living with the guilt monster after 18 days of care home....

pjapril

Registered User
Oct 22, 2017
77
0
Hi, i posted a bit when I first had to move mum to a care home 18 days ago but then went quiet as the guilt monster everyone here understands consumed me...so haven't felt up to posting for a while. Every day mum packs her bags (now including the cushions, bedding and anything she can get her hands on...) and every visitor is greeted with "oh good you've come to take me home". The DOL is in place and she is not safe to go anywhere and each time it gets more heart breaking to see her face when her latest escape plan fails! The home have been superb and the staff are marvellous but we still haven't managed a bath or shower so a new order is going in to "force" her which for a lady who was never out the bathroom is a hard one to deal with emotionally for me. I never expected to be so overwhelmed by the paper work and all the issues that come with this and I know many of you will understand...some days it seems like there are just too many decisions to make that I just don't want to do and it all seems so intrusive to deal with mums things and to step in to her finances etc. I just guess I wanted to off load some of my sadness here and to give the guilt monster a kick by writing down how I feel! I just wish there was a magic cure as I am sure many of you also do......I will sign off and go hope for some sleep and no dreams about mum's face every time the door closes!
 

Raggedrobin

Registered User
Jan 20, 2014
1,425
0
It does get easier. I think when someone first goes into a home is such a hard time and you do tend to feel so guilty but it is often the only way that will work. But given time she will move on to some other things apart from getting ready to leave. Hopefully the more time the care staff spend with her the more she will settle in. My Mum is now a relatively passive member of her care home but i remember when she first move in she was terrifying, she was so angry that she wasn't allowed to leave. It will pass.
I totally understand the overwhelming feeling with all the finances and suddenly having to pry into someone's affairs but again, in time you get more used to it. Just wanted to say, you have my sympathy, its a difficult time but it will pass for both you and her.
 

pjapril

Registered User
Oct 22, 2017
77
0
It does get easier. I think when someone first goes into a home is such a hard time and you do tend to feel so guilty but it is often the only way that will work. But given time she will move on to some other things apart from getting ready to leave. Hopefully the more time the care staff spend with her the more she will settle in. My Mum is now a relatively passive member of her care home but i remember when she first move in she was terrifying, she was so angry that she wasn't allowed to leave. It will pass.
I totally understand the overwhelming feeling with all the finances and suddenly having to pry into someone's affairs but again, in time you get more used to it. Just wanted to say, you have my sympathy, its a difficult time but it will pass for both you and her.
Thank you - it just helps knowing how many others struggle with the same issues xx
 

Hilaraki

Registered User
Jun 8, 2016
4
0
This is the very first post I have ever sent to any forum. But tonight against all my internal battles I realise for the 100th million time I have to put my mam in a home. I have been fighting this for so long but after she spent all last week in hospital crying to go home and I finally get her out and she is crying now for her real home. I have lived with her for last 20 years, she is 94 and I am 58. In remarried 4 years ago and i am close to the end as it is too traumatic here in the house. My husband travels for work and any time he is here she thinks I am running a brothel and won't go to bed . I have no siblings. I fear for my health - - and for the first time in my life my mental health.
 

pjapril

Registered User
Oct 22, 2017
77
0
This is the very first post I have ever sent to any forum. But tonight against all my internal battles I realise for the 100th million time I have to put my mam in a home. I have been fighting this for so long but after she spent all last week in hospital crying to go home and I finally get her out and she is crying now for her real home. I have lived with her for last 20 years, she is 94 and I am 58. In remarried 4 years ago and i am close to the end as it is too traumatic here in the house. My husband travels for work and any time he is here she thinks I am running a brothel and won't go to bed . I have no siblings. I fear for my health - - and for the first time in my life my mental health.
Oh I feel so much for you. I did not want to do it but a care home was the only option. We went through the same hospital issues and the doctor gave me food for thought - he said you have 2 choices both of which would make you feel guilty - first let her go home like you think she should and she says she wants - and then imagine the guilt of something terrible happening because she is so confused. Or second - feel the guilt of the care home - but know she is safe, cared for by professionals 24 hrs a day and eating. He then said the only option is care. This point comes and it is so tough emotionally but it can be the only option. Like you I often fear for my own mental health and I can tell you it hasn't been easy / but when the time has arrive you really do have to consider leaving it to the professionals to care for your mum. Lots of love and virtual hugs sent to you as I am sure like me you lie awake - the nights before mum went from hospital to care were for sure the worst I ever had xxx
 

