Mother refusing physical investigations

[TMC83]

Hello,
Would really appreciate some advice. My mother has late stages of Alzheimer’s and since December 2018 has deteriorated a lot physically picking up recurrent UTI’s, refusing food, drinks, medication, personal care and physical examinations and investigations. She seems to be in a lot of pain. She was sectioned under the MHA under a section 2 and admitted to a dementia unit. I spoke with the ward manager today who said they have limits on how much force they can apply when someone is refusing care. This has left me with concerns that she won’t get the physical investigations that she needs as to whether there is an underlying physical complication that has caused her to deteriorate so rapidly. It sounds as though she needs admission to a medical unit where they will sedate her, give her IV fluids and investigate. It’s so difficult to know what to do in my mother’s best interests. Any advice would be hugely welcome. Thanks

 

[karaokePete]

I don't know how to advise in such a situation but thought that a chat with the experts on the Helpline may assist you, the details are

National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

You can also find details of the live on-line advice by clicking this link:-

https://www.alzheimers.org.uk/get-support/national-dementia-helpline/live-online-advice

 

[Grannie G]

Hello @TMC83

It`s really all about quality of life and your mother`s quality of life seems sadly lacking at this stage.

I wonder if you can get the medics to concentrate on pain relief to start with and making her as comfortable as possible. In the same way fluids can be given intravenously so can medication and I would push for this as a priority. It`s not fair your mother should be in so much pain and remain untreated.

It seems the unit she is in have done as much as they are allowed to.

Do you have power of attorney for your mother and could you see her doctors to ask for more help.

 

[Lawson58]

Not advice I'm afraid, just a few thoughts on your mum's current and sad situation.

Pre dementia, what do think your mum would have wanted for herself in this situation? Would she have wanted to continue as she is now?

Considering your mother's dementia and failing physical health, there needs to be a reasonable indication that any intervention will have a positive result for her. Your natural instincts are to try everything to keep your mum with you but it doesn't sound as if life has much left to offer her anymore, no joy, no happiness, not much of a future.

I think it's so hard to put your own feelings aside but at such a time, you need to be able to see things clearly enough so as not to let them effect the best outcome for your mum. Perhaps a blunt talk with her doctors might help you assess the situation so that you'll know whatever decisions you make were for the right reasons.

 

[canary]

I think I agree with @Lawson58
When my mum reached advanced stage she had a stroke. I had a difficult conversation with the doctor about her treatment. Normally after a stroke someone would have doppler scans and probably stents, but I asked him whether it was appropriate for someone in mums condition as I knew the scan would frighten her and she would not be co-operative, and I knew that any surgery would be risky and could progress her dementia much further - at best it would only maintain her existence in a life Im sure she would not have wanted.. The doctor was obviously relieved and agreed that further investigations and treatment were not appropriate. In fact, mum stabilised and was sent back to her care home where she lived for several more months before passing away.

So, I think you need to talk to the doctors and ask if it is really appropriate to do these tests and maybe undergo treatment. Certainly the pain should be addressed, but what else, I cannot say - only you and the doctors can decide/

 

[Kikki21]

My mum was admitted into hospital for something that seemed pretty minor but ultimately this led to her passing away very sadly.... there comes a time when all the antibiotics & IV fluids etc just do not work as in the case of my mum & that her symptoms were probably hiding something more sinister & that further investigation would have led to more serious discoveries but that operations would have been too risky to carry out.
As others have said, it sounds like you need a frank discussion with a dr.

 

[Rosettastone57]

My mum was admitted into hospital for something that seemed pretty minor but ultimately this led to her passing away very sadly.... there comes a time when all the antibiotics & IV fluids etc just do not work as in the case of my mum & that her symptoms were probably hiding something more sinister & that further investigation would have led to more serious discoveries but that operations would have been too risky to carry out.
As others have said, it sounds like you need a frank discussion with a dr.

My mother-in-law went into hospital last summer with dehydration . She had a CT scan and then because of further bowel problems ,the hospital wanted to do a colonoscopy. She refused this as she was frightened. She went into a care home and my husband had a frank conversation with her new GP about further treatment. By this time her capacity had gone and she was late stage. My husband decided that as she was 93 ,frail, with other medical conditions, that she was to be kept pain free and it was not in her best interests to force further investigations on her. She was refusing food and had virtually lost any conversation. Sometimes you have to make difficult decisions but for my mother-in-law it was, I believe the right one

 

[Kikki21]

My mother-in-law went into hospital last summer with dehydration . She had a CT scan and then because of further bowel problems ,the hospital wanted to do a colonoscopy. She refused this as she was frightened. She went into a care home and my husband had a frank conversation with her new GP about further treatment. By this time her capacity had gone and she was late stage. My husband decided that as she was 93 ,frail, with other medical conditions, that she was to be kept pain free and it was not in her best interests to force further investigations on her. She was refusing food and had virtually lost any conversation. Sometimes you have to make difficult decisions but for my mother-in-law it was, I believe the right one

My mum was admitted for sudden vomiting & some pain. She had blood tests done plus a CT scan which was clear apparently but one of her causes of death was constipation & a bowel obstruction. She had a very large hernia on her stomach which may have caused issues but the hernia was never discussed to be removed ever due to her poor state of health. Sometimes the best thing is to leave everything alone & keep the PWD pain free & comfortable.
It is a horrible decision to make but if medical intervention will not benefit the person & improve their quality of life then what are they living for?
It is a huge decision so please do not take it lightly.

 

[Lawson58]

My husband had a massive internal bleed and apart from giving him vitamin K to reverse the effect of blood thinners, they did a colonoscopy and and endoscopy to find the cause of the bleed. They failed so thought about passing a camera through his stomach where the other two procedures couldn't reach. In discussions with me, the conclusion of the doctors was that even if they found something, they felt that my husband couldn't survive a four hour operation so nothing was done. There was no point in doing the extra investigation if he wouldn't survive the surgery which was fair enough. That was over three years ago and apart from the visits to Emergency for two massive nose bleeds, there has been no further internal bleeds.

However, it is quite likely that there will be another bleed but my guess is that they will stabilise him but investigate no further. His physical health is failing and he has suddenly started to look frail so I feel sure that any further major investigations or complex treatment will not bu undertaken. He hates being in hospital and apart from keeping him comfortable and stable, I don't believe they would do anything to prolong his suffering.

 

[TMC83]

Wow thanks so much everyone for all your thoughts and advice and sharing your own experiences. We managed to get my mum to have blood tests today. After this she ate a whole jam sandwich! The doctors have prescribed her regular pain relief and have put her on olanzapine to help with the distress. I’m anxious to hear about when the blood test results come back. I don’t want to give up on my mum just yet. We did as a family talk today about there being a time when we will need to think about palliative care and making mum comfortable as possible rather than keep going with intrusive, distressing procedures. The nurses still can’t get her to take anything from them such as medication and so we are carrying on going in to the ward each day to give her meds. We aren’t getting much respite at all. Wish she would just accept help from the nurses and not be so frightened.