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?
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.
What are you going to do for the other 140 or so hours when help isn’t there?
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.
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.
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.
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.
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.
I want to go home.
I want to go home.
My Mother got home.
I can't walk.
I can't walk.
I can't walk..
She learnt to walk again.
I want the stroke to go away.
😪
Are you, and your husband willing to give up your privacy? That's the biggest issue for me.
Strokes have this tendency to cause hidden damage, like vascular dementia. Dementia of any sort is a real game changer when it comes to trying to do caregiving at home.
You say you will still be able to work? How is mom going to get seen by her doctors, psychiatrist, audiologist, podiatrist, hairdresser? All of those in house services now need to be scheduled and mom transported. And toileting attended to while out.
In theory she should be repositioned every 2 hours.
And oddly enough that is about how often you should be checking her briefs (aka "diapers") so that she does not remain in soiled clothing. (that can cause skin breakdown as well)
Also keep in mind that while in the facility she probably has 2 aides that will care for her and at home there will most likely be just 1. Is there a need for 2 caregivers? Often if you get a caregiver from an agency if they require equipment for transfer the agency will want 2 caregivers for the safety of the caregiver as well as the safety of the patient/client. If this is the case your 25 to 26 hours a week has just been cut to 12 or 13 hours.
It may sound like I am discouraging you from doing this. I guess in a way I am.
Caregiving 24/7/365 is not easy. In most cases it is not fun. It is exhausting mentally, physically and emotionally. It is stressful on ALL your relationships. You will be giving up "date nights", outings with friends, the option to just go to a movie or anywhere unless you arrange a caregiver. (You can not leave mom alone, if she is unable to get out of the house in an emergency or call 911 if she needed help)
She might not like being in a nursing home but it is the best place for her. Not liking being there is not a good enough reason for her to leave. She is receiving better care there by people who are trained. No matter what you think, you can't provide this level of care at home with limited resources.
The fact she does not have bed sores speaks volumes about the level of care she is receiving at her facility. She is receiving decent care. She is better off there.
I am sorry she is lingering in such a diminished state and still has capacity. This is a very sad situation for both her and for you helplessly watching it.
You say you will work when her aides are caring for her, do you work from home? If not, you may find yourself unemployed. Aides do not always show up and even before younger people quit working in this field, it was not always possible to have a replacement sent, so you would be it to fill the hours. Meaning last minute call in to your employer.
If she is going to pay you to live in your home, and she should, do it as share of costs, not rent. She pays 1/4 of ALL the household expenses, including increased homeowners insurance to insure that you guys do not have problems if an aid gets injured in your home. If your utilities double or whatever, she pays extra for that increase. It should not cost your family to do this and her building a savings account all the while. KEEP meticulous records. You can write what her share is right on the bills and the check # it was paid by, get a system down that easily accounts for how her SS check was used. Medicaid will require a new application and that means a new look back, in the event this doesn't work out. You do not want to scramble trying to figure it out during a crisis placement, God forbid.
She buys ALL of her stuff, depends, chucks, clothing, meds; prescription and over the counter, special treats, etc.
I pray for all of you that this works out and you all find joy, peace and happiness. I, also, pray that if it doesn't work out, you guys can see it before everyone is traumatized and burnt to a crisp.
May The Lord touch this situation and all of you.
My mother had Parkinson’s disease. I had no idea how this disease would progress. Please educate yourself on all of her health needs now and what she will require later on.
In other words, know ahead of time what you are going to be facing, before making any major decisions.
Needs will change in the person that you are caring for. The challenge of being an at home caregiver will become greater.
Also realize that your life changes too. With caregiving, you will find that your stress levels will increase.
When there is stress overload, a caregiver will experience health issues of their own. Not to mention, the anxiety of dealing with everything on your own.
Too often, we see caregivers placing their own needs on the back burner. I did this and trust me, sooner or later it will catch up with you.
OP has been warned.
Of course, providing care is demanding, but each person/family/etc. needs to weight the pros and cons. There is more and more technology that can help lower the burden, but there will always be "work."
Care at home by loving people is personalized and managed by loved ones. Care in most facilities is impersonal and managed by profiteers. That is not to disparage the people who actually provide care - but they have a lot to do, and limited time. Care is checklist/task based. But owners and managers will typically be looking more at costs than what is truly adequate care of a human.
We as members of this forum though, can show the importance of being a strong advocate for a family member who is in a facility.
