Mum had a blood test last week as part of her regular diabetes review. We got a call yesterday to take her to see the GP as a matter of urgency. Turns out she has a low red blood count. The GP launched ino the possibiliy of it being caused by bowel cancer, despite Mum having none of the usual symptoms and insisted on referring her to hospital. Mum has been anaemic in the past but hasn't taken iron tablets for the last couple of years. And she has leukaemia. I pointed out both of these things but got the impression that The System says that you have to refer a possible bowel cancer regardless of the patient's situation. Can anyone tell me what is the point of upsetting an 86 year old with vascular dementia, subjecting her to an invasive procedure and possibly far more drastic treatment? If there is a major problem what, if anything, will be done about it? Mum was quite agitated when we got home but hopefully by today she will have forgotten about seeing the GP and won't worry. She has a small skin cancer removed a couple of months ago and dealing with that was bad enough. I just want her to be peaceful and untroubled for as long as possible and medical investigations are not going to help.
Doctors
- Thread starter Lancashirelady
- Start date
I absolutely agree with what you say, but I suspect that if the doctor had proposed taking no further action in this scenario, some families would have accused him of refusing treatment, age discrimination, trying to save the NHS money on treatment, etc. so it's not easy for them, especially where the patient lacks capacity.
My FIL had bladder cancer and was increasingly exhausted by the treatment. It was a very brave doctor in the hospital who finally said to us, 'I'm not sure your father actually wants to go on with this treatment'. She suggested he spoke to one of the hospice community nurses who was absolutely wonderful and enabled FIL to decide that he just wanted to be kept as comfortable and pain free as possible for the time he had left. Of course, he didn't have dementia and understood 100% what he was doing.
Another reason perhaps for us all to tell our loved ones how we feel about these issues while we are still able to? My mum knew what happened to several friends and family members with dementia and had always said that she wanted someone to 'hit her over the head with a rolling pin if I ever get like that'. It started off jokingly, but as things grew worse it became more serious and it did help us when things like DNR had to be decided.
My FIL had bladder cancer and was increasingly exhausted by the treatment. It was a very brave doctor in the hospital who finally said to us, 'I'm not sure your father actually wants to go on with this treatment'. She suggested he spoke to one of the hospice community nurses who was absolutely wonderful and enabled FIL to decide that he just wanted to be kept as comfortable and pain free as possible for the time he had left. Of course, he didn't have dementia and understood 100% what he was doing.
Another reason perhaps for us all to tell our loved ones how we feel about these issues while we are still able to? My mum knew what happened to several friends and family members with dementia and had always said that she wanted someone to 'hit her over the head with a rolling pin if I ever get like that'. It started off jokingly, but as things grew worse it became more serious and it did help us when things like DNR had to be decided.
My Mum 74 was diagnosed with Chronic Lymphocytipc Leukemia in 2011. She has blood tests every 3 months, all her blood counts are within normal limits apart from her white blood cells and lymphocytes which are triple normal rate, and have been fluctuating up and down over that time but stable.
In 2012 after Mum started to lose weight, because she didn't feel like eating, had upset stomach and gas, and constant constipation, she was referred for a CT colonography. She then had 2 colonoscopies and had removed several small polyps, removed, but surgery recommnded for a larger pre cancerous one. Mum had no bleeding from the bowell. This was all at the start of Mums dementia.
Mum found the bowel prep, enemas very distressing. She got through the surgery well, but we feel the GA hastened her dementia.
Mums cancer was early stage and no further treatment necessary.
All her blood tests are still stable. We have decided that we won't put Mum through any more colonoscopies or diagnostic tests that may cause distress.
What type of Leukemia has your Mum got. If Its CLL like my Mum, has her white blood cells increased therefore decreasing her other blood counts?
In 2012 after Mum started to lose weight, because she didn't feel like eating, had upset stomach and gas, and constant constipation, she was referred for a CT colonography. She then had 2 colonoscopies and had removed several small polyps, removed, but surgery recommnded for a larger pre cancerous one. Mum had no bleeding from the bowell. This was all at the start of Mums dementia.
Mum found the bowel prep, enemas very distressing. She got through the surgery well, but we feel the GA hastened her dementia.
Mums cancer was early stage and no further treatment necessary.
All her blood tests are still stable. We have decided that we won't put Mum through any more colonoscopies or diagnostic tests that may cause distress.
What type of Leukemia has your Mum got. If Its CLL like my Mum, has her white blood cells increased therefore decreasing her other blood counts?
To be honest, I don't actually know. She has had it for years - well before she started showing signs of dementia - and never went into details with me. She had an annual hospital review then somehow got lost in the system and hasn't had a recall since 2011, which suited her fine. Like many older people she doesn't do doctors!
My Mum said years ago that she wanted DNR. We were put to the test about 8 years ago when she had pneumonia and I really wavered when asked about treatment. A nurse told me that if we went for DNR the doctors would just make her comfortable with no intervention even though she was not yet desperately ill. I felt that she deserved a chance so opted for treatment. She never did need resuscitation, though spent a week in high dependency.
Mum is still quite lucid. Her memory is the major problem. She knows she can't remember and finds it distressing. Her eyesight is also very poor so she can;t read or do a lot of activities. She tells me every time I visit that she would happily die in the next 10 minutes, which is pretty upsetting but I can understand that she is bored rigid much of the time and doesn't get much pleasure out of life any more. If it came down to DNR now I wouldn't hesitate much as I don't want to lose her.
It's so hard isn't it, to hear that being said again and again. You're trying to make your mum's life as good as it can be in the circumstances, and it feels like a rejection of your efforts. At the same time, you have to acknowledge that you would probably feel the same and that there is vey little for her to look forward to.
I feel for you - it's so distressing to see this. My relative had a breast cancer - that couldn't be treated with drugs - diagnosed at exactly the same stage. I must say that at the time it was an incredibly difficult thing to manage, and in the end I was told that although they were asking me what I would consent to, this was theoretical because they could overrule my decision. So I decided to go along with it, and my relative had surgery. Although she coped very well with the surgery, it was the run up to it, the appointments, and the stay in hospital that was so damaging for her (and me).
Looking back on it now I wish that I had dug my heels in more, because I think it would have been kinder to her not to have had to go through all that - but at the time they don't know how long your relative is going to live with the VD, so they want to avoid a future painful illness. However, we all know that VD is a more aggressive form of dementia and the likely life span of someone who has the diagnosis is more limited than with alzheimers. I would try and have a reasoned conversation with a consultant at the hospital about it, before you agree to any invasive tests or treatments. In addition, I am sure now that the motivation to have the surgery done was due to NHS targets, and as someone else has mentioned, not wanting to be seen not to treat an elderly person.
Looking back on it now I wish that I had dug my heels in more, because I think it would have been kinder to her not to have had to go through all that - but at the time they don't know how long your relative is going to live with the VD, so they want to avoid a future painful illness. However, we all know that VD is a more aggressive form of dementia and the likely life span of someone who has the diagnosis is more limited than with alzheimers. I would try and have a reasoned conversation with a consultant at the hospital about it, before you agree to any invasive tests or treatments. In addition, I am sure now that the motivation to have the surgery done was due to NHS targets, and as someone else has mentioned, not wanting to be seen not to treat an elderly person.
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