Forgetting my mum

[lucky]

Hi just wondered if anyone else has felt or feeling like this. I feel terribly guilty and sad but I feel like I'm forgetting my mum. My mum was diagnosed nearly 5 years ago at 59 years of age. It seems such a long time ago and I've been trying to think back to when we went out shopping, for lunch, when she had my children but it's so hard to remember. It's like the AD takes over everything and I feel like all me and my dad do is sort appointments and day care etc. I'm not complaining about this we will do whatever we can so she gets the best care that she deserves. But I hate it this disease is it so cruel.
I find it hard to talk to people about the ongoing situation as things are never going to be better again just worse. So when people ask if I'm ok I just say yes!

 

[CollegeGirl]

Lucky, I feel just the same.

When I try to remember my mam as she was, the most vivid memories that come to mind are those where we argued or fell out. I struggle to remember the good times - which far outweighed the bad - and I can't really understand why.

And most of my conversations with dad revolve around her illness, what we can do about it, appointments, care needs, etc etc.

I also am at a bit of a loss for words when people ask me how she is. I just don't know how to answer, and recognise that most of the time they're just being polite, kind, but not really wanting to know all the details.

It's very hard, isn't it?

 

[lucky]

Yes very hard. If I go into too much detail it feels more real then I get upset. I try to deal with it practically by being organised with appointment etc. as there's nothing else I can do. My mums mood has changed a lot very moody doesn't speak hardly and refuses to do things. (This is not her at all) This year she has deteriorated a lot but I've been told this is the case when diagnosed at an early age :-(

We have a memory box and look at photos but she doesn't really know people on them. All of which are family members. But it's little things like she use to ask how work was and how my children have been at nursery and school. But now there's nothing.

 

[hev17]

Yes very hard. If I go into too much detail it feels more real then I get upset. I try to deal with it practically by being organised with appointment etc. as there's nothing else I can do. My mums mood has changed a lot very moody doesn't speak hardly and refuses to do things. (This is not her at all) This year she has deteriorated a lot but I've been told this is the case when diagnosed at an early age :-(

We have a memory box and look at photos but she doesn't really know people on them. All of which are family members. But it's little things like she use to ask how work was and how my children have been at nursery and school. But now there's nothing.

I think this must be common because your loved one changes before your very eyes into someone who's personality you no longer recognise. Helping in practical ways has got to be a good thing for you and her in that, you feel you are still making a contribution to caring for your mum. My mum has early onset Alzheimers like yours and she has now gone into a home but is refusing to let the carers bath her or help her change her clothes. I'm going every other day to do this and in some ways I don't mind because is passes the time and gives us something to do together. Don;t beat yourself up over this dreadful disease - you can't feel guilty - you just need to build up your emotional resilience and try to hold on to some of the good memories you have of your mum - best wishes

 

[Canadian Joanne]

The dementia does submerge everything else at first. My mother was diagnosed 13 1/2 years ago and it's only been in the last year or so that I have started to refer to the things she did prior to her illness. It will come for you in time, it's just that it can take such a long time. The good memories do come back.

 

[lucky]

I hope so. My mum just isn't my mum anymore I feel awful saying that too. Like I said il do anything and everything for her.
I just struggle to come to terms with that whenever anyone asks me how things are I'm never going to be able to say better it's always a deterioration :-(

 

[Pigeon11]

Hi Lucky

It's such an awful illness isn't it and completely robs you of the person you knew? I know exactly what you mean about forgetting the times before the illness as thinking about the day-to-day caring and their differing needs just overwhelms everything else.

The memories haven't gone forever though - they're just hidden for now and I agree with Canadian Joanne that there will come a time when, for various reasons, the balance changes and you have more time and energy to reflect on your 'old' mum. In the future, you will remember the difficult times too. Although it's a terrible illness, it's part of what your Mum is now and as it seems you're a very caring daughter who has her best interests at heart, so I'm sure you will be able to take comfort by knowing you did the very best for her.

Coming to terms with the fact that things aren't going to get better is also a difficult thing. But although her health isn't going to improve, things may improve in that the illness might get easier to cope with for her and those around her. My dad's GP said to me quite recently (when I was concerned he had a miserable existance in the end-stage of his illness) that as the dementia progresses, his perception of happiness would be different too. I was a little angry at her at first as I couldn't undertand how living like this could make him happy. But sometimes, a deterioration and less insight into their condition can make sufferers more settled and calm and I have decided to try to take her advice and look at the postive side of things if I can.

I hope that this helps and I have't said anything to make the situation worse. Take care and look after yourself as well as your mum

x

 

[gringo]

The good memories do come back.

Maybe the ‘good memories’ will come back, but now, stuck in the day by day drudgery of this thing, It doesn’t seem to me very likely. But I do so hope you are right.
At the very worst times my thought/wish is hoping that my wife will die soon and so be free of her suffering and the total loss of dignity that goes with it. Then I am completely overcome with remorse and am ashamed for having such thoughts.
It would be unthinkable to write like this anywhere else but here.

 

[Weary]

This is why the disease is called the long goodbye. We are forced to watch our loved ones slip slowly away until all thats left is this dishevelled 'thing' that vaguely resembles your loved one but isnt. What i resent most is it completley changes their personality which is what defines them. I wish i could remember my dear MIL the way she was but as she has had alzheimers for 7 years now its hard to recall.

 

[Jessbow]

My Mum lost her battle in June, it was so hard to see what she'd become and and I mourned twice I think - once for who she was when I lost her, and now- a little later- for who she was before dementia struck.

its like you mourn twice.

Slowly the day to day image of her as she was when she passed away lessens and you can recall what she was before. Its a slow process, but as you recall happier times it does get a bit better.

I miss her physical presence so much, and I missed 'her' as dementia overtook more and more, but can now look back and remember better times.

 

[clareglen]

Same here. I can't remember any good times. I keep trying to remember what she was like at my age now & when did it all really begin.

 

[Weary]

Jessbow its worse than that I think you mourn 3 times. Firstly after their personality has slipped away and they longer recognise you and you no longer recognise the person you knew even though they are still there. Secondly when they eventually die, and then again afterwards for the person you remember before the illness.

 

[Jessbow]

Jessbow its worse than that I think you mourn 3 times. Firstly after their personality has slipped away and they longer recognise you and you no longer recognise the person you knew even though they are still there. Secondly when they eventually die, and then again afterwards for the person you remember before the illness.

I think you are right, although what mum became which eventually lead to her demise, kind of rolled into one really.

 

[Dustycat]

I agree with everything said. I lost my Mam 3 months ago and I really struggled to remember her as she was to give the vicar some snippets for the eulogy. Now I am going through the same with my Dad. After 3 months old memories are coming back. I'm going to create a memory book as I remember things as my memories are all I have left now. Xx