The torment of Guilt
I am new to this forum having lost my dear husband last month. Your story is so similar to my own and I sympathise with you enormously.
My husband was diagnosed in 2010 at the age of 62. A cheerful fun and intelligent person, we muddled through for the first few years. The last two years he became progressively worse to the point where I was finding it too hard coping alone with him at home. We live on the top floor in a block of flats and he was wandering up and down in the lift at night and getting lost outside. The Police brought him back a couple of times or neighbours had come to the rescue. We had no family living locally so it was mainly left to me. He did go away for one week respite last year and thereafter attended the same place once a week for the day. At the start of this year it was agreed with Social Service that he go into the same care home for a three week respite/assessment with the possibility of staying in full-time care thereafter. I had reached a crisis point by that time and so it was a huge relief to finally get some peace and calm at home. Sadly this time he would not settle in care and was Sectioned and taken to a special Unit about 15 miles away. Whilst there he had a fall and was taken to hospital to be checked over and then returned to the Unit. However after a few days he became unwell and was returned to the hospital. Thereafter he never regained his mobility and pnuemonia set in. After 3 weeks he was eventually found a place in a Nursing Home about 8 miles away but although he rallied a little, by now he was deteriorating rapidly. He became very agitated when the staff tried to wash and change him and he rarely ate any food offered. I visited every day apart from whenever his daughters could get there to visit. We took him small deserts and fresh strawberries to eat and he did manage some but only with lots of encouragement. He was now totally bedridden and some days were extremely distressing to witness. His weight plummeted. We made sure he had classical music playing in the background and when he heard certain pieces he seemed to recognise and became very emotional. Sometimes he would cry which would be hugely upsetting for me. After 3 months in that state he suddenly became unresponsive and the doctor was going to prescribe antibiotics as he thought it might be the start of a chest infection. It was at this stage when we said no we don't want that, it wouldn't be fair to bring about a recovery simply to have him living in the state he was. So it was agreed to make him as comfortable as possible and let nature take its course. There followed 4 days of us sitting by his bedside waiting for the inevitable. He had a line inserted so that a continuous supply of morphine and other drugs were being administered. Even so it was a traumatic experience and when the end finally came on the Friday night it was so, so sad. I shall never ever get over those final days and moments.
We've now, of course, had the funeral and a service he would have loved and his ashes are in the churchyard in a village he also loved. I'm still finding it hard to believe he's no longer with us, the void that's left after caring for someone for so long is profound. My biggest torment is whether letting him go into the care system brought about his final deterioration or whether that was inevitable in any case. How will I ever know?
While he was still in the hospital the doctor showed me a scan of his brain which indicated a huge amount of black areas but I did not ask how long it had been that bad and am wondering now whether it was as a result of him being in care?
There's no doubt about it this disease is nothing less than brutal. It not only destroys the victim but it does a pretty good job of trying to destroy the carer as well! I hope all of us who have these dreadful after thoughts of guilt eventually find solace.
I am new to this forum having lost my dear husband last month. Your story is so similar to my own and I sympathise with you enormously.
My husband was diagnosed in 2010 at the age of 62. A cheerful fun and intelligent person, we muddled through for the first few years. The last two years he became progressively worse to the point where I was finding it too hard coping alone with him at home. We live on the top floor in a block of flats and he was wandering up and down in the lift at night and getting lost outside. The Police brought him back a couple of times or neighbours had come to the rescue. We had no family living locally so it was mainly left to me. He did go away for one week respite last year and thereafter attended the same place once a week for the day. At the start of this year it was agreed with Social Service that he go into the same care home for a three week respite/assessment with the possibility of staying in full-time care thereafter. I had reached a crisis point by that time and so it was a huge relief to finally get some peace and calm at home. Sadly this time he would not settle in care and was Sectioned and taken to a special Unit about 15 miles away. Whilst there he had a fall and was taken to hospital to be checked over and then returned to the Unit. However after a few days he became unwell and was returned to the hospital. Thereafter he never regained his mobility and pnuemonia set in. After 3 weeks he was eventually found a place in a Nursing Home about 8 miles away but although he rallied a little, by now he was deteriorating rapidly. He became very agitated when the staff tried to wash and change him and he rarely ate any food offered. I visited every day apart from whenever his daughters could get there to visit. We took him small deserts and fresh strawberries to eat and he did manage some but only with lots of encouragement. He was now totally bedridden and some days were extremely distressing to witness. His weight plummeted. We made sure he had classical music playing in the background and when he heard certain pieces he seemed to recognise and became very emotional. Sometimes he would cry which would be hugely upsetting for me. After 3 months in that state he suddenly became unresponsive and the doctor was going to prescribe antibiotics as he thought it might be the start of a chest infection. It was at this stage when we said no we don't want that, it wouldn't be fair to bring about a recovery simply to have him living in the state he was. So it was agreed to make him as comfortable as possible and let nature take its course. There followed 4 days of us sitting by his bedside waiting for the inevitable. He had a line inserted so that a continuous supply of morphine and other drugs were being administered. Even so it was a traumatic experience and when the end finally came on the Friday night it was so, so sad. I shall never ever get over those final days and moments.
We've now, of course, had the funeral and a service he would have loved and his ashes are in the churchyard in a village he also loved. I'm still finding it hard to believe he's no longer with us, the void that's left after caring for someone for so long is profound. My biggest torment is whether letting him go into the care system brought about his final deterioration or whether that was inevitable in any case. How will I ever know?
While he was still in the hospital the doctor showed me a scan of his brain which indicated a huge amount of black areas but I did not ask how long it had been that bad and am wondering now whether it was as a result of him being in care?
There's no doubt about it this disease is nothing less than brutal. It not only destroys the victim but it does a pretty good job of trying to destroy the carer as well! I hope all of us who have these dreadful after thoughts of guilt eventually find solace.
