Hi there
I have been coming here on and off - more off than on - for seven years and I can't believe it has been so long. I don't know whether anybody on here will remember, the posts have been quite sporadic and I hope that a lot of people have moved on from where they were but I am guessing that some of you will not have. My parents both have dementia (her Alzheimer's, him Vascular) and my dad has been very violent and aggressive for a long time. He also has cancer. They were separated for two years (many court appearances) when mum asked for a court order but at the end of that she had him back as she was not prepared to leave her home. I am fifty miles away and do not have siblings. Last time I posted, he had just put a care worker in hospital and I was desperate to know what to do. I had taken my mum to a care home placement emergency meeting but she had refused to stay.
Well, a lot can change in a year. The day after I took my mum to the emergency meeting, I found a small lump in my groin and thought I had herniated myself pushing her in the wheelchair in heeled boots (I thought I was going to work that day so didn't dress for a wheelchair push). Well that lump grew and grew, very fast, and just over a month after my last post I was diagnosed with an aggressive soft tissue Sarcoma, which is a rare cancer that grows in connective tissue, and tends to recur. By early June when I had surgery, the tumour was 14cm, but it was well defined with 'clear margins' so I hope I have seen the last of Sarcoma, but it is a frightening cancer which often leads eventually to limb amputations.
After my surgery I did not go to my mum and dad's for a couple of weeks, I could not drive so relied on lifts to make the fifty mile trip. I then had six weeks of daily radiotherapy in central London (again, a long way from where I live) from mid August to late September which left me completely exhausted.
Throughout this time I was getting reports of the awful things that were happening from their carers and dad's CPN, who again tried to get my mum into placement which she refused. The GP ran tests on my dad at the CPN's instigation which eventually showed his cancer was becoming active again in his bowel and is now present in his lung. He was required to attend for tests which he, and the hospital staff, expected me to take him to. I could barely walk let alone push a wheelchair. He went on transport which left him completely furious. The result of the tests was a referral to the local hospice community team in November. His fury raged on, meanwhile his bowel problems created a huge stink as he refused to let anybody help him with managing his continence. He got progressively weaker with a Haemoglobin of 60 and had transfusions in October and January.
Then at new year, my mum seems to have just given up. She stopped getting out of bed, became very sleepy, very thin and was only eating when spoon fed. I called 111 and the paramedic who attended told me she was 'in the end of life process' which was a huge shock. I never knew there was such a thing! Her heart was fine, sats were fine, she had no cancer, copd, anything. The GP's reaction was 'oh no, Mary's not palliative' until she saw her. I told the Hospice community nurse, who made a fast track referral for both of them to continuing health care funding, which was approved by mid January and by the end of January both were in a nursing home for palliative care.
It is seventy miles from where I live.
I begged for it to be closer but the one home that CHC approached was not prepared to take mum because they thought she would not survive the journey. So now I am adjusting to the 140 mile round trip, the staff have been hit by 'Hurricane George' which I know is hard for them ('Is your father always like this?'), meanwhile mum just lies in bed. She loves to know I am there but I can't make it anything like a often as I want (2x week and this midweek visit I started out, got 5 miles and said to myself 'you know, I just can't do this, I need a rest', turned around and came back).
This disease (dementia) is a killer on every level. Please be aware that your loved one with dementia may expect things from you which are impossible, because that is the nature of their illness, and that the services may collude with them in that because the way they work is so fragmented, geared to respond to whatever 'crisis' presents itself. Please ladies and gents take good care of yourselves and beware GUILT because the ravages of this illness are NOT your fault or your responsibility to fix.
I have been coming here on and off - more off than on - for seven years and I can't believe it has been so long. I don't know whether anybody on here will remember, the posts have been quite sporadic and I hope that a lot of people have moved on from where they were but I am guessing that some of you will not have. My parents both have dementia (her Alzheimer's, him Vascular) and my dad has been very violent and aggressive for a long time. He also has cancer. They were separated for two years (many court appearances) when mum asked for a court order but at the end of that she had him back as she was not prepared to leave her home. I am fifty miles away and do not have siblings. Last time I posted, he had just put a care worker in hospital and I was desperate to know what to do. I had taken my mum to a care home placement emergency meeting but she had refused to stay.
Well, a lot can change in a year. The day after I took my mum to the emergency meeting, I found a small lump in my groin and thought I had herniated myself pushing her in the wheelchair in heeled boots (I thought I was going to work that day so didn't dress for a wheelchair push). Well that lump grew and grew, very fast, and just over a month after my last post I was diagnosed with an aggressive soft tissue Sarcoma, which is a rare cancer that grows in connective tissue, and tends to recur. By early June when I had surgery, the tumour was 14cm, but it was well defined with 'clear margins' so I hope I have seen the last of Sarcoma, but it is a frightening cancer which often leads eventually to limb amputations.
After my surgery I did not go to my mum and dad's for a couple of weeks, I could not drive so relied on lifts to make the fifty mile trip. I then had six weeks of daily radiotherapy in central London (again, a long way from where I live) from mid August to late September which left me completely exhausted.
Throughout this time I was getting reports of the awful things that were happening from their carers and dad's CPN, who again tried to get my mum into placement which she refused. The GP ran tests on my dad at the CPN's instigation which eventually showed his cancer was becoming active again in his bowel and is now present in his lung. He was required to attend for tests which he, and the hospital staff, expected me to take him to. I could barely walk let alone push a wheelchair. He went on transport which left him completely furious. The result of the tests was a referral to the local hospice community team in November. His fury raged on, meanwhile his bowel problems created a huge stink as he refused to let anybody help him with managing his continence. He got progressively weaker with a Haemoglobin of 60 and had transfusions in October and January.
Then at new year, my mum seems to have just given up. She stopped getting out of bed, became very sleepy, very thin and was only eating when spoon fed. I called 111 and the paramedic who attended told me she was 'in the end of life process' which was a huge shock. I never knew there was such a thing! Her heart was fine, sats were fine, she had no cancer, copd, anything. The GP's reaction was 'oh no, Mary's not palliative' until she saw her. I told the Hospice community nurse, who made a fast track referral for both of them to continuing health care funding, which was approved by mid January and by the end of January both were in a nursing home for palliative care.
It is seventy miles from where I live.
I begged for it to be closer but the one home that CHC approached was not prepared to take mum because they thought she would not survive the journey. So now I am adjusting to the 140 mile round trip, the staff have been hit by 'Hurricane George' which I know is hard for them ('Is your father always like this?'), meanwhile mum just lies in bed. She loves to know I am there but I can't make it anything like a often as I want (2x week and this midweek visit I started out, got 5 miles and said to myself 'you know, I just can't do this, I need a rest', turned around and came back).
This disease (dementia) is a killer on every level. Please be aware that your loved one with dementia may expect things from you which are impossible, because that is the nature of their illness, and that the services may collude with them in that because the way they work is so fragmented, geared to respond to whatever 'crisis' presents itself. Please ladies and gents take good care of yourselves and beware GUILT because the ravages of this illness are NOT your fault or your responsibility to fix.