Seeking advice on end-of-life care

BKay

This is my first post, but I want to first off thank everyone from the bottom of my heart for the advice and comfort I've found here by reading your posts, usually when I can't sleep at night and am feeling overwhelmed.

I'm writing now because I'm so anxious about my 77-year-old mom's imminent passing at home from dementia and my dad's reluctance/refusal to get outside help, as in palliative care, hospice, etc. He has been caring for her at home for the past 13 years, refusing help from anyone except me and not seeking medical care. He is the epitome of the stubborn, independent, proud, private individualist. My husband was diagnosed, also with Alzheimer's, in 2017 at age 57, so we moved near my parents, enabling me to help care for my mom while also caring for my husband. Mom is now sleeping much of the time, with little to no cognition. Several times, she's stopped eating and drinking for a day and had seizure-like episodes, making us think it was the end, only to rally and get back to "normal." 

I have asked my dad repeatedly to set up at-home hospice or some sort of palliative care so that we will be able to give my mom pain medication if she is in pain when she does pass. He keeps putting it off and trying to placate me by saying he'll do it next week, etc., and then he doesn't do it. I know that he's hoping she'll pass peacefully in her sleep and he won't have to deal with having a stranger in their home telling him what he should do. He doesn't think she will be in pain when she finally goes.

Meanwhile, I've read all I can about the dying process so at least I'll know something about what's going on and how to help. But I can't prescribe morphine. Will paramedics administer pain meds if I end up having to call an ambulance (against my dad's wishes) if she's struggling at the end?

I really don't know how likely it is that she will pass peacefully without the need for medication. I'm going to insist that he call the doctor on Monday and if he doesn't, call someone in palliative care to see what my options are. I'm extra anxious now because my mom hardly ate anything yesterday. 

I know this forum is for people grieving, and I am very sorry for your loss. If anyone has some advice for me based on your experience, I would really appreciate hearing it. Thank you.  

TessC

I'm sorry you are dealing with 2 loved ones with Alz.

 I had my mom on hospice and they were a big help. They don't come in everyday so having a stranger in the house all the time will not be an issue. What they did do for us was to provide a bath aide, supplies and a end of life kit that your father can use with the advice from the hospice nurse.  He can do it himself with phone advice after getting some inhome training from the nurse. The nurse will have to come in once a week to assess your mother, but they are there only a short time. They can't stick around long and won't be telling your father what to do for his wife, They are supportive. Your father can always decline their services or any part of it if he feels they are more trouble than benefit for him and his wife. But I bet he'll see their value once he begins. That's what you can tell him. It's not something he has to keep if he is not comfortable with their services. And it's free-all of it!

I can tell you that my mother was calm, compliant and sweet all through her decline, but once the death process began, she was suffering and it was not a gentle passing in the night. I'm glad I could give her morphine so her bodily suffering could be dissasociated from her mind. We don't know how much a person with dementia can feel and sense since they can't tell us.  I erred on the side of compassion and gave my mom hospice help so she would not consciously suffer.

Good luck and I hope your mother will pass peacefully in her sleep and she may do that even with hospice services. But if she does not, your father will be happy to have them there for help.

Imamess

Sometimes you just have to take the wheel and do what is best for her and not everyone else. the old saying 'cant please all of them all the time'. Hospice was the best thing in the world for helping at the end of my mothers husbands life who died of lung cancer in the brain and then with my moms passing in assisted living 2 yrs ago (still grieving heavily because she is my favorite person in the world) My moms hips/back hurt her real bad at the end and she could barely tell us she was in pain, thank God my sister picked up on it. If not she would have suffered. Her passing with the morphine was so peaceful, I wish this for everyone at their time. All 4 of her daughters were there and a grand child for days at her death bed, laughing joking at each other, at times we felt bad we were laughing too much, but Mom wouldn't have wanted it any other way. I believe it gave her the feeling that we would be ok when she was gone,(She Always worried about me the most) She only passed after we were finally quiet for 15 mins. I held her hand and she took my pain with her. I have since added my own from missing her too much. Hospice never told us what to do, we had full say over everything, but the meds kept my mom calm pain free and settled. She could not open her eyes or speak either but could definately hear us, she smiled at a joke. She could not eat or drink for days and eventually things shut down, that would be painful to me without medication to help. Sorry this is so long. I wish you all the best.

Martin Robbins

I agree with Tess.  You need hospice.  The nurses and nurses aides do not come often.  With my mother, nurse twice a week and aide three times a week,  Only for about an hour maximum.

Your father will still have plenty to do.

God bless you for caring.

chrisp1653

Before I discovered hospice, I was at my wits end sometimes. I've always prided myself on being able to do things for myself, but there are limits, and I found them fast when trying to do everything for my Barbara. 

With hospice, she got a nurse 2 times a week, a bathing aide 2 times a week, a social worker 2 times a month, and - for me, such a blessing - a volunteer who came in once a week for 2 hours, so that I could run to the store.

When Barbara finally passed on December 20, 2020, all I had to do was call the hospice hotline, and everything was taken care of. Of course, one of the things they had done right away when they first started was to help me get things in order so that when the end came I would be ready.

Space within

I agree with the others about contacting hospice.  Sending you and your family love, courage and support.