Emotions

[Sweet]

Today I feel that I can't stand another day of guilt, guilt, guilt and sadness at watching my mum deteriorate into this MENTAL MADNESS called Dementia!!

I hate it... It's makes me depressed, angry,resentful and bitter. I'm scared I'm only going to remember her like this and I wish it was all over..I'd like to put my arms round her and let her be gone and be at peace.. she doesn't want to live..and I don't know who to be angry at.

 

[Tin]

Tonight I helped my mum to bed at 10pm and for the first time in ages I am feeling shattered with it all and I know that I cannot go to bed yet because my head is buzzing with memories then and now. Since Wednesday night I have watched my mum wander backwards and forwards to the garden gate, it started at midnight on Wednesday. Mum has been with me for almost 11 months and she has almost every day asked to go home, but the intensity this last week plus the wandering has been heartbreaking to watch. Will these be the only memories I will have, like my mum I seem to be forgetting our shared past, the present is just taking over and I want to remember how she used to be a woman who worked hard all her life trying her best to give her children what they wanted. She left school at 14 and straight into the work place, as far back as I can remember she has always worked and enjoyed spending time with work mates, loved her sweet wine, Baileys, holidays and shopping [boy could she shop, still does].

I talk to her often about things, but she just can't remember, tonight to try and distract her from wandering I was reminding her of all the addresses we have had. Distractions are not really helping now, but I keep going, hope you can too, its all we can do.

 

[Desperate39]

Sweet I totally understand your emotions. Through all of this nightmare of seeing my mums decline, the thing that breaks my heart the most is that I sometimes struggle to remember what she was like "before". The one thing I do remember is her telling me many many times that if she ever got dementia I was to give her the pills and end it for her because she wouldn't want to live like that. And now she is. And I'm terrified that my memories of her, eventually, will be memories of her as she is now, not the amazing woman, mother and friend that she was before. I feel angry all the time. I feel resentful and bitter towards friends who still have their parents and don't appreciate them enough. This disease is brutal and unfair beyond words.

 

[Sweet]

Dear tin.
... You feel it too..
"the present is just taking over and I want to remember how she used to be"....
is exactly it.
I'm so angry (pointlessly so) to watch our own mothers deteriorate into this mental nightmare... 3 1/2 years... no wonder it deeply affects us and yet you still have to get on with it..Im so tired of it.

Best wishes to you, hope you get some rest.. it helps when you know people are out there coping (or not always!) too.

 

[Sweet]

Hi desperate 39... That's it ...as I just commented to Tin..
my mum was pretty central to me, bright and sharp right up to 89yrs.. would say to me, 'oh shoot me if I ever get like that'.. and now she is!!.. The resentment comes from me thinking she'd got away with it...and I've been dragged into the consequences of this unforgiving disease too...(selfish I know)....Friends (who don't understand dementia) just say she's had a 'good innings' not getting the mental madness of dementia just mixing it up with old age...they don't get its an illness.
It's all just so sad.. She's gone..but still here..I just really want her back...

 

[Torontonian]

My mother has been living with me for the past 19 years and she was diagnosed with mixed Alzheimer's with possible vascular dementia about 9 years ago.

This Christmas will be exactly 2 years that she has deteriorated to a point she no longer recognizes me or my brother. She has turned into a very scared, insecure girl child. She thanks me when I put a plate of food in front of her. She asks where her children are. Where her mother is. The memory of the past 50 years is gone for the most part. The worst is after 10 o'clock every night. Insecurity, not knowing who may come and kill us while sleeping. She is extremely scared; will lock and unlock the apt. door at least 20 times and same goes for the door in the balcony. Whatever I do or say won't matter. I end up giving her quetiapine (12 mg) at bed time. Still, it takes at least half an hour for her to get to sleep. This means, after all talking and shouting and checking the doors we finally go to sleep way past midnight. I recently reduced my hours so I am home early afternoon for late lunch. Can't get any carer, she won't have it. Tried the day centre, no she won't go.
I leave written notes when I leave in the morning, saying what day it is, where I am gone and **** time I will be back, etc. some days when I return I find her very agitated and not knowing what to so or where to go as she didn't know. She reads my note, puts it in the garbage then forgets about it. I leave out, food, drink, fruit, to get her going till I return. Some mornings she's up with me then I provide breakfast. Of course by the afternoon she'll forget that.

Every evening I have a good scream by myself. I feel like I CANT DO THIS ANYMORE but it passes. I do go to bed crying some nights and I do take a sleeping pill some nights as well.

I know my mother. She has had a bed marriage, was unhappy, put up with an alcoholic husband so that her children were raised in a full family with a mother and a father. She's 89 years old. I am 53. She is still walking and talking. Sleeps a lot but not when it is time to sleep.

I really can't help feeling sad for her because she does look like a little scared child on most days and whatever I say or do, I cannot change that.

Most of today she was in the sofa, eating, dozing off, eating again and dozing on and off. Later listening to music and a YouTube if an old concert.

