Mum was diagnosed 5 years ago, I left work and became her sole carer until 6 months ago when she went into a care home due to safety concerns (she had started to wander, looking for 'home'). I've always thought of myself as a strong person; could handle anything but this situation has badly affected me and no-one seems to understand. I am the only daughter and my two brothers live and work away so only see mum once in a while. They are relieved she's in a care home and seem to be coping well. I'm devastated. I fought to get her the best care and setting in the area and thought I'd have some peace in doing so but I actually feel worse. I feel guilty all the time. Friends and family re-assure me I've done a great job for mum but it's no use - my world has shifted and I'm frightened and heartbroken all the time. Mum still knows me and she has good and bad days - she's always telling me she loves me and thanks me for being her rock but I just come away and cry all the way home. People don't recognise me anymore - I don't recognise myself! I don't want to bore people around me with this all the time; they just don't get it. It's been the hardest thing I've done in my life and the responsibility has been terrifying. My poor mum is fading away and I'm moaning about me - there goes the guilt again!
Mum has Alzheimer's and it's killing me
- Thread starter Verita5
- Start date
Mum was diagnosed 5 years ago, I left work and became her sole carer until 6 months ago when she went into a care home due to safety concerns (she had started to wander, looking for 'home'). I've always thought of myself as a strong person; could handle anything but this situation has badly affected me and no-one seems to understand. I am the only daughter and my two brothers live and work away so only see mum once in a while. They are relieved she's in a care home and seem to be coping well. I'm devastated. I fought to get her the best care and setting in the area and thought I'd have some peace in doing so but I actually feel worse. I feel guilty all the time. Friends and family re-assure me I've done a great job for mum but it's no use - my world has shifted and I'm frightened and heartbroken all the time. Mum still knows me and she has good and bad days - she's always telling me she loves me and thanks me for being her rock but I just come away and cry all the way home. People don't recognise me anymore - I don't recognise myself! I don't want to bore people around me with this all the time; they just don't get it. It's been the hardest thing I've done in my life and the responsibility has been terrifying. My poor mum is fading away and I'm moaning about me - there goes the guilt again!
Verita - there are many of us here on TP feeling the same way. It may not help you in this moment in time to hear that but it might help you to hear that you are not alone in feeling the way you do.
It's been a kind of double bereavement over the last 5 years hasn't it? You're grieving and you're probably also still tired out and stressed from caring for your Mum all that time.
Please keep on reminding yourself you're a loving daughter who's done her best for her Mum. To the extent anyone ever achieves even a partial win against this disease
, you've not done at all badly. Your Mum's safe and happy in a home she likes - because of your hard work. It could have turned out so much worse ... your Mum might have come to grief while wandering, for example.
You've no reason to feel guilty. Please cut yourself some slack.
Please keep on reminding yourself you're a loving daughter who's done her best for her Mum. To the extent anyone ever achieves even a partial win against this disease
, you've not done at all badly. Your Mum's safe and happy in a home she likes - because of your hard work. It could have turned out so much worse ... your Mum might have come to grief while wandering, for example. You've no reason to feel guilty. Please cut yourself some slack.
Have you thought about visiting your GP? He could give you something for depression and refer you to counselling. You need to get yourself better, then you'll be able to visit your mum guilt- and tear-free, because you have done nothing wrong, you have done the best for your Mum and she loves you.
It does help - I know I'm one of many when I read the other posts here. It's possibly my only comfort at the minute. Thank you for replying.
It's been a kind of double bereavement over the last 5 years hasn't it? You're grieving and you're probably also still tired out and stressed from caring for your Mum all that time.
Please keep on reminding yourself you're a loving daughter who's done her best for her Mum. To the extent anyone ever achieves even a partial win against this disease
You've no reason to feel guilty. Please cut yourself some slack.
You're exactly right - I feel like I've lost her many times. Recently my friend lost her 81 year old mother suddenly; she just went to bed and never woke up. I found myself wishing that had happened to mum - how sad is that?!! It makes you think things you never thought you would and that's where the guilt builds up. You're also right about her being safe (and fairly happy in her ignorance) in the care home; she could be so much worse off. Thank you for your response, it's much appreciated.
I did self-refer to counselling and got a rubbish CBT counsellor who couldn't understand the whole 'carer burden'; she said I had to pick a specific topic to focus on. It really didn't help and made me more stressed. I do think the right counselling can be beneficial though - I may try again and ask for a different type of counselling and see my GP if this mood doesn't lift. Thank you so much for replying, it helps.
hello Verita5
a warm welcome to TP where, as you're discovering, there are many of us who recognise and understand what you describe in your post
these words especially rang bells for me
so gently, a little at a time, give yourself permission to breath more freely knowing you've done well by your mum and you now have a team around you both to take on the physical side of the caring for her, so you can find again yourself as her loving daughter and independent woman
you have every right to come here and talk about you; you matter
best wishes
a warm welcome to TP where, as you're discovering, there are many of us who recognise and understand what you describe in your post
these words especially rang bells for me
as a carer it's so hard to allow yourself to relax and let others take the strain, as for so long you just haven't dared, fearing that if you loosened any control everything would fall apart
so gently, a little at a time, give yourself permission to breath more freely knowing you've done well by your mum and you now have a team around you both to take on the physical side of the caring for her, so you can find again yourself as her loving daughter and independent woman
you have every right to come here and talk about you; you matter
best wishes
So sorry to hear of your troubles.
