Torn in two with guilt

[gillieb]

Don't feel guilty

I really sympathise with how you feel. I had to put my Godmother into a home because of her dementia and felt like a criminal. I did a course at the local hospital memory clinic to understand the illness and it really helped. I had set days for visits and trips and other days for my family. I got to know the care home staff well and trusted them implicitly. I knew that my auntie was loved and cared for when I wasn't there. Once you understand what the illness does to people and how it makes them behave it is much easier to detach yourself emotionally from the guilt feelings. My auntie died after nearly four years in care and I still miss her but I recognised early on that Firstly I could not care for her around the clock as well as the dedicated nursing staff and secondly my family needed me too.
My Dad also has Alzheimer's and is cared for by my Mum with a lot of support from me and my husband. Dad can be very difficult and has had a complete personality change but because I know this is part of the illness and not wilful it is somehow easier to deal with. I try to talk to him about how he is feeing and approach his illness head on. If he is difficult or confused then I try to adopt an adult role rather than that of a daughter(junior). I supposed I have learned to detach my emotion as a coping mechanism. I know that my Dad would not want me, my marriage or my children to be adversely affected by his illness (we are a very close family and I love him to bits) but he is coming to the end of his life and it must not damage the lives of his grandchildren.
This may all make me sound very hard but getting professional advice, help and training was the best thing I ever did. I also eventually persuaded my mum to do the course and it did help her to meet with other carers in the same situation. I hope that you can find some help in your area. Our local memory clinic and the local Alzheimer's branch are fantastic. Ask for help.

 

[JaniceMarjorie]

My Mum has vascular dementia which has escallated incredibly in the 6 months she has been in the Care Home. The Care Home is lovely and so caring and we feel we have chosen a good one. We moved her there on the suggestion of the GP because she was becoming a danger to herself. My sister and I try to go in every day or every other and mostly all she says is she wants to die or 'take me home' or 'please dont leave me'. She has tried various ploys to get us to stay and eventually we leave and break down in tears outside in the car park. We both work and her pitiful pleas break our hearts. She used to be outgoing, sociable and ready for a laugh and fun. Now she will do nothing and has started to become aggressive. We continuously tell her we love her and sometimes she says she loves us too but seeing her there so forlorn and unhappy makes me feel so guilty. She is always on my mind and I always feel I have a dark cloud hanging over me and it wont pass until she does. If only she could understand how hard this is for us all.

 

[petromany]

petromany

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

So sorry about your Mum, my husband is in complete denial, and it is very hard to cope I know, he isnt in a care home as yet, but I find every day is more difficult than the next, annd things really get on top of you. Please do not feel guilty, and perhaps, as others have said, give yourself a break and not visit so often. I am just trying to get respite care at the moment, he thinks he can stay in the house with a dog to cope with !!! all by himself, and absolutely can manage everything. One wonders sometimes what I do do for him , !! but I know I will have a problem getting him in just foor 1 week. Oh it is so heatbreaking isnt it, but take care of yourself and your family first, as probably when you leave the home, she will forget the nasty remarks she has made. take care..

 

[memo]

guilty

my mam went into restbite within three weeks she became constipated with soiled underwear..her stomach was so swollen she was refusing food .i constantly asked the doctor what are they going to do about it .the reply was overflow to constipation.i wanted to take her home,but the answer was that she should have more assesment.three weeks later she died of peritonitus her bowel ruptured .i gave my job as manageress to look after her for three years,, and yes it was hard , but i would do it all again and i feel so hurt and guilty that for leaving her go into restbite. i miss her so much it,s three years now february she died in great pain. if she was home i would have taken better care than the hospital.if only is what i keep saying. theres nothing like your mother so i would say take care of her now or else the day will come that you will feel so guilty and depressed and so angry as i have been . it took me three years of investigations but it was all worth it .

