My Mom is 85 and has early stages of dementia. She is still fairly functional, able to dress, bathe, use the telephone, fix some meals, etc. She recently fell and broke her hip, but has recovered remarkably well. She is able to walk with a walker and gets around reasonably well.
As her son I'm the only one responsible for her but I live in a different state. I have set up a technology "wellness" system. It's comprised of both video cameras and alert systems. So, for instance I tell when she gets up in the morning via a motion detector. I can tell if she leaves the apartment, or goes to the bathroom, or generally moves about in her apartment. I get the date/time for each of these events. I can also connect to the camera via either my phone or PC to see what she's doing or what's going on. I do this many times per day.
She has an elderly neighbor who is really her caregiver at this point. She is 81, but is still in good health. She checks on her many times per day, fixes her hair and is generally a companion. I send her some money for her efforts and she is great.
Due to this situation I feel that at this time it's best not to move her to a nursing facility. Although if not for her neighbor, that is where she would need to be.
My question and what I would like to do is regarding, setting up some boundaries or at least talking to my neighbor about some boundaries. Sometimes she does too much and complains that my Mom needs better care and that she just can't do it. But I really think it's best for my neighbor's mental wellness to have my Mom there. It gives her a sense of responsibility and pride that she is helping my Mom. I would just like to encourage her to do more for herself and maybe require my Mom to do more things independently.
So the situation is mutually beneficial, I just don't want my neighbor to burn out. What is a good way to approach and set up some boundaries for my neighbor to work with? I would like some suggestions on what boundaries might be good and how to implement them.
Thanks, gb
These situations are tricky. Having lived in an apartment dwelling for over 25+ years I have been in the trenches and have seen it all. Basically it starts out do you need anything at the store, milk or bread? Then during the snowstorm you do the wellness check on the elderly in the building. You then actually start building a "family" in the building and/or complex. "Junior" who went off to College and his fabulous job offer took him out-of-state. The Sunday night phone calls, a tablet for Christmas, all the latest technology does not replace an actual "show up in person" visit.
"Gladys" make believe name next door knows the family dynamics. She knows who's sitting alone on Christmas Eve and who is wearing the same blouse again for the 4th straight day in a row. She doesn't say too much but notices.
It's obvious to me, you love your mother. You are trying to cover all of the bases. The neighbor is trying to "help out". You in turn feel well their friends, neighbors perhaps even confidants but really we appreciate your help but you're running yourself into the ground. Let me show her my appreciation, a gift card, etc. Bottom line = Who shows up in life? Who shows up with soup, prescriptions from CVS and if the newspaper is left on the step for 2 days who starts the telephone tree.
People need people. The technology doesn't cut it. Men and women look at this very differently. My brothers every time they show up they bring my mother this enormous tv that she doesn't even need. It's kind of funny. They think the bigger the better.
How about calling your mother's PCP (primary care doc) and write a scrip for services--order P/T, O/T, homemaker, cleaning and keep the neighbor as a neighbor. Maybe you could order food delivery from a restaurant and they could dine once a week together. It would be a visit. Is your mother getting exercise. An UpWalker Lite is fabulous. Again your PCP can write the scrip.
The local Church brings my mother Communion and the bulletin each week. They rotate 10 different people. Keeps Mom tied to the Parish!
Women need companionship not a tv or more electronic stuff. This works for you but we are not robots. You need the human touch, conversation. Your mother's neighbor gets it. She sounds like a beautiful person and friend to your mom that you want to keep in the picture. Everyone should be so lucky.
When I moved to a new building I let family members know (the lady I checked on) that we will no longer be living in the same building. Previous to that I would check her blinds every morning that they were open so that she made it through the night. Just her seeing my car out in the parking lot gave her solace. If we went away for a few days I always informed her ahead and called when I got in. We exchanged Christmas and Birthday gifts, food, cookies, etc. Both love "Call the Midwife". I bought her Thanksgiving Dinner the day before Thanksgiving as she is alone. "Junior" missed calling one day and she was found on the floor in her own feces and urine. This could have all been avoided. Now in a NH, we call her on the phone.
The VNA will assess your mom and check her vitals.
You may have to make changes as your mother's needs change. Always keep the neighbor in the loop as to your mother's whereabouts as she is a treasure and what I like to call "an unsung hero". Amen...
