My dad was diagnosed with alzheimer's around 5 years ago and has been gradually declining since then. We've managed to keep him at home as I gave up work last year to come and live with my parents to help my mum care for him. Over the last few months he's occasionally had blood in his urine which the GP was pretty unconcerned about. Then recently he had a spate of about a week where it looked like he was peeing pure blood and clots. My mum managed to get a urine sample from him which was tested for infection but came back negative. However my mum is fixated with the idea that he has bladder cancer and spoke to the GP about this, without my intervention! He has referred my dad to the urology department and tests have been arranged for next Friday. These tests have to be done at our local (huge!) general hospital. My dad hates going out and following a glaucoma clinic appointment earlier this year we decided not to put him through any more appointments outside of the house. I have made it clear to my mum and family members that I think its cruel to my dad to make him go. Also, what is their hoped for outcome? Whatever the diagnosis he isn't going to be having any treatment other than pain relief. Incidentally, there's been no blood for the last week. Advice please
I don't want my dad to have tests
- Thread starter Janey J
- Start date
Hi @Janey J I live with my dad too on a temporary basis as his alzheimers advanced earlier this year after a hospital stay.
Dad has oesophageal cancer and is not being treated for it but when he stopped eating 18 months ago we had to have it investigated as he could not keep anything down. He had a stent fitted very quickly and has done well since. I should add that this was done against the express wishes of other family members.
Without the stent he would not have lasted another month. Dad still has check ups but forgets immediately. He is on palliative care only which means no life prolonging treatment but he can have anything that will keep him comfortable, including blood transfusions and antibiotics
I have been told by dads doctor that I should do everything possible to keep him out of hospital and I agree, it is even written into his care plan but what if he has a fall and breaks something, it will have to be treated somehow. Getting dad to appointments is a huge effort but I get him there somehow but then again dad is very compliant.
If dad was peeing blood I could not ignore it even if he was not going to be treated if it turned out to be cancer. There is always the chance that it is something minor that could be easily treated. I agree that it is encouraging that the blood seems to have disappeared. I have family members that would not agree with me but dad's well being and comfort are my priorities at the moment. I will admit that we skipped dad's glaucoma appointment last time.
It is a very difficult subject but I don't think it is possible to make hard and fast rules. You don't say how old your dad is and I also think your mums wishes have to be listened to. Sorry I am not a lot of help but hopefully you will get others replying very soon.
Dad has oesophageal cancer and is not being treated for it but when he stopped eating 18 months ago we had to have it investigated as he could not keep anything down. He had a stent fitted very quickly and has done well since. I should add that this was done against the express wishes of other family members.
Without the stent he would not have lasted another month. Dad still has check ups but forgets immediately. He is on palliative care only which means no life prolonging treatment but he can have anything that will keep him comfortable, including blood transfusions and antibiotics
I have been told by dads doctor that I should do everything possible to keep him out of hospital and I agree, it is even written into his care plan but what if he has a fall and breaks something, it will have to be treated somehow. Getting dad to appointments is a huge effort but I get him there somehow but then again dad is very compliant.
If dad was peeing blood I could not ignore it even if he was not going to be treated if it turned out to be cancer. There is always the chance that it is something minor that could be easily treated. I agree that it is encouraging that the blood seems to have disappeared. I have family members that would not agree with me but dad's well being and comfort are my priorities at the moment. I will admit that we skipped dad's glaucoma appointment last time.
It is a very difficult subject but I don't think it is possible to make hard and fast rules. You don't say how old your dad is and I also think your mums wishes have to be listened to. Sorry I am not a lot of help but hopefully you will get others replying very soon.
Does anyone have health & welfare power of attorney? As above, I think that your Mum's views need to be taken into account.
We were in a similar position last year when we were informed that there was a possibility that Mum had cancer. My sister and I discussed this and decided to have exploratory tests done to see what the problem was. Our view was that whatever the outcome we wanted to know as the constant not knowing one way or the other would have been very stressful for us both (having also recently lost our sister to cancer). We were aware that potential treatment options would be limited but like Duggies-girl we felt that if there was a minor issue that could be treated then ignoring it wasn't an option as Mum's wellbeing was the priority. Thankfully the test was negative. If the tests are not carried out your Mum is likely to remain fixated on the fact that your Dad may have cancer so you need to consider the effect this will have on her mental health. The fact that the GP has made the referral for tests after heavier blood loss/clots - having previously not been concerned - suggests that they don't consider the tests to be unnecessary. A hospital visit isn't pleasant and it isn't an easy position to be in but I think the pros and cons of having the tests need to be carefully considered. I hope that your Dad remains comfortable and pain free whatever the outcome.
