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Alzheimer's doesn't kill me, the guilt does

Narnia

Registered User
May 11, 2016
4
Ireland
My Mam got her Alzheimer's diagnosis 6 years ago and had it for at least 3 years prior to that. I could not get a diagnosis for her as she was only 55 when the real symptoms started showing. Her father had dementia from his late 60s and it progressed for nearly 20 years. I remember my Mam telling me while on holidays in Spain a few years before she showed symptoms that if she was to ever get it like her Dad, I was to walk her into the sea and let her drown. We had a conversation about how much easier life would be for the rest of the family if she just died instead of having a progressive disease. I laughed at her at the time and told her not be silly that I would never do that. Now I have watched her decline so much over the last 9 years that I feel guilty about everything lately. She cannot communicate any more at the age of 63 and it is so hard to sit with her and say nothing but just hold her hand. I cannot face going to visit her lately due to this and I even now break down and cry in front of her. I feel guilty for not following her wishes, I feel guilty for putting her in a nursing home, I feel guilty for getting on with my life, I feel guilty for wishing she would pass away in the night. I absolutely adore my Mother, we were best friends and I miss her so much. I am an only child and my Father passed away 3 yeas ago when he was 63 so I am all that she has. I hear stories about how other people visit their relatives every day and I wonder why I am not like that. I am going to see her tomorrow and have been crying most of the evening thinking about it. I am the only one that feels this way?
 

Moorcroft

Registered User
Nov 4, 2015
70
I want to give you a virtual hug. You have nothing to feel guilty about. It seems to me that you need to find some support for yourself, to help you through this difficult time.
 

Aisling

Registered User
Dec 5, 2015
1,806
Ireland
My Mam got her Alzheimer's diagnosis 6 years ago and had it for at least 3 years prior to that. I could not get a diagnosis for her as she was only 55 when the real symptoms started showing. Her father had dementia from his late 60s and it progressed for nearly 20 years. I remember my Mam telling me while on holidays in Spain a few years before she showed symptoms that if she was to ever get it like her Dad, I was to walk her into the sea and let her drown. We had a conversation about how much easier life would be for the rest of the family if she just died instead of having a progressive disease. I laughed at her at the time and told her not be silly that I would never do that. Now I have watched her decline so much over the last 9 years that I feel guilty about everything lately. She cannot communicate any more at the age of 63 and it is so hard to sit with her and say nothing but just hold her hand. I cannot face going to visit her lately due to this and I even now break down and cry in front of her. I feel guilty for not following her wishes, I feel guilty for putting her in a nursing home, I feel guilty for getting on with my life, I feel guilty for wishing she would pass away in the night. I absolutely adore my Mother, we were best friends and I miss her so much. I am an only child and my Father passed away 3 yeas ago when he was 63 so I am all that she has. I hear stories about how other people visit their relatives every day and I wonder why I am not like that. I am going to see her tomorrow and have been crying most of the evening thinking about it. I am the only one that feels this way?

Hi Narnia,

What can I say to help you? You are so distressed,I have to reply to you. I hope I can help in some small way. Guilt is a monster and can eat away at us. People deal with things differently and do their best. Some may be able to visit every day but in fairness that is not possible for everyone.

You are doing your best for your Mum and also grieving for your Dad. Please try not to be influenced by what other people do or say. Feelings are important and it is also viital to be able to talk about them in a safe confidential way. Do you have a few close friends?

Your Mum is safe and cared for 24/7. You are caring for her too and watching out for her. You are a fantastic loving daughter.

Am sending you lots of support. Please think about all you have done and are still doing.

Aisling ( Ireland)
 

Beate

Registered User
May 21, 2014
11,947
London
You couldn't have fulfilled her wishes as it's kind of illegal to drown someone! You did your best and you have done nothing wrong. If you can't face visiting her for a while then don't. She might pick up on your mood so tears in front of her should be avoided. Be good to yourself, talk to a doctor or counsellor about therapies and remember that you count as a person too and have a right to your own life. And when you can face visiting her again, please understand that there are 101 things you could do with her that don't involve speaking, like watching TV or listening to music together, giving her a hand massage, showing her photos etc. Not all of the things on the following list may be possible, but some should!
http://dementiacaredevon.co.uk/101-things-to-do-when-visiting-a-relative-or-friend/
 

tigerlady

Registered User
Nov 29, 2015
427
Dear Narnia, No you are not the only one who feels this way, as you will find out if you read a few of others posts. All of us with a loved one in a care home have felt like that and some still feel like that - my husband is in a care home and I still feel guilt that he is there, although I know I couldn't cope any longer at home. I cried on the way home tonight after seeing him, as I just wanted him to be back home with me. Sometimes I cry before I go, as it gets harder to communicate with him. I visit 3 or 4 times a week - not every day - as the care home is half an hours drive away, and I spend several hours with him when I go, and sometimes take him out to lunch or for a walk.

If your mothers care home is good and the carers are kind and she is well looked after, then you have done the best to make your mothers life as good as it can be with this horrible disease.