Medicaid is adminstered slightly differently in every state so you need to check with both states (yours and Mom's) as to what is available in terms of ALF and MC assistance. In most cases, Medicaid beds are limited in availabilty.
ALWAYS visit any facility you are considering at least twice (difficult during covid but things are opening up a bit now) and listen to the marketing talk you will get but use your other senses to see how clean the facility is, how it smells, how the residents and staff interact with each other. Ask for a list of activities scheduled for the month and ask for the weeks menu.
Since dementia is progressive try to find a place that has both AL (if that is what is currently recommended) and a secured MC unit so you can reduce the number of moves required as her care levels increase. Don't expect her to be happy about moving.... put your head down and plow along with your research - however.... unless she is judged incompetent by her doctors, she can't be forced to move (but she might be cajoled into it .... so try to work that show).
Like people.... there are bad facilities out there and good facilities. You have to research them and you have to stay in touch (which is why it is easier to have a LO nearer to you) or at the very least pay a case manager to visit and advocate for her regularly............. that is needed in the best of facilities. Also just based on past experience - caring for my Mom and working in the health care industry... it seems that care, at least in LTCs, is better in non profits even though they might not be as pretty. Big scandal (which may lead to nothing) in NJ right now about the abysmal care at 15 one star Medicare rated LTCs - 14 of them are for profits.
Good luck on this journey. You may have to weed through some of the comments on this site but most people are here to help not judge; but they all have their experiences with caregiving some of it good some of it bad. Let us know how it works out for you.
Tell the neighbor to join this forum. We’ll tell her she’s being taken advantage of, dissed and suggest she walk away or call 2-1-1 and let them intervene.
I see where you’re coming from but you appear quite clueless. If mom’s not independent, it’s not your neighbor’s job to make the impossible possible and you’ve moved her from being a concerned neighbor to the responsible caregiver.
To show appreciation, he has sent this neighbor some money now and then, apparently sometimes more than she feels okay about accepting. I don’t see any evidence that he is “taking advantage” of her; in fact, he is trying to figure out what’s reasonable. In communities in which I have lived, people look out for each other, and help is accepted. Sometimes it does turn into a difficult situation, and then needs to be sorted out.
If you love your Mom you will spend time with her. Take her to a neurologist and have her evaluated. Once you know how things stand, then you can make decisions concerning her care.
Really? You already have 'all the answers' so what kind of help are you looking for from US?
Your mother is fully functional yet has no short term memory, THE most dangerous kind of memory loss to have, even though you are watching her via video cameras and alert systems. Being sent off to rehab in a SNF, she is furiously calling 911 and others to get her out of there and tried to escape twice. Yet she can do a 300 piece puzzle, so all's well! Denial is not just a river in Egypt, you know.
You can be as sarcastic as you'd like, but the truth of the matter is, your mother is suffering from at LEAST moderate dementia and should not be living alone. That does not mean you should "put" her in a horrible nursing home where she'll "get care from people she doesn't know, doesn't have a personal connection/friendship with, and the neighbor is left in her apartment being bored and feeling lonely. Ok, noted. " You can hire in home help from someone who's not 81 years old and doesn't need 'boundaries', but who can provide the sort of care you'd like her to get. Or, you can find her a suitable SNF that may not be perfect, but would keep her safe and cared for.
Dementia is a losing situation for EVERYONE, you, your mother, the neighbor, all involved. It worsens with time and causes all sorts of potential dangerous situations your mother can DIE from while alone in the house. That's the truth. Take it or leave it. "Put" your mother in a nursing home or leave her alone in her home with you watching her over a device & her 81 y/o neighbor helping her out while she still can. There's no great answer or easy solution here, in all honesty.
But change your attitude b/c you came to a forum to ask for help but then choose not to listen. To people who have either traveled this horrible road before or who are traveling it now. It sucks, no matter what you do or how you do it. We lose our mothers to a very ugly disease that wipes out who they once were entirely, leaving a husk of a person in their place. So we all know what it feels like and how much money, time, head space & worry it truly causes. Don't shoot the messengers you came to for help.
I hope you can find a solution that works for you, and that keeps your mother SAFE, above all, b/c that should be your only real goal here. Not to find & implement boundaries with a neighbor who's going above & beyond the call of duty to care for your mother out of the goodness of her heart!
