Feeling sad and guilty

[AW1938]

Hi, I am new to Talking Point. My mum has Alzheimer's diagnosed 5 years ago. Last year she deteriorated a lot and had several hospital admissions for urine and chest infections. we tried care visits and a live in carer (against her social workers recommendation). After the last hospital admission I agreed she had to go into a home. I am an only child and was feeling totally drained and torn in a million different directions (work, partner, first grandchild etc etc) . I found a lovely home and my mum went straight there from hospital on the pretence that it was to convalesce. The first couple of weeks mum didn't eat or drink much and was very frail still recovering from her infections. Slowly she has improved and is genuinely stronger and eating and mostly happy, loves all the carers and laughs a lot. Despite this, she has started to say she wants to go home. She cant remember not knowing her own home and being scared or the hospital admissions and live in carer and doesn't have a clue how exhausted I was. I just don't know what to say to her? I know that this is probably a common problem but I feel guilty as it was my decision for her to be there! Any ideas??

 

[pippop1]

You say, "When the Dr says you are well enough, then we can think about you going home".

It's not easy for you.

 

[AW1938]

Thank you. That's what I have been saying to her but she gets so frustrated with me. I think she knows I am the decision maker so she gets at me.


Sent from my iPad using Talking Point

 

[Slugsta]

As pippop says, you find an excuse that will satisfy your mum. 'Blaming' the doctor is good as older people will often defer to someone they perceive as being 'in authority'.

Other things people have reported is saying that there is work of some kind being done on the house, so it is not fit for habitation at the moment. Or even something like ''it's too late today, we will go tomorrow'. This depends largely on your Mum's effective memory and whether she is likely to forget the question and answer in 5 minutes, 5 hours or 5 days!

 

[pippop1]

Re the work on the house, we said there was painting going on and the Dr said the fumes were bad for her chest. Said that for a few weeks and gradually she forgot.

I emphasized that yes of course we'd like her to be at home but the Dr said no at the moment so what can we do! We emphasized the "WE" part of it so that we are on her side, as it were.

She did forget in the end. Stay strong, hone your acting skills.

 

[AW1938]

I guess I try to be as honest with her as I can and wish I could have a real frank talk with her but that's impossible as she doesn't remember yesterday, so to try to reason with her why she cant go home is a no no. If she knew we were already in a 12 week disregard with her house and it will have to go up for sale asap, she would go mad! I have also had her little dog rehoused as I couldn't manage him with everything else. I have tried to take bits into the home for her room but she keeps saying take them home. Does anyone know how long it will take for her to accept she is not going home?


Sent from my iPad using Talking Point

 

[Katrine]

She won't accept it in the way you do; that is 'understand that it's for the best that she no longer lives at her previous address and is living permanently in a CH'. She will probably have vaguer memories of various places that were once 'home'. It's not so much the specific house that she wants to return to; it's independent living and privacy that she wants (as do we all).

Therefore don't set yourself up to fail.

She may, if you are lucky, settle in to her new life and forget the recent past when she still had her own home. The pain you feel at selling her house 'behind her back' is unavoidable, sadly. While she struggles with benevolent captivity, you will struggle with letting go of her need for absolute truth, for rational discussion; and for a proper understanding of her living situation and medical condition.

 

[love.dad.but..]

Dads acceptance was more that he declined so he understood even less. He took about 4 months for the agitated pacing and questions to lessen. Hard situation for us all to handle I learnt I had to change tack during a conversation and go with the flow of dad...like a rollercoaster but love lies for me are the kindest way to deal with the questions but 2.5 yrs on I don't get many now. I used the Dr excuse for a long time as he had swollen ankles so I could point that out, as he was and still is resistant to personal care carers use the same and that seems to mostly work as well.However I have never worn my coat into the care home so no trigger for dad to get ready to go with me and dad thinks I am now part and parcel of the care staff, he doesn't know me as a daughter now, I never say I am going just that I have to wash up, make a cake for tea etc...he is past the point of understanding where I go or caring but why change what has worked so well, I have visited with him for over 2 hours sometimes and he soon forgets I have been, I have seen him just walk straight past me and that's fine, kinder for him. I regret that after an unsettling start I have never been able to take him out of the care home but again the decision made was kinder for him. It did feel deceiptful and upsetting to sell his beloved car then his house, it felt the wrong way round with dad still living but needs must, none of the care home scenario is what we or our parents envisaged but life is a lottery and we can only do our best.

