It’s her losing of concepts I’m finding hard

[Tender Face]

I feel I cope fairly well with the repetition/memory loss/physical/practical aspects of caring but it’s mums total lack of ‘empathy’ for others - including me - that seems to be really getting to me.

Like ‘Do you watch such and such on TV?’ (coz she’s forgotten I go out to work or thinks the magic fairies come to do my housework when I‘m with her doing hers …… ) or not bothering to ask after her grandson … she only remembered my son recently when the home-visiting doctor pointed out his pictures in the living room….. same son whose School Fair I have neglected today because I was ‘attending’ to mum……

Now she’s complaining one of her friends never visits …… I explained said friend having chemo/radiotherapy would mean she barely gets out to see anyone…. ‘Oh, does it?’….

I know it’s HER world …. but it’s one I don’t like …..

I know I’ve been ‘losing the plot’ recently - on emotional and now on physical levels … she has no idea that I am effectively ‘running two houses’ trying to support her independent living as well as my little family’s semblance of whatever ‘normal’ life is…..

Maybe it’s just I’m hitting ‘exhaustion’, maybe it’s the ‘pressure’ of Christmas looming…. but before turkey and tinsel, wasn’t that all about being selfless, not selfish?

And I guess that's just me being selfish and feeling sorry for myself....

Sorry, just needed a little rant……

Karen, x

 

[jenniferpa]

Karen I know exactly what you mean - my mother seems so incurious about everything - me, her grandchildren everything. Her normal response to anything seems to be "Oh?" I have assumed its some kind of protective device combined with the brain damage, but it sure doesn't make it any easier (and also, really makes me feel that she's "gone")

Jennifer

 

[Skye]

Karen,

It's painful, but I'm afraid empathy goes out of the window when AD strikes. That's what I miss so much with my husband. I don't expect appreciation or physical response, but it's so hard not to know that I still mean something to him. I think that's the main cause of the depression and isolation we feel. We're loving and giving without any hope of return, and I for one am not a candidate for sainthood!

As for Christmas, it's always been a sad time for me since my lovely daughter died aged 18. It's a time to be endured. I hate most when the shops play carols -- I have to leave because the tears are streaming down my face.

But thanks to TP we'll survive it together.

 

[Lynne]

You're ringing all the familiar bells with me too, Karen.

My mum has always been a hands-on caring person, by her own nature and by former profession (psychiatric nursing), and since then voluntary work with local mentally handicapped or damaged adults. She only gave up the voluntary work 3years ago, at age 84.
Now, her world has shrunk to little more than her own house & the TV set. Her friends don't visit (granted most of them are elderly themselves) so we're down to her & me, the physiotherapist - following a broken arm - and the chiropodist! Quite a contrast to the active and useful life she used to lead, and enjoy.

As you observed, the outside world, the fact that I took redundancy from a good job in order to look after her, the possibility that I might want a social life myself ... all seem to be taken for granted, which is not like my 'old' Mum at all.

And that's the pain, isn't it. My old Mum has gone in many ways, through no wish or fault of her own, and won't be coming back home again. She still remembers HER childhood memories at the mo., but frequently muddles up the things from my childhood memories, so now she thinks that I did (whatever) when it was in fact something which happened to my brother, and so on. And, completely illogically, I feel hurt that she can't remember those things correctly, even though I know it's the illness and the breakdown of the chemical links which enable memory to function.

None of which helps you Karen, or anyone else, except to have a little cyberweep on each other's shoulders, and say I feel the same.

Love & Big Hugs

 

[mel]

Hi Karen
I think its a hard thing to come to terms with.Mums world is just that....mums world.....she is unable to see outside of it.Last year my brother was quite ill at one point....all mum cared about was that she didn't catch it. I know that the kids used to get upset about mums lack of interest in what they do but they have in time come to accept that Nanna is no longer Nanna.
i think,looking at the broader picture when dementia arrives "normal family life" disappears.....it has in our world!!
You're not being selfish or feeling sorry for yourself.....this disease stretches you to the limit!!
(PS I lost the plot about a month ago .....but I'm back.....but stronger!!! )

 

[maria29al]

Skye,
I was so sorry to read about your daughter. I hope you can find some peace this Christmas. It makes me realise how much I have and how much I moan and groan too much about the "stresses" in my life. You are a brave person. A big hug from me to you.

