad day and I realise I've done everything I can possibly do to help her. I've put her in a safe place. YOU have put your Ma in a safe place. You have done the right thing.
Ma's not happy there but she wasn't happy at home.
She doesn't wanna bathe - leave her. I asked her one time why she wouldn't shower and she said "where am I going? who's going to notice?". She has a point. I did say, well the people in the church will notice but whatever. The more they left her alone and made her think it was her choice - the more she's fine with it.
They stuff her with food all the time - the more they force her to eat, the more she would not eat. I told them to NOT force her. Just leave it there and if she wants it, there you go. If not, that's okay too.
I let the home deal with it. That's why she's there.
They will never take care of her the way you did. But at some point, you wouldn't be able to either. :(

If anyone ever harmed her or I felt she was unsafe, then I would move her to another home (lord help me, I will have a breakdown if I have to do that) but never back "home".

Try and breathe. And not be so hard on yourself. There's only so much you can do. xxx
Thank you so much for this - it is so good to hear from others in similar situations. We are lucky because we are able to get to UK reasonably quickly and unfortunately my Mum has really declined very rapidly since she has been here and it has meant that I am now back in the UK for the 2nd time since we moved her and my OH has also been over to visit in that time. We were told last week that due to her lack of eating and drinking she was deteriating fast and so I have made the decision to come over. The first day was reasonably good and I was surprised - the last two days have been awful - she is literally skin and bones, so frail lying in bed, mouth open and semi conscious. It is heart breaking to watch and I continue to challenge myself about if we had kept her at home would this have happened (it would - but would it have been so quick). The only saving grace is she says she is in no pain and is still on no medication (that is pretty much the whole of her 91 years meds free) We really are on the last leg now and I am watching and waiting for that phone to ring when I am not there. This forum has been a huge help to me just to find solace in the fact that what we are going through is the disease.... I do not wish this on any sufferer or any family member it is the cruelest! I completely agree with your attitude - the care home doe seem to over face with food and are fanatical about washing!! For us our journey is very near an end .... but we wish you and your Ma all the best - stay strong and thank you for your insight I really appreciate it :)
 

anaworm

Registered User
May 30, 2023
41
0
So, this is a sad post to me in a number of ways ..... we took my Mum to the UK care how just 9 weeks ago ... she didn't settle at all and then stopped eating and drinking .... we visited and tried to cajole, supplied the home with familiar sweet treats but to no avail. Eventually we got the call and I headed to the UK to be with my Mum in her last days. I found that whole period horrendous .... she in took nothing and her mouth was open the whole time. My Mum on day 3 indicated that she was in some discomfort and then morphine was administered. Up to this point my Mum age 91 had never been on any long term medication. She was strong and she carried on fighting - what for I am not sure but about 5 days and after many moments when I thought the end was coming she passed ... her breathing slowed and then stopped!!!! She was a shadow of who she had been physically and I cannot imagine that is the way we should watch our loved ones last days/hours. I am sad that she is gone and at this time in practical mode sorting out funeral and paperwork. I am sad that when i left her there just such a short time ago she looked like a functional human and her demise was rapid.... was that my fault ? should I have kept her here with us? would she have lasted longer? on the flip side we have looked retrospectively and maybe she was further down this dementia road that we knew! I am also sad because I have used this forum as a source of knowledge and comfort and now I will walk away from it . I would like to say Thank you to all of you that took time to respond to my posts and offer advice and comfort .... and I would like to wish all of you still on your paths the very best......the journey is long and hard ..... please please please take time and be kind to yourself ..... my thoughts are with you :)
 

sdmhred

Registered User
Jan 26, 2022
2,704
0
Surrey
Oh @anaworm I am so sorry to read your post 😢😢 I too lost my mum 10 days ago after a 4 day wait. It’s not nice indeed to watch.
I also go back and ask the if only questions - it’s natural. Don’t allow them to torment you.
Maybe your mum was ready to go - she was in her 90’s and no doubt had a full life.

Please don’t feel you have to leave the forum. Many who are ex carers stay and still offer support, friendship and advice. I am staying and journeying my grief.

You take care now xxx
 

canary

Registered User
Feb 25, 2014
25,560
0
South coast
I am so sorry to read your post @anaworm

You have nothing to feel guilty over. Your mum was further advanced than you, or her care home, realised. When people with dementia die their bodies close down slowly over weeks and months, although this is not always apparent. I have a photo of my mum a week before she died where she is sitting at a table with her great grandson and they are both banging teaspoons on the table and laughing. At this point she was on end of life care and had not eaten or drunk anything for 10 days, but looking at it, you would never know.

