Morbid thoughts in the middle of the night!!

[copsham]

What to do?
Briefly - mum has vasc dementia, aged 87 yrs, in a good nursing home, frequent UTI's, is fairly settled and content, v v poor memory, incontinent, likes to sleep for a lot of the day, gets up for meals in the dining room.

Recently she collapsed and was unconscious for 2 mins, ambulance called, brain scan, xray and other tests done "nothing found". There was a follow up appt at the "Rapid Assessment Syncope Clinic" where they said another test and possibly having a pacemaker fitted.

My concern is recently reading about someone who was in the terminal stages of cancer and was "fading away" with his family with him but as he faded the pacemaker kept triggering him back to life.

I don't know how to put this ..... I thought my mum would "fade away" at some point. She enjoys sleeping and maybe would not wake up. BUT if she had a pacemaker she would not be given this peace and could have a very stressful passing..

Can anyone confirm that my suppositions are correct? If so can she/we refuse a pacemaker? Last time she was ill she said "If I were a dog they would put me down" Pre-dementia she rarely went to the doctor preferring to treat herself. We have an EPA finances but not health and welfare.

Is it wrong to think "let her fade". I would hate her to be like some of the older people in the home who are totally bedbound and very frail, some contented and some not but. hanging on!!!!

 

[Cynwri]

My husband and I take care of my FIL. There has been a couple of times when he goes through this stage for a couple of days at a time where all he does is eat a small snack and goes right back to sleep. We have had quite a few conversations about how it would be easiest if he faded away in his sleep. No matter how much we don't want to lose him, we are losing him slowly everyday.
This is a truly selfish thought, but it would be easier if we didn't have to continue watching him deteriorate even more. We would like to believe he wouldn't want to continue on anymore this way either. So, I guess what I'm trying to say is, you are not alone. It's occurred to us as well. This is why I needed to find a place like this. Even though my husband and I are working together, sometimes we feel like we are alone with all of this.

 

[Weary]

I really do think they should withold treatment and let our loved ones go. Who in their right minds wants to watch them deteriorate over years and years with no quality of life and no cure? I know this subject is a hot potato but with so many people now suffering the government really need to address the issue.

 

[Witzend]

My mother's CH invites relatives in annually for a 'care plan review' and for the past few (she is now 96 with advanced AD) this has included asking our wishes re end of life.

We have said that unless it is ABSOLUTELY necessary (e.g. Another broken hip, God forbid) there should be no hospital - preferably there should just palliative care to keep her as comfortable and peaceful as possible. In the sort of scenario you describe I would hope very much that knowing our wishes (which is certainly what our mother would want for herself) they would let Nature take its course.

However, I think care staff and medics will often feel obliged to do whatever it takes to keep someone alive, unless relatives have specifically made their wishes known. They may be afraid of being accused of, or sued for neglect. And I think they are sometimes nervous of broaching the subject at all, in case people find it upsetting, or even become very indignant that anyone should suggest that he or she be allowed to die. There is no doubt that some relatives do want absolutely everything done to keep someone going, no matter what pitiful state they're in. I can only say, for me and mine, that we think it would be positively cruel to intervene try to keep our poor mother going now, if Nature were doing her best to try to let her go.

It is a very difficult and emotive subject, though, and some people do think you are callous or heartless if you would prefer to allow someone to die, when in fact it is the reverse - you think the person has suffered this awful disease with its complete stripping away of their dignity, long enough.

I do not think you should be afraid of telling NH staff and medics that given your mother's age and stage of dementia, you would not think it in her best interests to have a pacemaker fitted. Quite apart from anything else, hospital can be very distressing for someone with dementia, when they do not understand what is going on or why, and cannot understand that they must leave dressings and drips etc. alone.

 

[Raggedrobin]

I agree totally with Witzend. Copsham, it is perfectly understandable not to keep someone going in a way that is after all an intervention over nature. But I would make very sure you have made this clear to the ch and also to her GP. I agreed a DNR and was rhen told the GP had to agree that too for it to be valid. On her care plan it also states that I would prefer her not to go to hospital for anything but to receive palliative care at the home.
Re the pacemaker, quite agree, not a good idea and besides anaesthetics can make dementia worse, which is what happened to my mum. If she is relatively stable, why upset the apple cart. I think that you need to make sure the care home has your wishes which would have been her wishes, in writing, especially that you don't want her to go to nospital. With an op, i guess the consultants have to state what can be done, it doesn't mean it has to be done. But I think you are absolutely right in your thinking, just make sure the ch knows. Our ch didn't have a DNR form from me initially and a njrse said they were always reluctant to raise it with relatives, as some people respond badly to it.

