Do you find it hard to remember what your "loved one" was really like?

[nita]

I feel guilty and as if I'm betraying my mother as I now find it hard to recall how she would normally have acted and spoken. She's had Alzheimer's for 6 years now; the first year she wasn't so bad and still recognisably herself, but it changed and she's been like a different person for 5 years now.

It's not as if she's aggressive or changed in a nasty way and she is still herself in spirit. It's just that I now feel like the roles have been reversed and I'm her mother (she often calls me "Mummy"). In adopting that persona, you find you're thinking in a different way about them and relating to them differently. She talks bizarrely at times, which may be partly due to the fact that she is taking morphine for pain. And she isn't anything like the sensible, rational person she was. We used to have such interesting conversations. Now I only remember what she was really like when I dream about her and she is her well self and still up and about.

I think I may notice the change more as I have always been with her a lot, and still am even though now she's been confined to bed for 3 years. I suppose things seemed more "normal" when I was still taking her out and doing the things we used to do. I do miss that and she sometimes says "it's ages since we went out" but, fortunately, she soon forgets and thinks she has only just been to see a film or gone shopping.

I just wondered what other people think about this change in the relationship you have with the "PWD". Do you feel guilty that you are behaving differently towards them and can't remember the person they were clearly?

 

[lemonjuice]

For me that's one of the hardest things to come to terms with. With my mother not having spoken for over 2 years and been confined to a chair for 4 now I find I cannot remember my very fit, active, feisty mother and all I see is the shell of a body, who sometimes when I visit I have even failed to recognise in the lounge area and had to have her pointed out by the staff.

 

[2jays]

I see a circle of life when I'm with my mum.

She did her best for us. Not necessarily a good mother, but she was our mum.

I'm not necessarily a good daughter, but I'm still her daughter. And occasionally she knows I am

Not sure I'm a good mother to our kids... Feel our kids are good parents to our grandkids.

Mum, during her dementia journey, she changed so much. I had a time of knowing I was loved by a mother.

Didn't have that before dementia. But it was enough for me to become her mother/friend/someone whom she felt safe with, even though she had no idea why

I think I'm lucky. Because of dementia I am able to not follow a set routine of what/who my mum was.

I am able to enjoy being with someone (mum) who despite her dementia, we both know we have a connection.

This connection doesn't need to have a label of mother, mothering daughter, turning into daughter mothering mother....











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[Raggedrobin]

Hi there, it something I have thought about a lot, too. My mother has not been herself, as she was, for about 3 and a half years and is nearing the end of her life, at 99. I do wonder whether I will ever be able to go back to remembering her as she was. A friend said with her mother that she did, in time.

I hope so but on the other hand the traumas of watching her go through dementia have been so strong I sometimes feel they will have wiped out our past relationship. Which wasn't perfect, but she was 'herself' in a way she only partly is now.

 

[nita]

No full circle for me, I have no children. (Apart from my Mum!!) I suppose what I was trying to say was that I have adapted to our new relationship and become so accustomed to the way things are now that I actually think of my mother as a different person from the one I knew before. I know the way she will behave now, what to do for her, how to talk to her, etc. and it is all so different from the way things were. I was distraught when she first changed, bereft at losing the person I knew as we were very close, perhaps too close. Gradually I adapted and took on a different persona to match hers. I suppose it's also partly to do with no longer being able to depend on someone - for advice, sympathy, help in any way. You kind of stand apart and have a responsibility for their welfare which you didn't have before. That's what makes me feel guilty and sad - the distance that now separates us.

 

[Beetroot]

I still get glimpses of my real mum, but they are getting fewer as time passes. I know she's there underneath, but the layers of dementia are piling up gradually and she's disappearing under them. It's heartbreaking.
Edited to answer the question: yes, I do and I miss her enormously.

