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.
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!
It becomes a burden on adult children and their families when a parent feels as if only their child is capable of doing everything for them.
I’m sorry that your mother won’t hire someone to help or move into a facility.
It’s draining for you physically, emotionally and financially to have to travel back and forth.
There will come a point in time when aren’t able to travel to her home. You have your own life to live with your husband.
It’s time to have another conversation with your mom to settle this matter before a crisis happens.
Emphasize that this is becoming more than you can handle. You must stress to her that this arrangement is no longer feasible and that you are more than happy to help her find an alternative solution.
If you make the conversation about her, she will most likely give you a million reasons why she should stay in her home.
Wishing you peace as you navigate this difficult situation.
Transitioning is hard, but so worth it in the end. She will adjust to others caring for her and then you can return to being her daughter.
Help her as an advocate overseeing her care.
Instead of me traveling to you, it is time you come visit us :)
Mom, you and I both need a change. Let us entertain you down here..
Then take her around, and have the talk that needs to be done, gently.
Hopefully, she will get the message..
Or just switch it up... You fly down every 3 months, and I will fly up every 3 months, and we have FaceTime, and other video chat rooms.
do go to a doctor visit next time you are up there. Get a well check on her, and cognitive check...
But, no matter what I said or did - and I even took her to look at at least 10 different assisted living facilities - she would not budge or agree to move. And she was of the personality type that if I had forced her to move, she would have made her life miserable, the staff's lives miserable and anyone else around or near her lives miserable (and probably would have been asked to change facilities due to her 'hostility and being uncooperative'.
So yes, I had to wait for her to fall for the changes to take effect. The only saving thing in this entire scenario was that she had all her paperwork in order - will, POA, medical POA, financial POA, etc etc. But honestly, those couple months were stress hell for me as the only child and family member in having all the responsibilities on my shoulders alone.
Maybe visit less, have her wear a medical alert, and perhaps hire a geriatric care manager who could check in on her at least every other week. I did find a geriatric care manager my mother reluctantly agreed to so that they would check on her when I couldn't.
Dignity of choice with added safety.
I also came to realise no-one would let me drive (so to speak) so I had to aim for adding a seatbelt & airbag instead.
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!
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.
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!
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.