She most likely has undiagnosed dementia. She was hit by a car over the summer and had to go to the hospital and then a rehab program. We went up to be with her for two months but she very much showtimes and hates my mother and I being there. When we are not there she guilts us about being alone but claims she's fine. She needs to walk with a walker and takes medication daily but she kind of thinks this is all temporary and often walks without the walker. We are out of state and would like her to be in independent or assisted living she complains that she is all alone and doesn't see anybody but 'isn't lonely.' She's gotten increasingly hostile with us but loves everyone else. Some neighbors come by to help out but its not enough; we had a caretaker through Home Instead but we could not trust the caretaker due to her taking her to do things without our knowledge running errands on her own time and possibly pocketing some money. We are out the end of our rope here. I know we are likely waiting for the next incident and then she'll goi to a facility and not leave but I would obviously rather have her go before something like that happens. We have had to take over all of her finances and her mail now gets shipped to me because a piece of paper that enters that house gets lost almost immediately.
We have a followup with her new PCP next month who knows about our dementia concerns with her and her PCP has talked to her a lot about needing to use the walker all the time. We know from her friends that she is not using the walker when we are not there.
This week she told us the next day that a smoke alarm went off in her bedroom and she seemed more annoyed that a smoke alarm woke her up and wouldn't stop than that the alarm was going off. Evidently she called her handyman and the battery needed to be changed. I am concerned that if an emergency happened in her home she wouldn't know what to do. She often doesn't have her cell with her in the house and refuses to wear a medical alert.
This whole situation is stressing my mother and I out so much. She seems to actively sabotage our attempts to make things more accessible and safer in her home. It's too much house for her and things have stopped working. Does anyone have any additional ideas on how to manage this? I know we are likely just stuck in a purgatory like state until something else happens but we cannot take her constant bullying and her constant covering for memory issues and physical issues - whenever we ask her about something being wrong we're told 'im fine' or im okay.'
:(
We tell the love one the move to senior living is an extension of rehab, doctor's orders. If that elder wants to move back to their home, it is ok to use what is called a "therapeutic fib" such as the plumbing needs to be replace, etc. Something you feel that Grandmother would believe.
The hard part is now sitting and waiting for the next emergency.
When we’ve explained what doctors have said to her because she doesn’t remember she seems to accuse us of lying to her. Saying things like ‘well they didn’t say that!’ Or ‘well I don’t remember that.’ But unfortunately when the next thing happens we will be placing her somewhere permanently. I just wish we could convince her before.
She fell and broke a hip in 2020 and this past time she was hit by a car in the parking lot. While we knew there were memory issues she was able to live somewhat independently. However the trauma of this accident ended up greatly negatively affecting her mental health.
I appreciate that we ‘should’ have done things differently but my mother and I also have our own issues and we’re dealing with the legal aspect of the accident at the same time.
if your moms finances will not sustain her in AL for the rest of her life , I would start looking now for one that will eventually take Medicaid. That was the biggest mistake I made. AL s that take Medicaid vary with a period of self pay . You have lots of choices of AL s that require 2 or 3 years of self pay. When I finally moved my mom near me, she had about 10 months of self pay and pickins was slim. I had an independent care advisor from a franchise called Carepatrol, who helped me find a place.. invaluable !
You also say the following: "I know we are likely waiting for the next incident and then she'll goi to a facility...."
EXACTLY. As soon as she is in hospital you should contact Social services to begin placement and discharge planning.
This is the best you can do, and to be frank this is almost impossible to do long distance. I sure wish you the best. Not everything has a good answer, and an uncooperative, failing senior has no good answers at all. Sounds you are doing the best you can. I sure wish you luck and hope you'll update us and share with us all you learn; you can be of great help to others. When I first came to Forum I learned that my anxiety and helplessness shared helped me enormously. I at least knew I wasn't alone.
