My mother has been living with me for the past couple months. Her primary care suspected dementia and asked her to get an MRI and detailed evaluation (4 hours of cognitive testing) over the summer. She completed the tests and just yesterday was informed that yes, she does have dementia and should not live alone.
I am very happy to have her stay with me. We are doing well living together, she has lots of space in my home, has her own bedroom and bathroom. Her very caring, sympathetic, wonderful geriatric doctor made it very clear it is not safe for her to go home.
I read lots of articles about parents asking to go 'home' when they perhaps don't mean their actual homes - even some of them already being at home.
Yet, with my mom, she really wants to go back home. She is not distracted by a drive or a change in subject. Her cognitive abilities are still intact to know she does not want to be moved from her home.
She is planning to ask other siblings to pick her up and take her home if I will not do it. She has even said she will call a cab if she has to.
I am empathetic to her situation, of course, but she cannot be left alone to live. I cannot live with her at her home. Her home is not suitable for her current situation.
Please help me with suggestions on what to say, do... will be happy to hear any ideas. I want to avoid a problem situation that upsets her. Thank you.
Any of these excuses may calm her down a bit, because it isn't about YOU telling her she can't go home --it's CIRCUMSTANCES keeping her from going back. Sometimes it works better when there isn't someone to blame.
I HAVE been using COVID - oh boy have I.
You are really on to something about the circumstances part. My Mom doesn't want to be told what to do by anyone. She seems to see me as the enemy when I say she needs to stay, she heard the doctor, etc. She reads the paper about COVID, so a silver lining in the virus is we shouldn't go anywhere for a bit. I am trying for 'at least the winter months.'
I am going to keep this in mind for all kinds of situations as they arise - not the person at fault, but the overall circumstances. Might come in handy with my husband too : )
Thank you,
janice
Have you asked her what it is about living with you that makes her want to go home (rather than asking, "why do you want to go home" ask "is there something that we could do to make it better here?").
I would encourage her to call her doctor if she insists that she wants to go home. The doctor can possibly be more authoritative than you can about "no, this is not possible".
In the end, you may need to let her go and fail. She WILL have an "emergency" and you will need to say "no mom, you said you wanted to be independent; if you have an emergency, call 911, not me". It sounds cruel, but sometimes the only way to get our elders into the care they need is for them to have a fall or serious illness that puts them in the hospital. At that point, you can ask for placement in a facility.
If she still has the reasoning skills to "get" that, explaining this scenario to her might get her to stop. But in dementia, reasoning is often the first thing out the window, so don't count on it.
As for whether she is considered incompetent - I cannot answer for sure. This is all new to me too. The psych doctors wrote in their report that she is not able to live alone. Her primary care who is also the head of the geriatric department at a top 10 hospital gave my Mom three options - live at home with 24-hour care, move to an assisted living facility or stay with me.
Whether those options mean 'incompetent' I do not know.
We were also advised to get power of attorney set-up as soon as possible, before her memory declines further.
We have asked if there is anything we can do to make here better for her.
She says it is lovely here and she appreciates everything we do for her, but she just needs to be home. She also believes people will come to visit her at home for Christmas which they will not due to COVID.
We take her to social distance outdoors to see family regularly - with masks.
She sees more family now than she did pre-COVID.
The bottom line is -- she is very independent, determined -- always has been. I know other family from my husband's side who welcomed being taken care of with the same diagnosis. It is not in my Mom's nature or personality to have decisions made for her. I am aware of that in all my dealings with her. I am, after all, her daughter and the apple sure does not fall far from the tree.
But, I still need advice. I really do.
Taking away freedom, independence and self reliance can be the first step on a road to decline of coping abilityand self esteem.
Why is her home not suitable, and how can you adapt it? That's what we did when my sister had terminal cancer, and during my father's long decline. I'm thinking now how to adapt my house, and on a more challenging basis, how to continue gardening. The first step is to switch to raised beds to cut back on the bending.