Thank you, I have lasting power of attorney, along with my sister and brother for both health and finances. My siblings are happy to go along with the tests but I just feel so sorry for my poor dad who will be really upset by the tests. Everyone is agreed that he won't proceed to any treatment so it just seems so pointless. Also, my mum revels in illness and subjected us to loads of unnecessary medical interventions growing up so this is probably also making me feel mutinous!
I can appreciate why you feel mutinous but as your siblings are happy to proceed with the tests I think in your position I'd just bite my tongue and let them go ahead. My sister and I are both attorneys and thankfully we haven't disagreed on anything yet but in your position, with the other two attorneys in agreement, I think I'd try to avoid causing any upset. Being a carer is difficult enough without adding family disagreements into the mix. Good luck, let us know how things go. This forum is great for getting support from others in similar situations so hopefully you'll continue to post. Sometimes just having a rant on here helps!
I think I might be about to be going through a similar journey as my mums GP has referred her to oncology today with a concern re breast cancer. Last year my two siblings and me self were in agreement not to proceed with some invasive treatment for skin lesions ( not cancerous). I suspect that will be the same opinion this time if breast cancer is diagnosed but we haven't had a discussion yet.
Hopefully we will get an appointment within the two week window so won't have to wait too long.
Hopefully we will get an appointment within the two week window so won't have to wait too long.
Last year my mum was referred on the 2 week pathway for investigation for suspected bladder cancer. Same symptoms as your dad. I had also discussed with the doctor what we would want if it was a positive result deciding mum was too far advanced with Alzheimer's to put her through treatment. It was a bit of a struggle with the cystoscopy but we were with her the whole time & our fears were unfounded thankfully. We were very relieved to have our minds put at rest. We never did know what caused the blood but it never happened again to that extent. I hope all goes well for your dad too.
Completely understand your position @Janey J as I have to take Mum for regular appointments at our local hospital and they are very stressful for her (and me!). However she has forgotten the experience within half an hour so it is just a matter of getting through that small amount of time, for which we can make PWD arrangements with the hospital and which include girding our loins, as it were.
I agree with the other posters that the wishes of your mother and siblings need to be taken into account. Your mother might have a history of panic over medical issues but we all know the boy who cried wolf eventually got eaten, don’t we?
Just imagine for a moment that your father does have cancer. No you won’t put him through life prolonging treatment BUT eventually he would need palliative care. How would that be planned for if you don’t have a diagnosis?
It is a moment in time which will pass and the results will either put everyone’s minds at rest or will prime the medical services to factor in palliative care. I do hope that the result is the former.
I agree with the other posters that the wishes of your mother and siblings need to be taken into account. Your mother might have a history of panic over medical issues but we all know the boy who cried wolf eventually got eaten, don’t we?
Just imagine for a moment that your father does have cancer. No you won’t put him through life prolonging treatment BUT eventually he would need palliative care. How would that be planned for if you don’t have a diagnosis?
It is a moment in time which will pass and the results will either put everyone’s minds at rest or will prime the medical services to factor in palliative care. I do hope that the result is the former.
Hi @Janey J, we had similar with my Dad, my Mum and I met with the GP and Care Home and decided that we didn't want further invasive investigations, that served no point and caused my Dad (who was advanced in dementia) and incredible amount of stress. If he was diagnosed, so what? Going through any treatment at that point did not serve Dad's best interests. I have to also say it did not affect any palliative care further down the line. It's a difficult decision if other members of the family don't agree (we were all in agreement), but I fully support your own view.
Whatever the problem is with your dad, lack of a diagnosis now may mean that he won't get whatever treatment he needs to be comfortable in the future.
I think you need to be thinking in terms of management rather than a treatment or a cure for your dad and though that may mean tests now, it might potentially be better for him in the future.
I think you need to be thinking in terms of management rather than a treatment or a cure for your dad and though that may mean tests now, it might potentially be better for him in the future.
Hello @Janey J Welcome to the forum. I'm sorry to read about the difficulties you are currently going through, as you can see from the replies you have received already, we can all empathise with the difficulties of taking a person with dementia (pwd) to appointments and/or the upset it can cause to attend one.
That said though I still do get my dad to those appointments - with help that is, not sure I can do it on my own - because regardless of whether treatment is involved, it is all about making the pwd as comfortable as possible, an sentiment expressed by Lawson58 and Duggies-girl that I agree with. All the best to you.
That said though I still do get my dad to those appointments - with help that is, not sure I can do it on my own - because regardless of whether treatment is involved, it is all about making the pwd as comfortable as possible, an sentiment expressed by Lawson58 and Duggies-girl that I agree with. All the best to you.
