No More Treatment

[AlifieBow]

We appear to be at the point where mum is too frail and ridden with dementia to take on any more chemo for her Myeloma that is showing signs of returning. Whilst I am relieved that they will not be suggesting more treatment I am also feeling guilty as I hinted that I did not think it was appropriate. I know that they would treat her regardless of what I had said and the home has also said they feel further treatment would not be in her best interest but this feeling of guilt - for wanting her not to go on much longer, for this all to be over is really hard to ignore. Do I wish it for her or for me?

Its been such a long journey to get to where we are today but still, it is a surprise how frail she is, how unlike herself she is, how sad she is, how cruel this all is. I know every minute of life is precious so why do I wish hers away? The Altzheimers is now advanced but she is still alive.

When my dad died of dementia I felt we lost him long before he physically died and was then shocked at how 'final' it is when the body dies too. I know this is coming again - I am wishing her gone and then will feel bad about that.

I can only get down to see her once a month which makes it worse as I feel I have abandoned her - I did feel slightly better at the last visit as she really had no recollection of me being there but I still feel guilty for not being there whether she knows it or not.

It's just all so sad.

 

[Jessbow]

Terribly so.

My mother was riddled with dementia, partially sighted with Diabetes.

She needed a heart valve op. I declined it on her behalf. It finished for her- but although I agonised I know i my heart it was the right decision. Its wasnt just the op, it was the recovery and all that entailed made me realise, that, at some point, naturehas to be allowed to take its course

( Interestinglymy decision to say the op was innnapropriate did cause CHC funding to kick in)

 

[Jaded'n'faded]

Dementia brings up so many conflicting emotions - we don't want our loved ones to go but we can't bear to see them suffering and continuing on with no quality of life.

I'd ask yourself a few questions: what would your mother say, what would she want? Also, is the treatment going to make her better? Is it a 'spoonful of sugar' treatment or something gruelling? Any procedures tend to make dementia worse and you say your mum is very frail. For what it's worth, if the medics thought further treatment would help, they would go ahead with it whatever your opinion was.

Please don't agonise over this - none of it is your fault, there's nothing you can do or change about your mother's condition. You know what is coming because you've been through it with your dad, so maybe it's time to just accept things as they are and leave it to nature.

 

[jennifer1967]

i always ask what are the benefits and if there isnt any then really what would interventions do your mum and what would she get out of it. she probably wouldnt tolerate it where she is so frail and to what end would it help her

 

[Duggies-girl]

@AlifieBow It's awful and I can't offer any advice. My dad had advanced oesophageal cancer and alzheimers but he was still okay for a long time, he was good humoured and we had some fun times. He declined badly after a stay in hospital and he just slowly faded away physically. I found the physical changes very hard to deal with, dad shrank, he became bent and was just skin and bones at the end, I was shocked at how frail a body can become and yet still go on. The last two weeks were very hard but dad couldn't retain information and seemed to think that he was fine. It's a cruel disease, I could cope with the cancer, it was the dementia that made everything worse.

I had POA but I made no choices for dad although like you I wished it was over. I just let the doctors make all the decisions and luckily they made the same decisions that I would have. Dad had palliative treatment but nothing that would prolong his suffering. Dad's oncologist was great, she said he could have anything that would keep him comfortable and pain free but nothing that could cause harm. Dad did remarkably well with just palliative care, in fact probably better than he would have if he had been treated with chemo or radiotherapy which may have caused him harm.

Don't feel guilty it's not your fault, it's just the way things are. I think you are doing all that you can and I hope that your mums suffering is not prolonged.

 

[canary]

Just because doctors may be able to do things, doesnt necessarily mean that they should.
It is not just you thinking that treatment is not appropriate - the care home is saying this too and the doctors would over-rule you if they thought it would help.

The end stages are horrible and whatever you do you seem to end up feeling guilty
Would it help to ask yourself - would doing this increase her life, or merely extend her death?

 

[Lawson58]

I would go so far as to say that you are actually showing great kindness even when you know the grief that is to come.

