Torn in two with guilt

[snoggy1one]

I really need to get a few things off my chest.....My mother hates living in a care home and is desperate to go home. She is very unhappy after being in there for 6 months now and complains about everything from the staff, the residents, the food, the room etc .. nothing is right for her in there. However, so far I have found everything in there to be good and the staff have been very reassuring and kind.

Mum is in complete denial of her condition and continually pleads with me to let her go back to her home or live with me and my family and she is convinced she could carry on like she used to. I have previously looked after my mother for a short period of time but could not cope and reluctantly had to put her in a care home on the advice of the doctor. I have tried to explain to her that I cannot cope with working full time and looking after my children as well as being a full time carer but she does not accept my problems, feelings, worries or responsibilities.

I feel so sad that we do not have any quality time any more as every time I visit her I am worn down with her expecting me to look after her seeing as though she looked after me as a child. I have tried reducing my visits and shortening our trips out, but, nothing seems to work. Each time we meet up it becomes awkward and upsetting, and she will not back down.

I cannot reason with her any more and she is so frustrated and unhappy. She will not watch tv or play any games with me or spend any time in the home and wants me to take her out of the place and back home in the car. There is only one topic of conversation now that is wearing me down completely and I am totally guilt stricken and miserable feeling that I am letting her down. She feels that I should give up work and put her first the way she did for me when I was a child and I feel guilty for letting her down and not putting her first in her hour of need.

Mum will not agree to making her room more homely with any personal things and has become depressed although on a mild anti depressant. I feel as though my mother hates me and resents me for not looking after her at my home but with family commitments and work it is impossible and feel that I would incur real hardship on everyone if I tried to look after mum again myself.

There is no sense of reasoning with my mother and I try to explain my problems to her. She just gets angry and nasty with me and I regularly leave the care home in tears and she is left feeling imprisoned and let down by me. She keeps telling me never to visit her again if I will not take her out of the home to live with me. I am not really sure what to do now. I feel as though all this worry is taking over my life. It is the first thing I think about when I wake up in the morning and the last thing I think about before I sleep at night, yet, there doesnt seem to be an answer or a solution and I seem to be tearing my hair out in frustration getting nowhere, and going round in circles all the time.

We used to be really close and I am trying to make the time we have together special and stimulate her as much as I can by taking her to nice places but I cannot make her happy any more. I feel that I should repay her for looking after me as a child and feel guilty and torn in two but I also have my children to think of and feel that I am always neglecting themby chasing off to see my mum in the care home and coming back late and bad tempered with frustration and have little time for them. I realise that if my mother lived with us it would totally change their lives and I would be denying them quality family time with me. I feel overwhelmed with the responsibility of becoming a carer again and feel guilty for wanting to make the most of my childrens life whilst they are still young.

I don't suppose there is a solution or an answer, but, feel I just need to off load to someone, after such a very bad day today...

 

[Billie61]

Everyone on this site will definitely say to you that you must not feel guilty about it. Your mum is being cared for in the home and you are doing the best you can to support her there.
It is really hard having MIL living with us and it will not be for much longer as it is destroying our family life and beginning to cause family friction, partly due to exhaustion.
Please remember that you are doing what is right for you and your family, including your mum.
Would anyone else suggest that you did not visit for a couple of weeks? I don't know if that might help.

 

[snoggy1one]

Everyone on this site will definitely say to you that you must not feel guilty about it. Your mum is being cared for in the home and you are doing the best you can to support her there.
It is really hard having MIL living with us and it will not be for much longer as it is destroying our family life and beginning to cause family friction, partly due to exhaustion.
Please remember that you are doing what is right for you and your family, including your mum.
Would anyone else suggest that you did not visit for a couple of weeks? I don't know if that might help.

I am pretty new to this and not sure what I am doing, but, I feel a lot better just having some contact with somebody in a similar position. Thanks for the kind supportive words. I wish you luck and hope things improve for you and your family.