yak55

Registered User
Jun 15, 2015
616
0
Hi, i posted a bit when I first had to move mum to a care home 18 days ago but then went quiet as the guilt monster everyone here understands consumed me...so haven't felt up to posting for a while. Every day mum packs her bags (now including the cushions, bedding and anything she can get her hands on...) and every visitor is greeted with "oh good you've come to take me home". The DOL is in place and she is not safe to go anywhere and each time it gets more heart breaking to see her face when her latest escape plan fails! The home have been superb and the staff are marvellous but we still haven't managed a bath or shower so a new order is going in to "force" her which for a lady who was never out the bathroom is a hard one to deal with emotionally for me. I never expected to be so overwhelmed by the paper work and all the issues that come with this and I know many of you will understand...some days it seems like there are just too many decisions to make that I just don't want to do and it all seems so intrusive to deal with mums things and to step in to her finances etc. I just guess I wanted to off load some of my sadness here and to give the guilt monster a kick by writing down how I feel! I just wish there was a magic cure as I am sure many of you also do......I will sign off and go hope for some sleep and no dreams about mum's face every time the door closes!
So sorry, take care and sending you a hug x
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hello @Hilaraki
a warm welcome to TP
I'm glad you feel you can post here, it helps so much to get stuff 'said out loud' and be listened to by folk who do understand as many of us have trodden a similar path
might it help if you think that you are not putting your mum anywhere - what you definitely are doing is helping her to move into a new home where you will continue to be her loving, caring child, just with a team of carers around you who will be on hand all day every day to see to her care needs and support you both
no way are you giving up on caring for your mum
and you need to see to your own health and welfare to be able to care for yourself, your husband and your mum
it's a tough decision to make; you really sound to have reached the point where it is the right decision to make for your mum and for you
keep posting to let us know how you both are
 

Hilaraki

Registered User
Jun 8, 2016
4
0
hello @Hilaraki
a warm welcome to TP
I'm glad you feel you can post here, it helps so much to get stuff 'said out loud' and be listened to by folk who do understand as many of us have trodden a similar path
might it help if you think that you are not putting your mum anywhere - what you definitely are doing is helping her to move into a new home where you will continue to be her loving, caring child, just with a team of carers around you who will be on hand all day every day to see to her care needs and support you both
no way are you giving up on caring for your mum
and you need to see to your own health and welfare to be able to care for yourself, your husband and your mum
it's a tough decision to make; you really sound to have reached the point where it is the right decision to make for your mum and for you
keep posting to let us know how you both are
 

Hilaraki

Registered User
Jun 8, 2016
4
0
I can't thank you all enough for the replies. I didn't expect any to be honest. - as i know there are many in worse positions than me. Also I don't feel important enough..... posting last night for the first time ever helped me enormously. I feel real again if that makes sense . I have taken all help on board and now must try to put it into play.
My poor lovely mam is so lost but in better form today which helps a lot. ThXmks agsin xx
 

mjw1304

Registered User
Oct 9, 2017
34
0
I feel for you. My mum went from being fairly independent although deteriorating to totally dependent in a few months. A three month hospital stay for acute confusional state caused by a low sodium level left her with no confidence at all and as she was "padded" there she lost the ability to completely control her bladder and bowels. She went home with a full care package and meals on wheels but lasted only 36 hours before she was back in hospital. We then had to move her to a care home as we knew she couldn't live alone any longer. We had pleading to live with me or my son and his family which was answered with a firm no. Tears from her and also me as I felt I had let her down. Fast forward 7 weeks and mum is happy, says she feels safe and is well looked after. Now when I visit we laugh and enjoy the time together. Yes the mum of my childhood is gone but this stage can still bring joy and precious memories. My guilt monster has been sent packing and for the first time I feel free. I love my mum and know now that the move to the home was absolutely the right decision for us both. Stay strong as it really does get better xx
 

Witzend

Registered User
Aug 29, 2007
4,283
0
SW London
I do so feel for you - I know all too well how hard it can be. For the first few months at least, visits to my mother in her CH were truly gut-wrenching - I would have to psych myself up to go and my stomach would be in knots. It was an endless repetition of, 'Get me out of here! Have you come to take me home?' and certainly at first, real anger at me and siblings for putting her there. I lost count of the times we were all going to be cut out of her will! We were all 'just after my money!' I did just once resort to telling her that given the cost of the care home fees, if we were only interested in her money, we'd have left her at home, but of course that meant nothing and was instantly forgotten anyway, though it did temporarily relieve my feelings at the time!