I suggest you read this 33 page booklet which is a download and very informative. It's called Understanding the Dementia Experience by Jennifer Ghent-Fuller. It may offer you some enlightenment on what your mother is going through, and what lies ahead. Knowledge is power.
https://www.smashwords.com/books/view/210580
Best of luck, whatever you choose to do.
Keep in mind that people on this forum are all offering advice only out of their personal context and their own issues, so just pass by the unhelpful comments. Why anyone would think you are making this up is beyond me; I can certainly imagine this scenario, and have seen similar.
All the best to you, your mom, and her neighbor.
I would also encourage you to consider hiring some home health help - an agency might be the best way to go - that comes in regularly to the the things the neighbor can't. Since the neighbor is older too, there will come a day when the neighbor won't be able to come by and your mom will suffer neglect. "That day" will come without warning.
Maybe, find another way to compensate her. Gift cards, grocery cards, cash. Besides, checks mean a trip to the bank.
Maybe visit Mom. Find out her needs and go from there.
Eventually your mom will need more care than can be given by an untrained person who is 81 years old. You have stated that right now your mom cannot afford AL. Have you checked into something called an Elder Waiver?
"The Elderly Waiver (EW) program is a federal Medicaid waiver program that funds home and community-based services for people 65 years old and older who are eligible for Medical Assistance (MA), require the level of care provided in a nursing home, and choose to live in the community."
source: https://www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&RevisionSelectionMethod=LatestReleased&dDocName=id_056766#:~:text=The%20Elderly%20Waiver%20(EW)%20program,to%20live%20in%20the%20community.
Also, contact her local area's Agency on Aging for other resources. Medicaid is run by each state and I have heard that some state's MA program will pay for AL.
I have read your prior response that you are concerned that facility care is suboptimal. My MIL is in one 3 miles from my home. She's on Medicaid in LTC in a private room. She gets awesome care and lots of social exposure and options for activities, events and outings -- something your mom won't get cloistered in her home with only her 1 friend feeling the pressure to be her entertainment committee. Not to mention the friend is only 1 sudden health crisis away from putting your mom and you into crisis mode. That's what can happen at 81, no matter how healthy she seems right now. Loneliness is crushing to the elderly.
If I were in your situation I'd start having the conversation with your mom that, base on lots of research you've been doing, it would be best to *eventually* move her to a care community near you. Are you her PoA? Hopefully so. Research and visit facilities local to you. Talk to an elder law attorney and Medicaid Planner for your state. For Medicaid She needs to medically and financially qualify, and some states have a 5-year financial look-back period on the app. There are many ways one can easily screw this up.
I would call up the friend and let her know that it's ok if she's feeling like your mom's care is overwhelming her, that you are looking into options and how can you help her in the interim? I totally understand that you wish to help your mom stay in her home but eventually she won't be able to so better to work on the solution for this now rather than in a crisis. I wish you much wisdom as you ponder her future care, and bless you for doing what you're doing for the both of them right now.
I'll get it sorted out, I've already spoken to a lot of different places and am working on a plan to move her when the time comes.
Important thing here is that the caregiver hands-on, the neighbor, recognizes that your Mom is likely no longer safe enough, nor any longer able to sustain herself on only the care of an 81 year old, who apparently is no longer willing to do this amount of care.
Your Mom may not like it, but that larger question is her safety. If you think, knowing your Mom, that you would "risk" anything that may happen as long as you can, and perhaps get in help that would be "willing" now to help her (the neighbor I think may be trying to remain civil, and may love your Mom and feel responsible, but yet seems from what YOU yourself tell us to no longer be willing in this responsibility), then that is your assessment to make. It is a hard decision to make.
Discuss this with your Mom and with the neighbor, then trust you to make the best decision you can for your Mom. It is never easy. Best of luck to you.
Discussing it with Mom is difficult, while she is quite functional, she doesn't have much short term memory. So if you discuss it with her, then she's forgotten that in a few hours. But yes, I do need to discuss it more with the neighbor. This is a big decision, and it's a one way street. If she goes to some other place, there is no going back to where she is. She currently lives in HUD apartments, where there is a waiting list. So if she leaves, she's not going to get back in.
Why can't you hire her some in-home support?
If your mother can somewhat function on a daily basis, she probably needs assisted living, not a nursing home yet.
