Devastated and crippled with guilt

[StanRobby]

After caring for my father who was suffering with dementia, in recent weeks I was experiencing great difficulty in getting him to eat? His food intake went down to nothing shortly followed by his reluctance to drink.

I was so desperate and fearful I called 111 which resulted in a first responder arriving at the house, followed later by an ambulance which took my father to the hospital.

Sadly I was not allowed to visit and had to rely on telephone calls to monitor his progress. Again he was very reluctant to accept food or drink. Unfortunately he had tested positive for Covid but I never noticed any change in him and was convinced everything was due to his dementia. After a week he was moved to another facility and I was allowed to visit. His appearance shocked me to the core as he was so painfully thin. He was still refusing to take food and drink along with being quite vocal, agitated and pushing the staff away whenever they approached him, even trying to give mouth care.

This continued for a week but there were spells when he was comfortable and settled. I believe he was being given a muscle relaxant?

Last wednesday evening, he passed away and I am now absolutely devastated at the loss of a man I idolised.

I simply can't get it out my mind that this was all my fault and keep asking myself why I rang 111. I was just so scared and didn't know what else to do.

Due to this fear I used to be quite persistent with him when trying to get him to eat & drink although I appreciate it was probably the wrong approach.

I just keep looking back over these past two weeks when apart from the eating problems, we were doing ok. It was hard but we were getting by. He was never agitated at home when he was with me. All I kept hearing from various professionals was that my dad was approaching the end of his life although I wouldn't accept it. The deterioration was horrendous when all throughout his stsh in hospital I was filled with the anticipation that he was always coming back home to me. The dreadful end result now being that I have lost the man I loved with all my heart

 

[canary]

Please accept my condolences on the loss of your father @StanRobby . I can hear that your grief is still very raw,

Please do not feel that his death was your fault, because it wasnt.
What you have described is the way that people die from dementia. Their body closes down slowly over days and weeks and they stop eating and drinking as their body can no longer process it. They become very thin and are often quite agitated.

It sounds to me like this had already started when you rang 111. I know that there is always the feeling that if only you could have got them to eat you could have stopped them dying, but it doesnt work like that. They dont die because they are not eating - they stop eating because they are already dying and you cannot prevent it.

Please be at peace over this. It was no-ones fault, it was just your dads time
xx

 

[Grannie G]

I second what @canary has said @StanRobby

Your father will have reached the end stage of dementia which is why he stopped eating or drinking.

It`s impossible to gauge the rate of progression at the end stage of dementia. It is upsetting your father contacted COVID but it possibly saved him from a long slow decline.

You have nothing to blame yourself for and I`m so sorry you have lost a father you so obviously adored.

 

[StanRobby]

Thank you for the comforting words they are very welcome.
I just kept questioning myself all the time 'what if I had done this or that' or 'why did or didn't I do the other'
I had cared for my father on my own for over 2 years, left my job and had a strong, unrelenting determination to do whatever I could. I have lived with my parents all my life. They were in fact, my whole life, I was devoted to them. Admittedly my dad wasn't a young man (92) but in my heart and mind his age seemed irrelevant when I loved him so much and we were getting by. It was getting hard towards the end and my frustration was at fever pitch. Not with my dad as such but the situation itself. Did I actually realise or could I accept how poorly he really was? I'm even thinking he was tired of my persistence and may have even been fed up with me or sick of hearing my voice. I was so terrified of my dad not eating or drinking as it was so obvious where it would lead. Perhaps rather foolishly I thought the hospital would have some magical cure for his refusal to eat but it just didn't happen. I was even looking into having specialist carers come into the home on his return which I was convinced would happen. I'm just so distraught and inconsolable with his loss it's almost too much to bear.