Just reading on this forum has been tremendously helpful; on here (along with some other googling and what not) I have learned what behavior is common and that we aren't experiencing anger from a loved one alone.
I too am in 'The Club'. The 'Awaiting the Crises Club' to effect a move from solo to supported living.
A Social Worker explained the process. Advised to;
- Focus on what I can control (not what cannot).
- To inform the medical team of situation where I could (when a crises happens).
- Begin researching suitable living options & locations. Eg near LO's home or near mine.
- In summary: to be an Advocate for their care - for a NEW plan, rather than step in to prop things up that are no longer working.
To be 'ready to roll'.
I love the 'ready to roll' part, I think that will be our new mantra!
Thibg is, let her stay. My Mum has dimentia. She lives alone and doctors let’s her per signing she is legally able. It’s a modern world. Dimentia and Alzheimer’s do not mean a person suffering from thide must leave their home or have a conservatorship.
Your hassle of her being in her own home are less then if she was in assisted or memory care at at your own home. You will have same amount of duties if not more if she leaves her home. People misunderstand this. Removing from her home isn’t necessarily needed just because you fell it is. You don’t see her daily. Clearly she’s feeding and dressing herself and able to answer phone for you to speak with her to confirm convince her to leave her home.
it is her right to die in her home or wait to live in it until doctors and the court say she cannot. Moderate Dementia Broken hips, cancer is what my Mum has. She legally can still drive yet she chose not to and is fine in her home. It is only once severe dimentia or Alzheimer’s is existing.
It is NOT safer in institutional residential care. My mother in law fell geode with personal assistants right next to her. They can’t stop fails only reduce them and be immediately there to administer aid and call paramedics when one falls.
Point is it is not always safer, easier, better or legal to remove your mother. It’s her right to stay unless you get a conservative or convince her. Elder attorneys say is a senior citizen’s rights, even with dimentia Alzheimer’s that no doctor had tekrn rifhts away with certified and you don’t have conservatorship.
So be patient. She will either see she needs to leave one day or doctors will tell you she must. Elderly still have rights to stay in home even id adult children disagree so long as they are not a threat to themselves or others and can do five tasks I’d daily living. That’s the law.
It is hard news to take when you care about your parent. But it is their right to die in their home or be their as long as above qualifications Re met. Remember, you will want to remain in your home also for as long as possible. It’s just familiar and with good memories. Do you want to removed prematurely? Nope. So be patient. A situation will occur that shows she is unsafe and that will decide it. Sometimes a fall isn’t enough to remove a person since they rehabilitate well.
good luck. Sorry for honest information you and many may disagree with. But it’s the law.
I was looking for advice on how to manage this from a far. Some of the answers have been somewhat rude and accusatory of why we even let my grandma go home by herself when she was discharged.
I don't like that you think I want her moved because this is a 'hassle' to me. This has destroyed both myself and my mother's lives. I don't know how after the snippet that is my additional information you assume she is feeding herself and dressing herself. Most days she doesn't eat, she has lost significant weight and most of what she does eat are cookies and ice cream.
This forum should provide some comfort and maybe ideas people haven't thought of before or presented in a way they haven't thought of before. Your answer especially "Sorry for honest information you and many may disagree with. But it’s the law." is just mean. You make it seem like I want to take my grandma's rights away. Quite the opposite. But I am also aware that I am terrified that something happens to her and no one knows until it's far too late.
I certainly hope this will somehow become possible for you to do.
My mom ended up going to an ‘end of life’ hospice care home. I had enormous relief knowing that she was cared for 24 hours a day/7days a week.
You will have peace of mind if your mom is looked after by a professional staff in a facility.
When I was touring facilities that I was considering placing her in, I would ask when is the best time to place her. Every facility told me to do so before it is absolutely necessary. The reason being that they will adjust better to their surroundings.
Have you selected any places that you like? Some children take their loved ones to have a nice lunch at the facility that they are interested in as an introduction to them. Could you schedule a tour with lunch included for the next time you visit with her?