M
xxxxx

 

[BeckyJan]

Following your post I feel for you so much, and also for you Skye - what a hard time you must have for Christmas.

Dont really know what to say - just feel so much for everyone who is going through this Dementia bit and other tragedies as well. Cannot help but question - are we picked out from this world as people who can cope!!!!!!!!!??????? Then I think of those poor poor folk in Sudan, Ethiopia etc etc and wonder why we cringe at all. I guess each of our own problems is immense to us personally and that is what we have to cope with.

Gosh (I have been drinking this evening) but it seems to focus my mind on so much. Just so you have the picture - I am awaiting David who is having a shower - he dreads it and so do I - is this what normal folk do on a Saturday evening???????)

Best wishes to all Beckyjan

 

[Lila13]

My mother referred to the patient in the next bed (last October) as "that fat woman" (someone who obviously had a medical condition causing bloating). She would never have said anything like that before she was ill. Her normal adult self would have been horrified.

The disappearance of empathy and morality, (disinhibition), retreating back into early infancy ... you don't expect a small baby to have the same social manners as an older child, and many toddlers go through a swearing phase.

I know my mother never reached the worst stages. Until nearly the end there were little flashes of the old affection and awareness.

 

[Margarita]

I two am finding that hard to cope with, mum not having any empathy’ when I said the other day how tried I was feeling around 10am in the morning , I never took dog out , so never got mum paper to read horoscope . My daughter boyfriend had to move his car so he took dog out , I was pleased with that and should not of said to mum how tried I was feeling , but I always forget , its hard to except that the chemical in her brain is doing that , but like someone said about how they mum was not like that before , just like my mum .

That side of dementia /AZ really seem to get worse as the disease take hold I am finding, but I always forget when living in that moment, was so glad that my friend came around an hour later to look after my mother while I went to work , as if I don’t get out of the situation I would lose the plot , mind you I have lost the plot before , but always seem to get back on track and then I think now, how I am lucky really , because mum never going to.

Then thinking about that does not make me feel better , its like a catch 22 but am learning to live with it , with the help of all of you on TP .

Thanks Tender face for starting this thread as I ‘m feeling just like you with this issue , so we’re not alone it seem

 

[Tender Face]

Thank you all for the 'cyber shoulders'!

Sometimes, it helps just to know 'it's not just me'. Or 'not just mum'. Thank you all.

I've long since learnt not to expect a 'thank you' from mum for anything - as example, went from a few months ago her protesting 'Stop bringing me all this food' to now watching horrified at her apparent 'greed' as I'm barely through her door before she's foraging in my basket to see what I've brought..... this, the same woman who admonished me when I got home from school and announced 'I'm starving' with 'There are children in Africa starving, you're just hungry...' ?????

I guess it's me still not getting my head around 'this is my mum, but not my mum'.....

Dear Skye, I cannot begin to imagine your pain. The ONLY reason I jump through all the commercial hoops at Christmas is because of my own son.... I think BeckyJan has touched on what I *wish* Christmas could be about ... a time for reflection and quiet contemplation of others of whatever faith which might afford some comfort instead of the pressure of the 'tinseltown' we find ourselves forced into at this time of year ... who says 'peer pressure' ends at school'????

Right, before my 'Christmas soapbox' comes out for too much of an airing, I'm going to other threads and spread a bit of the 'positive' you've all helped me resurrect....

You're all stars!!!!!

Much, much love, Karen, x

 

[BeckyJan]

Karen, I think I should be thanking you - like your last post.
It is good for me to come here for a while - just spent two afternoons 'helping' my lovely husband to write his Christmas cards (took me back to helping our very young children when they had just learnt to write and wanted to do their own cards!).

The positive bit is that he did write them - I helped him to tick off names and told him what to write and did the labels etc. (this is a man who was once a director of a large company - how sad).
I did think last year that he would never do it again but he has - so cant help but wonder what stage we will be at in of Christmas 2007! Doesn't really do to 'think' - day be day and all that.
Best wishes Beckyjan

 

[Margarita]

I always remember when I got to the age of around having my own children , that when I use to visit mum house she use to put up only a really small Christmas tree more for the sake of my children I think other wise she would of not bothered, she just go to mass on Christmas day, now I understand why , we as parents follow what society tell us to do, so we follow and join in when we have children we install it in our children, the meaning seem to get lost in the stress of the run up to it. Now as adult we do have free well to choice how we want to feel about it.


