Advanced Care Plan

[Linbrusco]

Hello from New Zealand. Mum 79 is in end stage Alzheimers, ( into 8th yr) but not yet end of life.
Bed/chair bound, on pureed foods, thickened liquids, unable to communicate, sleeps majority of the time.
With some effort, you can feed her or get her to drink but she does as a rule finish whats offered but weight over past year has fluctuated from 58-62kg. She has lost 4 kgs ( 8lb) in past 2 mnths, so now 56kg
She is only on paracetamol x3 daily, Low dose anti B for UTI prevention and 5mg of Quetiapine due to agitation and sleeplessness.
A year ago she was on 75mg daily.

Mum never made an Advanced Care Directive. As I am her EPOA , her care home want me & my siblings to complete an Advanced Care Plan which is reviewed by our local Hospice.

As far as Resuscitation we are in agreement with it not to be performed.

I wondered if anyone can give their opinions on below questions as you have to choose 1 from each

It reads : If I became more unwell....

1) Please treat all medical problems as they arise
2) Please treat problems to help my quality of life but do not prolong my life if it is close to the end
3) Please do just what is necessary to keep me comfortable.

1) Please use antibiotics for all infections
2) Please use antibiotics but not if I am close to dying - let me go peacefully
3) Please do not use antibiotics. I wish to be kept comfortable

 

[millalm]

Hello @Linbrusco. It seems we are at the same point in our Mum's journeys although my Mum is closer to 87. I made the DNR decision 3 years ago when she moved from our home into a Long Term Care home and based the decision on her feelings about my Dad's situation several years ago. He always said he wanted to be on life support and if there was a power failure we should light candles to keep him alive lol He was only very partially kidding. My Mum was always insistent that she would not want to live if she had no quality of life. Also, not to bother with a funeral,because there were not that many people that she actually liked so just to cremate and sprinkle her at a place of our choosing! So although it has been difficult I have made the decision to not have her transported to a hospital, or have any invasive procedures performed. I have an invisible brother who is happy to leave the decisions to me, but very supportive of whatever I decide. A year ago I thought my Mum was going to die, she was deemed end of life only to rally after 10 days of what I thought were going to be her last days on earth. I believe now that she stayed because I fought to keep her here. I stayed with her throughout the 10 days and every night and most of the days for 6 weeks after, sleeping on a cot because I didn't want her to be alone if she was going to die. She recovered and with the absence of many of the medications she had been taking became more lucid and much more like her old self. It lasted a month or two, then the slow, agonizing decline began again. Since then I have watched so many residents fall ill and be taken to hospital only to die there or be returned to die in the home. I have thought many times that I made a selfish decision when I didn't just let her go in peace. She, like your Mum has no life at all. Other than when I visit each evening she sits tipping over in a wheelchair or lays in bed oblivious to the world around her, unable to ask for any comforts or express any discomfort. Having been to the End of Life with her and dementia I know what to expect and yet given the choice I am more sure than ever that I want her to be kept comfortable, in familiar ( as it can be) surroundings and allowed to leave this earth when her body and mind are ready. My only hope is that I will have enough warning to be with her when that time comes. Even though I was there for my Dad and have no regrets about 'did I do enough?' I still carry the weight of deciding that since the doctors said there was no way that a trip to the hospital would save him (enormous leaking aneurysm and multiple other health issues, failed blood transfusions , heart attacks etc.etc.) I 'let' him die. It is not guilt I feel but a terrible weight of responsibility. I believe I am making the decision for my Mum knowing how it has made me feel, but I know it is a decision I have just had to live with, and will have to live with anew for her sake. I know this is what she would want.

I can only tell you how I feel based on my experiences and wish you the strength to make the choice you can live with

 

[Bunpoots]

Hi @Linbrusco

When faced with this conversation about my dad I chose 2s but if oral abs didn’t work then 3s and let him go peacefully. It’s not an easy thing to do.

 

[Alfiefern]

Hi,

As you are POA I think you have to think about what your mother would want if she could decide.
I personally would go for the 3s but I have no knowledge of her quality of life.
It is very difficult to make these decisions but whatever one you make will be the right one as you will be happy with it.

All the best

 

[Pete1]

When faced with this conversation about my dad I chose 2s but if oral abs didn’t work then 3s and let him go peacefully. It’s not an easy thing to do.

Hi @Linbrusco, pretty much the same as @Bunpoots, I had previously had the discussion with Mum a several years earlier (as we had been through the same with my Dad). We did try antibiotics for a chest infection that just didn't work, I then just wanted Mum to be kept comfortable and had end of life care in the Home (rather than move her to hospital for further treatment). You are faced with very difficult decisions, but you and your family will no what is right - we did. Stay strong, all the best.

 

[jugglingmum]

At the level my mum is at now, I would go for 2s (she is mobile with a frame, and self toilets, feeds herself, making meal choices)

At the level your mum is at I would go for 3s - it is something I have thought about and once she loses mobility and interaction I hope she will go quickly