 

[Moggymad]

Hi @StanRobby i am so sorry to read of your anguish. I also send my sincere condolences to you. It is a very painful experience.
I & probably many others have had those times when you torment yourself over the decisions made. I believe it is part of the grieving process that you try to make sense of & understand why your loved one died when & the way they did. Having been the sole carer for your dad you would have been very protective of him & it's understandable that you (wrongly) blame yourself in some way for what happened. You would probably still feel the same if you hadn't called 111. What happened was not of your making, it was the progression of the illness to the final stage. If he had covid before hospitalisation then it was very likely the infection that caused the dementia to progress to not wanting to eat or drink.
Before my mum died in hospital we as a family spent 2 weeks going in to try to get her to eat/drink each day. But sadly to no avail. Her intake got less & less until she stopped completely. We knew it was the end of the line & was very hard to accept. She couldn't sustain her life any longer. Like your dad she got very agitated whenever the staff came near her & got very distressed. She just wanted to be left in peace.
In time I hope you will see you did your upmost to care for your dad & nothing you did was wrong or harmed him in any way. Give yourself that care now.

 

[Skippyboy]

After caring for my father who was suffering with dementia, in recent weeks I was experiencing great difficulty in getting him to eat? His food intake went down to nothing shortly followed by his reluctance to drink.

I was so desperate and fearful I called 111 which resulted in a first responder arriving at the house, followed later by an ambulance which took my father to the hospital.

Sadly I was not allowed to visit and had to rely on telephone calls to monitor his progress. Again he was very reluctant to accept food or drink. Unfortunately he had tested positive for Covid but I never noticed any change in him and was convinced everything was due to his dementia. After a week he was moved to another facility and I was allowed to visit. His appearance shocked me to the core as he was so painfully thin. He was still refusing to take food and drink along with being quite vocal, agitated and pushing the staff away whenever they approached him, even trying to give mouth care.

This continued for a week but there were spells when he was comfortable and settled. I believe he was being given a muscle relaxant?

Last wednesday evening, he passed away and I am now absolutely devastated at the loss of a man I idolised.

I simply can't get it out my mind that this was all my fault and keep asking myself why I rang 111. I was just so scared and didn't know what else to do.

Due to this fear I used to be quite persistent with him when trying to get him to eat & drink although I appreciate it was probably the wrong approach.

I just keep looking back over these past two weeks when apart from the eating problems, we were doing ok. It was hard but we were getting by. He was never agitated at home when he was with me. All I kept hearing from various professionals was that my dad was approaching the end of his life although I wouldn't accept it. The deterioration was horrendous when all throughout his stsh in hospital I was filled with the anticipation that he was always coming back home to me. The dreadful end result now being that I have lost the man I loved with all my heart

 

[Duggies-girl]

@StanRobby so sorry that you have lost your dad this way, it is horrible and cruel but that is what dementia does. I spent months building my dad up after his first incredible weight loss due to cancer. We sorted that out and I put 3 stone back on him with high calorie foods. Then he had pneumonia and back to hospital for 3 weeks where he lost all that weight he had regained. I dialled 111 and worried that I had done wrong but we were lucky because he survived. He didn't want to go but he would have died if he hadn't gone and then I would have blamed myself for not being on the ball. I don't think that you can win with these decisions.

Once back home he was put on his diet of double cream with everything and I got his weight back up again but another year passed and dad went down again and this time nothing worked. It didn't matter what I did, dad was unable to eat and I wonder if I may have got on his nerves with all the offers of a teaspoon of custard or a slither of chocolate ice cream but he was my dad and I had to try. Don't blame yourself, it's not your fault.

The physical changes are hard to bear, my dad was always a big strong man and bore no resemblance to the tiny bone thin man he became at the end. It is horrible but it is what happens and takes a long time to accept what happens, I won't say get over it because I think accepting it is as good as it gets.

You did the same as I did, gave up your job and devoted yourself to his care and that is a lot and at the end you are left with nothing to do, full of grief and basically lost. You will be reliving everything, wondering this and wondering that and the truth is that you could have changed nothing, it was just your dads time. Your love for your dad shines through in your words and he was lucky to have you which you must know.

It's a huge shock when this happens so you need to treat yourself kindly although I know that is easier said than done. Your dad is at peace now and I hope that you can find some.

