I live in Florida, but she is in NYC in a multi story house alone. Refuses to be evaluated cognitively even though there is clearly some decline. I am an only child and travel back and forth every two months to help her. My husband is supportive, but the time away is starting to strain my marriage. He is 76, so I also don't wan't to leave him alone for too long, but his health is very good.
My mother has enough financial security and can afford to move into a retirement community or AL close to me. But she has gone through a lot of trauma in her life and feels that her house is her only safe place, even though it is becoming increasingly unsafe for her to live alone. She refuses to have additional help come in regularly, but I am pushing for that.
She has told me that she is choosing to stay in her house because that is what she wants and she hopes she will die in the house like my Dad did. Part of me understands this and is accepting of it, but another part of e wants to keep her safe and feels that she would be much happier being in a community where she can have more social activities and me close by. She doesn't have friends or activities in NY, as she is a difficult and untrusting person.
Has anyone gone through something similar? Do you just wait for life to take it's course and wait for a crisis to happen? She refuses to give me pOA but I have POA and access to her accounts.
Have you sat her down an. asked her how she expects you to handle her situation? Does she want to have that crisis where she might fall and not be found for days on end?
Enlist her in the process of planning for the possibility (read: eventuality) of something happening to her. Ask again for medical POA in the event she is unable to communicate her own wishes (and leave out the dementia discussion). It might help to have her feel she's part of the decision making.
Once you've done all you can, then yes, you wait for the crisis, out rake it clear to her that you have to be able to act when that day comes.
I have health proxy, and at this point I'm trying to introduce some people that she might allow to help her on an as needed basis....she doesn't want someone on a regular schedule yet. Neighbors have keys, which she doesn't know about. And I am just waiting. I know I have had every conversation possible and she's just unwilling to look at the realities. Unfortunately that means the realities will make themselves known in some way.
Thanks for your responsiveness to the Forum. So many post a question and never come back and it is so crucial that we know we have a REAL person there, who is thinking about all that gets said, and feels it is of value.
I am an OLD RN with much experience of HOSPICE, the OLD hospice that was so great. We need you as end of life doula, and I am fascinated and thrilled you are doing that.
Please stick around on Forum and help us answer and give some perspective to our questioners. Again, you are so welcome here.
I will indeed be active here and help others as much as I can based on the Doula training. I did it so I could be well prepared for issues with my Mom and husband. But had a lot of experience in the meantime being the person that friends called when they or their loved ones received a terminal diagnosis and needed support. Have sat many hours in hospice holding space for my friends and helping them sort through medical decisions, paperwork and eventually assisting with memorial services. One day, I will also be a hospice volunteer. Thank you for all the families that you have assisted in your career, and continue to help by guiding this forum. I look forward to learning from your experience. And getting to know you!
I am trying to develop the patience and faith of Job right now! That's for sure!
I kept good documentation about the changes I had seen in mom over the years and sent it to her primary. Do the same to be sure they are aware. Then call the primary to reiterate your concerns.
Alert her local police and ask for a welfare check and they will visit her, especially since she lives alone and you are not local to her.
It looked like my mom was shutting down, not eating or getting out of bed. I called 911 as she wasn’t responsive to me. By then, local police knew mom shouldn’t have been living alone and it was ‘easy’ for them to transport her to the ER. From there, she was stabilized, went to rehab and entered a LTC a month later. She is well cared for, has friends, eats well and enjoys the activities there that are numerous and daily.
Wishing a successful transition for your mom.
I am so glad that your mother had a successful transition and is enjoying her life at the LTC now. Makes me happy to here there are positive outcomes in situations like these! Thank you.
Of course we all want to stay in our own homes where it feels safe and cozy. For probably 80% of us, that is a fantasy.
It’s hard. They are difficult for many of us, and it’s emotionally hard to go up against it.
Wow, welcome to Forum. Your post is so well written and is so succinct; moreover, you have thought already of so much here. You've thought of ALL of it, really.
