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.'
:(
Insight is impained.
Reasoning skills needed for future planning are impaired too. So life continues until that crises that will force change.
Just keep giving Grandma choices she can make for herself as they arrive. It sometimes comes down to choosing from 3 shiny aged care brochures 😞. But even then, if we get to choose for ourselves, we feel somewhat better about things.
Insight is impained.
Reasoning skills needed for future planning are impaired too. So life continues until that crises that will force change.
Just keep giving Grandma choices she can make for herself as they arrive. It sometimes comes down to choosing from 3 shiny aged care brochures 😞. But even then, if we get to choose for ourselves, we feel somewhat better about things.
The solution seems to be that you either: hire a carer to help out with your grandmother while you're out of state or to move closer to your grandmother. Your grandmother is in no position to be left by herself, finding an experienced carer that can cater to the medical concerns seems like the best option.
For more specialised advice, I would advice contacting dementia charities for advice about caring for family members with dementia or wait for the appointment with PCP
Matilda
You would be surprised how many people here understand exactly what your grandmother is like without even meeting her.
What she really wants is a reason to complain and someone to villify. She also wants to spread misery and you know that old saying: Misery loves company.
If you and your mother stayed with her 24/7 serving her hand and foot like two Roman slaves and she's Caesar, it wouldn't be enough. She'd behave abusively to both of you and would villify to anyone who will listen.
If you leave her alone like she wants, both of you are wrong and have abandoned her. Then the guilt-tripping begins and the villifying of both of you to anyone who will listen.
Believe me my friend. Everyone on the forum knows your grandmother.
It's good that she's onboard with a caregiver coming in. Did she like the caregiver from Home Instead? This is important.
I was an in-home caregiver for 25 years. I hae now opened my own agency. In those 25 years I can't tell you how many times I've taken clients with me to run personal errands. They got the chance to go to a store, for example. Or I'd take a client to my house when my MIL was home to have coffee and get some socializing. It got them out of the house. I always did this with clients of mine who could still be taken out safely. It was good for them and for me.
Who did it hurt? No one.
The caregiver is supposed to do light housekeeping. That is true. The client or their family is supposed to keep money and valuables secured though.
To address the caregiver: yes they do light housekeeping. And yet when we showed up one week after firing her the house was covered in dust, the floor was sticky, etc. I’m glad that as A caretaker you were able to take clients on your personal errands however we did not like seeing the hours that we were paying for going to her personal errands. There were times in which my grandmother wanted to go places but that wasn’t where the caretaker needed to go so they went to where the caretaker wanted to go. This is not the place to argue about the merits of home instead or any particular company because frankly they all work the same but when this was addressed along with other issues their local office did nothing about it.
secondly I know that my grandmother‘s behavior is not unique and that ‘ everyone here knows my grandmother.’ Maybe tell that to the person who said that she wasn’t telling us that she was lonely in order to manipulate us because that’s who I was addressing when I said that they did not know her based off of a post and comments.
this forum is poorly run and I think most of you just like to get on here and beat up other people who are going through horrible situations. In the comment section of another question I saw someone randomly dunk on millennials despite a problematic person that the problem was about age not being mentioned.
my grandma doesn’t complain that’s actually one of the main problems that we have is that we have no idea how she honestly feels because she always says that she’s OK or fine which I’m pretty sure I said in my original post. at the end the day I think she is scared and she’s upset and this is the first time in her entire life that she’s had to be on her own. After months of dealing with the aftermath of her being assaulted by a vehicle and the health and legal ramifications my mother and I are burnt out I posted this question after yet another horrible phone call in which we could not see a light at the end of the tunnel. Thank you Beatty for your wonderful comments you have no idea how much we appreciate your insight…
but for the rest yeah you’re right: misery does love company.
I can manage.
I can do it myself.
I don't need help.
I feel this is *wishful thinking* rather than fact.
I see;
Things left on the floor where they fall. Plates & food scraps left on the table. Spills left.
I smell: unable to manage personal hygiene or rubbish.
I can do it.
I'll do it later.
I hear *intention* but see no action.
I feel powerless.
Anyone feel the same?
What I suspect is Vascular Dementia.
From the NHS.UK
"At the beginning, these problems may be barely noticeable or mistaken for something else, such as depression. But they indicate some brain damage has happened.."
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.
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.
please do not answer if you literally have nothing helpful to say.
best of luck to you guys as well.
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.
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.
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.
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.
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.
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.
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”.
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.
"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.
"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??
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.
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.
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.