I know many of you have posted similar queries and some have been experiencing much worse situations, but wonder if anyone has advice on my particular dilemma?
Mum is now in end stage; has been in care for just over 3 years, 2 1/2 in a residential unit and in the nursing unit of the same home since March. Between spring and summer, she went from being in a wheelchair and eating full meals to being mostly bedridden (tho now able to sit in a chair for a few hours per day) and existing mainly on fluids.
In August, she had not eaten solid food for about 4 months and on some days barely took any fluids either; she was too weak to get out of bed. She was put on a slow-release morphine patch and was hallucinating all day long (previously had paranoid symptoms, but not so much visual hallucination). At that time, I thought she had only a few more days and went to stay nearby (I live 100 miles away, and normally visit for the day at weekends) for a long weekend and later in the month for 10 days, spending all day every day (and one night) at mum's side. After which she surprisingly rallied and started to eat bits of food again. Not full meals and not every day, but maybe a bit of toast and banana in the morning, or a tiny egg sandwich for supper; otherwise still drinking fluids fairly well. I went back to visiting at weekends, as I could not stay in hotels indefinitely.
My issue is that although she is physically very frail, she is still verbally articulate (although she speaks sparingly) and more cognisant than others in her unit, who are mute and stare blankly. I am an only child and had always been very close to my mum. I have no partner or children, so mum is the only person who knew much of my own past, the whole of my childhood and the adult experiences and memories only she and I shared. My dad died in 1988, it's been just the two of us since then, and I was always the centre of mum's world (sometimes a bit too much, she could be rather possessive, particularly as the dementia progressed).
As she has never acknowledged her dementia, when she went into care I could not discuss it with her, so had to get her to accept her new surroundings and my limited visits by just appearing in the moment (i.e. not referring to our old home and the fact that it had to be sold etc) and leaving as discreetly as possible (without drawing attention to it or where I was going), otherwise she would be distressed.
Three years on, when I appear in her room on my weekly visits, she appears to accept me quite normally, as she did for many years when we were at home together, and will generally respond politely to chat (although I find it very hard to instigate conversation, as so much is taboo because it's either upsetting or means nothing to her). But if I try to say or do anything personal, it becomes apparent that she really doesn't know me in anything other than a superficial, visual recognition ("this is a woman I have seen before, who sometimes comes here").
I have realised that she has developed quite a sophisticated way of responding to anyone who visits, as if she knows them, but without committing herself to any details which reveal that in fact she doesn't. So I am no more to her now than any of the care workers (who have only known her in that unit for the last 6 months), and sometimes less, because they feed and wash her and are generally able to come in with a smile on their face, because there is no emotional hinterland to their relationship with her. Whereas, no matter how hard I try to be upbeat, inevitably I feel strained and she picks up on this. Sometimes I feel quite jealous if she says to one of the carers, "oh you're a lovely lady", although I am glad she likes them, because I can't help thinking that she prefers them to me.
She never asks about me now, and although she often has photos of me close to her on her bed table, she will be more fixated on them than on the real me, sitting beside her, when I am there.
She used to be a much more tactile and openly emotional person than me, but I have noticed over the last year or so that she keeps her hands close to her body and rarely lets me touch her - doesn't like me to hold her hand (although she did once or twice in August, when I thought she was on the brink and had some rare "lucid" moments). I know people say a person with dementia can still appreciate touch, but last week, when I tried to kiss her goodbye, she recoiled quite violently and got antagonistic - which of course I understand, if she thinks I'm a stranger. But it still shocked me, given that she had been "humouring" me as someone she apparently knew for the previous several hours of my visit.
I am conscious that she hasn't got long and I am lucky that she can still speak and engage socially on some level; so each time I visit, I feel a desperate need to say or do something that might awaken a glimpse of our old relationship or some moment of her acknowledging me as her daughter, who loves her, not just some health visitor or social worker (which is what I think she probably believes I am).
At the same time, both the emotional strain of trying to be constantly "prepared" for losing her at any time and the physical effort of the 200-mile round trips (often in bad weather at this time of year) is wearing me down. I feel that my visits are no longer a comfort to her (and indeed sometimes an annoyance; if I try to help her to eat or drink, for instance, or to make her comfortable, she will bat me away, saying "just leave me alone"), yet equally I don't want to miss the chance to connect with her while she still has some cognisance.
In some ways, I think I would find it easier to accept if she just didn't appear to know me or anyone at all (although I'm sure I'll regret saying that, when that time comes); what I find so hard is the impression that she is still "herself" with me on the surface and with other people, but she has no feeling at all for me - the person who has been closest to her all my life.
I don't care if she doesn't know my name or remember where I live or what I do; I just long to know that she feels something of our relationship, even if she can't put that feeling into context.
Last week, when I drove back home in the fog, feeling quite scared, I felt so sad to think that if anything happened to me, she would neither know nor care. I'll never stop visiting completely, because I need to make sure she is being well cared for and has everything material that she needs. But I just don't know how to approach communicating with her now or managing my emotional expectations. For her sake, I know I shouldn't "expect" anything from her, but given that she can still engage on the surface, it's very hard not to go on hoping that I can make her "know me", if even for a moment.
I wondered, for instance, if it would be harmful now just to say, "I know you don't know me, but I know you, and I'd like to tell you some stories about our lives", just so I could share those memories with her for that moment (as I probably would if she were in a coma or totally unable to speak). However, I suspect she wouldn't like it and would tell me to shut up and go away.