Some parents won’t go willingly. Then, you do have to wait for the crisis.
It’s especially hard for you, since you live far away. I am so sorry that you are dealing with this. Wishing you all the best.
The bad part is I would move up there to take care of her but she doesn't like me or my mother being in the house for more than 2 or 3 days and seems to prefer any one else's company as opposed to us.
Keep in mind that facilities are not like they were years ago. They aren’t the same as the ones that your great grandmother was in. They have activity directors and plan lots of activities for them to participate in.
Look at some of their websites online for her area to get an idea of which ones are suitable.
Since your mom has POA, maybe she should go ahead and sign mom up for a place that she thinks is best for her. Frankly, I think it would drive me crazy, waiting for something bad to happen. I did wait for it for awhile, but it was much too long in coming for me and I placed mom in assisted living, against her wishes. I told her 2 days before and hubby and I set up the apartment the next day and moved her in the next. It took her a bit to adjust but she's doing fine. Still snarky comments here and there, but that's ok. She's safe and I am not burnt out anymore. Win-win.
With dementia, you just never really know what they're up to, they can't tell you and whatever they do tell you can't trust it.
She may say she's fine but that really doesn't mean much. You know that's not really the truth.
So, get ready. Have a place lined up. Try to make a plan on getting her moved sooner rather than later.
Best of luck.
"Cannot live alone anymore, but insists on staying in her home."
Somewhere betweeen independent & dependant. This is what Grandma has not come to accept yet - won't or can't.
But if Grandma can accept this, accept some help (home services, cleaning, deliveries etc) this will KEEP her independence for longer. Increase safety therefore stay at home longer.
However, by staying in denial, refusing help, this will do the opposite. Reduce safety eg increase risk of falls, serious injury, hospital admission.
Stubborness gets you a faster ticket to the nursing home.
So keep talking it over with Grandma. Let her choose her way but knowing the risks. Keep the message simple. We care. We are concerned. We want you to have some more help around your home.
Basically choice A. or B.
A. accept help
B. be stubborn & take the risks
Then I guess sitting down with the concern family members & working out your own risk tolerances. What will your *line in the sand* be?
I've had to move my line a few times... Despite my many real concerns - safety, nutrition & hygiene, my LO still ives solo.
Things to weigh up examples;
Eating crackers for dinner (not ideal) vs missing meals for days (dangerous).
Being fearful at night & calling you (acceptable) vs fearfully leaving the house at night (highly dangerous).
If I am way off here, old let me know.
Maybe you want more practical examples of what services to sneak in??
"Cannot live alone anymore, but insists on staying in her home."
"Cannot". Or maybe technically 'can' but shouldn't. Somewhere betweeen independent & dependant. This is what Grandma has not come to accept yet - her new level of function. (won't or can't)
But if Grandma can accept this, accept some help (home services, cleaning, deliveries etc) this will KEEP her independence for longer. Increase safety & stay at home longer.
However, by staying in denial, refusing help, this will do the opposite. Reduce safety eg increase risk of falls, serious injury, hospital admission.
Stubbornness may get you into a nursing home faster!
So keep talking it over with Grandma. Let her choose her way but knowing the risks. Keep the message simple. We care. We are concerned. We want you to have some more help around your home.
Basically choice A. or B.
A. accept help
B. be stubborn & take the risks
Then I guess sitting down with the concerned family members & working out your own risk tolerances are. What will your *line in the sand* be? When you force Grandma to move.
I've had to move my line a few times... Despite my many real concerns - safety, nutrition & hygiene, my LO still ives solo.
Things to weigh up examples;
Eating crackers for dinner (not ideal) vs missing meals for days (big risk).
Being fearful at night & calling you (acceptable) vs fearfully leaving the house at night (highly dangerous).
If I am way off here, pls let me know.
Maybe you want more practical examples of what services to sneak in??
