Should I feel this guilty?

[Cari]

Hi,

My Gran is in the final stage of Alzheimers, and, after reading many posts on this site for the past 6 months, decided to register today hoping that some of you may be able to help ease the guilt I feel over my Gran.

Without wanting to write a novel, I'll keep it as brief as possible! After about 3 years of visiting the Doctor, my Gran was finally diagnosed with Alzheimers back in 2000 aged 72. We all experienced the disbelief - and to be honest we never really knew much about Alzheimers. Even though at this point she went from always being very glamourous to looking very untidy wearing dirty clothes, unbrushed hair and was extremely forgetful, to the point where she didn't know where the seat belt was in the car let alone put it on.

It dawned on us when one day she was talking about her diagnosis and said "they've told me I won't recognise my own children" and it's haunted me ever since.

My Gran lives in Ireland and I visited her back in 2004, where at first glance she had lost a little bit of weight but she knew who I was and was pleased to see me. Then 5 minutes later she asked who I was and asked who everyone else was in our family and we went round in circles for about half an hour. A few days later after returning home my mum rang her and asked if she enjoyed seeing me and it made her extremely upset because she couldn't remember and ended up in tears on the phone.

Unknowingly, due to getting married and having a baby, this was the last time that I would see her for 3 years until 6 months ago.

My Gran is now in a home in Ireland and is being very well cared for (it was always her wish to be in Ireland in her final days). When we call we're always told she is doing as well as can be expected and how she spends her days etc, well nothing could have prepared me for the shock that I received when I visited her 6 months ago.
I walked into the home and after being shown where to go I arrived at the door to be greeted by a lovely nurse who asked who I was there to see and I stood waiting with my bag of new clothes for gran and chocolates for the staff, while the nurse went off to get the matron.
As I looked around, my curiosity got the better of me as I could see an extremely thin woman
led back in a special chair and I thought "oh that poor woman" and then suddenly it dawned on me.... this woman was my Gran. I only knew this because of her bright blue eyes and I could tell it was her voice groaning as if in pain. Not only did she look like she had aged around 30 years ( she is now 80) in 3 years, but the weight loss was so dramatic - not even my mum trying to prepare me for the worst could have prepared me for that. As a guide, she looked as if she had gone from a size 16 to a size 6. In a split second I ran out of the door in tears and could hardly breathe where I was so upset. The nurse came out and tried to comfort me and asked if I wanted to go back in and I just couldn't do it. My husband had to go in and explain where I was and they were quite understanding and said it would have been a shock as when she first went in she was the life and soul of the party - always singing and up dancing.

But, I was terrified of my own grandmother - not because of who she is but of how she looked. I wanted to shout "that's not my gran", but the words just couldn't come out. And so I made it back to my car where I called my mum and was completely hysterical. The realisation that I would never talk to, laugh or joke with with gran in the same way would never be the same again. And then the guilt set in - the guilt for myself for going to see my gran and knowing I would be upset, the guilt for my gran having the disease, the guilt for walking out and leaving her there, the guilt for not having the courage to go over and sit with her, and ofcourse the guilt of being scared of my own grandmother.

Since then, I've had one dream after another where I'm in her cottage calling for her and she's not there and I'm hysterical or I'm talking to her and she is fine and back to her old self and then you have the relief that she is ok and the nightmare wasn't real until you wake up and realise that the nightmare is real life and she is dying and there is no turning back.

Mum is going over to visit in a few weeks, so there will be the opportunity for me to go again, but I'm not sure if I can do it, yet the thought of having the opportunity when it may be the last time I ever see her is just too much. I'm also having mild panic attacks - and I think because gran is always on my mind, and I dread to think how I will cope going in to see her again - am I selfish for thinking this way? I also feel bad knowing that all I would do is cry and feel bad for her being in the chair unable to communicate having me crying next to her - how is it going to make her feel?

I'm angry that my once glamourous grandmother, who had a fabulous sense of humour and sense of fun is suffering with what she feared most. I'm angry at the disease for inflicting the worst death possible on people. I'm angry at myself for not telling her how much I love her. I want to scream give me my gran back. I'm terrified of the thought of seeing her and at the thought of missing the chance of seeing her. I'm terrified when the day comes when it will be her funeral and how I will cope once she is gone forever.

I know I'm not the only person who feels like this but I just don't know where I am with it all.

Thanks for taking the time to read and sorry it's such a long post, but any of your thoughts on this or advice for me to get through it would be greatly appreciated.

Cari x

 

[BeckyJan]

Dear Cari:

It is so sad to read your post and many of us will understand and empathise for you. We are all different but we all have this anguish to suffer. As you look into TP you will find 'the guilt monster' mentioned - for all sort of reasons we suffer guilt, usually unnecessarily. None of us would be here if we did not care and do our utmost for our loved ones.

Try not to torture yourself too much - you have suffered a tremendous shock. If it is really getting to you, consider professional counselling - it may help how you feel and also help you to decide whether you should visit again. Only you can make that decision and either way it will be right for you.

I am sure you will get many other useful posts to help you.

