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Volunteering to provide that care around the clock, every day.....it's like working 24/7 year round. Could she hire extra shifts to come into the home or your home? I'd read the book the 36 Hour Day and see how things progress. It explains what caregtakers can expect. And, I'd read other accounts from family members who care for their loved ones who have dementia. It's much more than memory loss.
I hope you can help find her the right help.
For years, she lived exclusively on morning coffee with cream and lots of sugar, a small hamburger, applesauce with several spoonful of sugar, and a boiled potato with butter, cookies and ice cream as her daily diet.
She rarely (5 times throughout her first 80 years) went to any doctor, only for “palpitations and/or nerves), and at 85 had a hemorrhagic stroke in her left temporal, which went undiagnosed for at least 12-18 before diagnosed, and the neurologist informed me when we finally got her to the hospital, would be fatal.
It wasn’t. She REHABBED HERSELF and lived 5 more years, fell and shattered her hip, and her stroke related dementia combined with the anesthesia meant the end of her independent life.
MY HOUSE was PERFECT for care, so we brought her there. Within weeks of her arrival, I was sleeping on the floor next to her bed, out of fear that she'd attempt getting up and inevitably fall.
We tried it all- live-in help, part timers, family, therapists, medication.... she was miserable and so was everyone else living in my house.
As her only child and POA, I ultimately decided we did have to try residential care.
Tears streaming down my cheeks, I tricked her there and left, nauseous that I had been asked, to benefit HER comfort, to stay away at least 4 or 5 days.
When I returned, she’d already become the staff darling. I still don’t know why, but surely it had something to do with her bull headed Irish pluck, her feisty sense of humor, her determination to break their rules and make her own.
Nearly 5 1/2 years later, she died, surrounded by tearful staff who had become her family too.
Your mom is telling you what SHE wants and needs. Please listen to her.
Your mother wants to live by herself, but she's also told you she doesn't want to be a burden and move in with you. She can get one out two...and that is to NOT live with you.
She needs to be in a facility, don't you think? Even if you're a nurse, do you have any idea what your life will be like if she moves in with you? You're tired of going back and forth to her now, but you will have a whole new level of involvement if she were to move in with you.
Are you one of the ones who refuse to ever put your mother in a facility? I hope not.
Okay, look at it this way.
In the "mother needs 24/7 care and supervision" corner are:
you;
all your siblings;
your mother's entire medical and health care team and
any authorities who may have been alerted by these mandatory reporters.
In the "mother wants to stay home and be left in peace" corner is:
your mother.
And it isn't just that your mother is heavily out-voted. It's that she had a stroke two years ago and is an insulin-dependent diabetic, which is to say not that her opinion isn't important - it is, and always must be - but that her judgement can't be relied on. She HAS no judgement, because her chronic disease will have impaired her thinking.
And you have POA. When you have power of attorney, depending on what type but let's assume it's the right type, you don't only have the authority to act on her your mother's behalf. You have the responsibility to do so.
I'm laying out the grounds on which you not only can but must override your mother's wishes when to comply with her preferences would leave her at serious risk of harm.
You are hoping to please her, and believe that moving her (against her wishes) into your home would enrage her less than moving her to a facility (against her wishes).
#1 It wouldn't. She'd still be enraged.
#2 Only you'd have to live with it. As would your husband.
#3 And one person, even a well qualified and highly motivated person, cannot do the work of a facility with its equipment and trained teams of people.
So. STOP ASKING YOUR MOTHER'S PERMISSION. For now, look up facilities in convenient locations, choose 3-5 that you like the look of, and go and see them. At the very least, don't rule them out until you've done this.
But forcing her to come and live with you - I know I'm not going to be alone in fearing that if you do that, there is a really serious risk that you will be a sorry girl.
Even when both parties start out thinking it's a great idea, the reality of full-time and eventually 24/7 caregiving in the home becomes much harder than almost anybody realises. In your case, you would be starting out by doing the opposite of what your mother has consistently said she wants. You wouldn't even have a fair chance of beginning well.
I appreciate that funding is a worry, but at least find out what facilities are available that might suit your mother. And do do this in league with your sister.
Try a mind map - take a big sheet of paper, and follow the steps of what happens if...
You do nothing
You hire help at home
Mother moves into a facility near where she is
Mother moves into a facility near you
Mother moves into a facility in between
Mother moves in with you
Look up facilities that offer memory care, shortlist three, and go and visit them. Talk to their admissions teams. Talk to other families dealing with similar decisions.
Untangling *what* makes caregiving at home so hard, exactly, is difficult to explain; but the combination of the relentlessness of it, the physical exhaustion, the anxiety, the emotional investment and the simple fact that there can't be a happy ending AND you can't know when it will come all feed into one another. Add to that the likelihood that your mother will resent your intervention, and, truly, you are setting yourself up to fail.
I'm sure you're not expecting gratitude or perhaps even appreciation from your mother, that's not why you want to move her in with you. But when a task is literally thankless and it's overwhelming, that philosophy isn't much consolation.
I have POA. The other thing about mom is that she’s an insulin dependent diabetic. She requires blood sugar tests and insulin four times a day and that makes it hard. I have cameras in her apartment so I can see her at all times and when I’m not there I can call her and instruct her to test her sugars and take her insulin but many times it’s a fight.There was a time a year ago we had a companion with her a few hours a day but it got expensive and she only has an annuity plus social security. I’m trying to be careful with whatever money she has left and it’s not much. Eventually she will apply for Medicaid. I know it will not be easy to have her live with me and my husband but I am fortunate to be able to help her that way. It’s getting very hard to travel back and forth few times a day.... she throws out good food in fridge all the time... she’s alone in front of TV all day... she can’t remember what she did 5 minutes ago. Anyway, I’m agonizing over the situation and her safety... and it’s consuming me. Would I be wrong to put my foot down and force her to live with me.
Even her doctors on each visit tell me she should not be alone. I would feel awful to force her to reside with me but having outside help would not really alleviate my constant worry and travel visits.
Have you and your sister talked about care options for your mother? If the two of you can do the research, find a facility or at least comprehensive services that you think would be a good solution, and then jointly present a proposal to your mother, might she be more ready to consider that idea?
The thing is. Although I'm sure that you, as a retired nurse, are much better able than most of us are when we start out to meet your mother's care needs, there are two immediate red flags about moving her in with you:
#1 It's different when it's your mother, when it's 24/7, and when there is no end in sight that you ever want to happen;
#2 She doesn't want that. At this early stage in her dementia, while she's still able to express her consistent, long-held opinions about what's right, it's best to accept her view.
At least she is open to the idea of accepting help - which makes her a lot less stubborn than many elders we hear about! What about talking to your sister first about making a plan; which reminds me - does anyone have power of attorney or HIPAA authorisation or a health proxy?
If your mother doesn't want to move in with you, what other options will she consider? She's living in her own home at the moment - does she have any regular support apart from you?