I think everyone in the world dealing with an elder with reduced independence, dementia, or just plain old ridiculous stubborness knows all of this already.
The OP's grandmother is a risk to herself and others. Like most seniors refuses outside help. Talking to her over and over isn't going to do a thing.
It has to be forced on her by the state because family is getting nowhere with her. This happens when the police and APS do wellness checks on her and see that she isn't safely functioning. This usually means facility placement, but not always. If the family advocates for live-in help and regular wellness checks a person can remain at home.
The family has to talk to the police and APS. The grandmother isn't going to.
my case was much like yours. I was dealing with both parents who were not safe at home. I was making a crazy long drive every few weeks, crisis after crisis to be dealt with. My folks refused any help, no one was allowed in the house, we’re just fine! Moms falls were getting more frequent and her injuries worse. Dad had moderate dementia and could hardly tell if she were dead or sleeping.
Finally, after a bad fall and three days in the hospital I had her moved to an assisted living facility that I had previously visited and kept in contact with.
I told mom it was just until she got well. I got dad in a few days later by telling him mom needs your help over at the rehab. It was still a big hot mess for a few weeks but at least they were safe, clean, had in-house medical care and were not in danger of burning the house down or freezing to death in the back yard.
if you haven’t already done so visit some facilities in the area and keep a couple on deck for when the next crisis hits. Granny is never going to voluntarily move. You’ll just have to do what has to be done.
best of luck to you.
Or grandma has to be placed in a residential care facility where she is safe and can be looked after.
From what you're saying here, she definitely has dementia. No old person ever willingly goes into a care facility and they usually don't accept homecare unless someone forces it on them.
How you deal with the asinine often dangerous stubborness is by asking the local police and APS to make wellness checks on her. Explain to them that you and your mom live out of state and that she villifies and lies about both of you to anyone that will listen. Also tell them that she is unsafe and refuses to move or accept help in her home. This will get the ball rolling for her.
There's really nothing more you can do. It's a terrible situation that many families face every day. Usually it has to come to a crisis like a fall happening and the elder getting placed against their will.
the state that my father has ALZ and his DL was revoked. So now if he shows up there they legally can’t let by brother get in the car with him as they would be liable because my father is breaking the law by driving without a license. As crazy as it is, even people with severe brain disorders that are a danger to themselves still have “free will”.
We didn't do this with my Mom. At least not with enough detail. She always sort of agreed that "when the time came" she would move into assisted living. Of course by the time "the time" came, she no longer had the facility to understand that she was NOT safe living in her own home and needed more care than we were able to provide. We had a number of really difficult years because of this.
I am now of the mind that the time to make a change is before it is absolutely necessary and the elder has the ability to make some rational choices--not just insist that the same old routine still works.
For me and my LO, we have a two-fold criteria for "the time". One is mobility. If either of us needs assistance getting in or out of beds or cars, it is time. The other is the maintenance of home and yard. I will continue to hire additional help to maintain the house and gardens to the level that pleases me, but when the hassle of arranging for and paying for tree pruning, painting, lawn mowing, and prepping for the various tasks becomes bothersome--even if I am still keeping up--we start looking for a residential space that we can accept. My criteria are quite specific--and written-- so that I don't just let my standards slip to avoid the bother of moving. Age tends to soften the resolve of younger wisdom, so we are protecting ourselves against our own later poorer decision making.
I am also going through the stuff we have acquired and getting rid of bunches of it so that we don't kid ourselves that we are getting on OK when we really just can't stand the idea of going through the junk. Our goals are to make the best lives for ourselves that we can and also to spare our children many of the heartaches that we have suffered with our parents, aunts and uncles.
We have all been through this and sometimes the answers are not all butterflies and roses. Sometimes you have to make the tough decisions that are really horrible to live through.
Until then, you might want to look into "Visiting Angels" or the Care Advisor on this site. You also might want to video her behavior (sundowning, etc.) and living conditions to show Adult Protective Services if needed.