Take care Jan

 

[Grannie G]

Hello Cari

Alzheimers takes it`s toll on the physical, mental, emotional social and intellectual capacity of the sufferer.

If we live with it from day to day, although we notice the changes, they are not quite as dramatic as they are if we don`t see someone for a while.

To see such a deterioration is upsetting bordering on traumatic and it sounds as if this has happened to you.

Please don`t feel guilty, none of this is your fault and you weren`t to know how she`d deteriorate.

But please don`t feel frightened either. She means you no harm, she is a product of her illness. She needs love and closeness now, more than ever.

 

[christine_batch]

Dear Cari,
Welcome to Talking Point. Yes it is a herrendous illness and when because of distance, you would not have seen the gradual deterioration. Seeing your Grandmother like that is a wicked part of the disease.
Guilt, that words is so common here on Talking Point.
My husband was diagnoised at 58 and now 61 in an E.M.I. Unit. He looks like a man in his late 90's. No longer does he know me but I know him and deep down inside is my husband.
Even now, I want to run away from the Nursing Home and not go back but I do.
The fact you are having bad nightmares that is common. In my personel opinion I would go to the Doctor and explain everything.
Councelling is also an excellent help.
If you were able to go and that will take courage. Courage to just hold your Grandmother's hand and tell her you love her that I have done so many times.
Inside is still your Grandmother and we never know what they may remember.
If anything happened to your Grandmother and you had not gone how would you feel then ?
Do you have a Alzheimer's Branch near you?

I can only offer you the strength and courage to see this through.

Very best wishes
Christine

 

[jane@hotmail]

Hi Cari,

Wow, I hardly know what to say to you. You have summed up the agony and torment thats felt by someone seeing the person they love and cherish going through this nightmare of an illness. I think you've had a terrible snap shot glimpse of your beloved grandma in what seems to be an advanced stage of dementia. Of course, it's had a devastating effect on you. Firstly, you must try and not feel guilty, you behaved just as anyone in that position would have behaved. You really have nothing to feel guilty about.
It's a scary thought, going back to see your grandma again, but I think that you would benefit from going back. I'll tell you why...You were completely unprepared for the change in your grandma the last time you saw her, and to just come across her like that compacted the shock for you. I think with the knowledge you now have, plus the support you'll have from your mum, and the support you can give each other, you'll be better prepared. It won't be easy to step through the door of that care home and it'll be very upsetting to have contact with her again,the way she is, but the love you have for her will win through. I think it may help you get over the terrible shock you've had. Just remember, theres no right or wrong thing to do, you must do what feels right to you and don't feel guilty about your decisions. They will be the right decisions for you, what ever they are.
My thoughts are with you. I hope some of the replies you recieve can be of some help to you. Keep us posted, we'll be here for you every step of the way.

Jane x

 

[lesmisralbles]

Go, hold her hand

Hold her hand, tell her you love her.
She may give you a smile, you can carry that with you for the rest of your life.
Barb X

 

[CHESS]

Dear Cari,

I think you have already been given the best advice. Go and see your grandmother, hold her hand and talk to her. It will be very upsetting for you, but I'm sure you will feel better afterwards; more at peace with yourself and your grandmother. There will also be one other tremendous advantage of doing this. When, sadly, the time comes to attend your grandmother's funeral, you will feel so much better, and, hopefully, less guilty, for having been to see her whilst she was still alive, rather than just when you are laying her to rest.

Whatever you decide, as others have said, will be the right decision for you. Please let us know what you decide and I sincerely hope that you soon have peace of mind.

Love, Chess xx

 

[Cari]

Thanks

Hi,
Thank you all so much for your replies and support, it means a lot. You have confirmed how I feel deep down - to go and see gran again, no matter how upset I will be and it will give me some kind of closure as I will always have the "what if" hanging over me if I don't. It's so hard as all her family are over here in England, therefore she only has visitors now and again, which is awful, but it was always her wish to be in Ireland and the care she receives in the home is fantastic. Mum looked into having her moved closer but they advised against it and she wouldn't have been happy here.
Mum did tell me to expect the worst, but even though I tried I secretly had the glimmer of hope that I would walk in and she would be as she was.
The nurse who took me in actually went to get the matron so she could talk me through how gran was and what to expect and then bring me to her, but I saw her by accident before I was supposed to and obviously had the shock that came with it.
The nurse also asked me if I thought she might know who I was. Do they know who is with them? She looked so lost and trapped and was making a lot of noises while I was in the room but wasn't sure if this was involuntary noises or whether she knew it was me as she didn't make any sound when my husband went in afterwards.
Thank you all again for your help and support.
X

 

[Grannie G]

Dear Cari,
When your grandmother`s stage of dementia is reached I don`t think anyone can be sure just what is heard, seen or smelt. But it is adviseable not to assume anything.
My mother was in the final stages, and had shown no recognition of me for ages, had made no sound or gesture.
She was visited by her Social Worker who asked her name. Quick as a flash she answered, with her Christian and Surname as clear as a bell. I was amazed.