 

[Paulineannc]

I totally understand how you feel, as my mother has Alzheimer's and vascular dementia and wasn't coping at home and asked to go into a home. I wanted her to wait a little longer and spend the Summer at home, but she was insistent. Found a lovely place not far from me and with sea views, but then she started asking when she was going home, and didn't believe that she had asked to go there, but I had put her there! In complete denial of her condition, and says memory bad because of her age, 85. The care manager mentioned deprivation of liberty, so trying to get a best interest meeting set up. Already the dementia nurse has been and said she has no capacity to look after her health, but the social worker who has visited seems to think she could go home with robust care package- bit I don't think so! She is now eating good diet, and put on weight and is off the booze! Apparently happy 90 per cent of the time, which was not the case at home - crying lots, and lonely and frightened, so I know she is in the best place for her safety and well being, and can't bear the thought of her returning home, but I now have that possibility hanging over me. I also cannot reason with mum, but I had just begun to think she was settling in there. Still can't make her room more homely as every visit brings up the same question- when are you taking me home? So difficult to cope with! It is good to be able to talk on here with others in a similar situation, as other friends find it difficult to understand the situation. I too am frequently in tears about this, and always on my mind.

 

[Bumble B]

Your post reminds me of the time when I would be in tears leaving the care home after every visit to my mother.
You say there's no sense of reasoning with your mother,and sadly that's the truth. It took me an awfully long time to realise that it was no use spelling things out logically to Mum,because she could only see one point of view,and that was her own.

It's a horrible situation for you,trying to do the best for everyone.
Another consideration is that this situation could go on for a long time.

I'm sorry I can't advise you how to cope with it without getting stressed,I never managed it myself. There doesn't seem to be a simple solution.

If you can,I'd say try to reduce the number of times you visit and accept that they're going to be stressful. The rest of the time,enjoy being with your children. It's not easy,but don't feel guilty. You're doing the best you can for your mother,even if she can't see that herself.

Look after yourself and good luck for the future.

Anne

 

[father ted]

Oh please don't feel guilty. You are doing all you can. Your message resonated with me so much. My mother has Alzheimers and came to live with me 2 years ago. She was a wonderful Mum and we got on so well but since the Alzheimers has taken hold it is very hard. If I don't pander to her every whim I am being 'harsh', 'you are not the person I thought you were', 'don't be cruel to me, I'm not going to live long' etc etc.
I do feel bad too sometimes because from her perspective I am sure I am being unreasonable but from my perspective increasingly I am having to put her first otherwise I am being an evil person.
You are being a good person, visiting her and seeing that she is OK. Don't let your immediate family loose out because you are being stretched too thin. Do what you can manage and know that your predicament is shared by many others. It's because you care deeply that you are soul searching to see if you can do more-but you can't without your family missing out so accept things as they are but don't berate yourself none of it is of your own making.

 

[optocarol]

"I feel that I should repay her for looking after me as a child and feel guilty..."

I'd like to say 2 things:

She chose to have you, not the other way round. I don't mean you shouldn't appreciate what she has done for you and I'm sure you do.

Would you want your children to feel this way about you, if in future you needed care?

 

[zeeeb]

sounds like you need a break. could you take a couple of weeks without seeing her? perhaps that might refresh you a bit.

I, also agree, that you shouldn't feel guilty. She is safe and being cared for. She is getting everything she needs where she is, and she wouldn't be receiving the same treatment, and attention at home, no matter how robust the package would be. she would be on her own, lonely, scared, confused, so really, no better off. i don't think she'd be happier at home, just have different complaints. she'd probably still complain about the carers that come to her home and that you aren't there enough helping.

you aren't alone, and it's true, she decided to have you, and i'm sure the end goal was so that you could love her, and make something of your life, not so she had a personal carer in her old age.

 

[Grannie G]

Hello snoggy1one

I believe your mother is wearing you down with her pleas. Have you asked the staff at the home how she is when you are not there? She might complain to you but could possibly be taking advantage , knowing how guilty you feel.
It might be worth asking the staff how she is.

But whatever they say, you cannot resume responsibility for your mother at the expense of your own health and the quality of your family life. This illness is not your fault and your mother, even with dementia , is being unfair to you. She should not compare her care for you as a child with what she expects from you as an adult . You have your own children to care for. You cannot tear yourself in two.

I would stop trying to reason with her or pacify her. The next time you visit and she complains, I would tell her you wish things could be different but they can`t and if she continues to upset you, you will have to leave.