 

[Georgina63]

Hi nita
I can so relate to that. Both my parents have AD and the way I see it is that I have had to build a new relationship with them (and their dementia). I do find it hard to remember them as they were and to think about what sort of relationship we had. When did it switch from me relying on my parents to them being dependent on me to determine (guess?) what's right for them? So hard! Dad still knows who I am, but Mum doesn't recognise me as her daughter, but enjoys seeing me when I visit, so some enjoyment/consolation is taken from that. I don't think you should feel it's a betrayal - you're just dealing with how things are now, which unfortunately is a different (and sometimes rubbish) reality. I don't feel guilty about behaving differently, just adapting to how things are. But I do feel guilty about other things - like whether I am doing the best by my folks...but I guess nothing would ever be the best? Don't beat yourself up. I'm sure you are doing a great job! Gx

 

[nae sporran]

I think I know what you mean, nita. It's been hard adapting to my lovely partner now being so dependent on me and constantly pining for her mother. I often feel more like I have to be like a protective father than her partner and she is a few years older than me. That takes some getting used to, and just doesn't feel right. Her daughter just can't or won't adjust and never even tries to communicate with her in a patient or understanding manner. So, you shouldn't feel guilty, but sadness is never far away.

 

[Tara62]

I actually think of my mother as a different person from the one I knew before

Yes, I totally understand that, Nita. I felt exactly the same. It feels as though all the horror of the person my mother became has blotted out the memories of the person she was before she became so ill. It's been six years since she died, and I still don't feel that my "real" mother has come back properly into my memories. I mainly remember the nightmare version.

 

[nita]

I am glad other people have similar feelings. I am sitting here feeling tearful at the moment - just watched the film about Charles Dickens and Nelly Ternan and it ended with the song, "The Last Rose of Summer."

I feel in a way that I am hard-hearted in that I have got used to my Mum "not being there". Having said that, I know it will be a terrible blow when she isn't bodily here any more so I should take some consolation from the times when we do share memories (her memories of her past which I can talk to her about as she has told me so much) and when she does express fondness or concern for me or others. She often refers to me in the third person as if I am someone else now.

 

[nita]

That is so awful, Tara. At least, in my dreams, Mum is her true self. I hope you are able to experience this at times and perhaps, as more time passes, good memories will come back to you.

Yes, I totally understand that, Nita. I felt exactly the same. It feels as though all the horror of the person my mother became has blotted out the memories of the person she was before she became so ill. It's been six years since she died, and I still don't feel that my "real" mother has come back properly into my memories. I mainly remember the nightmare version.

 

[nita]

Yes, it's not only the other person who has changed, you have to change too in your response to this new person and that feels strange. My mother calls out for her "Mummy" too but I think she wants to feel secure and I am the person there who can help provide that reassurance. It may be the fear of what is happening to them that makes them revert to childhood. You are now acting in the place of her mother and father.

I think I know what you mean, nita. It's been hard adapting to my lovely partner now being so dependent on me and constantly pining for her mother. I often feel more like I have to be like a protective father than her partner and she is a few years older than me. That takes some getting used to, and just doesn't feel right. Her daughter just can't or won't adjust and never even tries to communicate with her in a patient or understanding manner. So, you shouldn't feel guilty, but sadness is never far away.

 

[nita]

It's so hard to know whether you are doing the best by them, but, as you say, it is an impossible task as we can't turn the clock back and heal their brains. We just have to try and make them as contented as they can be and it must be consoling that your mother gets pleasure from seeing you. I am more fortunate than some in that my mother can still communicate, however haphazardly, and has some very lucid moments.

Hi nita
I can so relate to that. Both my parents have AD and the way I see it is that I have had to build a new relationship with them (and their dementia). I do find it hard to remember them as they were and to think about what sort of relationship we had. When did it switch from me relying on my parents to them being dependent on me to determine (guess?) what's right for them? So hard! Dad still knows who I am, but Mum doesn't recognise me as her daughter, but enjoys seeing me when I visit, so some enjoyment/consolation is taken from that. I don't think you should feel it's a betrayal - you're just dealing with how things are now, which unfortunately is a different (and sometimes rubbish) reality. I don't feel guilty about behaving differently, just adapting to how things are. But I do feel guilty about other things - like whether I am doing the best by my folks...but I guess nothing would ever be the best? Don't beat yourself up. I'm sure you are doing a great job! Gx

 

[Pear trees]

My mum used to be selfish, distant, and diffivult to please with a very sharp tongue and loads of put downs. We had a very strained relationship and she is not my 'loved one'!
She now hardly speaks and does not recognises anyone and just sits all day lost in her own world, and bsrely registers the carers who do her personal care and prepare meals to feed her. As she no longer recognises me I can visit without being shouted at to leave, and being told I do nothing for her.
I hate to say it, but I prefer this quiet compliant mum to the argumentative and awkward mum of the past.

