Feeling guilty

[Elaine65]

Mum has been in the care home for a year now. Ive been dreading visiting her every week but always do. I have little or no support from other family members, they seem to be in denial or maybe running away from the situation.
She has recently had a covid infection and has deteriorated rapidly. Last week the dr was called out, she told me that she thought mum was dieing and to be prepared. However she has now started taking in more fluids and has had a small amount to eat, so I am confused whether she is starting to recover or not. I am left with the guilt that I had become resigned to the fact she was dieing and being released from this cruel disease at last but now it seems she is just hanging on in an even worse state than she was before. She is virtually a skeleton, almost completely deaf and can barely see. She just seems to sleep most of the time now. The last time I visited before the covid, she told me that she wished she could just pass away in her sleep as she was so tired of living.
I am so guilty that I had hoped she would die last week and be free of this pain she must be feeling. I know it is an impossible question, but how long will this state go on for,. I am due to visit her tomorrow and am truly dreading it ?

 

[Jaded'n'faded]

Please don't feel guilty about this. You want her suffering to end. She wants her suffering to end.

There is no point, no quality to her life now and you both just want a peaceful end. Nothing wrong with that.

I feel for you. She may have rallied a little but it does sound like she is near end of life. Don't feel bad. She would hate you to feel bad.

 

[Feeling unsupported]

I completely feel your anguish. I have felt like this for many months now. When Mum fell and broke her hip, family tried to reassure me, telling me she would be OK and would come through the required operation. I just wanted to scream, that secretly, I hoped she did not make it, it would have been a blessing for her ? I hope this awful nightmare is over for your mum before too long. ?

 

[Kingsbridge]

I am so sorry u are going through this I have just been in a similar situation my mum was placed on end of life beginning of October and sadly passed away 23 January its heartbreaking to witness and I felt as u do wishing mum would pass away everyday to end this cruel disease please take care of yourself and don't feel guilty x

 

[nae sporran]

You are going through so much and so is your mum @Elaine65. Guilt just means you care your feelings are bound to be all over the place. My partner has been through the ringer recently, but nowhere near the pain and and stress your mum is going through, so look after yourself and remember you can only do what you have the strength for on the day.

 

[Giovanna]

I completely feel your anguish. I have felt like this for many months now. When Mum fell and broke her hip, family tried to reassure me, telling me she would be OK and would come through the required operation. I just wanted to scream, that secretly, I hoped she did not make it, it would have been a blessing for her ? I hope this awful nightmare is over for your mum before too long. ?

Was amazed to read this as going through this at moment too. I feel as you do and could have written the above. May I ask the outcome? Best wishes G

 

[JHA]

I totally understand how you feel. Not dementia related but my best friend was admitted to hospital on a Thursday with terminal cancer we were told on the Friday to expect her to slip away that night she carried on fighting until the Wednesday. I stayed with her from the Friday night and left twice to go home for a shower saying my goodbyes but she was still waiting for me when I got back. I just wanted her suffering to end but she was not ready to go. She eventually chose to leave us early on the Wednesday night just before her son left home to visit.

 

[Peony21]

I'm so sorry to hear about what you and your mother are going through. Like everyone else who's posted, please try not to feel guilty. To wish/hope that both your and her suffering will be over is so normal, so human and so loving. Far from anything to feel guilty about. But our minds find that hard to compute.....how can we love someone and wish them dead? But it is because we love them that we long for the end of the shared pain. Maybe instead of guilt, could you feel proud of the inner strength and compassion you have that enables you to share with us your acceptance of what you know will be both inevitable one day and bring peace to your mother? And eventually you? It takes strength, bravery and maturity to be able to say "it's ok if you want to go now. I'll miss you but I'll be ok". It sounds like that's where you are and I wish you solace at this time.

 

[Feeling unsupported]

Was amazed to read this as going through this at moment too. I feel as you do and could have written the above. May I ask the outcome? Best wishes G

I'm sorry that you too are in this situation. Mum spent a week in hospital (where they had no idea about dealing with dementia) came through the surgery and returned to care home. This was about 6 weeks ago, but she has not regained any mobility, she can stand when aided to transfer to chair etc, but that is all. She has no recollection at all of the trauma of the situation ?

 

[Whisperer]

Dear All

i can only send my heart felt sympathy to all the people replying to this thread posted originally by @Elaine65. One word which crops up a lot here and in the experience of many carers is guilt. For wanting a loved one’s life to end and their pain to stop.

Please do not wrap love and compassion in a layer of guilt. I did that when mum came towards the end of her journey with Dementia. I was torn between grief at her passing and guilt feeling it had spared her the very worse excesses of her illness. Unless someone has been through that experience I respectfully suggest they have no idea how it makes you feel inside. Please let go of the guilt, you have done nothing wrong.

Very shortly will be the first anniversary of mum’s death and I will visit the garden of remembrance, see the words in the register for the first time. It will be hard but a few things I have learnt over twelve months might in a small way help others who are now where I was a year ago.