As is so common, she had absolutely no insight into her condition - no idea that she could no,longer even make herself a cup of tea, zero short term memory, beginnings of continence issues, refusal to wash, you name it.

I got through those first months courtesy of a lot of 'love lies', but only after I hit on the right ones to pacify her. And by easing the goodbyes by telling her I was just nipping to the shops or whatever but I'd be 'back very soon' Her short term memory was so bad that she would forget whatever I'd said so quickly, so I didn't feel bad about it. I once had to nip back after only 2 minutes for a cardigan I'd left behind (it would have been 'squirrelled' in no time!) and already she'd completely forgotten that I'd been at all.

It did get easier, but it took quite a long time, and very sad to say that the 'easiest' visits were probably after she'd forgotten who I was, and I was either a sister, or later, just a 'nice lady' who made her cups of tea and brought her chocolate. My mother was never a very sociable type anyway, so I'm sure that didn't help in the early days. I know that many people settle a lot more quickly and easily, so I do hope you'll be one of the luckier ones. Fingers crossed!
 

love.dad.but..

Registered User
Jan 16, 2014
4,962
0
Kent
Same for me as Witzend...months of difficult settling in for dad and then gradually it became easier because he declined so less aware of his surroundings or who I was although he retained some sort of recognition of me til the end...probably thought I was another staff member with a familiar face. Sad on one level but made visiting for me a lot easier. But even at this stage I still never wore my coat in or let him see my bag as early on they were triggers for him wanting to go with me, even though he was beyond that understanding
 

pjapril

Registered User
Oct 22, 2017
77
0
Thanks witzend and lovedadbut - it's a challenging time for sure. Mum has been assessed as no capacity but she is happily telling all (and angrily telling me) that there is absolutely nothing wrong. It's heart wrenching. Lots of people visiting and covering for me as I work away to make sure she has everything she needs. But every time I ask she swears no one has been as her short term memory has gone now. I guess that just like the rest of you I just want my mum back. To have a chat and a laugh again ..... this illness is so so cruel
 

DeMartin

Registered User
Jul 4, 2017
711
0
Kent
I have learnt that to visit at activity time improves my visit, we can laugh over a jigsaw, or making autumn decorations, she is too busy showing me how to do the activity that she has no time to go into the “no money, want to go home, never feed me” list of complaints. I leave content that she is busy and occupied, and cared for.
 

pipd

Registered User
Apr 12, 2015
75
0
Leigh on Sea Essex
Reading this forum and particularly this thread really has helped me through the past 4 years of coping with my mum's dementia 'journey '. She has deteriorated hugely over the last six months and following an A&E admission has ended up being discharged into a nursing home, after 5 weeks there she has today had to be moved into a specialist dementia unit. I have never felt so awful as I did today, seeing her so frightened during the move has broken my heart but deep down I know that it is for the best. I am hoping g this deep guilt starts to ease soon though. If it wasn't for this forum I dread to think how my mental health would be by now. Just knowing none of us are alone with this dreadful disease is a true comfort.
 

pjapril

Registered User
Oct 22, 2017
77
0
Reading this forum and particularly this thread really has helped me through the past 4 years of coping with my mum's dementia 'journey '. She has deteriorated hugely over the last six months and following an A&E admission has ended up being discharged into a nursing home, after 5 weeks there she has today had to be moved into a specialist dementia unit. I have never felt so awful as I did today, seeing her so frightened during the move has broken my heart but deep down I know that it is for the best. I am hoping g this deep guilt starts to ease soon though. If it wasn't for this forum I dread to think how my mental health would be by now. Just knowing none of us are alone with this dreadful disease is a true comfort.
Hi pipd. I really empathise with you and know exactly how you feel. That move in to specialist dementia care the way we have had is so hard and even though we know it's the right thing (and all the doctors etc. keep telling us it is) it doesn't make us feel less guilty! I just keep telling myself that she is safe and warm and eating (big problem as mum is down to just 5 and 1/2 stone. It's the begging to go home that hurts tho and everyone keeps reassuring me that it will stop eventually..... I want to tell her I would do anything to take her home but that won't help - have to just keep on with the love lie that she is there to convalesce which seems to calm her a little. Take care and sending you lots of virtual hugs at what I know is a horrible time for guilt!!!
 