 

[marionq]

What I remember is someone I was desperately in love with for most of my adult life. I do t much like what dementia has done to him and I definitely don't like what it's done to me. In the first year I was quite pleased with myself and my patience and inventiveness about what we could still enjoy together but that has gradually diminished until now it is a struggle to get through the three days without daycare.

Lack of sensible conversation and idiotic situations like convincing him that an 83 year old man with dementia, glaucoma and a seriously bad knee would not be welcome on a building site! This morning he was fastening a tool belt over his clothes ready to set out for work. He could barely walk. I'm not up to this level of craziness at 8 am on a Sunday morning. I just want my coffee and sanity.

 

[Delphie]

I think I had some kind of an emotional crisis a few months ago, to do with exactly this.

My mum has faded quite a lot of late. Doesn't initiate conversations, doesn't even follow them when I talk to her, her movements are very slow, she doesn't know me, she's either walking somewhere at a very, very slow pace or sitting and dozing. Not interested in TV or music. Not massively interested in food although she still eats what's put in front of her and seems to enjoy chocolate. She's like a ghost.

So I think I experienced something very much like a bereavement. As close to one as you can get when no-one has actually died. But I knew with absolute certainty that I no longer have a mother.

Since then I'm remembering her much more as she used to be. Opening the door to her house, happy and excited to see her grandsons, running around her garden with her dog... That part of it is fine, nice even. But the visits I continue to make to the care home are getting harder, which is odd because she's no longer screaming abuse at me or accusing me of anything.

Everything is calm now. She drifts slowly around, I follow, trying to match her slow pace. I chat to her, expecting no response, though that's surprisingly hard to keep up for a decent amount of time! And when I leave I don't feel like I've been to visit my mum. I've just been to the care home. I checked that everything is ok. That's my role now, or so it seems.

 

[meme]

remembering how they were is not the problem...it's letting that go and getting on with how they now are and trying NOT to remember all the time....I found after my mother died I remember her as she was before dementia

 

[Bunpoots]

Do you find it hard to remember what your "loved one" was really like?

When I started to lose my mum to dementia she was so good at hiding it that I didn't realise why she was changing. Also I thought dementia was just a bad memory!!

I've lost three family members to dementia now, my uncle, my mum and my favourite aunt, in that order. From the point of view of deaths my aunt's was the hardest because her dementia caused problems with movement and she was still present mentally, although not quite what she used to be.

Mum's death came as a relief. She was suffering so much, skeletal, doubly incontinent and couldn't even remember my sister's name. She was agitated and couldn't keep still always moving her legs although she could not walk. It took me a long time to grieve for her, In fact it's just hit me recently and she died in 2009. I've just begun to remember how she was and I miss her so much. I now remember her before dementia but it's taken a long time to get to that point.

Now I'm watching my dad fading but he remains very much dad but less confident and less able than he used to be. He'll be 88 next month and I hope his body gives up before his brain does. I know he does too...

 

[Jessie107]

Just been reading through this thread, I do feel so sad and upset for all of you. This has got to be the most cruel disease, it's so long and drawn out having to watch our loved ones fade in this way is almost too much to bear. I too am facing this with my own mother she is 75 and we haven't yet had the diagnosis, we are at the Start of this horrible illness and to be honest I don't know if I am strong enough to cope with what is to come.
Best wishes to all of you
Jessie

 

[nita]

I think that's the problem. To cope, I have dealt with my Mum as she is now and the problems that throws up and it has obliterated my previous memories of her, seeing her like this day to day for years. You are right, it is a coping mechanism and I suppose it is a natural process of adaptation but it makes me feel sad just the same.

remembering how they were is not the problem...it's letting that go and getting on with how they now are and trying NOT to remember all the time....I found after my mother died I remember her as she was before dementia