has anyone been in this position

[sammie]

hi everyone i would welcome some advice on this please

my dad (80) is end stage now. the issue at the moment is chest infections. in the last 8 months he has had 6 chest infections which have been treated with antibiotics. the problem is we are in a vicious cycle. he eats (pureed) food he aspirates then gets a chest infection (his swallowing reflex is slowly going)

at what point do you say enough with the antibiotics. they are obviously not working as he is roughly on them 3 weeks out of four at the moment .

i am going to arrange a meeting with dad's gp i am well aware of the ramifications of withholding antibiotics - can families request this ?

has anyone been in this position

 

[BeckyJan]

We did have a similar situation and then the GP discussed with me what I wanted. I have always said comfort was the most important thing for my husband, quality not quantity.

I agree discuss this with the GP and be honest about your own views. There is nothing to be ashamed of when you say 'its time to stop antibiotics'. In your situation I think I would say that although it would be heartbreaking.

Its not quite the same but similar. My husband's pacemaker is due to be changed. The GP and I said he would not withstand the journey to the hospital or the procedure and it will not be done. I feel pretty awful but know and have been assured by 3 medics that it is the right decision.

I am sure others will be along with their views. Whatever you decide I believe will be right as you know the situation best including what your Dad would wish for himself.

My best wishes

 

[rajahh]

MAny years ago when my mother had Alzheimers, there were not care homes as such and she was placed in a psychiatric geriatric ward of a hospital. She lived there 18 months before she got pneumonia. she too ate pureed food only. She was not treated for pneumonia, I am not sure whether this was discussed with my father or not, but I actually was grateful.

It was a peaceful end for her, and we also were aware that this is what would be happening.

She had not known any of us for 2 years, or spoken either, there was no quality at all in her life.

Now I have a husband with Alzheimers, whose quality of life I feel is close to zero although he seems fairly contented.

He too needs a pacemaker, but refused it himself over 10 years ago so I certainly would not let one be fitted now even if his heart condition worsened. He also has prostate cancer but is on injections, it all depends on the side effects whether they will continue or not.

It is a mine field, but think it over carefully, and come to your own decision, .

Jeannette

 

[nicoise]

Dear Sammie,

When my mum had treatment for two bouts of pneumonia, and each time her physical condition was worse, and her dementia worse, and her swallowing almost non-existent, we were asked whether a third infection (anticipated due to aspiration problems) should be treated. Any further antibiotic treatment would require re-admittance to hospital for intravenous administration.

By this time Mum was doubly incontinent, immobile, virtually unable to swallow food or drinks, almost without speech or lucidity. Her quality of life was nigh on non-existent in my eyes. I know from conversations over the years that this was not the way she would have chosen to live.

We took the decision not to pursue further treatment, and she died a short time later (with Liverpool Care Pathway drug treatment) when the next infection arose.

Our path was clear to us, but it still breaks your heart when the time comes. But I know without any doubt it would have also been my mother's choice could she have made it, so perhaps I was lucky in not having any burden of guilt through not knowing the way she felt about it. There was also no question of any possibility of improvement or recovery in her condition or abilities - the doctors had made that clear during my questioning.

It is very tough to be the one to make and communicate that decision. I wish you strength in thinking through the options available - ask the medics for total honesty and that might make it clearer.

 

[candymostdandy@]

Sammie, 8 years ago we agressively treated my fathers who had parkinsons with medication. The experience of the last three months, and especially the last week of his life are still with me today.

Since then I have been caring for my mother with vascular dementia at home.

I discussed my wishes with her GP sometime ago, and when mum took a turn for the worst two weeks ago, the decision with mum's gp and the rest of the family wash not to treat but to keep mum comfortable.

Mum now hasn't taken any food or drink for 10 days, is on a syringe driver and somehow she still hangs on to life.

For the past two days the nurses say that her breathing is cheyne stoking.

She is peaceful even if she has still not completed her journey.

I know that we have made the right decision.

 

[sammie]

thank you so much for your replies it really does help. i am going to call dads GP on Monday to see if as a family we can have a meeting.

i sat and talked this through with one of my dad's nurses who was very transparent and answered every question i asked and the Liverpool care pathway was discussed. i know my dad would not want to be in this position ( he stated this several times over the years watching 5 of his siblings with Alzheimer's)

thank you again your support is invaluable xxx

 

[goodtimes007]

Sammie - i feel for you.
my mum is in hosp now with last stages of Alzheimers. she was taken in by albulance on tuesday last week with aspreational phenumioa (sorry about the spelling!) also has a water infection. she hasnt been able to swallow for a while and before this there was talk of a peg feed which us as a family dont want her to have (we saw her sister live it with for 15yrs...and even mum then said she didnt want to be like her sister) 4 days of iv antibiotics and on the friday when we had talked about calling it a day and withdrawing her treatment with the doctors she started to show signs with the antibiotics that she was starting to fight it. shes still critical but stable and is on a very high concentrate of oxygen but as she will only breath thru her mouth her mouth and tounge is oh so dry and cracked looking.
we as a family just worry now this is going to go round and round and when do you draw the line?

does anyone know if we as a family have the right to say to a doctor (if she got ill again) no we dont want her having antibiotcs?
no we dont want her to have a peg feed?
she has no quality of life atall - and we know its not what she would of wanted.

any comments welcome thankyou
Debbie x

 

[nicoise]

Dear Debbie,

does anyone know if we as a family have the right to say to a doctor (if she got ill again) no we dont want her having antibiotcs?
no we dont want her to have a peg feed?