You can take precautions such as making the home safer (eliminating throw rugs, getting a lifeline alert service, external lock for quick access by police or paramedics, and many more such precautions.)
I don't criticize anyone who will post and disagree with me; fortunately we're entitled to our own opinions.
If I did live with someone, I would continue to be as functional as long as I could, or if I lived alone, I would take the same approach, modifying and streamlining my life to accommodate the challenges of age (which is one reason I've decided to restudy math over the winter, to keep my mind from deteriorating.)
I would also say that 4 hours of cognitive testing to me is excessive; the only exams I know of that are that long are bar exams, and I know from legal friends and workmates that that's very challenging, even for young 20 somethings just finishing law school.
If someone wanted to test my cognitive abilities for 4 hours, I would be quite blunt in telling him or her what to do with those tests. Or I'd establish break times and expect to be treated to coffee, cider, OJ, and/or something to refresh me. A nice salad would be welcome too. But just testing for 4 hours - not gonna happen to this old lady.
And that's definitely not a criticism of you; it's of the doctor who performed it.
As for staying in her home -- The doctor suggested she stay with me at the end of May, 2-3 days per week was her recommendation. We did that June, July, August and September. Each and every time my Mom went home she was confused, miserable, taking her meds out of her pill-pack and refilling them incorrectly. She is on blood thinners and insisted on taking double the dose each day. Left the water on to boil and couldn't hear the whistle of the kettle. She has brand new hearing aids as of June, but refused to wear them when she was home. She was absolutely miserable. Crying. Sleeping throughout the day. Groggy. She believes she was not over-medicating but the number of pills I counted proved differently.
I would love for my Mom to have what she wants, and I tell her that when she says she will be going home soon. We tried throughout the summer to have her make it on her own. It was such a quick downward spiral each week. My sister and I took turns being there each day to be sure she ate, took her meds, etc. She would definitely be hurt if left alone.
At my home, I am with her 24/7. We do jigsaw puzzles, read and discuss the daily paper, complete JUMBLEs, watch old tv shows, do crafts, eat our three meals together. My Mom is thriving here considering her dementia. Night and day. I promise you.
So you and any other family must sit with her and tell her once that the doctors have decided now that she is no longer safe to move into her own home. That if she insists on such a move, or threats of leaving for her home you will need to seek guardianship and have her placed in memory care for her own safety.
Tell her that you love having her, and that you are so sorry she is now diagnosed with this illness. That you will not EVER abandon her, but must now protect her. And that you will do so. Say all of this as gently as you can. Hopefully she can understand it; hopefully she will adjust. But the future will be as it will be ongoing, with all the challenge and change. And you will have to act in her behalf now to the best of your ability.
I assume you are already POA. Hopefully you will not have to seek guardianship, but you do have the full evaluations to do so. Congratulations on what you have already accomplished for your Mom; what a splendid job!
There are days when she seems to understand everything and other days not.
For some reason she cannot understand the safety issue. She keeps saying, "I don't know why everyone thinks I won't be safe. It's not like I am going to roam the streets."
I tell her about the tea kettle, the stairs, that she might put a pizza in the oven and forget -- she shakes her head and says that would never happen.
I am using the 'protect' part - that I have to protect her. I also told her last night to think about, if EVERYONE we ask says she should stay with me to be safe there must be something to the safety.
Thank you for saying I am doing well at this. It is easy to second-guess yourself when the situation is this fragile.
take care of yourself,
janice
My mother scored well on MMSE's until about 6 months before her death. She had vascular dementia and her memory was still very sharp. However, she could't reason or solve the simplest problems, which what was leading to her constant anxiety and panic, which in turn was driving her BP sky high at times.
Had we not had the testing, everyone in the family would still be telling me that mom was fine and just having a pity party.
I was nervous the testing was too much on my Mom. I was being interviewed by a psychiatrist to get background information while she was being tested. I kept asking what she was doing in the next room, if she had something to drink, etc. Not to mention, the stress of the testing itself - was it making her sad, was she getting more confused, was the person administering the test being patient, were the people around her wearing masks, etc.