 

[Skippyboy]

Condolences on the death of your father. Your grief is very raw right now....you cared for your father and gave him your best..,guilt is part of sorrowing...I feel you have nothing to reproach yourself with..Covid has ruined so much.. Please try and focus on the positives..the love you had for each other..the care you gave right till the end when it was taken out of your hands..people all over the world ..my friends too went through same experiences and lost loved ones..we too lost a member of family..please try and not blame yourself. By not allowing him hospital care at the end might have caused immense suffering..you did the best at home..and dud the best when you sent him to hospital..he would have received professional help 24 hours a day in intensive care easing stress related to the disease. Would not have been possible at home.

 

[Dimpsy]

Your parents must have been very proud to have raised such a devoted and caring son and the love that you felt in return shines out from your message like a beacon.

As others have said, we each must face the natural end to a life and this time last year we faced the same upset with MiL. Her time had come, she stopped eating and drinking and was almost unrecognisable she was so thin. Her pain relief was controlled and she managed to linger a few weeks before the inevitable.
We took comfort from knowing she wasn't afraid at the end, she didn't want fuss, but remained calm and full of grace.

I'm very sorry that your lovely dad is no longer with you; in time, the "what if's" will fade, they are a symptom of the shock you are experiencing and your true memories of the happy years will come back.
When someone I know passes away, I light a candle in the evening and sit and think about that person. I find it helps me find a modicum of peace on the inside, if that makes sense. Unfortunately, there have been far too many candles lit over the last twelve months.

 

[LynneMcV]

My condolences on the loss of your wonderful father @StanRobby .

As others have said, there is nothing that can be done once the body starts closing down and the person stops eating and drinking - it is part of the natural process as the body prepares for dying.

It is distressing to watch - nearly three years later I am still horrified at how quickly my husband deteriorated at the end and how thin and frail he became in that last stage when he stopped eating and drinking. At least I had the benefit of being by his side in hospital day and night during those last days and I knew that he was not suffering or struggling - just being kept comfortable until his time came. Rest assured that your father would have been kept comfortable even when you were not able to be there.

There is nothing you could have done that would have changed the outcome. You feel guilty about calling for medical help, but had you not done so your father would still have reached his end day and you would be feeling guilty that you hadn't called for medical help. We beat ourselves up at every turn with these feelings of guilt.

As hard as it is, please understand that you have nothing to feel guilty about. You gave your father devoted care until the end under what would have been extremely stressful and difficult circumstances on many occasions. Anyone who has cared for a loved one with dementia will understand what you have been through and what you are going through - including all the 'what ifs' that plague carers afterwards.

You did so well, and your father would tell you as much, I am sure.

 

[StanRobby]

@LynneMc...My father had in total been in hospital for two weeks during which I couldn't see him for the first week but was fortunate to be able to visit him during the second after he was moved to another facility. He really had changed so much since he left home, his appearance and obvious frailty was frightening to see. So much so that 2 of my brothers were so shocked when visiting, they couldn't face going again. In a sense it served me as I was able to go every day apart from the one on which they went. I hope that doesn't sound selfish but I wanted to be with dad all the time around the clock. The only time I dared to leave his side was for a swift visit to the local shop to buy essentials.
18 months ago he had to go into hospital for an operation to remove a growth in his bladder. Dad was put in a side room on his own and I stayed there with him for a whole week except for one night when I was so shattered and just had to go home and sleep in my own bed. I felt very privileged to be allowed to stay with him and couldn't thank them enough. Dad was also suffering bouts of delerium whilst in the hospital and up to that point he had been showing signs of confusion. Six months previously I became very concerned and actually called it a day at work, leaving my job to take care of him. I've always lived with my parents, utterly devoted to them in fact and was determined to do everything I could for him.
A few days after his operation he was settled for a while but a couple of months afterwards I took him for a memory test and to see him struggling with such basic tasks/questions was unbearable to witness. He was diagnosed on that very same day with unspecified dementia with a doctor saying due to dad's age at the time (90) it was deemed unfair for him to undergo further investigation with scans or to suffer possible side effects from medication.
From that day on my dad's gradual deterioration became evident in various ways although he was tough and I foolishly thought he was coping better then he actually was. The proof of which came and literally blew me away with its ferocity and speed