Does your mum like music? Could you take some CD's of her favourites to play while you are sitting with her? Even if she cant talk, she may like to hear you talk about your day and your family. I take a newspaper when I see my husband and talk to him about stories in that. Are you able to take her out for lunch or just a ride in the car?
 

jorgieporgie

Registered User
Mar 2, 2016
1,985
YORKSHIRE
Oh Narnia I know exactly how you feel. I too am an only child and Mum was my life and best friend.
At the moment I still have her living with me and life sometimes is
unbearable then sometimes not so bad. The thought of putting her in care makes me feel ill, but I know one day this may come. I pray every night Mum passes in her sleep so I do not have to experience the guilt, I suppose that is been selfish on my part. None of us carers every want to see loved ones go away from us, but there is only saw much our bodies can take physically and mentally. You will get stronger day by day and once you see your Mum cared for and safe you will know you did the right thing. Best wishes xxx
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
Many of us have felt the same, so I hope it helps a bit to know you are far from alone. My mother was a lot older, and had had dementia for several years before she finally had to go into a care home at 89, but I remember wishing so much that she would die peacefully in her sleep before we had to put her through what I knew would be a very difficult move for her.

The early months at the care home were very hard, and I don't mind admitting I would often dread visiting, and then felt terrible and so guilty, for dreading going to visit my own poor mother. I certainly did not visit every day - it was just so stressful for me, and would just unsettle her and make her angry all over again. I used to wish so much that she could be like others I read about, and other residents in the care home, who seemed to settle quickly and reasonably happily.

It must be so much harder for you when your mother is so relatively young. I can only send you heartfelt sympathy, and hope that you will become easier in your mind, after you have done what is best for your poor mother in the such sad circumstances.
 

betsie

Registered User
Jun 11, 2012
252
I have exactly the same thoughts as you. I read posts on TP and they make me feel such a failure and so guilty as I could no longer cope trying to keep mum at home and manage my own family so I had to place her in a care home.
My dad Died from dementia last year and he was in a care home and after many visits she would make me promise I would never put her in one or she would kill herself.

My mum is happy where she is but with each sign that her dementia is progressing I go through a grieving process, wishing she would slip away peacefully one night, terrified she will face the misery and horrid death my dad did.

I also feel guilty because of how detached I now feel sometimes. I have already lost my mum, I can no longer phone her for a chat, ask for her support if I am worried, share news about my family the list goes on.

This is a horrid disease but it is a disease I try to remind myself every day that my mum is ill, not just old and like any terminal illness she needs professional care I can no longer give her. In relation to ending your mums suffering, we are not allowed to make this choice, this is out of our hands. When my dad was suffering at the end I remember crying to his doctor asking her when it would all be over - she just said " he will go when he is ready".
Sending you love and support you are definitely not alone.
 

MollyD

Registered User
Mar 27, 2016
1,696
Ireland
Narnia, I'm so sorry. I understand all your mixed and difficult emotions. I imagine pretty much everyone here does.

When in the throes of guilt or distress or worse, resentment, I feel so alone. Then I come here and am reminded yet again that I'm human.

You have had a double loss too young. My mum is older and it's still unbearably painful at times. You are doing your very best, you need to keep believing that. Your mum is safe.

" This is a horrid disease but it is a disease I try to remind myself every day that my mum is ill, not just old and like any terminal illness she needs professional care I can no longer give her."

Betsie,

This has really struck a cord. Another dawning realization for me. Thank you.
 

Pear trees

Registered User
Jan 25, 2015
441
Have you thought that you are grieving for the loss of both patients? You have not had chance to get over your father's death whilst doing your absolute best for your mum, who is now safe and cared for which is all down to your efforts.
You do not need to visit daily if you are happy with her care, but you can call regularly to check she is settling OK and visit when you feel up to it.
You deserve to do things for yourself now, you could not have done any more than you already have.

I am starting to look at care homes for my own mum who is 89 and has had dementia for over 6 years. I have frequently wished she would die peacefully in her sleep to avoid the gradual decline into the indignity of dementia.
 

father ted

Registered User
Aug 16, 2010
710
London
My Mam got her Alzheimer's diagnosis 6 years ago and had it for at least 3 years prior to that. I could not get a diagnosis for her as she was only 55 when the real symptoms started showing. Her father had dementia from his late 60s and it progressed for nearly 20 years. I remember my Mam telling me while on holidays in Spain a few years before she showed symptoms that if she was to ever get it like her Dad, I was to walk her into the sea and let her drown. We had a conversation about how much easier life would be for the rest of the family if she just died instead of having a progressive disease. I laughed at her at the time and told her not be silly that I would never do that. Now I have watched her decline so much over the last 9 years that I feel guilty about everything lately. She cannot communicate any more at the age of 63 and it is so hard to sit with her and say nothing but just hold her hand. I cannot face going to visit her lately due to this and I even now break down and cry in front of her. I feel guilty for not following her wishes, I feel guilty for putting her in a nursing home, I feel guilty for getting on with my life, I feel guilty for wishing she would pass away in the night. I absolutely adore my Mother, we were best friends and I miss her so much. I am an only child and my Father passed away 3 yeas ago when he was 63 so I am all that she has. I hear stories about how other people visit their relatives every day and I wonder why I am not like that. I am going to see her tomorrow and have been crying most of the evening thinking about it. I am the only one that feels this way?
Oh Narnia, no you are not the only one that feels like that. You have expressed it so eloquently. Remember all things must pass and this too will be over one day. Don't be hard on yourself you are doing all that could be done. Sending you a big hug. X
 

Slugsta

Registered User
Aug 25, 2015
2,761
South coast of England
I am so sorry that you are going through this. It is very true that it is not only the PWD who suffers as a result of the disease :(

It sounds as if the Guilt Monster has its claws into you at the moment. Please give it a good, hard punch cos it has no place with you. You are doing everything you can for your mum, you would be some sort of superwoman if you could do it all on your own!