I am 81. Myself and my partner of 35 years, 83, live still in our own home and manage everything for ourselves, but we have come to the point where our four children (he raised two and I raised two before we met) are in the 55-70 age range and starting to worry; we can tell in that we get the question "do you have plans". Partner always teases them and says "Yeah, feet first out the door". Quite honestly it is what we HOPE for, tho I would make changes were I to be alone. Our paperwork is done. Things are downsized. We still garden, walk daily, shop, do repairs, do a museum, enjoy the city, keep our health up luckily. Because THERE'S the key! Health!
But the kids know that INEVITABLY if we do not get ourselves into someplace safe, something will happen.
We all talk and they are comfortable to say their piece and we answer. Thank god I have always talked openly to my kids about end of life.
I would watch and wait. You visit frequently. Make it for shorter times perhaps. No more than a week. And a bit less frequently. Then just hope. Be honest with your Mom and use the word that YOU YOURSELF are fearful; don't know what to do to keep her safe, are worried. Use YOU and not her pronouns.
You have already suggested and tried, and this is where you are. Hopefully your Mom WILL pass as she wishes to. The shocking call will come that mail wasn't picked up and blah blah. Or you will get the call I got about my brother from a hospital saying "are you aware your brother is with us". If so try to pat yourself on the back that she went as she wished and you didn't have to take that last thing from her, her own will and decision.
I just don't know what else to tell you. If she would agree to do this, you could act; she won't. You are stuck until there is a situation of mental loss so bad it leads to incompetency and guardianship, or a physical loss so bad she understands; then placement, probably where she is as a move would be too difficult.
I wish I had a better idea. Keep trying. I can identify so with BOTH of you. My heart goes out to you, and to my own AGING kids.
I so appreciate your thoughtful response, taking into consideration both sides of the dynamic. It's wonderful that you and your partner are having honest conversation with your children and that you are maintaining your life at home while also considering back up plans if needed. Your kids are lucky that you are willing to speak openly. For my mom, the answer is only that she wants to die at home, with no plan for additional help.
I told her that starting next year, I won't be coming as often. For this year, I made plans for myself in NY around the times I am visiting my Mom to go stay with friends, and do small road trips. So at least I'm getting to enjoy those trips a bit more. But next year I will scale back.
I recently completed training as an end of life Doula, which is why I have considered many of the issues with my mom and can present it succinctly. But watching our own parents go through the process is very different from assisting others. Keeping an eye on the larger perspective becomes much more difficult.
And thank you for welcoming me to the forum. I am so grateful to be here. The responses are so helpful. Blessings to you and your family!
As suggested I would space out your visits telling your mother that your husband is 76 and you cannot leave him for prolonged periods. Tell her it would give you great peace of mind if she would allow a companion to come in 3 times a week to check on her and to assist her with anything she needs. This way if she does have an emergency someone is checking on her physically on a regular basis. I had one for my father but he was too cheap to take her on for more than 1 day a week...yet assumed she would be 'on call' when he needed her. I could not get him to understand she needed to fill her time with other clients if he did not want to regularly book her.
On one of your visits see if Office of Aging can come to the house to evaluate. They will point out what needs to be upgraded for her safety. Maybe even tell her its unsafe to remain in her home and think about moving closer to you were she will have family near by. Sometimes, coming from another person, people are mor susceptible to suggestions.
I have health proxy and advanced directives for her, but she refuses POA as she is scared I will use it to move her out of the house.
Good idea to eventually bring in the Office of Aging. I will have to wait for more of a decline because on the surface everything seems fine. Her house is clean, she washes and gets dressed, food is mostly delivered. She is functioning, but I am seeing the changes happening and always try to understand what the best next step will need to be.
My brother & I tried to get her to move permanently to Florida into AL, she refused.
Finally at age 94 she had a slight stroke, and was afraid to stay alone at night, she was calling the EMT's most every night. Well, they started charging her $600 per trip, so that ended that.
We put our foot down, scooped her up, moved her into a very nice AL near us.
Here is irony, she loves it, people her own age, activities, decent food and more.
Yes, we laid in the woods for 10 years, waiting and finally something happened, took the patience of Job though.
Good Luck!