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.
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!
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.
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.
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!
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.
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.
I am trying to develop the patience and faith of Job right now! That's for sure!
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!
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.
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...
help so it was call 911, off to the hospital, then off to the nursing home where she presently resides. You may want to discuss with your mom t he next steps to take in terms of care, like I know you don't want help but a little help might be nice.
The bad part about this is usually a crisis has to take place before your loved one realizes they need help. My mom was unusually stubborn and did not even want me living with her. I tried for 3 years to get her to move without success.
I hoep you will be more successful.
In the meantime think about the various options for her future care.
Good luck.
All these responses are wonderful, but I have to share my story with you before you get hit with the reality check that we got hit with.
I visited my 96 year old rich uncle and his long term lady friend back in 2019. They were happily living in Sunnyside Queens NY and loved their home and their neighborhood. They were cordial with me and took me out to eat at their favorite restaurant, but there were some serious signs of decline. She was serving me coffee with the coffee grounds still in the cup and serving him bread with peanut butter. He was refusing to wear his hearing aid and was vomiting into the garbage can once in a while. She had signs of alcohol induced dementia and they claimed that there was a thief breaking into their home and taking things. These are textbook signs of dementia.
I was extremely concerned and begged my able-bodied adult cousins in New Jersey to come and check on them every so often, after I went back home to Michigan.
They never did.
I went so far as to have an APS worker open up a case for them but by then, COVID hit and home visits were shut down.
In November of 2020, we got a call from his sister, my aunt, that my uncle was dead. No warning that he was in the hospital or anything, he was just dead.
That was when the circus began.
My aunt rushed down from upstate NY and moved into his house, brought his lady friend to tears and proceeded to take over, My cousins from NJ rushed in and grabbed up all his important paperwork, grabbed some important keys out of my aunt's hands and wouldn't let the rest of the family see anything.
It turns out, my uncle neglected to sign the will he had been working on for 20 years and so he died intestate. His lady friend had serious dementia and thought for days that he was just sleeping on the floor at the foot of their bed so we never found out he was dead until five days after he died. His body left a large stain on the wood floor.
His lady friend was scooped up by her relatives and placed in assisted living with memory care and I was the one that was called in to help get my aunt out of the house, even though she refused to leave for months, and I ended up having to help her clean up the mess they left behind. For the first half of 2021, I was back and forth to NY trying to get things done. It was a nightmare. My life was completely derailed and nobody appreciated my help at all.
We finally got my aunt in an independent living senior residence in NJ but she wasn't happy there. She made a nuisance out of herself and finally moved on to a 55+ gated community. I knew she had signs of dementia and cognitive dysfunction but had no evidence to prove it, until we were able to get a court order to have her psych evaluated. Sure enough, I was right. My sister, my cousin and I are now in the process of petitioning the courts for joint guardianship over my aunt. Of course she is not happy about it, and is not speaking to us these days, but as far as I know at this time, there is not much she can do about it. We want her to be as happy, comfortable, independent and as safe as possible, but we know that if we do not seek guardianship, there is a great risk that she could fall under state guardianship and we will never get her back. She is famous for attracting Good Samaritans to come to her rescue. We cannot take that risk.
Just so you know, it cost $3500 for the lawyers retainer fee and about $750 per doctor for each of the two required doctor visits needed. One was a psych eval and the other was a medical eval. The lawyer maintained a list of qualified forensic doctors. New Jersey requires two doctor reports, but other states like Michigan only require one. I am not sure about New York.
I know how difficult it is to effectively manage these types of situations, so I hope that my story is helpful to you. I wish you the best of luck and be safe.
... not to minimize the rest of your story. It is as riveting as sad.
Lesson here (?)
* Get legal documents in order before dementia is medically determined (including Will), POS, etc.
* Do now what you can for the best scenario for everyone, NOT just the person in decline/w dementia.
* Breathe, exercise, walk, cry. Get the stress out and renewed energy back in for another day.
* Don't EVER wait for an elder w/ dementia or decline to make a decision ... the key here is if they have dementia and not taking care of themselves or can or will.
* Legally, if they do not have dementia (as I understand it), they can make all their own decisions. Then ...
This is a lesson in letting go and moving on ... for one's own mental and every other way - health. Thank you for your story. And, by the Grace of God/Entities in the universe, I will be willing to do what is necessary for my own good and that of my family, which is my sister. At 71, I have ALL my end-of-life documents and funeral (well none -- donating me to science) in order. Down to the celebration and type of music upon my demise (I'm adding The Village People) so others can dance !
