alone

[Lulu]

Feel alone

Mum, many years from dementia diagnosis, 12 years, but probably suffered longer. Due to behaviour, especially during the night when she refused to go to bed and was hostile and aggressive – for a long time – we were exhausted, as she lived in our home – went into EMI nursing care almost a year ago. Services to help at home were ineffective or non-existent, and it was only in desperation that we placed her into care.

Her demeanour has not improved since going into care. Her moods are still volatile and very changeable. She began to lose weight form the minute she went into care, refusing to eat or drink. The Home said that this was a consequence of the disease process. I agree that this could be the case, but for the fact that it all coincided with admission to a home. She enjoyed her meals, eatne normally at the table up until she left. My mum would never have wanted to be there. Weight has continued to drop off her, though she has now started to eat again, albeit a soft diet, but body mass is being lost and she looks skeletal.

Confusion is much worse and again I am told that this is the face of dementia. I know that. But niggling away in the background is the fact that she would never have chosen to go there; that all she ever wanted was to be with us. I think it would have continued on its slow course, that she would still be eating as well as she used to eat …and I have caused her downward spiral which has happened since admission. That her continued distress is down to decisions taken on her behalf.

I am trying to be what my family wants me to be – free and with more time to do what I want to do. I have given them more time to follow their dreams, and not be constantly concerned for me trying to care for Mum. I cry when alone. Just briefly so nobody knows. Outwardly I am bright and happy. Staff at the Home ask, ‘hello, how are you today?’ when I visit. ‘Oh fine’, I reply. But it is not fine. Whichever way I look at it, and however much the staff ‘love’ my Mum, it will never be the same as her being with me,, will it? I know she wants to be with us, that is all she wanted. And I have let her down. Why couldn’t I keep her here with me? Others do.

 

[Wolfsgirl]

I am so sorry to hear how you feel. It may help you to know my Mum has been in care for 18 mths but has steadily started losing weight for only the past 6 mths. She doesn't ever feel hungry, refuses food, almost passed away in May (we were given days perhaps a couple of weeks) and yet she is still hanging on, eating a little more than she was before.

I honestly think you cannot stop the illness by being in her presence and it is not your fault, easy for me to say as I also have guilty feelings, although I do my best for her. I worry more about my Mum than I ever did about my children I am sure!

Take care of you, x





She is still in the CH, nothing has changed e

Feel alone

Mum, many years from dementia diagnosis, 12 years, but probably suffered longer. Due to behaviour, especially during the night when she refused to go to bed and was hostile and aggressive – for a long time – we were exhausted, as she lived in our home – went into EMI nursing care almost a year ago. Services to help at home were ineffective or non-existent, and it was only in desperation that we placed her into care.

Her demeanour has not improved since going into care. Her moods are still volatile and very changeable. She began to lose weight form the minute she went into care, refusing to eat or drink. The Home said that this was a consequence of the disease process. I agree that this could be the case, but for the fact that it all coincided with admission to a home. She enjoyed her meals, eatne normally at the table up until she left. My mum would never have wanted to be there. Weight has continued to drop off her, though she has now started to eat again, albeit a soft diet, but body mass is being lost and she looks skeletal.

Confusion is much worse and again I am told that this is the face of dementia. I know that. But niggling away in the background is the fact that she would never have chosen to go there; that all she ever wanted was to be with us. I think it would have continued on its slow course, that she would still be eating as well as she used to eat …and I have caused her downward spiral which has happened since admission. That her continued distress is down to decisions taken on her behalf.

I am trying to be what my family wants me to be – free and with more time to do what I want to do. I have given them more time to follow their dreams, and not be constantly concerned for me trying to care for Mum. I cry when alone. Just briefly so nobody knows. Outwardly I am bright and happy. Staff at the Home ask, ‘hello, how are you today?’ when I visit. ‘Oh fine’, I reply. But it is not fine. Whichever way I look at it, and however much the staff ‘love’ my Mum, it will never be the same as her being with me,, will it? I know she wants to be with us, that is all she wanted. And I have let her down. Why couldn’t I keep her here with me? Others do.

 

[Dazmum]

I am sorry you feel so sad about this Lulu, understandably. Not everyone can keep their loved one at home, I couldn't, although we did our best. My mum started to wander, get up and come into our rooms at night, forget to eat if we weren't there and was increasingly anxious at not being able to remember where she was.

The wandering and then her having a fall at home was the catalyst. I looked at my son's shocked and anxious face and thought, we can't do this any more. Mum went to respite and stayed. It was the most stressful time, and I will always feel guilty, but the fact remains that I couldn't keep her safe and caring for her in the way that I needed to was just not possible.

I think it took me the best part of a year to feel relaxed about going out of the house without having to worry or watch the clock. I still have a little cry in the car on the way home from seeing her if she has been sad or I just feel plain bad at leaving her behind. But I know that she is safe which is the main thing, and well looked after, and has company, and that's all that I can ask for. It's not ideal, but it's the best that I'm able to do, and its also the best that you can too for all concerned. Hugs for you, because I do know how it feels x

 

[halojones]

Hello Lulu

Feel alone

Mum, many years from dementia diagnosis, 12 years, but probably suffered longer. Due to behaviour, especially during the night when she refused to go to bed and was hostile and aggressive – for a long time – we were exhausted, as she lived in our home – went into EMI nursing care almost a year ago. Services to help at home were ineffective or non-existent, and it was only in desperation that we placed her into care.

