Mom had a stroke a little over a year ago. She never fully recovered, and is partially paralyzed. Her speech is impaired, but her mind is completely there. I’m her POA and have been handling everything since her stroke. She doesn’t really like the nursing home, and I’ve called a couple other places to transfer her (with better reviews, and tours just had better overall vibes), but hospital discharges and in-house transfers take priority… it’s been about 9 months of trying and still have not had any bed availability.
I’ve been in touch with an insurance case manager and started the process of a nursing home waiver, to bring her home. The waiver has been approved, and now we’re waiting on a ramp to be installed. Mom has been approved for 25-26 hours per week of home health too, so I will continue to work during those hours.
My fear (and my husbands fear) is we bring her home and she’s either unhappy here, too, or the added responsibility is just too much for us.
If we bring her home, is there a waiting period to send her to a nursing home? Is there anything I need to keep in mind regarding her social security income when she comes home with us?
Why does she need to be at your home, to be in bed watching TV all day? Why are you so concerned about her socializing? Does she beg you to spend time entertaining her? Does she get upset about not having a constant flow of relatives coming to visit? Has she begged and cried to you she wants you to take her to your home to live?
Sounds like you want the "convenience" of her staying at your home, so you can get back to your regular life. Seriously? Kiss your regular life GOODBYE. Your house will become a crowded nursing home, with wheelchair, Hoyer, hospital bed, and a ramp outside. You will never have peace back, privacy, date nights with your husband, dinner guests, or any time for yourself....for years.
You mention if it doesn't work out, what to do next. Why move her in, get burned out in 6 months (or less) and try to move her out somewhere else? That's a lot of stress and disruption in everyone's lives, including Mom. To save some money?
BTW, she doesn't have bedsores because she is turned every 2 hours by the staff at the NH. How many years of medical experience with disabled people do you have? The safest thing would be keep trying to find a facility that will better meet her needs.
Don't you miss your own family? You need to come home alone and focus on them...and count your blessings.
You are talking yourself into this. You don’t 100% think your husband is on board. You keep telling yourself you can handle this. You can’t,
There is a reason people are telling you to not do this. Hundreds of people on this board thought they could do it themselves too. Now they are mom 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.
-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?
- If you are no longer able to care for her, how will you get her back 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.
You’re just not getting the answers you wanted. People are giving facts that you don’t want to accept.
Again, I asked 2 questions, and neither of those were regarding everyones OPINIONS on bringing her home. Thank you though.
I took care of my mother for over a decade in my home and it wore me out. It is physically and emotionally draining.
I wish you the very best no matter what you decide.
It is the most humane, compassionate, and loving thing to do. Based on my experience and observations, most nursing homes are what I refer to as "warehouses for the elderly." And you've nailed a lot of what I saw in a comment earlier - there is no 24/7 care, emotionally residents are neglected, and call lights can stay on for long-long times. At least in your home she will, presumably, get better food, you will manage her care, and she will get more attention and personal social interaction. (And IF it doesn't work out, there shouldn't be an atypical wait for getting her into a "facility." It just comes down to whether there are beds or not, and they have the services she needs.)
If you have a smart TV in her room, there are tons of good things she can watch and listen to (audio books, podcasts, religious services). You can get an Amazon Echo to set up routines to play her music, podcasts, news, weather reports and audiobooks on a schedule.
I live in Florida, and there is a non-profit that lends equipment. Maybe there is something in your area like that too - even some hospitals lend equipment. Alternatively, there is second hand equipment. Even nice hospital beds can be purchased second hand. There are also senior centers that will pick up people in wheelchairs and take them to activities. If available, that would, of course, depend on whether she can sit for a few hours.
Some things to look at - in no particular order:
U Turner --> https://www.theuturner.com/
Bedsore Rescue Pillows --> https://jewellnursingsolutions.com/about-bedsore-rescue-positioning-cushions-and-pillow/
Medical Sheepskins --> https://www.sheepskinshop.com/collections/medical-sheepskin-products
Carewell medical supplies --> Carewell.com
..... Wellness Briefs
..... Remedy Treat - Antifungal powder
..... Lantiseptic
Check out agencies and non-profits in your area for added support, including caregiver support.
It will obviously be a big adjustment, so plan on it taking a month or two to iron out the kinks and get into a routine. I am sure if you pose specific questions on this forum you'll get some good feedback. And feel free to contact me directly if you want to talk.
Are you OK with mom just laying in bed all day with minimal human interaction in your home? It doesn't sound like much quality of life for her to be so isolated. I would think you would want to socialize her and bring her into common areas with the family.
Do a practice run in your home with you or your husband pretending to be mom and the other person having to do everything for the weekend. You won't have a hoyer lift but depends will work since you will have to change and clean mom at least 5 or 6 times a day regardless of using the Hoyer lift. Do all.the bathing of said person with no help from them. Bring all meals, do the extra laundry, all the things you will be doing for mom. then imagine this going on for 5 or 10 or more years. I am exhausted just thinking about it.
She doesn’t socialize now, other than the aides that come and go from her room, a handful of times a day. My sister has washed her hands of all of it. My aunt and uncle are in the next town and visit her frequently: I’ve already told them they can come over to visit here. She’ll have more human interaction in my house, versus what she has at the NH - if I’m not in her room, I’ll at least be in talkable distance being in the same house, as will my husband and son. She’ll have interaction during meals too, even if she chooses to stay in her room/bed which will be right next to the dining room.
What are you going to do for the other 140 or so hours when help isn’t there?
1. Is your husband completely...totally...100% on board with you bringing your mom home?
All you have to do is read a few of the questions that some post where the spouse was not on board with the caregiving and moving someone in.
2. Do you REALLY truly know what it will take to care for your mom?
25- 26 hours a week is the tip of the iceberg. What happens the other 143 hours? What happens when the caregiver that is supposed to come does not show up?
3. There is a real good chance mom will not be happy in your home.
Has she seen a doctor of depression, and maybe anger, anxiety? I would think these are all emotions one would have after a devastating stroke. (Or any medical condition that changes their life)
4. And as you mention what are your options if caring for mom is more than you can manage? How long will it take to find her a facility that will accept her?
5. Is your home, other than waiting for a ramp, accessible for her? Will she be able to use a wheelchair? Will you be able to use a Hoyer Lift? Is there room for a Hospital bed? Is there a bathroom that she will be able to use that has a roll in shower or at least a bedroom that you will be able to get equipment into so that she can safely be bathed? (And not you and your husbands bedroom or bathroom that is YOUR space and you will both need that)
I think the safest thing to do would be keep trying to find a facility that will better meet her needs.
As I said in my last reply, She rarely gets out of bed at the nursing home. The aides make their rounds, but for the most part mom is in her bed watching tv. She gets meds at 7a and 7p. She gets a bath 3x a week. They use the hoyer (which we’d have as well) IF she wants to get into her wheelchair. So while there’s 140ish other hours, mom doesn’t require someone to look after her 24/7. She sits in her room for hours on end, without needing anyone or anything. And quite frankly, she’s had her call light on for over an hour at times and nobody has stopped in. We’ve gotten Ombudsman involved, I’m aware she could get sick, or need changed an extra handful of times.
The other facility I want her in has already looked at her case file and said they can handle her care, it’s a matter of getting a bed for a ‘transfer’ that seems to be the time issue. Quite frustrating.
Yes, everything is accessible. She’ll have a first floor living space and when she wants to be in her chair she’ll be able to navigate the entire first floor.