WISDOM: Make this end-of-life easy on those still here dealling with everything when they are grieving.
No go.
(My dad had tried for quite a few years prior to his death to move into a home with no stairs but even then she wouldn't budge.)
So, my brother and I had to let it go because neither of us had the stomach to deal with the drama.
Fast forward to 2017 and she had yet another medical emergency that I had to wade through with her. In the end, it was apparent that it was time to bring her to my home (as I had promised her I would do if necessary) and here we are 6 years later.
So yes - if your mother continues to live on, then sooner or later you'll have to step in and rescue her.
“Why are you putting yourself through that? Just hire someone.”
The next day we talked to an agency. My Dad seemed interested and signed up for a caregiver to come out and help him.
In planning our move to be closer to our son last year, my dad said he would move with us and now he says he doesn’t want to leave his house that he’s lived in with my mom for over 50 years. He has early onset dementia, and does fairly well on his own, and although he’s not happy, he really wants to stay there. So for now I am letting him because I feel like I can’t really force them to move, but I am watching him closely and having neighbors watch him. It’s a hard situation for sure.
I wouldn’t want to be forced, so I try to respect his decision, although I think he’s be way happier here.
it’s kind of day by day for us.
Your mother is as most aging seniors grieving the changes that aging brings and perhaps is in denial about the reality of not only what she is facing but also what that means for you. When you go to see her next, try to go with her to her PCP and ask for a " level of care needs" assessment. This will offer a professional objective place to restart the conversation about her needs and decisions and options. She may resist this of course but you can stress that it is for her safety that this must be done and that you as the " POA" , are accountable or may be held accountable for her well being; especially if she is assessed with some cognitive decline limiting her ability to make rational safe decisions. If she is deemed by the professionals as A/ O cognitively appropriate to make her own decisions and refuses your interventions ,conversation and professional recommendations then it will be documented as such; then if she chooses to stay in her home, perhaps some form of in home support may be an option, although often this is not a positive experience for many reasons.
You can also tell her that if she chooses to stay in her home, that it may reach a point where you or possibly others will have to call APS, Adult Protective Services, to visit the home and assess her safety, well being and make recommendations. This is usually not something anyone finds pleasant and is best to avoid if possible.
You can also confer with an Elder Law Attorney to get the best legal guidance through this mindfield of choices, responsibility, accountability etc etc so that you will know what's what for your own sanity, well being.
1. I offer my thoughts / experience / recommendations.
2 Then, ultimately it is up to the person (or family member(s) to decide how to proceed).
3. There comes a time when TOUGH LOVE is to be recognized as LOVE and the most loving gesture to do, even though it is emotionally difficult - for everyone concerned.
4. If she / you wait for a crisis, it will be much more difficult for you to help or manage - and you might need to be there in a moment's notice. Your mom may not 'care' or be in a mental space to 'care' what happens to her or the ... impact 'waiting' will have on her - and you.
5. We all do what we can and then realize there is nothing more we can do.
Realize that 99.99-3/4% of elders / disabled / stages of decline/dementia will not be thrilled to move. It is the LAST thing they want to do. No one wants to leave what is familiar to them. Plus going into the 'unknown' is a very frightening thought - to many of us, let alone someone in decline, mentally and physically.
Gena / Touch Matters
He ended up drinking himeself almost to death and caused himself to have WET BRAIN. aka alcohol induced dementia. We just recently let him go back home after 18 months in a facility. He's doing better, but Its truly hard being in Texas, and him there in SC alone. I have tried multiple times to convince him to come closer to us, but he just FLAT refuses. I have a good job here in Central Texas, and I am finally starting to build vacation time to be able to go see him more. He is hard headed, and it's frustrating. I had to wait for him to fall and almost take himself out and also go to court which hurt like heck, to get him the help he needed. I pray you find a way to help the both of you at the same time. God speed.
Nolan
mother is physically in much better physical health than any of us but her mind is similar to a roller coaster and all to often gets stuck on repeat. This past few weeks she is stuck on a grocery list. This is her last freedom. Every other day she buys an enormous amount of tv dinners, ice cream candy bars and cat supplies, ( wet and dry food, litter and 15.00 per box Temptation Cat treats that we can’t get her to stop feeding them as dry food!!
I fear she is going to be close to 0 in her account at the rate she has been going. It is a daily struggle at least 2 phone calls and usually 4-5 per day.