Then walk away.

I know you will find this even more upsetting and perhaps be unwilling to give it a try. It`s your choice. It might not work but then it might.

 

[Isabella41]

Hi Snoggyone1

Your story reads like my story - and like alot of others on here as well. My mum was not managing at home and was a danger to herself. The social worker and others associated with her care decided in a crisis suituation back in March this year that she should be in a home. Since that time I have gotten exactly the same as you in that every visit has only one topic of conversation and that is "get me out of here". I too have had the guilt laid on thick that I owe it to her to care for her now as she cared for me but as optocarol said she chose to have you, you didn't choose to be born. I also have been told by mum that I am selfish for putting my job and family first and that I should give up work and take her to live with me. Reasoning with her is futile. When I asked her who would pay my mortgage etc if I were to do this her reply was all I think about is money. Incidentially the staff in the home say she is pleasant, happy and interacts with everyone when I am not there. This too seems to be a common thread.

With regard to the issue of capacity I spoke to a solicitor friend yesterday regards this. He said its a real minefield and that one would be hard pressed to find 2 or 3 experts in the field agreeing about capacity in an elderly person. He said in his experience in the early to mid stages of dementia it varies wildly. In mum's case a doctor in March said she didn't have it yet a CPN a few week's ago said she did and therefore they couldn't keep her in the home. The upshot is mum is moving back into sheltered accomodation next week.

Again like you, no matter how hard I try not to let it, mum rules my every waking hour and I even dream about her problems at night. Ithink I've cried so many tears that I could solve the drought problem on my own. Sometimes I cry and I don't even know why I'm crying.

Do keep coming on here. I've found everyone to be wonderful and its the only place I can come where I am not the baddie. I hope you find that too.

Isabella

 

[rajahh]

I agree with the person who said your mother chose to have you you did not choose to be her child.

As a mother myself, I am absolutely sure that I do not ever want to live with my children. I have old them all that I have to go into a home even if I go kicking and screaming.

I brought my children up to have independent lives and to live their lives to the fullo for themselves.

I do not expect the kind of committment that is needed to care for someone with Alzheimers. I love my children too much for that.

There is no real solution to your problem sadly, as your mother is pastreasoning, and this is where I feel it is easy to get yourself uptight.

I do it too to my husband I still try to reason with him and yet Iknow he has no logic at all.

It is cruel, but your young family come first. I would be tempted to visit less and less to be honest.

Love Jeannette

 

[carolyn54]

This could so have been me writing this story. I lost my Mum to dementia in January after she had spent three years in a wonderful Care Home. Every time I visited her she asked over and over again to be able to go home. She asked why we were doing this to her and it took me a while to realise that there was no point in trying to reason with her and tried so hard not let her pleading wear me down. Mum was safe and cared for even though she didn't see it this way.
Guilt has a lot to answer for and I still have moments when I sit and think about how my Mum used to scream our names when we left her after visiting her. Everyone at the home reassured us that she was happy in her own way and got on really well with everyone. Probably seeing us evoked her memories when we were young and don't forget, dementia often regresses sufferers to becoming child-like in their behaviour themselves.
You are doing so much for your Mum by ensuring she is being cared for in the best possible way. No, the guilt will not go away but it will become easier and please try to share every moment you have with your Mum-they will be very precious. You are a brilliant daughter.

 

[sandra21155]

You have done what is best for your mum and your family. My mum would be the excactly the same only she is still in her own home. I could not spend enough time with her to please. I made myself ill this year trying, and thats what will happen to you. Its hard to get your head round constant demands.
I only worked mornings but went straight to mum and tried to be home before my husband but then things got so bad he was always home first. Meals were what ever i could make in 15 minutes. My family were coming second to my mother.
Then I collapsed with physical and emotional exhaustion. And it took me 4 months to get back to normal. If this happened to you , your mum would still be cared for where she is, but what about your family. Who would care for them. I don't mean to frighten you but I thought I was superwoman.
Now I only go into her for 1-2 hours every afternoon, and Wednedays and Saturdays I just call to check she is ok. and she comes to me for Sunday lunch. She is no worst off. But in my mothers words 'I am rarely in'. She still demands , but I have learnt to say no 'I CANT DO THAT'.
You dont mention any brothers or sisters. are you like me the only child?. I think its harder because we feel we have to give 100 per cent.
Why don't you take a few weeks off from your visits. Tell her you are going away even if your not. Its that first step back is the hardest.