 

[mummy1]

Guilt

My heart goes out to you, this is a terrible dilema that many of us on this site know only to well. Please remember when things get bad that you have done the best for your family and your mum. Your mum needs looking after but your children need you. There is no simple answer to this but please do not ever feel guilty for putting your children first and if your mother didn't have this terrible disease she would agree with you i'm sure. My FIL very often says things to my husband to make him feel guilty and can say some very hurtful things just to get a reaction. It would seem that telling loved ones to stay away unless they get what they want is common. This is also very hurtful for us to hear. When my FIL had said this to us many many times my Husband decided to stay away for a couple of days my FIL then became very sulky and aggressive. However this did work and now he only says it occasionally but he does say other things instead. Caring for someone with alzheimers is difficult and very stressful. Please do not feel guilty for sheltering your children from this horrendous disease because if your mother lived with you they would see everything including things they don't need to. I probably haven't been much help but sometimes it's good to know your not alone and other people understand how all consuming this is. It isn't just the person with the illness that suffers. Good luck to you and your family x

 

[Chemmy]

I probably haven't been much help x

Oh, I think you have, Mummy1 I would protect my children from the worst aspects of AD too.

Welcome to Talking Point.

 

[Dol]

All terribly familiar

All I can say, now my mother is at last 'settled' in her care home she is thriving in a way she was not when in her own home with carers or with me. When I asked my ex-father in law, who has run a dementia hospital in his time as well as having to deal with people with this dreadful disease in his family - he said 'whatever you do, do not let your mother live with you'. I tried this and it put a huge strain on my marriage and crippled my business. Ultimately it did not help my mother as she did not know where she was. She became confused, incontinent, was up all night ransacking cupboards and spent the days leaving the house but going no where (I had to pay a carer to follow her and bring her back). At first she did not want to stay in the home and called it 'a prison' (it is an exceptionally nice home - top rate I would say) and this devastated me. Now she will not leave it to go out with me. She is less anxious, participates in her own way and has moments of enjoyment e.g. music, cooked breakfast, ice cream. I still feel 'guilty' but I think this is because we think of dementias as 'old age' and not the crippling diseases they are.

 

[martinjohn]

hello to all who care for us who suffer with alzheimers and dementia i can only say to you all stop feeling guilty over something you have no control over just be there when you can do what you can and when sometimes we who have alzheimers are not the people we used to be we change in so many different ways forget so many things i hate it for what it has done to me but mainly to my wife and kids they see all the changes i dont and the last thing i would want is them feeling guilty we talk about the desease and when the time comes do what they have to but more importantly lead their own lives enjoy their own familys i unfortunately wont know any difference i wont hurt like them so as hard as it might be you must get on with your lives sorry if some of this makes no sense i love my family with all my heart and while i can i want to make sure they enjoy their own lives and not let mine take over theirs thankyou for your time martinjohn i am 57 on medication and have a nurse who visits weekly and is a godsend to me and my family just hang in there but take time for yourselfs

 

[carastro]

A very heart wrenching thread. I hope the original poster finds some good advice on here and she can find a way to deal with her guilt.

My mum is in a CH and never understands why she has to be there and sometimes asks to go home and sometimes she telephones me and asks me to take her Home, that one always upsets me. But on the whole she seems to accept me telling her she is not safe on her own and doesn't make a huge issue so I am not as unfortunate as some of the ladies on here (at least not at the moment).

I do my best to give her some variety and I visit her most days for up to a couple of hours, or take her out somewhere. A week ago I took her to a family wedding and she had a lovely time, but two days later she couldn't remember a thing about it, so sometimes I wonder whether the effort of taking her somewhere is worth it, but she does enjoy these outings at the time.

I would be interested to find out how I can go about dementia training as suggested by Care Manager, I have not heard of this before and did not know it was available. I could really benefit from understanding the illness better.

Carastro

 

[Chemmy]

Martinjohn, that makes perfect sense and thank you so much for posting it. Your words will be a huge comfort to many people on this forum who are doing their best but are still feeling guilty.