As I got older I realise, my mother, father, gave me that fantasy to pass it on to my own children. Now my children are adults, so it become a tradition, time to look back on the year, Happy memories of my own childhood Christmas, moments with my children on christmas pass, to realize we now live in a society of diversity of religion and not every one believe in Jesus. Skye I can’t imagine what it must feel like to lose a child. hope you don’t mind me saying you must have some lovely memories of Christmas day with your daughter. So I think , that what society as a whole give us just happy memories of Christmas pass Even if we don’t believe in this Religious day . The point in life is life I read that in a card shop , still trying to work that out

Just a Philosophy week for me

 

[Lucille]

Hi Karen

Another cyber shoulder to cry on from me! I know what you mean. A few months ago when I visited mum, she wasn't in when I arrived. Time passed, five, six, seven pm. She eventually waltzed in armed with shopping bags and looked surprised to see me. She'd obviously forgotten I was coming and had also lost track of time. Her eyes carried that blankness about them that I seem to be seeing more and more. She didn't apologise; there was just a shrug of the shoulders and she told me to get off her case.

I recently married. Mum didn't buy me a card, despite being with me whilst I opened those sent by others. There were no questions from her, "where's the one I sent?" or anything. Just a nothingness. It's tough, isn't it? And now I feel selfish as well, picking up on something so trivial, but sometimes I think it's OK to feel like that - we wouldn't be human otherwise.

 

[angelaby]

Hi Karen

I havn't been on this web site for a while and today i have been emptying my mum's council bungalow-single handedly,as she is moving in with me.

she is happy as Larry-whoever he was. When she is at my house she tells people on the phone that she is treated like the queen and has a dog sat each side of her (not corgis) and i wait on her hand and foot!

When i asked her to move in with me i was dreading her response as she had always been a very independant person but she jumped at it and said that she hated living on her own now but i agree with you-any empathy has definitely gone.

I think that the only way to cope is to keep reminding myself that it is part of the disease.

A quite funny example is that last Thursday i lost my old deaf dog in the park. she literally just disappeared and i found a hole in the fence leading into someones garden and of course beacause she was deaf, i couldn't shout or whistle her so i circled the park for about 2 hours and then decided to take mum home, as it was very cold. I made her tea (evening meal in the north), received a phone call from someone who had found the dog,shouted to mum that i had to out quickly-she was watching home and away so didn't hear me as the volume was so loud. Ten minutes later i came back with the dog - she had been missing 5 hours and mum greeted me with - have i had my pudding yet? I tell you if i didn't laugh i would be in tears an awful lot.

 

[mocha]

Empathy

My biggest example of lack of empathy came on New Years Day when I fell down the last three stairs and sat on both ankles badly spraining both, as I am no light weight. Ron never got out of his chair even though I went with such a clatter.
When he did eventually come he couldn't go and get me the phone or attempt to help me up.
This horrible disease seems to rob people of all sympathetic feelings.

Tonight I have an article printed in our local paper and I will see if I can copy and paste it into a new Thread

 

[Lila13]

When my mother was going through a baby-stage and wouldn't get out of bed and getting her bed into such a muddle and expecting me to make the bed several times a day and I reminded her I had a bad back and couldn't go on doing it so often, she grabbed at my glasses and they flew across the room and broke. If she'd been a real baby at least I could have picked her up.

When she hit me (because I'd locked her in) I pointed out that R. (her sister) had told us to lock her in and asked if she'd hit R. "No, she's bigger and stronger than you are." "So you only pick on people who are small and weak? I hope Social Services will only send big strong carers."

Most of us probably derived our morality and social sense from our mothers to start with, so of course it's even more frightening when suddenly their usual morality and social sense disappears.

 

[road2nowhere]

Thank you everyone

It is many months since I last visited TP, but last week, Mum had quite a major episode, combined with a fall. This, of course worried me silly.

Part of her has died and when I go there, I wonder what today's "trail of destruction" will bring. Like another poster on this thread, if I don't laugh . . . .

I've also been losing the plot, running out of patience, snapping at her - it's been SUCH a comfort to know that it's not just me. It's so bluddy hard to come to terms with the fact that this highly intelligent woman has been reduced to the confusion and the "what you doing Mummy?" behaviour.

Take care all

Hugs

xx
--
Love a lot, trust a few,
But always paddle your own canoe!