Don't give up on the counselling as sometimes there can be a conflict of personalities and maybe you need to try someone different.
I have had two counsellors. The first had a relative with dementia but was totally useless and quite unhelpful. She would let me have a rant (I can do that here) but never really offered me anything constructive.
The second was a lot younger but was brilliant. She had never had anything to do with dementia apart from her training but she was very caring and was immensely helpful.
You really sound down in the worst possible way but there is professional help out there if you persist. See your GP and see if they can't recommend someone they have used before.
Someone mentioned bereavement and I guess you are going through a form of it....although they are still with you and every time you visit you probably go through the process again.
Being a carer means you give up your life....your 'self-image' and create a new one as a 'carer'. Now that carer 'self-image' has been taken away and you will have to find a new 'self' to replace the old. Loss of 'self-image' at any age can be devastating....it's the bereavement thing I suppose.
I guess it's a case of making small steps. Think about all the positives from your 6 'caring' years. Your experiences will have made you stronger in ways you probably don't realise.
Take care.
PS I don't really know what I am talking about and my theory about 'self-image' may be wide of the mark. A good counsellor is definitely worth finding though.
Being a carer means you give up your life....your 'self-image' and create a new one as a 'carer'. Now that carer 'self-image' has been taken away and you will have to find a new 'self' to replace the old. Loss of 'self-image' at any age can be devastating....it's the bereavement thing I suppose.
I guess it's a case of making small steps. Think about all the positives from your 6 'caring' years. Your experiences will have made you stronger in ways you probably don't realise.
Take care.
PS I don't really know what I am talking about and my theory about 'self-image' may be wide of the mark. A good counsellor is definitely worth finding though.
Guilt
I feel for, I really do.
It s almost carbon copy of my situation. I have my Mum and Dad in this situation. You have been on this situation now for a long time- getting on with it because that's what you do and its exhausting mentally as well as physically. I also get that people around you tire of hearing about it because they don't really understand- how can they?
I wish I could magic a solution to guilt, but no one can. I try to think what they would have said to me 20 years ago when they were my age. They would have told me to get on with my life and that they never wanted to be a burden to me and they wanted me just to be happy. To do the best I could and no one could ask for more.
That gives me comfort knowing that. It doesn't take away the guilt but it does help me rationalise it.
I feel for, I really do.
It s almost carbon copy of my situation. I have my Mum and Dad in this situation. You have been on this situation now for a long time- getting on with it because that's what you do and its exhausting mentally as well as physically. I also get that people around you tire of hearing about it because they don't really understand- how can they?
I wish I could magic a solution to guilt, but no one can. I try to think what they would have said to me 20 years ago when they were my age. They would have told me to get on with my life and that they never wanted to be a burden to me and they wanted me just to be happy. To do the best I could and no one could ask for more.
That gives me comfort knowing that. It doesn't take away the guilt but it does help me rationalise it.
Sorry to hear your story. It is a very familiar one. You have, literally, spent all your energy and effort into to caring for your mum. You are also grieving.
Your mum is safe - and - most importantly - happy. It is now time to start re-building your life. With your energy so low it is going to take time. How do you eat and elephant? Start with the first bite. That might be a general health check - iron levels and so on. Definitely ask for a different counsellor. It is all about personal chemistry.
Other things to think of are to slowly start re-doing the things you used to enjoy doing. Just bit by bit.
As you are probably physically low, you could look into massage or reflexology. The local Further Ed colleges are always looking for people to practice on so it is cheaper.
At least summer is on its way and you can get out more. I also found Rescue Remedy, when things are bad, a real help.
Take care of yourself.
Your mum is safe - and - most importantly - happy. It is now time to start re-building your life. With your energy so low it is going to take time. How do you eat and elephant? Start with the first bite. That might be a general health check - iron levels and so on. Definitely ask for a different counsellor. It is all about personal chemistry.
Other things to think of are to slowly start re-doing the things you used to enjoy doing. Just bit by bit.
As you are probably physically low, you could look into massage or reflexology. The local Further Ed colleges are always looking for people to practice on so it is cheaper.
At least summer is on its way and you can get out more. I also found Rescue Remedy, when things are bad, a real help.
Take care of yourself.
Hi, I so understand where you are coming from. My Mum too has Alzheimer's, for the last 5 years I have visited. twice a week, arrange meals, money carers etc,etc. I have now way hit rock bottom and have had to go the the Gp ( should have done so before)! and am on anti depressants, Am looking for care homes for Mum as while she is still can do a lot for herself she is anxious and often alone a lot. I already feel the guilt building as I look for care homes. I hoping we won't have to wait too long.... and to persuade her this will be a good move for her.