Just because a family member is in a facility doesn’t mean that they are forgotten by their children.
Often times, strong advocates can get more help by placing their family members in a facility, than they can do on their own at home.
My uncle got sepsis for a UTI at home and nearly died. When he finally agreed to being placed in a facility, he was well cared for and lived to be 96 years old.
As for me, I DID care for my mother at home for 14 years! I can’t honestly say that she wouldn’t have received good care from a facility. I sacrificed too much.
My mother was sorry that I gave up so much of my life for her. She told me this herself as she was lying bed bound in her ‘end of life’ hospice care home where the staff provided excellent care for her.
This site is my lifeline. It helps me get through what had been the most miserable challenging time in my life. I am grateful for the support I receive here. No one else in my life gets how soul sucking this situation is.
I travel from California to NYC every other month for one month stretches of time to ease my sister’s load. Either my sister or I visit our parents every single day at the NH. They are not abandoned by any stretch of the imagination. We simply could no longer do the work involved and knew enough when to stop.
.
For those that had meaningful, helpful and polite responses, thank you. For those that don’t think I have my mom’s best interests at heart, you can think as you wish. 🫡
We wish you the very best no matter what you decide.
People on a forum will express various views in different manners. Look at the context of the overall discussion.
I believe that everyone supports you and realizes that you are trying to find the best fit for your family.
No one here has the right to tell you what to do. It’s your choice and we support you no matter what you choose to do.
We are only informing you of all the possibilities of this type of arrangement.
Take it from me and many others who have been a caregiver for extended periods of time and are speaking from firsthand experiences.
Caregiving at home is possible until it is no longer feasible for the patient and the provider.
I was told by my mother’s doctors that I provided excellent care for her but I paid a big price for it. Are you willing to sacrifice everything, because that’s where it will end up?
People will only get worse as time goes by. They will never improve. You can’t turn back time.
It’s an act of love and responsibility for caregivers to let go and allow others to care for their family members.
I would not place myself or my family member in this situation again. I was a bit naive and pushed myself. Mom told me herself when she was placed in her ‘end of life’ hospice care home that she was sorry that I sacrificed so much of my life for her.
Placing them allows them not to feel like they are a burden on their family members.
Mom was relieved to know that she was being cared for around the clock and that her children could visit as her children instead of being her caregivers. Oh, she thanked me a million times for caring for her but she felt uncomfortable being a burden on me.
As for doing home care - it can be done in some situations. Many posters on here have done it as can be read about. Keep in mind there are 2 broad scenarios of home care, each with various pluses and minuses :
1) bring the elderly LO into your house
2) having the elderly LO stay in their house with caregiving occurring there (whether thats family members and/or paid caregivers).
We all must consider our individual LO's scenarios. I made my parents decisions, after much thought about their individual situations, discussion with family members and friends, and research, including this forum.
Before you move mom into your home, you need to learn how to take care of her. She will require a lot more than you expect, and it will be a life-changing experience for you. Chances are you won't be the same person after the psychological challenges that accompany caregiving.
In your home, check the doors mom will need to use. I had to remove entirely the 28" doors in the home (by myself, and they were heavy wood). Her wheelchair needs to be able to pass through your doors. Is there a ledge or sill under the door? If so, you will be lifting the chair up and over the ledges for her. It's hard on the helper's back. Her wheelchair may have to pivot from the hall to go through the door. Is there enough room? Is the toilet the right height for transfer from her wheelchair? Can she do that on her own? Are you able to install a special toilet seat that is the right height and with handles to help her transfer? I had to do this myself, and it wasn't too difficult. How about the counter height in the bathroom? Can she reach the faucet from her wheelchair? Fill a glass? Put toothpaste on her brush and use it? Can she spit into the basin? Wash her face? Do you know what a shower transfer chair is? Can you order and put it together and install it in the shower or tub? Is there a handheld shower head where she'll be bathed? It's absolutely necessary, so if not, order from Amazon and install it yourself - it's not hard to do. Learn how to transfer her from wheelchair to shower transfer chair to tub, before you actually have to do it. You'll need training for the Hoyer lift, and don't let them tell you that using it is a one-person job. It can be, but unless you've had experience, you should have help, at least at first. Get a hospital bed table, it fits over the bed and she can eat and be groomed there, and it's easily wheeled into a corner if not needed. Get a baby monitor so you can listen to her in her room 24/7. It may disturb your sleep, but this is part of having mom at home. Get training in moving mom from wheelchair to car and back again. The training focuses on what you must do when a patient has little or no use of one side of her body, but they don't really tell you how to protect yourself as you perform the task. Ask about that. Be aware that they will probably try to insist that you use a 45 lb. wheelchair. They will show you how to fold it, but they probably won't show you how to put it in the trunk in a way that protects you - ask about that. Be aware that wheelchairs come in different weights; get a 25 lb. "companion chair" for car trips. There's a lot more, too, but you can handle things as they come up.
