I have been absent from this forum for many months, and wanted to let my friends here, who have given me so much support in the past, know what has been happening.
My husband finally went into an NHS dementia ward at Christmas 2003, because I could no longer cope with him after looking after him for many years. He is still there, and although his condition has deteriorated significantly, he is well cared for and treated with kindness and respect. I pray that he will be able to stay there to the end, rather than go to a care home where I wouldn't put a dog to be looked after.
After feeling exhausted both physically and mentally, also "in mourning" for him, after a while I started to feel that I should try to get on with life as far as possible without him, as I have two sons and wonderful friends, and I am 60 years old, so felt I should make an effort to take up the threads of life for my sons' sake. I was offered a very nice job, 2 days a week, which I started last April, and which was good for me as it put me in touch with many old friends from the job I had before I gave up to care for my husband. It also gave me something else to focus on, although I continued to visit my husband 3 or 4 times a week.
In mid May I started to feel unwell, and although I went to stay with friends in France for a week at the end of May, I had symptoms including a great deal of pain, and went to my GP within days of my return. To cut a long story short, I was referred to a consultant, had various tests, including a CT scan, and was diagnosed in mid-July with Colon Cancer.
I was scheduled for surgery in early September, but was admitted as an emergency in early August with obstruction and a high temperature, was on antibiotic drips for a week and had surgery in mid-August. The surgeon told me a few days before surgery that the CT had shown liver secondaries, but that it looked as though he could still remove the primary tumour, thus avoiding an ileostomy. Unfortunately when I came round I found I had an ileostomy, and was told that the tumour was unresectable (inoperable).
I was told when I asked that with chemotherapy I should have about a year of "useful" life. I had chemo with a permanent infusion (PICC) line in for three months from September to November, which wasn't too bad, just felt very tired towards the end of it, and went off my food (but kept all my hair!). I was told that it had been effective, and had reduced the primary and larger secondaries by half, with the smaller liver secondaries disappearing.
I have recovered well from the chemo, had a good Christmas with my sons and friends, have had a busy social life, visited friends, been to London and visited the Tate Modern. I am trying to do some of the things that my husband and I would have been doing in the last ten years if he hadn't had Alzheimers - in less than two weeks I am going to Venice and Florence for a fortnight with a friend, and am planning another journey, possibly to the USA which I have never visited, shortly after that to see friends and relatives there (if I can get medical insurance, which is proving almost impossible).
I feel pretty good, in fact at the moment I feel better than I did this time last year!
I see the oncologist for a check up tomorrow, and the surgeon in about a week's time, just before I set off for Italy.
I was interested when my GP, who was quite shocked at how far the disease had progressed, as I hadn't hidden any symptoms from him, said that he believed it taken a hold because I had been under so much stress for so long with my husband that my immune system had got very low and couldn't fight the disease. This is exactly what I had felt. He said that I had stayed so strong and looked after my husband longer than most people would have managed, but that I was perhaps too good at hiding how I felt.
So what is the moral in all this - people tell me that it just isn't fair - but when was life ever fair? I have just read a few posts about reaching the point when you feel you can't cope any more - perhaps carers should not push themselves to that point, but that doesn't take into account the uncomfortable fact that we want to care for those we truly love for as long as humanly possible. But perhaps it is a message to some of you out there that you must value your own lives, and be honest with yourself when you reach the point of no return. I have found that my love for my husband, which was sorely tried at times when he was at home, is still strong, and although he barely recognises me now, he is pleased when I visit, and I know that he is still "in there" somewhere.
I had expected that I would fight for him until the end, but it now looks as though I may go first, so have talked in depth to my sons about what I would want for him, and how to fight his corner, and who to turn to for advice and support. I have also written a comprehensive list of contacts (including the Alzheimers Society), instructions and fact sheets. All the professionals who care for my husband are also aware of how I feel, and I now feel that I have done all I can for his future care. I wish he would die before me so that I can die knowing I have done everything, and if that sounds awful, I just want to know that he is at peace.
I'm sorry this is not a very cheerful posting, but wanted you to know what has happened, and that I hadn't just lost interest - I occasionally look in, but haven't had the energy to be very involved lately. I intend to get as much as possible out of the time I have, so hope to be pretty busy in the near future!