Finally she got off the couch and guess where she is now? At the door checking outside of the door to see if We dropped something dropped by ATTACH]43137[/ATTACH].

It is only 6:30 in the evening and she started already..

I am managing somewhat ok during the day but past 10 in the evenings,I am gone to another mad planet myself.

I am hoping I don't turn out to like her.

Sorry for the long post.



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[Kevinl]

Today I feel that I can't stand another day of guilt, guilt, guilt and sadness at watching my mum deteriorate into this MENTAL MADNESS called Dementia!!

I hate it... It's makes me depressed, angry,resentful and bitter. I'm scared I'm only going to remember her like this and I wish it was all over..I'd like to put my arms round her and let her be gone and be at peace.. she doesn't want to live..and I don't know who to be angry at.

I know how you feel but with me it's my wife. How will it go she'll stop being my partner and become my patient. She's 61 and I'm 59 how will I remember her?
Negative emotions are the most destructive thing in the world, in time you'll remember her for the woman she was not what this illness has made her.
K

 

[Shadrach]

Hi sweet
I'm going through the same thing at the minit, my granny had mixes Alzheimer's and is in her final stages.
when I feel down I look at old photos and videos and try to remember all the happy times we had together, try to remember my granny as she was.
I always think that it's the carers who hurt more that the person with dementia, I imagine that they don't realise how sick they are and that they are happy in their own little world.
I hope you feel better soon and hope your mum is happy xx

 

[LYN T]

My emotions are all over the place-and have been for nearly 9 years now. Like Kevin I have a spouse who is suffering. I am 56 and Pete is 68-Dementia does not discriminate, it can attack anyone. The sad thing is I've been with Pete for 23 years, so those 9 years have been a huge chunk out of our lives. I feel really down when I think of what should have been. I cry very often with the unfairness of it all. I cry even more when I read press reports stating that if you take exercise, keep your mind active, don't smoke etc you have a good chance of escaping the disease. Pete did all those things.

I visit my Husband in his CH and see an 'old man'. Someone who I hardly recognise. A shell, mostly bed-ridden and needing everything to be done for him. It's just cruel.

I'm sorry for Pete, myself, and everyone else who steps into the dark world of dementia.

Take care

Lyn T

 

[chick1962]

My emotions are all over the place-and have been for nearly 9 years now. Like Kevin I have a spouse who is suffering. I am 56 and Pete is 68-Dementia does not discriminate, it can attack anyone. The sad thing is I've been with Pete for 23 years, so those 9 years have been a huge chunk out of our lives. I feel really down when I think of what should have been. I cry very often with the unfairness of it all. I cry even more when I read press reports stating that if you take exercise, keep your mind active, don't smoke etc you have a good chance of escaping the disease. Pete did all those things.

I visit my Husband in his CH and see an 'old man'. Someone who I hardly recognise. A shell, mostly bed-ridden and needing everything to be done for him. It's just cruel.

I'm sorry for Pete, myself, and everyone else who steps into the dark world of dementia.

Take care

Lyn T

Oh lyn, I have followed your journey from when I first joint TP and have always wanted to ad my support and sympathy for such a heartbreaking time you are going through. Somehow I can't find the right words but this post compels me to let you know I am thinking of you and your dearest Pete all the time I am just not that articulate . I am by your side , putting my arms round you and walking with you on this journey. Much much love to you and Pete .... Heike xx


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[Tomjo]

I am so lucky compared to most people on here I don't have too much stress. My mum is in the early stages, is still in her own home and although I need to go round twice a day and spend hours of time with her, I can still come home to my own bed.

I had an evening a few weeks ago though, which I feel encapsulated the whole awful emotional / negative cycle. We'd had a reasonably good afternoon, been out, had tea and cake in the car at a well known local beauty spot, but had to go home early because of bad weather. I was concerned that mum hadn't had enough exercise. I decided to put some music on, and while we were listening to Nat King Cole, I suggested we do a little dancing. (swaying from one foot to another, but I thought it might be fun.) Mum got up and seemed to be enjoying herself holding my hands and swaying about to the music, when she suddenly announced she was taking her trousers off because they were too tight.
I gently told her that no, this wasn't a good idea, and she got really ratty in that 'small child' way she gets, so I said we should stop dancing and sit back down. She must have realized I was a bit cross because she then started hanging round my neck like the town drunk, singing 'Oh I love you I love you.' at the top of her voice. I managed to persuade her to sit down AND keep the trousers on, but I was so upset - Mum was a ward sister, for God's sake, responsible for people's lives, and here she was, apparently totally unhinged.
Once she sat down, she forgot all about dancing and sat, smiling round serenely. Her sight is dreadful, so she couldn't see me, sobbing into a cushion, presided over by good old Nat King Cole singing, of all things, 'When you're smiling.' It was the most desolate half hour of my life to date. I sat there trying to conjure up my 'real' mother, my mum - and all I could see was this batty old lady.