Hi my mum has dementia/Alzheimer they call it a confused picture my sister has been her full time carer for three years but cannot carry on so full time care at home is now being put in place I come once a month to give her a break, they both come to gave Sunday lunch with my wife & I every other week.i think she would be classed as nearing stage 6 her husband died three years ago & I can feel quite depressed when I'm here. I've seen adverts. for people with dementia laughing, smiling taking g part in social gatherings but it's not my experience. I can only see someone who once was a professional person picking up leaves in the garden for an hour & being shown how to butter bread it's devastating & j can see no quality of life, now we're entering in this new phase & sometimes I just wish it would all end honestly. I feel mean & selfish but that's how it is.Thank you for listening.
Guilt!
- Thread starter Paul N
- Start date
Welcome @Paul N
Yes it is devastating and no one can say otherwise.
I too found it difficult to see happy, smiling faces of some people with dementia but we are all different.
Neither my mother nor my husband had happy faces and I understand how painful it is to witness.
Many have wished it all to end but those wishes are not granted. It`s best to try to take each day as it comes and if possible try to do your best for the most seriously ill people you will ever meet.
What kept me on track was to keep thinking it could be me.
Yes it is devastating and no one can say otherwise.
I too found it difficult to see happy, smiling faces of some people with dementia but we are all different.
Neither my mother nor my husband had happy faces and I understand how painful it is to witness.
Many have wished it all to end but those wishes are not granted. It`s best to try to take each day as it comes and if possible try to do your best for the most seriously ill people you will ever meet.
What kept me on track was to keep thinking it could be me.
Welcome to Dementia Talking Point @Paul N.
I'm sorry your sadness about your mum brought you here, but this is a very supportive forum and you're among people who know where you are coming from.
I think a lot of us wish it would all end. My funny, feisty mum is now more or less bedbound with no real language, and yet she still keeps going. My lovely, very intelligent mother in law died last year also in the late stages of dementia. My husband has felt nothing but relief for her since she passed away as she wouldn't have wanted to be the woman she became.
Try not to feel guilt if you can, tricky I know, but concentrate on making sure that she settles in her care home and things are the best they can be for her.
I'm sorry your sadness about your mum brought you here, but this is a very supportive forum and you're among people who know where you are coming from.
I think a lot of us wish it would all end. My funny, feisty mum is now more or less bedbound with no real language, and yet she still keeps going. My lovely, very intelligent mother in law died last year also in the late stages of dementia. My husband has felt nothing but relief for her since she passed away as she wouldn't have wanted to be the woman she became.
Try not to feel guilt if you can, tricky I know, but concentrate on making sure that she settles in her care home and things are the best they can be for her.
Hi @Paul N , your feelings are perfectly understandable. I don’t know what stage my mum is at now, she is physically still quite fit and healthy but her memory has completely gone and she has very little communication skills which makes her frustrated and sad. She needs help with all her care and is doubly incontinent.
She was happy and smiling up until the end of last year in a lovely care home but it all went horribly wrong as the dementia took hold as it does. Now I just want it all to end because I know what the end game looks like and I don’t want my beautiful mum to go through that. If I could end it now for her I would.
She was happy and smiling up until the end of last year in a lovely care home but it all went horribly wrong as the dementia took hold as it does. Now I just want it all to end because I know what the end game looks like and I don’t want my beautiful mum to go through that. If I could end it now for her I would.
It is a difficult path to walk. People laughing and smiling with dementia paints a very false picture of the reality that many of us deal with day to day -but the image is one derived by private care companies trying to attract new income or the media not giving the whole picture -so please don't pay so much attention to that portrayal.
I think we enter into a catch-22 where our emotions become fragmented and in some ways we can't reconcile them. What is important is to try and not make value judgements about quality of life, because you just don't know and will never know the true state of your mothers being with dementia. All you can do is be there for her when it counts and ensure she is cared for and safe.
There will always be guilt in how we think about things or sometimes in the decisions we have to make, but in time when you look back you will see I am sure it could not have been any different no matter how hard you tried. Its a long path, rocky at times and with may different crossroads.
Hi @Paul N and welcome. Guilt and dementia seem to come as a package. Difficult to avoid as it is, guilt is a most useless emotion. You cannot put yourself into your mum's place or have any understanding of what is on her mind. My experience is that dementia is not about happy, smiling faces. Yet there are times when my wife still seems to derive pleasure from (often) the simplest of things. I know that I have done everything for her with the best of intentions and that it is pointless thinking of how things might have been different.
All anyone can do is react to and make the best of a bad situation. Many of us here understand and empathise. I hope that sharing with us helps to give you some solace.
All anyone can do is react to and make the best of a bad situation. Many of us here understand and empathise. I hope that sharing with us helps to give you some solace.
Hi, This illness drags everyone down , i am my wife's carer today i walked out today just to give my head a break, i know she does not mean it and i should know better bye now but 24/7 will drag anybody down as people keep telling me my wife is in her own world ,thankfully she goes to day care 3 times a week, which she really likes and i get a break. I am afraid patience is not my best virtue but we just get on with it, you are not on your own take care.
I haven't posted for a very long time . Probably last year at some point due to trying to cope. At that time I was struggling too. Every time i went to see mum she would start on me, every time I phoned she started on me, she would tell everyone how terrible I am, that I was stealing something(a ten pence even) which i had not done-because she would be emptying her bag and replacing things all day long and sometimes she would put things somewhere else. She would phone the careline and say that I had stolen the car she was driving. In the end it all got too much. I couldn't cope with the abuse and told social services I was stepping back as I couldn't cope. After 8-10 weeks carers put in place twice daily but my mum is now wetting the bed and gets furious if I go to change the bed(she has no drying facilities so I have to do the laundry) but I'm always accompanied by a family member if I visit because it is too upsetting to be totally pummelled emotionally whenever I'm doing things to help. My brother lives near, does nothing and he is considered the blue eyed boy. I UNDERSTAND YOUR FEELINGS OF WISHING IT WAS ALL OVER. We just want our loved ones to have dignity and while we absolutely don't want anything bad to happen to them it is natural to hope that their death is peaceful , dignified and putting them out of the misery whose extent they don't even realise. I moved to be 40 minutes from her instead of 3.5 hrs so it is hard to be so rubbished emotionally. However, I'm now stronger and you will get stronger too. Stepping back a little is probably the right thing to keep your own and your sister's sanity if my experience is anything to go by. Try to do wholesome things for yourselves, to go for a walk and think of the good times which no one can take from you. Sadly mine aren't good memories even without her dementia as she was controlling beyond words but she is my mother and I pray that she enjoys the food I order for her, the chocolate which she loves and the little things which I do despite not being credited with their appearance. It doesn't matter. When the time comes you can say to yourself that you did your absolute best. In fact each day tell yourself 'I'm doing my best' and tell your sister how proud of her you are as carers are heroes. Wishing you everything blessed.