Please understand that elders whose health is failing are usually unhappy. They express that in different ways. They protect themselves psychologically by thinking that if they could just get out of where they are now, they'd be happy. Move them, and they are still unhappy.
In the case of stroke, there are often post-stroke problems for months and years afterward, such as painful contracture of muscles. Be prepared for that and for the treatments that may be suggested. Mom's cognition may decline. She may become angry and uncooperative. For help, consider joining a stroke support group. You and mom can attend meetings and activities together.
I wish you the best of luck.
So for the OP, I would say this would be a big factor to consider. Will you have multiple other people to help in the process in various ways ? (whether family, friends, paid caregivers)? This may be a key factor and decision point
You are already concerned that it will be too much . I would take that as a must listen to message from my gut and not bring her home .
But that’s me.
I wish you luck .
You have asked for advice. I have read the entire thread, and no comments sound rude. I have not read anyone suggesting that you don’t “have your mom’s best interests at heart”. Sure, some respondents are ‘bitter’, and the reasons for that are part of their advice. Using ‘old ladies’ as you did sounds genuinely rude, and I hope that’s not your attitude to your mother. You don’t have to take any notice of any comments that you don’t like.
If you go ahead and your experience is very different from most other peoples, I hope you come back and tell us your secrets for success.
2. After she passed, I started helping my dad. After a while, I couldn't do it anymore and he went to a board and care. After some months, I decided to take him home. He had a caregiver, but I was still doing a lot for him. Plus, he was a very difficult person, screaming and wanting different things to clutter up the place. I decided to place him again.
You express this fear and get comments supporting that fear, from folks who have "been there, done that", and comments from the "facilty bashers" who urge you to take mom home and leave your blood on the floor in the process.
So you accuse us of being "bitter old ladies" leaving comments wishing you good luck that are "outright rude". As if we've got nothing better to do than spend our time sharing our experiences with you on this forum, and as if we're paid by Agingcare to recommend managed care! Laughable, really. You're looking a gift horse in the mouth, is what you're doing, my friend.
Some people read between the lines and see ulterior motives buried in the Truth. They have to learn things the Hard Way, not through advice given by exhausted, burned out caregivers who have gone before you who are trying to SPARE you what they've suffered themselves. Wishing you "good luck" is a prayer for success, nothing more and nothing less.
If you fail at this endeavor, you'll come back and say you now understand what we were trying to tell you.
If you succeed at this endeavor, you'll come back and tell the managed care bashers they were SO right and home care rocks and you've never been happier. That turning your house into a nursing home was The Right Decsision.
There's only ONE way to find out, and that's to do it.
How ever this situation works out, best of luck to you.
I have been on this forum long enough to know that the vast majority of people on this forum are trying to be helpful.
When a person posts a question on a public forum they will receive a variety of responses. Please don’t take all of the comments personally.
You have the right to agree or disagree with the opinions that are voiced. Just like members of a forum have the right to express their opinions.
Some people are direct, others are going to be more reserved when answering questions. Neither is a ‘right or wrong’ approach when responding to a question.
Sometimes, people make incorrect assumptions. No one is a mind reader and sometimes the particular circumstances aren’t explained clearly enough.
We all have our own personalities, our own personal reasons and circumstances for feeling as we do. I feel it’s important to look at differing views so that we can learn from each other.
Of course, it’s important to be respectful of one another even when we disagree.
Occasionally, people will make an inappropriate comment. Don’t allow those statements to distract you from gaining insight from the forum as a whole.
Most of us who are posting have asked questions ourselves. I can say that I am grateful for the help that I received when I was a caregiver for my mom.
There may be answers that won’t be useful in your situation. Just disregard those.
Please don’t fault anyone for trying to prevent possible problems that could arise from bringing your mom into your home.
Caregiving is full of challenging situations. Wishing you and your family well.