My mom's dementia is vascular also. I keep saying, if you talk to my Mom you wouldn't notice much, but if you ask her to solve problems on paper or draw a clock reading 4:15, you'd see there is something wrong.
My Mom's doctor is just lovely. If she recommended the testing, I knew it was necessary. Not to mention, she gave my Mom a short memory test prior to sending her to the extensive testing to be sure it was warranted.
Thank you for 'having my back' on this. Like anyone with a conscious dealing with a loved-one with dementia knows, each decision is delicate.
janice
I heard a funeral director say one time- there is no wrong way to have your funeral planned. Thank you for applying that to this tough situation. Boy are you right, second guessing can be torture - this is enough - don't need anymore of that.
janice
We had her gas stove turned off so she could only use the microwave or electric tea kettle (with auto-shutoff). A caregiver came by for a couple of hours every day to make sure she took her meds, which were in a locked box otherwise, and tidy up a bit. Once a week they would do laundry and assist with a shower. We replaced her glass dishware with plastic, etc. We did try to get her to wear a Med-alert device but she would forget to put it on. I was about to consider an in-home camera (I live far away) when she declined to the point where she needed assisted living.
My Mom has no problem taking appliances apart - using tools. If her stove stopped working she'd 'investigate'.
She is quite the wonder. Her independence knows no bounds : )
Keeps me busy.
janice
Thank you for these ideas.
I think my Mom knew way before we did that things weren't quite right. She initiated lots of these things herself over the past year or two - I want you to know where these papers are, what my insurance covers, etc.
You are so right. I need to have as much together as possible. These aren't the things I want to have to try to have a head for as we go through this journey. Better to have the paperwork in order, and ready to go. My Mom has taught me to keep files and she has very organized/labelled files herself. Once again, another time that SHE has taken car of ME. Makes it easy to take care of her.
janice
My Mom for instance, wanted to back to L.A., and had even arranged someone to pick her up at the airport. I had to go so far as to pull up the airline schedule and give her the alternative flights. Essentially I had to call her bluff. I did this many times, but she never followed through.
It may be that you have to let one of your siblings take her back, and let her deal with it herself. Do not offer to go and take care of her there. Let he handle things herself. Eventually something will happen that she will figure it out herself.
In the end she will come to realize that even though she is in her home, it's difficult to function. She'll come around... just give her time.
I cannot believe you had to pull up the flight schedule : ) — bittersweet thought
thank you for taking time to write,
Janice
What a pity that he failed to explain to your mother what the implications of her test results were. What a pity that he did not also hand you the necessary documentation that would support your application for guardianship of your mother.
So. Where is her home, who is nearby, and what activities of daily living does she *now* (i.e. not in the future) need support with? Because you'd best get busy setting it up.
As things stand, absent any declaration of your mother's incompetence, guardianship or enforceable Power of Attorney, you have no legal right whatsoever to obstruct your mother's return home. I agree that you do not have to participate in it, but you cannot prevent it.
If you force your mother to remain living with you at the moment, you will destroy her trust in you and wreck your relationship. Looking at her capabilities at the moment, what are the risks of her living alone that most concern you?
I am not forcing my Mom to stay with me. I am reasoning with her and honoring her wishes as much as possible - unless it would mean she isn't safe.
Risks of living alone - she has already left a pot of water on the stove and could not hear it whistle. She has brand new hearing aids we got her in July. She uses them here everyday. She would forget to charge or wear them when she was home. She rearranged her meds and took double blood-thinners for weeks. She lives in a COVID hot spot. She has answered the door and brought drinks to a stranger at the door asking for a drink of water.
She hears things others don't hear and often goes outside to investigate - has gone to the next-door neighbor and knocked - called the police at 2 a.m. because of the noises.
Our relationship cannot be wrecked - no way, no how. We are as close as a mother & daughter can be : ) This IS such a tough situation because we are so close and trusting of each other.
janice