I'm not sure what I'm asking here really, just does anyone have any advice?
Mum is now in end stage; has been in care for just over 3 years, 2 1/2 in a residential unit and in the nursing unit of the same home since March. Between spring and summer, she went from being in a wheelchair and eating full meals to being mostly bedridden (tho now able to sit in a chair for a few hours per day) and existing mainly on fluids.
In August, she had not eaten solid food for about 4 months and on some days barely took any fluids either; she was too weak to get out of bed. She was put on a slow-release morphine patch and was hallucinating all day long (previously had paranoid symptoms, but not so much visual hallucination). At that time, I thought she had only a few more days and went to stay nearby (I live 100 miles away, and normally visit for the day at weekends) for a long weekend and later in the month for 10 days, spending all day every day (and one night) at mum's side. After which she surprisingly rallied and started to eat bits of food again. Not full meals and not every day, but maybe a bit of toast and banana in the morning, or a tiny egg sandwich for supper; otherwise still drinking fluids fairly well. I went back to visiting at weekends, as I could not stay in hotels indefinitely.
My issue is that although she is physically very frail, she is still verbally articulate (although she speaks sparingly) and more cognisant than others in her unit, who are mute and stare blankly. I am an only child and had always been very close to my mum. I have no partner or children, so mum is the only person who knew much of my own past, the whole of my childhood and the adult experiences and memories only she and I shared. My dad died in 1988, it's been just the two of us since then, and I was always the centre of mum's world (sometimes a bit too much, she could be rather possessive, particularly as the dementia progressed).
As she has never acknowledged her dementia, when she went into care I could not discuss it with her, so had to get her to accept her new surroundings and my limited visits by just appearing in the moment (i.e. not referring to our old home and the fact that it had to be sold etc) and leaving as discreetly as possible (without drawing attention to it or where I was going), otherwise she would be distressed.
Three years on, when I appear in her room on my weekly visits, she appears to accept me quite normally, as she did for many years when we were at home together, and will generally respond politely to chat (although I find it very hard to instigate conversation, as so much is taboo because it's either upsetting or means nothing to her). But if I try to say or do anything personal, it becomes apparent that she really doesn't know me in anything other than a superficial, visual recognition ("this is a woman I have seen before, who sometimes comes here").
I have realised that she has developed quite a sophisticated way of responding to anyone who visits, as if she knows them, but without committing herself to any details which reveal that in fact she doesn't. So I am no more to her now than any of the care workers (who have only known her in that unit for the last 6 months), and sometimes less, because they feed and wash her and are generally able to come in with a smile on their face, because there is no emotional hinterland to their relationship with her. Whereas, no matter how hard I try to be upbeat, inevitably I feel strained and she picks up on this. Sometimes I feel quite jealous if she says to one of the carers, "oh you're a lovely lady", although I am glad she likes them, because I can't help thinking that she prefers them to me.
She never asks about me now, and although she often has photos of me close to her on her bed table, she will be more fixated on them than on the real me, sitting beside her, when I am there.
She used to be a much more tactile and openly emotional person than me, but I have noticed over the last year or so that she keeps her hands close to her body and rarely lets me touch her - doesn't like me to hold her hand (although she did once or twice in August, when I thought she was on the brink and had some rare "lucid" moments). I know people say a person with dementia can still appreciate touch, but last week, when I tried to kiss her goodbye, she recoiled quite violently and got antagonistic - which of course I understand, if she thinks I'm a stranger. But it still shocked me, given that she had been "humouring" me as someone she apparently knew for the previous several hours of my visit.
I am conscious that she hasn't got long and I am lucky that she can still speak and engage socially on some level; so each time I visit, I feel a desperate need to say or do something that might awaken a glimpse of our old relationship or some moment of her acknowledging me as her daughter, who loves her, not just some health visitor or social worker (which is what I think she probably believes I am).
At the same time, both the emotional strain of trying to be constantly "prepared" for losing her at any time and the physical effort of the 200-mile round trips (often in bad weather at this time of year) is wearing me down. I feel that my visits are no longer a comfort to her (and indeed sometimes an annoyance; if I try to help her to eat or drink, for instance, or to make her comfortable, she will bat me away, saying "just leave me alone"), yet equally I don't want to miss the chance to connect with her while she still has some cognisance.
In some ways, I think I would find it easier to accept if she just didn't appear to know me or anyone at all (although I'm sure I'll regret saying that, when that time comes); what I find so hard is the impression that she is still "herself" with me on the surface and with other people, but she has no feeling at all for me - the person who has been closest to her all my life.
I don't care if she doesn't know my name or remember where I live or what I do; I just long to know that she feels something of our relationship, even if she can't put that feeling into context.
Last week, when I drove back home in the fog, feeling quite scared, I felt so sad to think that if anything happened to me, she would neither know nor care. I'll never stop visiting completely, because I need to make sure she is being well cared for and has everything material that she needs. But I just don't know how to approach communicating with her now or managing my emotional expectations. For her sake, I know I shouldn't "expect" anything from her, but given that she can still engage on the surface, it's very hard not to go on hoping that I can make her "know me", if even for a moment.
I wondered, for instance, if it would be harmful now just to say, "I know you don't know me, but I know you, and I'd like to tell you some stories about our lives", just so I could share those memories with her for that moment (as I probably would if she were in a coma or totally unable to speak). However, I suspect she wouldn't like it and would tell me to shut up and go away.
I'm not sure what I'm asking here really, just does anyone have any advice?
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