 

[Spamar]

Hi, many pwd say they want to go home, but home is generally somewhere where they feel safe, not necessarily a real place at all. A myth from childhood!

 

[AW1938]

Hi again, mum has now been in care home for 2 months (she thinks a year). Mum is very anxious and unsettled, every visit she is crying and begging to go home (even tho when she was at home she was begging to go home!). Its so hard seeing her so unhappy. Mum has moved area so has new GP, so no support from old GP, cpn, Sw. I have asked for an urgent referral to cpn but this hasn't happened yet. The council stop funding under the 12 week disregard in a few weeks and we are not being allowed a deferred payment as mum has an equity release on her house. I am so worried about selling her house (which of course I have to to pay her fees), when she is so heartbroken about not being at home! Help! Do I really have to ignore her requests and just get on with selling property?


Sent from my iPad using Talking Point

 

[Plisnit]

Hi again, mum has now been in care home for 2 months (she thinks a year). Mum is very anxious and unsettled, every visit she is crying and begging to go home (even tho when she was at home she was begging to go home!). Its so hard seeing her so unhappy. Mum has moved area so has new GP, so no support from old GP, cpn, Sw. I have asked for an urgent referral to cpn but this hasn't happened yet. The council stop funding under the 12 week disregard in a few weeks and we are not being allowed a deferred payment as mum has an equity release on her house. I am so worried about selling her house (which of course I have to to pay her fees), when she is so heartbroken about not being at home! Help! Do I really have to ignore her requests and just get on with selling property?


Sent from my iPad using Talking Point

I've had similar problems with my mum. I moved her five mile across a county boundary and had to start all over again with the various specialists. I only managed to get the psychiatric consultant out to see her by badgering her secretary. My mum also constantly asks to go home, without really knowing where 'home' is. I'm also in the process of getting it ready for sale and I feel really guilty clearing things out. You are doing the best you can for your mum and if home isn't an option for her, you have no choice.

 

[AW1938]

Thank you, it helps to know other people are going through the same things


Sent from my iPad using Talking Point

 

[olivia1]

My Mum also went into a home very recently

Hello AWP,
I read your messages and empathise with your sadness. I am feeling similar things to you. Sadness and guilt too. But, this isn't the Mum I knew all my life - this is a different Mum who needs different care now. I have not had to sell her house (as you have) - so I can imagine how that must make you feel but you are looking out for her best interests now. Looking after your Mum at your home isn't an option - you have things in your life that can't be changed. I have this - aware I have to make a life for myself because this is the only one I've got and not in a position to have Mum stay with me. I know she's in a safe place where she is being properly looked after.

What you say to your Mum depends on her memory capabilities. Deferring her off the topic - is difficult if she is upset - if she is feeling disorientated - then that may be upsetting her more. If you can explain reasons to her why she can't live alone and look after herself. I say to Mum that she was forgetting to eat and stress seemed to be preventing her from going to the loo at the right time. That has stopped since being in the home. My Dad wasn't the best carer for her, I knew this but things came to a head and it became clear Mum would be better looked after in a home.

An expert in the field and friend of mine explained that with time - 2 months is not long - she will become more settled and accepting of her new surroundings. She must know that the home is the best place for her. The 24-hour care is very helpful - Is there any way of talking to her, I don't know ....about (perhaps) moving her to a different part of the home.. I don't know - something to distract her from always thinking about going home? I find any way to distract her thinking or talking about home - it's an exercise - how about some Alzheimer's activities - a jigsaw puzzle, colouring book, pictures to prompt wee chats about other times - holidays - I'm not sure how much time you have.
I am in a similar position to you I think

 

[olivia1]

I hope

Sorry - my last post was directed at AW1938 not AWP
I am feeling sadness and emptiness but also comfort that the home is efficient, effective, caring and full of capable staff. I make every effort to spend fulfilling time with Mum when I visit. I can only go at weekends and not every weekend either - Guilt. I go for the three days of the weekend and stay for a couple of hours. So, might take some work and I have some activity books, just being with her is helpful. Two friends visited at the same time - anything that can restore a feeling of normality for Mum is good i feel.