jen54

Registered User
May 20, 2014
240
0
Oh I feel so much for you. I did not want to do it but a care home was the only option. We went through the same hospital issues and the doctor gave me food for thought - he said you have 2 choices both of which would make you feel guilty - first let her go home like you think she should and she says she wants - and then imagine the guilt of something terrible happening because she is so confused. Or second - feel the guilt of the care home - but know she is safe, cared for by professionals 24 hrs a day and eating. He then said the only option is care. This point comes and it is so tough emotionally but it can be the only option. Like you I often fear for my own mental health and I can tell you it hasn't been easy / but when the time has arrive you really do have to consider leaving it to the professionals to care for your mum. Lots of love and virtual hugs sent to you as I am sure like me you lie awake - the nights before mum went from hospital to care were for sure the worst I ever had xxx
I have to tell myself this every day.
Mum has been in carehome since beginning Jan,after a fall,
Mum has improved in her co fusion since being in the home, as the fall and hospital made her worse,.
I know she couldn't go hone,as her house only has convector heaters and a gas cooker she was barely able to use. She can hardly get up or fish stairs,wasn't getting up,not eating etc.
But jiw she is in care I sm getting little digs..possibly my paranoia due to guilt, that mum isn't as bad as those in there..and that didnt we say we could go up daily to her house..even though it was me..living locally who was doing everything..
Mums brother visited her..hadnt seen her for years,and evidently said mum remembered him and his grand hold..who mum hadn't ever even seen..the guilt is made worse by people who see mum for a short while..she in hostess mode and just don't understand why she had to go in to the home really.
 

Scouts girl

Registered User
Jan 18, 2017
306
0
The guilt never leaves us, even after losing my mum before Christmas last year, I cannot come to terms with the guilt of moving her into a care home because I could not solely look after her any more at home and the doctors said she now needed 24 hour specialist care. I think the guilt is more hard to bear because I could not discuss with her the reasons for moving her as I was reaching carers breakdown and had to tell so many love lies in the process. She was so unhappy and unsettled in the home for a year before she died even though it was a lovely home and she received excellent care in the time she was there. I wish I could have just one more day so that I could again try and explain the reasons for the move to her. I know deep down it was the right thing to do for my health and her wellbeing but it doesn’t ease the guilt and heartbreak I feel. I wish you strength and like me just try and keep reassuring yourself that you did what you did for your sake, mums safety and well-being and I hope in the days and months to come I will remember my lovely mum more with smiles than with tears. Take care xxx
 

SnowWhite

Registered User
Nov 18, 2016
699
0
I feel guilt all the time. Mum left her home just before Xmas 2016. Along the way we've had many problems but she is now in a very nice, warm, spacious, caring home just 20 mins from my house. Some days shes not too bad then other days (like yesterday) my niece visited her and she complained the whole time about things shes imagining. She says its freezing cold (its like a sauna!) the carers dont come when she needs them (my niece rang the buzzer and they came in minutes.) they are rearranging her room but it hasnt changed since I took her there in November. She never sees a soul (i visit every other day, my brother visits and ex neighbours, the priest and people from church have popped in).

She says she has nothing to do - she has TV and radio but refuses to let me put them on! She has a big pile of magazines which I take in but she barely looks at. I have also been there when staff have asked her whether she would like to go down to the lounge to chat with some others but she says she would rather have a sleep!

I can honestly say that the guilt never leaves me all day, every day! This morning I have been making her up an album and labelling it as she tells me shes forgotten what her family looked like. Then I spent an hour cutting all her stoma bags to size. Then I went through her suitcases of clothes which we store here and selected some warm items for her. I am going to visit her after lunch and no doubt she will find something new to complain about. The sad thing is, that in her right mind, she is not like that and I find that very hard. My poor niece was very upset yesterday as she stayed 2.5 hours and she still didnt want her to leave.

I feel for all of you in the same situation. It just drags you down.
 

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