1) No one should feel any guilt for wanting the pain of a loved one to end. It is based on deep love for that person, built over many years and shared experiences. Bluntly but gently said you are wanting what is best for them in those circumstances. There is no need for guilt or self recrimination. That is what I would have said to myself nearly a year ago knowing what I now do. Please ease your emotional burden by letting go of any guilt you are feeling, which is not due by you.
2) These are the darkest moments of the caring journey. Be very gentle with yourself, do not judge yourself in those moments or in the rest of your life. Accept events as they happen not as you would wish them to. I was forced to leave mum’s bedside to get some rest. I had to go home as there was nowhere I could stay near the hospital during the harsh COVID restrictions. At home after just a few hours sleep I got the call mum was dead. She had died alone in a side ward room. I felt after nearly six years of caring for her, a year of us shielding alone together I had let her down. Another member of this forum reassured me (@canary ) that often people die when their relatives are away from their bedside, almost as if to spare them that last pain.

A year on there are many feelings I still need to work through regarding mum’s illness, how shielding and COVID magnified so many problems, etc. However I have let go of guilt. If my mum had lived another six months she would have been 90yo. A nice round number but in those months how much more would a galloping Dementia have destroyed, until there was nothing left at all. Like other carers I did my best for mum. A rotten and broken care system fails everyone. It is about time I suggest politicians start to feel some guilt about presiding over that and the rest of society who by and large look the other way, not individual worn out and often broken carers. My love goes out to all of those still caring and those they care for. I hope some of my words can give comfort and support to those who are finding themselves in desperate circumstances. My very best wishes to you all.

 

[canary]

As @Whisperer says, these are the darkest hours in dementia when you are living in limbo land - watching them fade but not knowing when the time will come; the mental roller coaster of rallies then further decline; of wanting it to end and yet dreading it happening.

Be kind to yourself. These mixed up emotions are normal, but ditch the guilt as you have nothing to be guilty over. We do our best and we can do no more - we are not superhuman. If your loved one passes when you are not there do not feel guilty over that either. I wasnt there when mum passed away. I had stayed with her for three days sleeping on the floor, but eventually I had to go home to check on OH and she passed within minutes of me leaving. I was devastated, but an older and very wise carer told me she had seen this many times - sometimes even when the relative just nipped to the loo - and she was convinced that some people do this purposely because they do not want to upset their relative further.

 

[Elaine65]

Thankyou so much for everyone's supportive words. It means so much that I'm not alone with these feelings. Nobody really knows how it feels until it happens to them. I really feel like I'm on a roller coaster of feelings, guilt, anger, sorrow, and then hiding them for work colleagues, family and friends.
I have just come back from visiting mum. There is,a slight improvement. She is drinking more and trying to eat, although she seems to have trouble swallowing. She is getting out of bed more but still spends most of the day sleeping.
She still recognises me and seems to have lucid moments. She told me today that she wishes she could die but can't, it is so heartbreaking to hear and the main reason I dread visiting her.
I'm so glad I can confide in people on the forum. I talked to a friend about how I felt and they seemed to think I was being callous, but they don't understand unless they're in the same boat I suppose.
So the long wait carries on, I will continue to visit her on my days off and try not to feel guilt.

 

[CAL Y]

@Whisperer and @canary .
Thank you for your posts. You are both right of course, why on Earth should any of us feel guilty for caring for our loved ones. More often than not until the carers health is affected too.

Even though my husbands dementia was apparent to me at least 4 years ago he didn’t go downhill until the first lockdown. I think that I got off very lightly compared with a lot of people on T.P.
Even so, because of my debilitating conditions , the time was coming when I would have had to consider a CH.

I too wanted it all to end sooner rather than later and sadly I got my wish.
He was diagnosed with cancer last September and within 6 weeks it was all over.
Im so glad that he was spared the worst of dementia and even though I’m grieving I refuse to let myself be overtaken by guilt.
In a way, we were lucky. He still knew me and I was able, with the help of carers and my sister and brother in law to be with him right until the end.
It was the best outcome we could have wished for.

 

[Violet Jane]

People who have not had experience of relatives and friends with advanced dementia do not know how diminished they become and how poor their quality of life is.

My mother was End of Life for six days. I remember feeling disappointed when a carer told me two days in that my mother had eaten some yogurt. I just thought: so, this is all going to go on for longer. She had had no quality of life that I could see for a while and I honestly felt that she had endured the indignities of dementia for long enough. I shed a few tears when she died but what I mostly felt was relief.

 

[Izzy]

Was amazed to read this as going through this at moment too. I feel as you do and could have written the above. May I ask the outcome? Best wishes G

Welcome to the forum @Giovanna. I’m glad you’ve found us and I know you will get a lot of help and support here.

As well as joining in discussions such as this one you may want to think about starting your own thread in one of the main forum areas. It’s useful to have somewhere you can go to ask questions, share your own concerns - and even have a good rant if your need to. Here’s a link to the main areas -

Dementia Support Forum

Dementia Support Forum (Talking Point). A community dedicated to helping people with dementia. Share your experiences with others, whether you live with, or care for someone with dementia.

forum.alzheimers.org.uk