Her demeanour has not improved since going into care. Her moods are still volatile and very changeable. She began to lose weight form the minute she went into care, refusing to eat or drink. The Home said that this was a consequence of the disease process. I agree that this could be the case, but for the fact that it all coincided with admission to a home. She enjoyed her meals, eatne normally at the table up until she left. My mum would never have wanted to be there. Weight has continued to drop off her, though she has now started to eat again, albeit a soft diet, but body mass is being lost and she looks skeletal.

Confusion is much worse and again I am told that this is the face of dementia. I know that. But niggling away in the background is the fact that she would never have chosen to go there; that all she ever wanted was to be with us. I think it would have continued on its slow course, that she would still be eating as well as she used to eat …and I have caused her downward spiral which has happened since admission. That her continued distress is down to decisions taken on her behalf.

I am trying to be what my family wants me to be – free and with more time to do what I want to do. I have given them more time to follow their dreams, and not be constantly concerned for me trying to care for Mum. I cry when alone. Just briefly so nobody knows. Outwardly I am bright and happy. Staff at the Home ask, ‘hello, how are you today?’ when I visit. ‘Oh fine’, I reply. But it is not fine. Whichever way I look at it, and however much the staff ‘love’ my Mum, it will never be the same as her being with me,, will it? I know she wants to be with us, that is all she wanted. And I have let her down. Why couldn’t I keep her here with me? Others do.

Today I was thinking about how extremely emotional, how intense and how overwhelming it is for us to care and look after our loved ones.! We really can't win, can we?.No matter what we do, it is going to hurt so much!. This brain illness is really awful for everyone, but especially for the carer having to make the decision about a care.home. I really feel your pain and distress. I think that you have done so much for your mum and your continued support for her is lovely.Yes, our loved ones would like to stay with us, but the reality of the illness, not sleeping etc etc means we reach our tipping point and then you will become ill...You have not let your mum down, far from it,! You are loving her in the most extreme and difficult circumstances...my mum has 4 daughters and I am the only one who cares for her,so not everyone does...!Its in the name "carer"! You are special for your caring nature, and it hurts. Sending you hugs

 

[gringo]

Outwardly I am bright and happy. Staff at the Home ask, ‘hello, how are you today?’ when I visit. ‘Oh fine’, I reply. But it is not fine. Whichever way I look at it, and however much the staff ‘love’ my Mum, it will never be the same as her being with me,, will it? I know she wants to be with us, that is all she wanted. And I have let her down. Why couldn’t I keep her here with me? Others do.

So many of us feel just like you, that we are letting a much loved relative down. My wife has been in a CH. for over two years, yet, to-night I am trying to convince myself that I could manage if I were to bring her home. Round and round the well-worn argument goes. What always prevents me taking action is that I think I would be doing it for my own peace of mind, and if I were then unable to provide proper care I would have caused a very great deal of upset and distress. But, as people always say in these cases, remember why a CH. was required in the first place. So I’m afraid, I can offer you no worthwhile advice with your problem, but I can and do empathise with you very strongly .

 

[lizzybean]

Hi Lulu, you didn't say how long she has been in the CH?
You have not let her down in anyway, & I think you should not be hiding your feelings from your family or anyone else for that matter. You need all the support you can get right now, let people in or you will still head towards carer breakdown.

Try & be a bit kinder to yourself.

 

[rogibob]

mum

Hi Lulu, you didn't say how long she has been in the CH?
You have not let her down in anyway, & I think you should not be hiding your feelings from your family or anyone else for that matter. You need all the support you can get right now, let people in or you will still head towards carer breakdown.

Try & be a bit kinder to yourself.

hi I feel just the same,mum has been in a ch for 6 months and I always think I should be looking after her.She is always telling me she loves me and that I am good to her,it tears me apart,mum says she feels on her own.Igo every day for at least 2~3 hours but she never thinks its enough,then she gets very bad tempered when I am leaving.What is the answer.

 

[jasmineflower]

Hi
My MIL is being cared for at home. If it is any comfort she is still losing weight, won't eat or drink. Is virtually bedridden now and is still extremely unhappy. Please don't blame yourself for her downturn. You can only do your very best.
J xx

 

[Pickles53]

Hi
My MIL is being cared for at home. If it is any comfort she is still losing weight, won't eat or drink. Is virtually bedridden now and is still extremely unhappy. Please don't blame yourself for her downturn. You can only do your very best.
J xx

My mum too was very unhappy at home, not eating enough to prevent dramatic weight loss or drinking enough to avoid serious dehydration, and very lonely with no family nearby and few friends who could visit. However long I stayed when I visited, she was always distressed when I left. We had carers coming in etc. which she also didn't like. She's not happy in the care home either, but she is safe and we can see her much more often. It's not perfect, but life isn't.

 

[Lulu]

thankyou

...for responding. It alwys amazes me since I rarely respond to anyone -but that is only because I feel so dragged down by it all. Sometimes I just want to run away, screaming.
All your replies are helpful because you obviously know how it feels, especially:

''My wife has been in a CH. for over two years, yet, to-night I am trying to convince myself that I could manage if I were to bring her home. Round and round the well-worn argument goes. What always prevents me taking action is that I think I would be doing it for my own peace of mind, and if I were then unable to provide proper care I would have caused a very great deal of upset and distress''.

This is it exactly how I am feeling. And I must remember that she was very unhappy at home with us, too. She wanted out. She tells me how much she loves me too, when I see her, and it is heartbreaking.

Thankyou to you all, amd I wish each and every one of you strength.