My mother’s condition (stroke, right side paralysis, unable to stand, incontinence) is waxing and waning. She became unable to stand last December and her caregiver expressed inability to continue caring for her due to her condition worsening. I came and have been staying with her since January and have decided she should move in with me and my husband. She does not want to move. People (caregiver, family) think they can handle my mom now that I have decided to move her in. My issue is, if she stays and they continue to struggle (because that is how they are, my family is addicted to suffering), what happens in 6 months when she declines further? I took medical leave from work to deal with this but I still have a life I need to get back to. Do I let them deal with this on their own or continue with the plan of moving her in with me? I do not appreciate the back and forth with these people because it adds too much confusion. When someone says “I can’t do this anymore” or “I can’t do…” I take that very seriously and act on it. I don’t know if because of the fact that I am physically here and handling everything, they seem to have gotten a second wind. Any advice is appreciated.

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Coming in with a viewpoint of someone who is doing this at home.

In November, 2017 I brought my mother to live with me after it became very clear that she was no longer able to live on her own safely. (My reasons are for another conversation.). I am doing this 100% solo (my only sibling is dead) and My mother will be 97 years old next month.

We are now on our 7th year of this and there are a few things that I've learned.

It's my opinion that if you move your mother into your home, you will ultimately be taking on 95% of the daily care duties and 100% of the night duties. Can you navigate work while sleep deprived?

You mention that you have a life you need to get back to......I had one also...
Be prepared that it will be a huge struggle to keep that life over time. At first, I was able to maintain my life as long as my mother's health was fairly stable. But nothing stays the same, and as her care needs increased, my life decreased. Now I still have only a fraction of my own life.

Expect that to happen.

Sitters - other caregivers, etc.....
I've had a variety of care ladies coming in to stay with my mother so I can get out. Two of them have been with me since 2020 and others have come and gone and had to be replaced. (I hire privately and have not used an agency.) The sitters are about 50-60% reliable overall. Either they are taking a trip, or they or someone in their house is sick (I never allow anyone in my home who has been sick within the last 7 days), or they have an appointment for something or other and can't come.
So, be ready to have to change or cancel your own plans at a moment's notice.

Example: It took me from September to December - making and then having to cancel and reschedule appointments - to have my annual exam and Pap smear. Very frustrating, but a reality.

Need sleep?
I have not slept through the night but a handful of times in the past 4+ years. If I have to get up once a night with my mother, that's a good night. I have had many, many nights that she kept me up half the night and at my age (64) that is destructive emotionally, mentally and physically. My mother can wake up even after having 2 doses of Ativan. There is no sure remedy that I have ever experienced that can guarantee sleep.

Do you like to travel? Go out in the evenings? Garden?
Since my mother came to live with me, I have only spent two nights out of town and that was to see my son graduate from college in 2018. Just getting a sitter to stay with her so I could go to one dinner party was hugely stressful and not worth the aggravation. Then minute I walked in the door, she started calling me after having left the sitter alone the entire time I was gone. Very frustrating.

While I type this, I'm sitting in the house with her, because of course she can't be left alone. It do this day in and day out.

Suffice it to say that eventually someone will have to perform all of her "activities of daily living" for her, all the way down to brushing her teeth and clipping her fingernails and everything else you can think of.

As the years wear on, your family and caregivers may just drift away, because, well, you're there, and "things come up" etc. etc. I would prepare for that as well.

Nothing wrong with bringing your mother to your house to live, but I would recommend that you count the cost. No one told me that.

Your home is no longer your private sanctuary. It's where you work - after you work if you're able to hold down a job - and not where you relax.

You will have the new vocation of running a care home for one. I wish you all the best on your decision - just make sure that you can do it alone if your other caregivers and family don't stick it out.

Make sure that you are in peak health, emotionally, physically, psychologically and spiritually and that your marriage is healthy....because doing this will threaten to crush you in every way.

I wish you the best.
Helpful Answer (29)
Reply to southiebella
Southernwaver Feb 17, 2024
It’s hard to watch someone on the front end of this when we know the struggle. I’m sure it sounds rude and unhelpful sometimes, but it’s like watching someone about to fall off a cliff.
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You have no clue what you’re taking on if you move her into your home.

She needs more than assisted living. She has medical needs that are way above your pay grade. And it will get worse, not better.

Hundreds of people on this board thought they could do it themselves too. Now they are exhausted, broken mentally (and physically) and wish someone had warned them. Consider the following:

-Whatever schedule you have now will be out the window.

-There will be no more dinners out, no vacations. Friends and family will say to call if you need help, but  almost none will volunteer to stay with her if you need time out. 

-You two will be her world. You will be expected to meet every need, including companionship.

-When do you plan to get things like errands and grocery shopping done? She cannot be left alone. 

-Can you lift her multiple times a day and night?

-If she worsens, how will you handle the medical needs?

-Are your toilets, bathtubs, etc handicap-ready? Will her bed have safety rails? Are meds stored safely?

-Can you handle multiple toilet visits, butt wiping, diarrhea, bed urine, and getting her undressed/dressed? Multiple times a day/night?

-Are you able to help with bathing daily?

- If she keeps you up at night, how do you plan to handle work/chores the next day? Same goes for working from home. 

- If you get sick or injured, what plan do you have for her care?

- You'll very likely need aides. Are you okay with strangers in the house?

- When you are no longer able to care for her, how will you get her into a nursing home? 

I've said before that people think they can "love their way" through caregiving. That love will be enough to sustain their energy and will. It isn't. Nor is it the same as caring for a baby. Caregivers here loved their elder dearly. They had to place their elder to save both of their lives.
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Reply to LoopyLoo
BurntCaregiver Feb 12, 2024

You summed it up perfectly. Families think they can as you say "love their way" through caregiving. Do they ever get the rude awakening a little while in when they see they can't.
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Please do not move her into your house. That's a bad idea. Here's what you should offer.