It may be that you are consulted by the doctors if another course of treatment is needed, and your mother is unable to speak for herself - or perhaps "lacks capacity" if that is the situation.

My mother also had end stage Parkinson's, so there was a very big question as to what would be achieved by yet another treatment of infection, along with the threat of C diff as a result of antibiotics lowering resistance to such opportunistic bacteria. We were asked if we knew what my mother's view would be if she could speak about continued treatment. Thus we were not making the decision, just speaking for her knowing her views. (She could no longer receive her PD medication, so her body had pretty much stopped working.)

The hospital doctors would have continued to treat her if that was what we wished. But they did clearly tell us what could happen, and what would happen (the two being different) - but the choice was ours. There was never a suggestion of not treating her because she had dementia, or had end-stage Parkinson's - but the question was what we were hoping to achieve versus what was possible.

Talk to the doctors, Debbie - they should be happy to tell you everything you need to know, and what their stance is.

 

[goodtimes007]

thankyou for your reply. Tomorrow my family hope to see the consultant to find out if there is any more improvement with her infection, then we can take it from there. Its so hard because we all know she didnt ever want to be in this situation as she watched her sister go this way too.

its such a cruel awful disease and so unfair x

 

[sammie]

hi Debbie

thinking of you in this horrible situation xxxxxxxxxxxxx

just about to ring dad's GP will let you know how it goes

 

[sammie]

hi

we have a meeting next week with dad's GP.

thanks again for all your replies

 

[Dollychris]

Thinking of you all and knowing what you are going through.................xx

hi

we have a meeting next week with dad's GP.

thanks again for all your replies

Dear Sammie and all,
I am heartbroken to hear of your distress and understand how awful it is to want what is best for your family yet to feel guilty at voicing your thoughts.
I haven't been on here for quite a while but intended to do so as this site is invaluable if carers are to stay sane. I was so grateful for the information because it is just so difficult to accept that a parent will not improve and there is always that silent prayer that the professionals have made a mistake and things just maybe will improve?
On the better days my family felt that my Mum wasn't that ill - if you know what I mean and then hours later back to being so very confused. It is only natural that acceptance comes with time and the inevitable is eventually accepted.
You must talk to those who can help and advise as much as possible and voice your concerns over and over again. I am glad we did.
I'll condense what has happened in the past year.
My 84 Mum fell a year last December, was admitted to hospital, diagnosed with vascular dementure and 3 months later went into a care home. Not much help from the Social worker - we just felt that as Mum was bed-blocking she wanted her out of the hospital asap. We found a home nearby, sold Mum's house to fund care and she went to the home. They loved her but we just were not happy. She lost even more weight (was only 6 stone going there) and wanted to come home. We fought to get her home as we felt she was not being cared for sufficiently and despite voicing our concerns that she was not eating the GP said she was on a list for a scan of her abdomen - nothing happened. We visted every day and fought to get her home. I thank God that my sister gave as good as she got and we brought her home at the beginning of June.
She just could not eat, stopped enjoying her cuppa and developed an infection. When she was in hospital we demanded her scan be done as she could keep no food down. The scan revealed advanced lung cancer and we were devastated and heartbroken.
New fears were how on earth would we cope and how would our darling mother end her days - in agony or in peace at home with us? Mum came home (was doubly incontinent) to my dear sister's house and died on Sept 3rd peacefully - she just went to sleep.
I shed tears as I write this but wanted you all to know that you know your family best of all and if you know what your Mum would want you fight for it.
What if my sister hadn't fought so hard to fetch Mum home? That question haunts us because she would have died in her little room in the care home and we never would have known about the cancer. We had a chance to care for her and love her to bits!
We all know our parents and when the roles are reversed it is ok for us to voice what we know is right. Although I thought I was ready to let Mum go can I just say that was not true - the shock was just as bad as when my darling Dad died suddenly nearly 8 years ago of a heart attack. All we would all wish for our loved ones is that the end is peacefull and that we can be there to show our love right until the very end - like they did for us throughout our lives................
Bless you all and I hope that your beloved ones have the dignified end that they deserve - with their loved ones and totaly free of pain. I hope the GP appt goes well for you Sammie.
Much love and my heartfelt concern to you all.
Chris.
xx