I believe that interventions when a person is at an advanced and terminal stage of any disease is quite cruel both for the patient and for what it puts family through. To inflict major treatment without any prospect of improving quality of life just to merely extend it serves no purpose.

When my husband had a cardiac arrest, they had no idea if he would recover or how much damage would have been done to his brain, that he might not be able to breathe on his own. The director of ICU spent time with me, carefully explaining the situation and what the options would be. He was quite gentle but very honest about the fact that I might have to make some hard decisions but that he would be there to help.

He explained what the process would be if he couldn’t breathe on his own and how the decision to turn off his ventilator is made and the protocols to be followed. I know now that almost nine years later I may have to make a similar decision to turn off his defibrillator at some time in the future.

Waiting for someone to die makes you feel totally lost and helpless but to be honest, I think without intervention your mum will take herself when she is ready. At the moment her pain and distress is more important than yours but it is hard to let go.

 

[Lynmax]

We have just made the decision that mum will have no more treatment and will not go in to hospital again for IV fluids or antibiotics. This was with the agreement of her GP and care home manager and it has been written on her care notes. The wording of the notes is quite upsetting as it says we are withdrawing treatment but we were on a never ending cycle of refusal to eat or drink, infections, hospital treatment for fluids etc, back to care home then all starting again after a few days.

I think she is EOL now but her GP feels she is still too feisty to be at that stage even though she has now not eaten anything bar a few milkshakes for over a week nor drunk more than a few sips. But she is awake most of the day and still able to resist personal care. Everything is in place for her final days, district nurses are already visiting and her GP reviews her medications every week and will prescribe pain relief to make her comfortable. It’s just a waiting game.

I’ve not seen mum for three weeks as I had Covid quite badly and now there is a vomiting bug in the care home so visiting is banned for 72 hours.

You know that you have made the right decision although it is a very hard thing to do.

 

[millalm]

Wouldn't it be so much more reflective of your decision to say you are agreeing to provide 'comfort care' to your Mum. It's no wonder we ,as caregivers, feel such burden of guilt when making decisions about our loved ones with dementia. Starting with 'putting Mum in a home' instead of 'finding a home for Mum where she will be safe and well cared for,' ending with 'withdrawing treatment' instead of 'putting a palliative approach in place to ensure her final days are as comfortable as possible'.
I am on the same road now for the last 9 years and I have made the same difficult decisions you have @Lynmax, always trying to do what's best for my Mum in a situation where there is no good outcome.

Stay strong and stay the course

 

[Lynmax]

Wouldn't it be so much more reflective of your decision to say you are agreeing to provide 'comfort care' to your Mum. It's no wonder we ,as caregivers, feel such burden of guilt when making decisions about our loved ones with dementia. Starting with 'putting Mum in a home' instead of 'finding a home for Mum where she will be safe and well cared for,' ending with 'withdrawing treatment' instead of 'putting a palliative approach in place to ensure her final days are as comfortable as possible'.
I am on the same road now for the last 9 years and I have made the same difficult decisions you have @Lynmax, always trying to do what's best for my Mum in a situation where there is no good outcome.

Stay strong and stay the course

I like the wording “ comfort care”, that is exactly what we are doing.

 

[canary]

Wouldn't it be so much more reflective of your decision to say you are agreeing to provide 'comfort care' to your Mum. It's no wonder we ,as caregivers, feel such burden of guilt when making decisions about our loved ones with dementia. Starting with 'putting Mum in a home' instead of 'finding a home for Mum where she will be safe and well cared for,' ending with 'withdrawing treatment' instead of 'putting a palliative approach in place to ensure her final days are as comfortable as possible'.

I agree that "withdrawing treatment" or "withholding treatment" sounds horrible, but it is, unfortunately, the medical term, so this is how doctors refer to it and what gets put in medical records and care plans. Much nicer to think of it as "comfort care" because, yes indeed, that is what you are doing - often referred to as "keeping them comfortable and pain-free".

Im sure you have done the right thing @Lynmax
xx

 

[AlifieBow]

Thank you everyone - comforting and sensible words. Hugs to all on this journey x