Takes some deep breaths and try and enjoy the sunshine, .... if it isn't sunny where you are today. best wishes.
Takes some deep breaths and try and enjoy the sunshine, .... if it isn't sunny where you are today. best wishes.
Mum in a Home but I'm still her carer
I too, relate to the sadness and helplessness caused by dementia. I looked after my mum since 2011/12, much of that full time until she went into a Home 15 months ago as she was trying to get out, didn't sleep and needed to be with someone 24 x 7, mostly me. However, I still regard myself as a carer and visit up to 5 hours a day 6 days a week. I tried to pull back but mum is so lost and distressed that I need to. She often dosent know who I am and calls out for me even when I'm right there. The Home are trying to help but it is distressing for staff as they can't help and other residents too so at least i can take her to her room or out to give them some peace. She is calling out please help me and other more incoherent sentences, making sobbing noises virtually all the time. I bring her things she might eat as she won't touch her food in the Home or drink much. If your mum seems happy in the Home, that is something to feel good about although I know it's not as simple as that. I do agree that it is essential you try and relax and live your life but as you can see I can't do this myself even though everyone tells me I should. I would like to think I could if my mum was more settled but.... My brother has a severe learning disability and autism and I visit him too but it's a pleasure as he is happy and there is hope. I think dementia must be one of the worst, if not the worst condition and it's so unpredictable. No one suffers in the same way - some poor suffers become aggressive which is upsetting for close relatives. I think maybe our mums and dads are the lucky ones as they do have us. I am not sure the next generation will be so understanding - let us hope for a cure.
I too, relate to the sadness and helplessness caused by dementia. I looked after my mum since 2011/12, much of that full time until she went into a Home 15 months ago as she was trying to get out, didn't sleep and needed to be with someone 24 x 7, mostly me. However, I still regard myself as a carer and visit up to 5 hours a day 6 days a week. I tried to pull back but mum is so lost and distressed that I need to. She often dosent know who I am and calls out for me even when I'm right there. The Home are trying to help but it is distressing for staff as they can't help and other residents too so at least i can take her to her room or out to give them some peace. She is calling out please help me and other more incoherent sentences, making sobbing noises virtually all the time. I bring her things she might eat as she won't touch her food in the Home or drink much. If your mum seems happy in the Home, that is something to feel good about although I know it's not as simple as that. I do agree that it is essential you try and relax and live your life but as you can see I can't do this myself even though everyone tells me I should. I would like to think I could if my mum was more settled but.... My brother has a severe learning disability and autism and I visit him too but it's a pleasure as he is happy and there is hope. I think dementia must be one of the worst, if not the worst condition and it's so unpredictable. No one suffers in the same way - some poor suffers become aggressive which is upsetting for close relatives. I think maybe our mums and dads are the lucky ones as they do have us. I am not sure the next generation will be so understanding - let us hope for a cure.
I know how you feel, my Mum would hate how she is now, and it's horrible to see her in a nursing home, although she is still alive, I lost my Mum to Dementia a year ago, and I miss her..... and after a bad visit the guilt monster regularly whispers in my ear... I have to remember that she is safe now & well cared for and then I give that monster a whack! Big hugs.
Lorna x
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Hi, no you aren't wide of the mark - your words really resonated with me. I gave up my life for a long time to become a carer and I guess I have to learn to become me again - that totally makes sense - and it didn't happen overnight so it'll probably take a while. I've neglected myself massively; would feel the guilt if I ever tried to do anything, go anyway (even for lunch) without her. I also made sure she had a good diet but I've eaten rubbish for years (probably comfort eating). What you said about learning things over these years is also true - I've learned a lot about the disease, it's affects but also about myself as I took on the caring role. It hasn't all been negative, in hindsight, so thank you for pointing that out, it has made me feel the time wasn't about just 'putting out fires' and understanding dementia but also about learning patience (I had very little starting out) and maybe becoming a better person. Thanks for taking the time to respond, it really helps.
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I'm so glad it wasn't just me - I thought I was being awkward but maybe it's just about having a rapport with the person - if you haven't got that how can they help you? I will definitely consider counselling again because I believe it can work 'with the right counsellor'. Many thanks for replying.
Thank you so much for replying - I am going to try to work as hard on adapting and moving on as I did to becoming a good carer for mum. I feel better having posted this last night; the response has been so helpful.
So sorry to hear you have both of your parents going through this. I've actually found it more mentally exhausting than physically because I never seem to switch off and my sleeping pattern has been poor for years. Of course everything seems worse when you're not sleeping well - so that's maybe something I need to work on.. My mum said to me a couple of days ago 'If it's all getting too much, just cut it off' (what she was trying to say was 'Don't get stressed over me, get on with your life'). Baby steps I think, but I will try to get a better balance going forward. Thank you and good luck with your situation too.
Thank you - this is my first post (having only been a 'reader' for a few years) and the replies have been so helpful. It seems like I've overcome and managed all of the many issues surrounding mum over the years but now have to start working on me as well.... Difficult to adjust but I am going to try. Thanks again for the warm welcome.
