I have now moved from being a companion for my 83 year old mother to a caregiver as her memory and dementia worsens for the last three years. At times, we can still have serious conversations about her worries and her losses of recall. I want to discuss with her and have her reiterate to me her wishes for long term care. What are some gentle questions I can probe of her?
I have told my own daughter, I want to have her establish a stepping away point ahead of time for caring for me, if my future repeats like my mother. I tell myself that when she becomes incontinent or begins to have safety issues living in my home or her home, beyond my abilities to care for her, I will need to get help. Right now, I just sadly deal with her worsening ability to engage in anything productive, her moodiness, her restlessness and long hours of wakeful nights, appetite and eating and of course repetitious conversations. I am a widow and other sib are all about 600 miles away in different states. Mom is in good health otherwise - still cares for cat and dog which are happily fed often. Loves to be outside and has always been an introvert. Others are questioning this path I choose as it is a sacrifice for my own married daughter to be so far away for long period of time. I tell her, I do not feel like my life is "on hold", I am doing what is kind and necessary, I love and enjoy her company. My brother has power of attorney, but I help mom keep up with mail and bills. Maybe she is now beyond asking any questions. She just seems to want to talk about the important things right now -- as she scrambles to hang onto her life-long sense of responsibility. She has a little resources for assisted care, but family argues about the need for this and what it would do to her if it was forced on her. This is so sad... but not having a plan may be worse.
Obviously, this is not for you to use as intended; the reason I'm suggesting you have a look at it is that it discusses the decisions involved.
You can skip all the bits about Financial LPA because your brother is already handling that. But in the UK there is also the Health & Welfare LPA, and the notes about that are, I think anyway, pretty well done.
In particular in Section 7 it suggests the *kind* of thing that might be important to people trying to plan their future care; and it explains another key point, which is the difference between giving instructions, and expressing preferences.
https://www.gov.uk/government/publications/make-a-lasting-power-of-attorney/lp12-make-and-register-your-lasting-power-of-attorney-a-guide-web-version
Anyway, I hope it might be helpful.
When it comes to considering options for her care, if her needs develop beyond what can be managed at home, what is available? Have you had an opportunity to visit any facilities, do you know the reputation of those near you?
The healthcare issues are things like ‘do not resuscitate’, ‘no tube feeding other than short term’, ‘no supplementary feeding if I do not wish to eat’ etc. Perhaps Hospice could give you a list. I’d say ‘these are things some people don’t like and get upset about’ rather than ‘do you want this or not’. Make it a general discussion, rather than a rather frightening plan for her. Try to avoid ‘I don’t want to go into care’. It may have to happen, and her comments would make it worse for you and for her. Perhaps you could focus on ‘what would make you think that going into care was the best thing to do’ - and bring into the discussion the impact on you as carer and other people involved.
The ‘people’ issues might be quite enjoyable to talk about. Ask her how she would like to think things will work out for grandchildren, nieces and nephews, yourself etc. Are there any of her special things that she would like them to have eventually? Would she like to leave them with a letter, a family history, or even just a message with her best wishes and hopes?
I hope that you can find a way to make these conversations happy and rewarding for you both.
A P.O.L.S.T. should be one of the documents that you get. It is much more detailed than a DNR and it will cover many of the things that you would want to bring up with her.
Please also discuss Hospice and the advantages to Hospice when "conventional" measures no longer are a viable option.
The POLST, and Hospice can be discussed at home and with her Doctor at the next appointment.
As you get into discussions bring up her wishes for the type of service she wants, music, cremation, burial or donating her body. And all the other "Stuff" no one wants to talk about.
This would enable you to be with her if her desire is to stay at home, but it would be a longer commitment from you. Also because Alzheimer’s is such an up and down disease there are criteria that the patient must meet to be eligible. Dad being in the bed meets it. They reevaluate the need every 90 days and should he suddenly exhibit the ability to get out of bed and walk and care better for himself services are withdrawn until another decline. I don’t think that I have to worry about that at this point.
Anyway if she wants to stay home I highly recommend that you get her primary care doctor to evaluate her and recommend hospice if she is ready.
You sound like a loving and caring daughter. I'm sorry you are a widow trying to go through this with little help. This is one of the hardest jobs on earth, being a mom is difficult, but being the caregiver of your own mom or dad at times is overwhelming. Thankfully, there are people who can help. It might take some time to find those who will be supportive of you and your mom, but they are out there. Hospice is a huge god-send for so many people and I always tell people that you don't have to wait for your loved one to be completely bed-ridden or actively dying before calling in hospice. While there may be various diagnoses that can place a loved one in hospice care, typically if there is a serious illness (cancer, Parkinson's, failure to thrive, etc.) and a medical doctor has stated that the patient has 6 months or less (by what they can tell), then hospice can be called to evaluate and determine whether a patient is "hospice worthy." Your mom may not be at that point yet, but it's nice to know that this is available when the time does come.
I trust you will get the help both you and your mom need now and will need in the future.
This document contains the following information...
Section "A" and you check one.. Attempt CPR or Do not Attempt CPR
Section "B" Medical Interventions Full Treatment:, Primary goal is sustaining life by medically induced means or
Selective Treatment: Primary Goal of treating medical conditions with selected medical measures. or
Comfort Focused: Primary Goal of maximizing comfort.
Section "C" Medically Administered Nutrition:
Long term,
Trial period
No medically administered nutrition
Section "D" Document of Discussion :who detailed the information provided
Then the rest is various signatures
Each one of the sections goes into a bit more detail than I have indicated here but this is the basic information on the POLST . As you can see it is a bit more detailed than a DNR.
And a few things to remember with a POLST or a DNR if you do not have them with you when the person is taken to the hospital, if it is not available when Paramedics respond the document for all intent and purpose does not exist it has to be present or the paramedics or hospital staff will resuscitate. That is their job. So always keep a copy with you, make sure that the hospital is given a copy.
And this document CAN be changed if circumstances change.