I think that, although no-one realised it, your mums body was almost certainly already closing down when she moved to the care home and there would have been no way that you could have prevented it. Please be kind to yourself
(((((((((((((((((((((((((((((hugs)))))))))))))))))))))))
 

Izzy

Volunteer Moderator
Aug 31, 2003
75,867
0
73
Dundee
I’m so sorry for your loss @anaworm.

Please do not feel that you have to leave this forum. Many of us have stayed on following the loss of our loved ones. You’ll still find understanding and support here.

Sending my condolences and wishing you strength.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,735
0
Kent
I`m so sorry your mother`s passing was so difficult.

She is at peace now and I hope it won`t take long for you to find your peace @anaworm
 

anaworm

Registered User
May 30, 2023
41
0
Oh @anaworm I am so sorry to read your post 😢😢 I too lost my mum 10 days ago after a 4 day wait. It’s not nice indeed to watch.
I also go back and ask the if only questions - it’s natural. Don’t allow them to torment you.
Maybe your mum was ready to go - she was in her 90’s and no doubt had a full life.

Please don’t feel you have to leave the forum. Many who are ex carers stay and still offer support, friendship and advice. I am staying and journeying my grief.

You take care now xxx
I am so sorry for your loss and thank you so much for taking time to reply ..... it is very comforting to know that someone really understands .... I will consider staying as suggested by you and some others .... there is definitely a bit more of my journey to go yet ...... I am sending you the very best and a hug .... :)
 

anaworm

Registered User
May 30, 2023
41
0
I’m so sorry for your loss @anaworm.

Please do not feel that you have to leave this forum. Many of us have stayed on following the loss of our loved ones. You’ll still find understanding and support here.

Sending my condolences and wishing you strength.
Thank you ...... :)
 

anaworm

Registered User
May 30, 2023
41
0
I am so sorry to read your post @anaworm

You have nothing to feel guilty over. Your mum was further advanced than you, or her care home, realised. When people with dementia die their bodies close down slowly over weeks and months, although this is not always apparent. I have a photo of my mum a week before she died where she is sitting at a table with her great grandson and they are both banging teaspoons on the table and laughing. At this point she was on end of life care and had not eaten or drunk anything for 10 days, but looking at it, you would never know.

I think that, although no-one realised it, your mums body was almost certainly already closing down when she moved to the care home and there would have been no way that you could have prevented it. Please be kind to yourself
(((((((((((((((((((((((((((((hugs)))))))))))))))))))))))
Thank you - hug very much appreciated ..... will try and take your advice :)
 

Alisongs

Registered User
May 17, 2024
713
0
So, this is a sad post to me in a number of ways ..... we took my Mum to the UK care how just 9 weeks ago ... she didn't settle at all and then stopped eating and drinking .... we visited and tried to cajole, supplied the home with familiar sweet treats but to no avail. Eventually we got the call and I headed to the UK to be with my Mum in her last days. I found that whole period horrendous .... she in took nothing and her mouth was open the whole time. My Mum on day 3 indicated that she was in some discomfort and then morphine was administered. Up to this point my Mum age 91 had never been on any long term medication. She was strong and she carried on fighting - what for I am not sure but about 5 days and after many moments when I thought the end was coming she passed ... her breathing slowed and then stopped!!!! She was a shadow of who she had been physically and I cannot imagine that is the way we should watch our loved ones last days/hours. I am sad that she is gone and at this time in practical mode sorting out funeral and paperwork. I am sad that when i left her there just such a short time ago she looked like a functional human and her demise was rapid.... was that my fault ? should I have kept her here with us? would she have lasted longer? on the flip side we have looked retrospectively and maybe she was further down this dementia road that we knew! I am also sad because I have used this forum as a source of knowledge and comfort and now I will walk away from it . I would like to say Thank you to all of you that took time to respond to my posts and offer advice and comfort .... and I would like to wish all of you still on your paths the very best......the journey is long and hard ..... please please please take time and be kind to yourself ..... my thoughts are with you :)
Our thoughts and hugs are with you too. Please stay on the forum, and comment back to offer your support, comfort learned experiences and wisdom to those of us still on this dreadful journey
 

anaworm

Registered User
May 30, 2023
41
0
I am sorry to read of your mum’s passing @anaworm.
Wishing you strength and peace for the days ahead.
Thank you :)
Our thoughts and hugs are with you too. Please stay on the forum, and comment back to offer your support, comfort learned experiences and wisdom to those of us still on this dreadful journey
Thank you ..... and I will :) Stay strong ....and take care of yourself as well as your loved one .... sending a hug :)