Prior to the defining incident in October when my mother fractured her femur and could no longer return home, I toured facilities, made financial plans and applied for state insurance. We were as prepared as we could be. It would be great to avoid the crisis but sometimes it's unavoidable. Best to you and your family.
Finally after one nasty protest, my brother moved her out of State to a NH near where he lived. Her anger got reduced with social workers assistance. I was finally free find professional help myself so I was able to seek work and call my mother just one day weekly.
Biggest thing I can tell you that has set me on the path to freedom is we all have free will. We have the freedom of making choices, good or bad. All of us have been gifted this privilege in life. How are we going to use it? Are we going to use it for us or against us? Can we sit and in honor others free will without imposing? Simply choices…..
I’ve been telling my daughter for years something I made up after my ex and I divorced - Haters gonna hate, bakers gonna bake, takers gonna take, why we gonna wait?
Why are we going to wait on other people to change? Why are other people going to wait on us to change?
Do we have the capacity to live in an inner world where we let people make choices they feel best for themselves without taking responsibility or ownership of their choices?
I know that you love and care for your grandmother but it sounds like she wants to be in full control of her life without any help or suggestions. I would lend her an open ear and heart and allow her to continue to live her life as she sees fit.
best of luck to you guys as well.
please do not answer if you literally have nothing helpful to say.
She isn't using her walker - has she fallen since being home?
Taking medication daily - is she taking it, as far as you can tell?
The smoke alarm - she did know what to do. She called the handyman, who replaced the battery. I get annoyed when my smoke alarm starts squeaking at me, too (the noise is supposed to be annoying - it makes you do something about it quicker).
You mention in a reply that she's mainly living on cookies and ice cream... H'mm. Who wouldn't if no one was watching?! But seriously, what happens about groceries, has your mother set up deliveries or anything like that?
The loneliness and dissatisfaction she describes, which you and your mother feel guilty about... Look. She's telling you about her day. If she isn't all sunshine and roses, is that your fault? What I'm saying is that guilt isn't an appropriate response to her giving you an account of how she's feeling, and she isn't talking to you with any intention of making you feel responsible for her, is she? She doesn't want you to devote your lives to her and she's already made that plain.
I'm sorry to hear that you felt you couldn't trust the support worker, but there again I'm not quite clear what the problem was. She was taking your grandmother out on unauthorized visits where? Why did you object to her running errands on her own time? And were there any substantial accounts of money going missing? - in which case, was this taken any further?
What outcome are you and your mother actually aiming for?
she’s clearly onboard with having a caretaker but it’s hard to find quality people where she lives. The caretaker was not doing take around the house she was supposed to be doing and they left to go run personal errands for the caretaker. My grandmother can afford help but she was very expensive and we were paying for work that wasn’t getting done.
im not looking for solutions to every single problem we are facing. I gave specific examples to point out we are concerned about her overall quality of life. The issue with things like not using the walker and has she fallen? We wouldn’t know because she doesn’t tell us things and we wouldn’t know. With the smoke alarm the handyman was called at our urging when she told us a day or so later. If an emergency happened I don’t think she would know what to actually do.
Write a letter to the dr ahead of the appt and discuss all concerns. Request that he can put it to her as coming from him. That she could benefit from in-home therapy, the weekly nurse that comes with it. He may be able to talk her into a private paid caretaker (however many hrs she can afford) to come in and do some heavy cleaning in the house for her and be able to observe.
You can ask her if her goal is to stay in her home, she needs some folks coming in to help and check on her. The walker is also a must. To put it in perspective, tell her you know she doesn't always use the walker and if she continues to make that choice/falls down, you know she won't be happy ending up laying in the bed at a NH all the time. If she argues about it, tell her it's definitely her choice on being safe and selecting where she wants to go if she falls down and breaks a hip or other permanent injury. Then walk away and let that simmer a while.