 

[Chemmy]

I would be interested to find out how I can go about dementia training as suggested by Care Manager, I have not heard of this before and did not know it was available. I could really benefit from understanding the illness better.

Carastro

Try contacting your local Alzheimer's Society branch. I went to one of their seminars and it was very worthwhile.

 

[Dol]

Thank you Martin John for joining in this thread.

 

[dottyd]

another only child here-it sucks doesn't it?

 

[mabel888]

would it help to talk to the staff at the care home? they should be experienced in dealing with issus like this. maybe they can make an effort to interest your mother in some activities, or make her feel more at home in other ways? they should be meeting all her needs - mental and social, as well as physical, and if she's distressed they should be looking into this to see what they can do to help her. it might be worth discussing this with the manager to see what can be done

and please don't feel guilty - you are obviously doing your best for you mum and are a good daughter, but you do have to balance your mum's needs with your own life/responsibilities/sanity or both of you will end up unhappy and stressed

take care x

 

[Pheath]

Am so sorry for your situation with your mum and understand completely the anguished feelings you’re going through. Not every person settles well into CH life and it’s truly awful for relatives to witness the unhappiness and distress when moves don’t go well. We are also going through a very turbulent period with dad who is now advanced but isn’t settling that well and has been aggressive, partly though we think due to med changes but also just due to his illness. I find my thoughts are constantly dominated by him and it really does get me down and is adversely effecting other areas of my life. We were so hoping that a CH would be the answer to things as have so often been told that you can then enjoy ‘quality time’ when you visit but it really isn’t like that at all at present with dad often agitated and unhappy, wanting to go home. Today after another bad visit I just went up to his bedroom, lay on his bed and cried my eyes out. I try to be strong a lot of the time but more often recently just feel wobbly. It’s just all so painful and would do anything for him to be happier there. Still what choice do we have but continue this uphill journey and just have hope that one day things might be a bit better. You’re doing brilliantly well for your mum and can give no more, please don't feel guilty - a CH is more often than not, the only option where there is no option.

 

[rajahh]

MartinJohn I too thank you for posting here. I struggle daily with the dilemma of telling lies to my husband, . I spend many hours in turmoil, and tears and you have helped me tonight. I hope I can carry your words in my heart and then it will allow me to do and say the things I have to to keep my husband feeling safe and contented.

Jeannette

 

[webcat]

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...

Dear snoggy1one, bless you, you are having such a horrible time, for good decent people there is nothing much worse than guilt of this kind, being made to feel like you are not doing enough for your most loved ones. I hope you can take a little heart from my story;

For the last 3 or 4 years of the 7 I have been caring for Mum in her own home, when I take her into her much loved garden for tea after a while she will start to cry quietly and ask me when we are going home. It doesnt matter what I say at this point, she wont believe me that she IS home. When we go back inside it can take anything from a couple of hours or even after a nights sleep (I use that term loosely of course) for her not to beg and plead and cry for me to take her home. She cant say where this other more longed-for home of hers is - just keeps saying 'No, the other one!' it isnt her childhood home she is wanting, and its not that she doesnt recognise her own things because she does, but something else goes on that robs her of feeling 'at home' when she is.

I may be going down the route that all sons/daughters wish they would be able to do, but even so I am not free of feeling guilty, even though I am keeping her in her own home, because I have to earn a living I cant sit with her hour after hour like the other carers can, she cries that all she wants is me to be beside her 42/7 and not sitting at my computer trying to webdesign or cooking in the kitchen, or unblocking the drains outside (a lovely task I had yesterday).

I guess what I am trying to say is that it doesnt matter how much you do in thier eyes, because thier eyes are no longer seeing the truth. You have to keep on telling yourself that your Mum is ill and is unable to understand anymore. YOU KNOW the real truth is that if your Mum was well the last thing she would want would be for you to sacrifice your own family for her, and certainly not to crucify yourself with guilt for doing the best thing you can for everyone concerned. Try in your mind to seperate this illness from the Mum you know and love, because the sooner you can do that, the less the things she says will impact on you. Keep strong, you know you are doing the very best you can for everyone x

 

[Charizomai]

My little Bit...