 

[Marcelle123]

Hi again, mum has now been in care home for 2 months (she thinks a year). Mum is very anxious and unsettled, every visit she is crying and begging to go home (even tho when she was at home she was begging to go home!). Its so hard seeing her so unhappy. Mum has moved area so has new GP, so no support from old GP, cpn, Sw. I have asked for an urgent referral to cpn but this hasn't happened yet. The council stop funding under the 12 week disregard in a few weeks and we are not being allowed a deferred payment as mum has an equity release on her house. I am so worried about selling her house (which of course I have to to pay her fees), when she is so heartbroken about not being at home! Help! Do I really have to ignore her requests and just get on with selling property?


Sent from my iPad using Talking Point

Hi - my Mum lived in a bungalow near us for 20 years till last November. Then it was hospital - a non-dementia respite home - and now settled in a good dementia home near us since early December.

I too am selling her house 'behind her back' and there are complications because a family member put up a third of the money using a trust fund. I've had to clear out all Mum's possessions - some to my siblings, some furniture to charity, a huge amount to the tip, and lots of Mum's clothes & other treasures clogging up my house. I can't tell Mum about any of this and it makes me feel uneasy - but I have to do it.

If the house doesn't sell for a while I too will have to arrange 'deferred payment'. I am not at all a woman of business and I'd find this all very worrying if it wasn't that I've already been so worried by Mum & her health & her mood.

My mother isn't as distressed as yours (especially since being put on Memantine) but this afternoon (for example) she kept saying over and over that her head was muddled, that she'd been in trouble for going into someone else's room, that she needed someone to check up on her.

('But Mum, you're in a place where they are checking up on you.' - 'Who's checking up?' - 'The carers.' - 'Who are they? I never see them.' - This usually half a minute after we've just seen one and chatted!)

As I started to go, she got more distressed and started asking what she was supposed to do, but I fudged a few reassurances and went.

It is not a nice feeling. When I visit, I'm dying to get away and feeling terrible. When I don't visit, I think about Mum & wonder how she's getting on and feel terrible.

I think the only thing we in this position can do is hang in there. We know that we've done what the situation seemed to demand. It isn't perfect, but nothing in this life is perfect.

As Winston Churchill is supposed to have said: 'Keep beggaring on!' (Well, near enough. )

 

[AW1938]

Oh thank you so much for your messages. I am feeling particularly bad today. My mums friend (and one time partner) of 25 yrs died yesterday and i had to tell mum, as she had been asking for him. She was heartbroken and i ended up staying at the care hone for 6 hours with her[emoji25]. I rang this morning and they said she was fine, hadn't mentioned anything so prob best i stay away as i might start her off again!
Like you, i am beginning to dread going yet think of her constantly if I don't go. I just pray she will settle soon.


Sent from my iPhone using Talking Point

 

[Marcelle123]

Oh thank you so much for your messages. I am feeling particularly bad today. My mums friend (and one time partner) of 25 yrs died yesterday and i had to tell mum, as she had been asking for him. She was heartbroken and i ended up staying at the care hone for 6 hours with her[emoji25]. I rang this morning and they said she was fine, hadn't mentioned anything so prob best i stay away as i might start her off again!
Like you, i am beginning to dread going yet think of her constantly if I don't go. I just pray she will settle soon.


Sent from my iPhone using Talking Point

It sounds a very upsetting six hours. Wishing you the best of luck with everything and hoping that things will improve.

 

[Slugsta]

AW1938,

What a terribly distressing time for you!

May I suggest that, if your mother asks about her friend again, you don't repeat the news that he has died? Each time you tell her the news, it will be as if she has never heard it before - and she will grieve afresh each time My suggestion is that you think of a 'love lie' that will satisfy your mother (he's working late, whatever) and have this ready for if she asks again. I don't think either of you could tolerate repeated episodes like yesterday!

 

[AW1938]

I know, part of me wishes i hadn't told her. I just hate lying to her.


Sent from my iPhone using Talking Point

 

[olivia1]

Hi, i think it's normal they go into the wrong room from time to time, someone told me it's their home. They should feel that way i guess. As long as they dont wreck the place or frighten another resident then I'm sure it's okay to get a little muddled. Yes, it's really hard when something is said that is the true..My Mum was busy telling me a coin wasn't money. Suppose quick change of subject to something she does know about ! Find my mum really likes pictures. That's really good.
I think you have to believe that it will work out in the end. Asthings will have worked out before, they will again Keep doing what you're doing, if you think it's the right thing for your Mum keep on doing that listen but try to keep her occupied thinking about happier things