Find a care facility near to you that she can be placed in. This is what you offer.

If she wants to stay in her home and the family along with her main caregiver think they can handle her, there will be no stopping them. So step aside and let them try.

I did in-home caregiving for 25 years and am now in the business of it. So I'm going to speak from experience because I've seen every family dynamic there is. Families start out with the best of intentions when it comes to taking care of an elder or an invalid. But the road to hell is paved with good intentions. Remember that.

Make yourself plain to everyone that when the sh*t hits the fan (and it most certainly will) and everyone is "burned out" make it known to all parties that you will not step in and handle it.

Your mother belongs in managed care. She is fortunate to have you and a family that cares about her. If she is placed all of you can visit, help her, and be in her life. She will need all of you to be.

Offer to find a good facility to place her in so she can get the care she needs. Good luck.
Helpful Answer (22)
Reply to BurntCaregiver

Taking care of a stroke victim is difficult. I've done it. You state that she really doesn't need much. Then you tell us that
1. She can't stand on her own.
2. She's incontinent.
3. She needs help with her brief/diaper
4. You transfer her to (a) chair (b) bed (c) commode
5. You have to hire someone to take care of her.

Wake up call - SHE NEEDS MUCH.

Don't do this! None of it will get better, only worse. The incontinence alone is daunting, since it requires changing her and will eventually involve fecal matter if it doesn't already. Germs, and you need to glove up. Smells. Odors that spread throughout the house no matter how you try to keep things clean. You risk injury transferring her, no matter that you can do it NOW, because all it takes is a slipped disk or two to render you useless in that regard - and then what?

Hiring caregivers sounds so easy, but it isn't. They don't show up sometimes, they aren't as capable as you thought they'd be, and you will need more than one for sure. Plus what few people think of at the outset: You'd have a steady stream of helpers in and out of your house. You need to feed them. They might feed themselves, and well do I recall the fragrant smell of fried iguana or something like that permeating the house while I tried to sleep in my room above the kitchen at 2 a.m.

If you love mom, find her a care situation in a nice facility where she'll have companionship, food prepared, and 24/7 help. Then count your blessings and enjoy peace in your home.
Helpful Answer (20)
Reply to Fawnby

Are you completely crackers? Do NOT move her into your house. Get her into an AL facility. The fact that she does not want to go there is irrelevant. She needs more care than a family member can provide.
Helpful Answer (17)
Reply to olddude
Jen418 Feb 12, 2024
Yeah, I think I am! LOL we did explore assisted living and that option is completely out of budget for our family. I have been living at her house since January taking care of her and I seem fine so far. She really doesn’t need much, all she does is watch TV all day. The hardest part is that she cannot stand on her own and the incontinence, so she needs help with the brief. I am strong enough to transfer her to the chair/commode/bed so I’ve been doing fine. The plan was to hire someone to care for her at my place while I’m at work which is affordable because she won’t have any bills at my house. The situation is strange and confusing.
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Let the family "struggle" on their own, 100%. They are "addicted to suffering" so have at it! "They" are more than one person and can hire different caregivers who CAN care for mother. Plus, mother doesn't want to move. You have plenty of reasons to go back home w/o mother and resume your life now.

Good luck.
Helpful Answer (17)
Reply to lealonnie1
BurntCaregiver Feb 12, 2024
Well said, lealonnie.
Please, oh please don't try to be the end-all, be-all for your mom.

Get her into an appropriate facility ASAP. You will kill yourself with the care required to keep one aging sick person on their feet.
I'm really hoping my year long rant/post is helping somebody out there to see the writing on the wall.

Even my reluctant DH admitted his mom should have been tucked away in this facility 5 years ago--the last year being a slice of hell for many people involved.
Helpful Answer (16)
Reply to Midkid58

When I see what’s ahead for some of us, paralysis, unable to stand, incontinence, forever utis and what the family has to go through, I think some European countries have the right idea. To be able to decide when to end it is a comforting thought.
Helpful Answer (15)
Reply to Annanell
KNance72 Feb 17, 2024
I do too .
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I don’t think you’ll find more than a single hand full of examples where people in this forum are glad they took their parent in. You have a life you want to get back to … but if you move her in, you will not be going back to it. You’ll become the 24/7 at home caretaker unless you’re planning that your husband also do some of the hands on care. (And why do that to him?). I wouldn’t do it. There’s no upside for you or her.
Helpful Answer (14)
Reply to Lmkcbz

Apply for Medicaid, she is way beyond Assisted Living, Do Not take her to your home, you do not understand what you will be getting into.

Listen to these people here, we have heard the same fantasy ideas before, it does not work,

Sell off everything you can, get her in a facility self pay and apply for Medicaid when her money is about gone.
Helpful Answer (13)
Reply to MeDolly
Gabbyfla Feb 17, 2024
applying to Medicaid is not possible if you are in the Loophole of earning above the income required, Ran into this with my sister who eventually ended up in hospice care. Her income wa too high for medicaid and her income was not high enough for nursing home care. We were caught in a terrible grey area where they said she had to go home and when she had spent several thousand dollars a month on medical care the rest would be paid for...She could not live alone as she was dying of lung cancer... and could not walk on her own. This care can run $250 to $300 a day or over $100,000 a year, all because she was not poor enough to qualify for medicare or medigap. One reason I prefer socialized medicine.. It works well in canada and Australia and other countries.. This is a very sad situation,,,,,,
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