I think the neighbor is doing you a huge favor by speaking up as she has. No doubt she will indeed miss your mom and it may lead to a bit of a decline on her part as they have been mutually dependent on one another, but you need to do what's best for Mom, and living independently in her own house may no longer be viable. Look into in-home help, or an assisted living situation. Maybe the neighbor would like to come along, and they can continue living near one another.
My Mom is fairly functional, she can dress her self, bath, fix food, and even put a 300 piece puzzle together while I was there. I see via the camera that most mornings she gets up, gets dressed, fixes breakfast (she likes oatmeal).
Yes, the neighbor is doing a huge favor indeed. Assisted living is out due to costs. The next place would have to be a nursing home via medicaid. But that seems like the avenue that everyone here would suggest, so maybe that's what I do.
To me it seems like a bad solution. She was in rehab for 6 days after her surgery, which was essentially the same as a nursing home. The first day in rehab she called 911 and said they were keeping her against her will. Then she tried to escape twice. Then she called over 10 people every day asking them to come get her. She begged me every day to get her out. She was suppose to stay 3 wks, but even the rehab center said it would be better for her to go home.
The neighbor goes over and cleans, vacuums, fixes her food, does her hair, and takes her places. All of her own doing, nobody asked her or expected it. Much of that isn't necessary or at least isn't necessary every week. But according to everyone here, having the neighbor do anything is presumptuous and apparently "evil" on my part.
I'll start looking into nursing homes and try to do better. Thanks for all the help.
What, it's the caregiver's fault because she should be standing back more?
Nope. Be told. Your mother needs more support than the neighbour can give. Get a proper assessment done, and hire care.
I wouldn't include the term "boundaries"; that sounds too dominating and restrictive. This woman has apparently helped of her own volition, and needs to be recognized as a genuinely good person. "Boundaries" in this case seems to be too confrontational. I'm not criticizing you, just offering a suggestion from someone not involved.
I think that you also need to advise her of the recording devices, especially if she's been seen on any of the tapes or videos. I don't know what laws in your and your mother's states are, but I'm not sure that any personal entities who aren't involved in law enforcement can record someone, in someone else's house, without advising the neighbor this is occurring.
Perhaps the neighbor just wants to continue as a friend, and that's acceptable. But give HER the chance to identify, specifically, and enumerate the areas in which she feels she's being challenged beyond capacity.
Over the years and from many threads I've read here, it seems that negotiation and meeting of the minds is often absent from relationships, often b/c of the personal nature of those involved. But in this case, it might be a workable option.
Your comment about the neighbor stating she needs better care and that she just can’t do it, is an alert for your mom…and an alert that the neighbor is tiring?
I too lived out of state. My moms neighbor kept on eye on my mom. Helped her get the trash to the curb , brought newspaper from end of driveway to door, got her mail. And of course I could always count on being able to call them. This wonderful couple helped others as well in the Mobil home park… I finally got my mom in AL , a number of months later the neighbors wife died… I could not vision my mom still staying in her mobile home without that generous neighbor.. it may sound like they didn’t have to do a lot, but in my eyes , they were great security for me. (Neighbors wife was in better physical health, but died of cancer… )
That's part of my current issue, the neighbor says how much she loves my Mom and how much she likes having someone to help out with. But some days she over does it and then complains. I get that. So I'm trying to understand a plan that will work for both of them.
I guess, according to many here, the answer is to put my Mom in a nursing home. That way she gets care from people she doesn't know, doesn't have a personal connection/friendship with, and the neighbor is left in her apartment being bored and feeling lonely. Ok, noted. It will eventually come to that, it's just a matter of when.
She has told you all you need to know.
Your Mom's neighbor is doing too much and has told you so.
Your Mom's neighbor has told you that she needs more care, and has told you so.
Your Mom's neighbor has told you she can't do it, and has told you so.
May I ask what the question is here, really, because you have admitted that without this neighbor this cannot go on as it is, and that you are not close to the area, and are currently dependent on the care of this 81 year old woman. Who has TOLD YOU all the facts you need.
So I guess I would just like to repeat, Your Mom's neighbor is doing too much; she has said your Mom needs more care; she has told you that she cannot go on doing this. I am afraid the ball is now in your court. I am sorry. It will be sad for your Mom to have to leave her home and she will mourn that, as will you. I am afraid there is, however, no other answer I can think of. I wish you the best in finding a facility where she will be happy.