With love to you all
Ruthie
My husband finally went into an NHS dementia ward at Christmas 2003, because I could no longer cope with him after looking after him for many years. He is still there, and although his condition has deteriorated significantly, he is well cared for and treated with kindness and respect. I pray that he will be able to stay there to the end, rather than go to a care home where I wouldn't put a dog to be looked after.
After feeling exhausted both physically and mentally, also "in mourning" for him, after a while I started to feel that I should try to get on with life as far as possible without him, as I have two sons and wonderful friends, and I am 60 years old, so felt I should make an effort to take up the threads of life for my sons' sake. I was offered a very nice job, 2 days a week, which I started last April, and which was good for me as it put me in touch with many old friends from the job I had before I gave up to care for my husband. It also gave me something else to focus on, although I continued to visit my husband 3 or 4 times a week.
In mid May I started to feel unwell, and although I went to stay with friends in France for a week at the end of May, I had symptoms including a great deal of pain, and went to my GP within days of my return. To cut a long story short, I was referred to a consultant, had various tests, including a CT scan, and was diagnosed in mid-July with Colon Cancer.
I was scheduled for surgery in early September, but was admitted as an emergency in early August with obstruction and a high temperature, was on antibiotic drips for a week and had surgery in mid-August. The surgeon told me a few days before surgery that the CT had shown liver secondaries, but that it looked as though he could still remove the primary tumour, thus avoiding an ileostomy. Unfortunately when I came round I found I had an ileostomy, and was told that the tumour was unresectable (inoperable).
I was told when I asked that with chemotherapy I should have about a year of "useful" life. I had chemo with a permanent infusion (PICC) line in for three months from September to November, which wasn't too bad, just felt very tired towards the end of it, and went off my food (but kept all my hair!). I was told that it had been effective, and had reduced the primary and larger secondaries by half, with the smaller liver secondaries disappearing.
I have recovered well from the chemo, had a good Christmas with my sons and friends, have had a busy social life, visited friends, been to London and visited the Tate Modern. I am trying to do some of the things that my husband and I would have been doing in the last ten years if he hadn't had Alzheimers - in less than two weeks I am going to Venice and Florence for a fortnight with a friend, and am planning another journey, possibly to the USA which I have never visited, shortly after that to see friends and relatives there (if I can get medical insurance, which is proving almost impossible).
I feel pretty good, in fact at the moment I feel better than I did this time last year!
I see the oncologist for a check up tomorrow, and the surgeon in about a week's time, just before I set off for Italy.
I was interested when my GP, who was quite shocked at how far the disease had progressed, as I hadn't hidden any symptoms from him, said that he believed it taken a hold because I had been under so much stress for so long with my husband that my immune system had got very low and couldn't fight the disease. This is exactly what I had felt. He said that I had stayed so strong and looked after my husband longer than most people would have managed, but that I was perhaps too good at hiding how I felt.
So what is the moral in all this - people tell me that it just isn't fair - but when was life ever fair? I have just read a few posts about reaching the point when you feel you can't cope any more - perhaps carers should not push themselves to that point, but that doesn't take into account the uncomfortable fact that we want to care for those we truly love for as long as humanly possible. But perhaps it is a message to some of you out there that you must value your own lives, and be honest with yourself when you reach the point of no return. I have found that my love for my husband, which was sorely tried at times when he was at home, is still strong, and although he barely recognises me now, he is pleased when I visit, and I know that he is still "in there" somewhere.
I had expected that I would fight for him until the end, but it now looks as though I may go first, so have talked in depth to my sons about what I would want for him, and how to fight his corner, and who to turn to for advice and support. I have also written a comprehensive list of contacts (including the Alzheimers Society), instructions and fact sheets. All the professionals who care for my husband are also aware of how I feel, and I now feel that I have done all I can for his future care. I wish he would die before me so that I can die knowing I have done everything, and if that sounds awful, I just want to know that he is at peace.
I'm sorry this is not a very cheerful posting, but wanted you to know what has happened, and that I hadn't just lost interest - I occasionally look in, but haven't had the energy to be very involved lately. I intend to get as much as possible out of the time I have, so hope to be pretty busy in the near future!
With love to you all
Ruthie