 

[copsham]

Thanks all -really helpful. I have done a "do not resuscitate form in respect of my mother with her GP. But when she was rushed to hospital a couple of weeks ago I found out this means DNR if she were to die but could possibly be bought round. Apparently it does not mean do not treat.

Ragged Robin said " If she is relatively stable, why upset the apple cart" so true!

Has any one on the forum got a relative with a pacemaker fitted - how did they react?

 

[jaymor]

I had a long talk with my husband's doctor a few weeks ago when my husband was seriously ill and no one including the Doctor expected him to pull through. I had DNR in place.

The talk with the doctor got us a plan in place that is set up and signed off by the doctor and the nursing home.

I want the nursing home to deal with everything. Hospital is only to be used for broken bones, anything to do with dementia is in the hands of his doctor and the care home. He already receives fluids from time to time via a subcut that the nursing sister does at his home so dehydration is not a problem. His food is puréed and his drinks thickened. If he refuses to eat then that is his decision, no peg feeding is do be done. He is to have pain control so he is comfortable at all times. As a family we talked about this over two years ago and we all agreed so it was fine for me to give the doctor my instructions.

The doctor said how helpful it was to have it all documented as so many people dither and want time to think when really there is sadly very little time. He understood them dithering but just wished they dithered a little earlier. That made me smile.

My husband has recovered though will not get back to where he was and is now having to be hoisted and spends most of his day in bed being turned every two hours. Hopefully we still have lots of time together

When the time comes my husband will be surrounded by his family along with carers who know him and do genuinely care about him in a bed and room that hopefully will still be familiar to him. No cold clinical bed in a ward of 6 or more patients with over worked nurses rushing around. This is the plan and hopefully we will manage it with the help of his doctor and the staff.

Jay

 

[Jaycee23]

When my father became unwell and kept losing his breath and pains in his arms and legs they said he needed a pacemaker and fitted one and sent him home. He still was having problems with immense pain and we were back and forth in hospital. He had prostate cancer 13yrs before and was also having problems again. They fitted him with a catheter and he even pulled that out and tried putting it back in himself by just inserting it back in as far as he could!! He was taken in hospital (mum was just diagnosed with dementia) and they could not do anything for him as it was found that he had cancer everywhere. They sent him home and the nurses said he would not last the night and to be prepared. He survived five distressing nights of being morphine up to the hilt and we were told it was down to the pacemaker just keeping his heart ticking over. If he had not had that he would just have died. This was all in a matter of three months. It is a hard decision and the doctors, I feel had felt that they needed to do all they could in his last difficult weeks of life when he needed it well before then. If it was me I would refuse the pacemaker and let nature take its course in these particular circumstances.

 

[Sue J]

Thanks all -really helpful. I have done a "do not resuscitate form in respect of my mother with her GP. But when she was rushed to hospital a couple of weeks ago I found out this means DNR if she were to die but could possibly be bought round. Apparently it does not mean do not treat.

Ragged Robin said " If she is relatively stable, why upset the apple cart" so true!

Has any one on the forum got a relative with a pacemaker fitted - how did they react?

Hi Copsham

Sending you a PM

Sue

 

[Pookie]

Having read all these threads,I feel sad . Again carers have a tough time making decisions. To ease my Peter s pain I wrote out my wishes and my dr. reluctantly had to agree. DNR is my choice and my daughter in law will turn off any machines. She too has written permission as my blood family wont.I do not like the idea of paddles force feeding etc to prolong a life that as no quality. I am not morbid just the opposite. My new life with Alzheimer's just now is ok. Even if the recent visit to the memory clinic showed deterioration in some areas of the lurgy.
Keep fighting the lurgy Loveus2


Sent from my GT-I8190N using Talking Point mobile app

 

[cragmaid]

My Mum is ready to go. ( to die I mean). She wants to be with her Mum, my Dad, my sister......in fact all those who have gone ahead. She has nothing keeping her tied to this earth except for a heart that keeps on beating. I do not want her to stay here like that. My memories should be ones of laughter as a family not pity for this shrunken old lady, slowly fading away.
He GP knows and the CH knows and the forms have been filled in ...No resusitation, no emergency treatment unless absolutely necessary, and no non essential medical interventions.

 

[CJinUSA]

What to do?
Briefly - mum has vasc dementia, aged 87 yrs, in a good nursing home, frequent UTI's, is fairly settled and content, v v poor memory, incontinent, likes to sleep for a lot of the day, gets up for meals in the dining room.

Recently she collapsed and was unconscious for 2 mins, ambulance called, brain scan, xray and other tests done "nothing found".

Hello there. I've sent a private message.

 

[copsham]

Thank you for all the responses

Hi all - such a meaningful thread for me - such sensitive replies. I am so lucky to have Talking Point members supporting me in dealing with such a "taboo" subject.