I have been so fortunate I know... My own mom did not want to go to any other place after my dad passed away, but she reluctantly settled in to a home in a rural town not to far from the city where I live.

She also asked to go with me home in the beginning, but later accepted where whe was. I believe she did it for my sake. There is one bit of experience I could share, which is to not spend too much time on arguing logically. It is a waste of energy really. Try and walk around in the garden, listen to music or tell her you want to watch a favourite movie with her. Focus on enjoying the new environment a bit if possible.

Also, it may help to visit a bit less in the beginning so she can settle in. This is different for all people...

 

[safari]

I Know what you are going through , my mum is 89 and still living on her own and has early dementia , and like your mum makes me feel guilty all the time it makes me feel exausted , as she will not except any outside help and only wants me and my sister as company . in the end you must back off for your own sanity and health . Mums can be very manipulative and negative . I have given up trying to reason with my mum as you get nowhere also she is very negative about everything which gets so depressing . my mum will not go to any dementia clubs or have any help at home . so now my sister and I have stopped fighting her and just agree with her so she does not have confrontation with us all the time . So next time your mum says do not visit anymore just try saying ok , its hard but sometimes it works when they do not get any reaction from you . and then try and get a set time for visiting that suits you and your family. The guilt does not go away but they will play on it , so you must let her know it does not work and you are less likely to visit if she behaves this way , and as for you owing her for looking after you as a child they all say this so try to ignore this . But I have found that trying to not have confrontation with my mum and telling her how she can be so nasty to me has helped a bit . I feel so sorry for you and your family , but I do think some structure for visiting would help , and not just you friends other family members etc dont try and do everything yourself , as I have found out It will never be enough so start thinking of your self and your family . And I am sure if your mum does not get a reaction from you hopefully she will start to appreciate you a bit more .

 

[Eowen345]

They don't remember what they say.

My mum is the same.She is 90 and has been in her CH for over a year. I visit once a week. Every visit is one long complaint. She hates it, she never gets anything to eat or drink, she sees no one/ theres no one there to talk to/ she doesn't want to talk to them. She won't watch her TV or listen to the radio, won't look at magazines, has taken all her photos off the wall and spends most of her time in her room. She says she is perfectly well & healthy & does not need to be there.

She goes through sad, angry, bitter & usually finishes with ways she will kill herself & we'll " All be happy & wearing black"

I'm not heartless, I know her life hasn't much quality to it, but I know what would happen if she lived with me & my OH. I would be expected to put her first, my OH, children & grandchildren would be considered a nuisance that took me away from her & what she wants.

Bottom line is, I will not sacrifice my family for my mum. I manage the guilt because there is no other way.

Lin x

Your must not put her first. The disease is such that they may say all these things but by the very nature of AD they repeat again and again. Their memory or often rather lack of it produces this theme of going on and on and on about something, in your case 'going home' I doubt that she actually realises what she is saying, also cognitively she is not able to reason her demands. She sees you and that triggers her obsessions. You have done the right thing. Remember not one of us here wanted our dear beloveds to be cursed with this filthy disease

My husband started it at 59,he is so ill now at 64 he knows nobody, can barely speak and just shuffles about all day muttering garbage. He is in the best place possible because on a bad day it can take three carers to help him. I just want him to die. Why should this gentle soul who was my friend as well as my husband suffer so insidiously? I can do nothing for him and now there is not even a flicker of recognition when I visit, he just stares past me at some imaginary object in the background. I visit less and less because it's so distressing, but, and here's the rub he is never out of my thoughts. And as long as he is alive I cannot move on in my life
Everyone here in different ways supports each other.