Sandra

 

[Chemmy]

Now I only go into her for 1-2 hours every afternoon, and Wednedays and Saturdays I just call to check she is ok. and she comes to me for Sunday lunch.

Gosh, I suspect that's far more than most of us visit.

I agree with the others. Your family comes first, end of story. If the visits aren't benefiting either of you, than I would reduce them dramatically; seeing you might even be the trigger for her distress.

I'd just call in and have a quick chat with staff or phone to see everything's OK for the next month and see if that calms things down. When you consider it, if you were carted of to hospital for a month, she have to cope without seeing you then. AND SHE'D BE FINE ...so what's the difference?

Treat the time off as respite for you and your family and rebuild your relationship with them.

 

[AnnieS]

I could have written exactly the same post myself last night, after a particularly stressful visit with my mum. She gets absolutely FURIOUS that she isn't allowed out on her own and won't let it go. Reasoning, I agree, does not help at all, just makes things worse, but it is so hard to think of something to say when she just keeps coming at you with the same old stuff - 'I was fine before I moved here, how dare people tell me that I can't go out, I'm 82 and have worked hard all my life and now you tell me I have to stay here, I'm leaving whether you help me or not!' On and on and on ......
Stay strong, it's the effects of this disease and nothing you do will make her happy.
X

 

[Chemmy]

...nothing you do will make her happy.

She simply wants her old, pre-dementia life back and that is impossible.

It might not seem much consolation at this stage of their illness - but this is a stage and it will pass. My mum eventually ended up contented - not happy with, but seemingly accepting of her situation and that made it much easier to like her again.

 

[Moonflower]

I found your post very comforting Chemmy

I visit my Mum every day, and she complains so much - at the moment she is very focussed on not being allowed out on her own (other than into the garden)

What she wants is her old life back, and that's just not possible.
I hope this does pass, I would love to see her at least content if happiness isn't possible

 

[reno]

I feel grateful to all who contributed to this thread - and it's not even my thread!

I had to get my partner to sit down with me the other night after a CH visit and go through, rationally, the reasons why we couldn't look after mum at home. I felt so guilty that I wasn't doing more for her. He did a pretty good job of coming up with real reasons (I'd have to stop work, we'd have to move house, I'd end up getting frustrated and losing my rag with her, which I don't at present ...)

To my mind, it all boils down the happiness thing. We feel responsible for their happines, and they are in a situation where they can't have everything they want, so therefore can never be 100% happy. And if you are an only child, and your mum has no other visitors (just, for the sake of an example ) then you feel that you are totally and exclusively responsible for their happiness, and that is a hard load to carry.
So conversation with OH concluded with me concluding that I am always going to feel cr*p about the situation and that for MY peace of mind, I need, to some extent, to come to terms with that - to accept the fact that *I'm* never going to feel great about it either ..

My heart goes out to everyone in this no-win situation

 

[jenniferpa]

Reno - I think that is very wise. I was in much the same position and came to much the same conclusion. Sometimes, with the best will in the world, you simply can't do what your heart would like you to do, and if you can really come to understand that, it will be better for you and everyone around you.

 

[godfrey66]

You are not alone

I have not slept after my latest visit to my father. This is my second time on the site. I have read everything here in tears and yes this is my life too. I had little help/advice after my dad got knocked off his bike as he was self funded they said put him in respite. I chose to move him to where I live as he said he wanted to be near me. He lasted a month before the care home said he would be better back where he lived as every day he was saying he would rather be dead every day. I was visiting everyday apart from my two week much needed holiday. Since moving him back to a home in his home town now a 5 hour round trip his mental health has deteriated.He thinks he has been locked up till hes dead and is cross with me. There is no way he could function without 24 supervision. I too am ridden with guilt and exhausted mentally and physically and am the only child. Reading the forum does not solve anything but makes me realise I am not alone. Thankyou