I am new to this group and looking for resources as I am now faced with a decision about whether to move my mother into my home to care for her--which seems overwhelming, or to leave her in a skill nursing facility which she says she hates and would rather die than stay at.
My mother has declining mobility due to a very SLOW progressing cancer, and she has remained on hospice in her own apartment far longer than anyone thought possible. But after increased pain and a recent fall she can no longer walk or transfer herself, which means she can't use the toilet and now needs 24 hour care. She's been in skilled nursing less than a week and is currently on a catheter and using a bedpan. She also has a bedsore to contend with and has difficulty getting comfortable in more than one position. On the positive side she is cognitively intact, retains some upper body strength to adjust her position, and she finds great delight in simple things that she can still do--crafts, writing stories, eating good food, having interesting conversations, playing with her grandkids, and watching movies. Personality-wise she and I have had a great relationship over the past few years, but that has not always been the case, and she can be pretty critical and demanding of others. I have worked hard to establish good boundaries with her and I don't want to lose that.
I provide all these details because I am trying to get my head around what it would actually be like to care for her at home. My husband and I had previously discussed that inability to toilet herself would be the red line after which skilled nursing was the only option, but she is so unhappy there that I find myself reconsidering. But I am struggling to envision what this would be like or how stressful it might actually be. I know there is no right answer (it really feels like two very bad options), and no one can tell me what I should do, but I am interested in hearing from others who have been in this situation. What has it been like to care for a bed-ridden parent? Would you do things differently if you had it to do over? Is it crazy to consider bringing her home?
The logistics of bringing her home would be challenging with regard to space, and would certainly impact my husband and 2 kids. On the plus side, my mother could resume hospice care and a 40 hour per week aid who would handle bathing and other daytime activities while we are work. My girls love her and I imagine sharing meals and spending quality time with her in a loving environment surrounded by the people and things she cares about. But then I think about how much I hate changing the cat's litter box, and I think I am deluding myself.
So, any feedback on the realities of this kind of care at home? I do not want to bring her home only to turn around a week later to take her back to the facility once I realize how hard it really is.
I now have a 95 yr old dad that was living by himself up until a month ago and now needs Care 24 7.
He will be staying in his home whole I get Caregivers to Care for him as that is what he wants
I say bring you9 mom home. So what if you have to wipe her behind every day. She did the same for you at one time.
I think our loved ones should be happy during their last days on earth.
So if you can do it and it seems you can especially with Hospice help. I say go for it. In the end, you won't have any regrets.
Please don’t take on this overwhelming responsibility. It is really for the professionals.
Anyway, my mother (Big Mima) is 92 yo w dementia & I’m caregiving at home with her...she was in a SNF for 10 months after a fall, emergency surgery & rehab. She didn’t progress with the physical therapy & is now immobile. We use a lift machine. She has recliner wheelchair. She now has this new thing that she calls me ugly & homely. She gets combative physically & verbally. If she was at SNF & behaved this way, then they would send her to psych ward for medication adjustment. I’m burnt 🥵 out even though I get a private pay caregiver for 43 hours/week. Next week I’m gonna go to Yankee game while Aide is here all day. I’ll have a beer 🍺 & a pretzel 🥨 . Senior day Wednesday reduced ticket $$$. ..hugs 🤗hugs🤗
"...then I think about how much I hate changing the cat's litter box..."
Initially I misread it and thought the concern was bringing your mom's cat in and having to clean up after it, but thought cat??? NH??? No way. I came back to check and sure enough, you were just comparing to cleaning up after mom!
Anyway... There is not much worse than a litter box that needs to be "changed" and "cleaned." It isn't so much the daily scooping, but the dregs that end up in there - it REEKS! I really detested all those litters with crystals too - I could smell THAT on my cat, despite the litter box being 2 floors down AND it did not resolve the "dregs." I was also concerned about what the cats were ingesting when they lick themselves - if I can smell it on him, then he/they are ingesting these chemicals!!!
I tried so many kinds so that I could get rid of that chemical smell/ingesting until I found one that works great. I actually avoided this one because of the name (usually anything that promotes itself as the "Best" isn't!) Once I did try it, I was sold! It is corn-based, clumps, is bio-degradable and flush-able. The BEST part is there are no "dregs". You scoop and dispose of the clumps and solid waste as usual and add more litter as needed. Once in a while I may need to wash a pan (I also have a LOT of cats, sometimes they get a little on the sides), but for the most part, the pan stays clean and you won't have to smell those "dregs!" Even when I do need to clean the pan, I dump the contents into another litter pan and the pan is DRY - no DREGS!!!
Personally I don't flush the litter because I have a septic system (it does indicate septic safe, but I have no idea how well maintained this system was before I bought it and with so many cats, no way.) I have several acres of land, so I collect the scooped out stuff in buckets and pitch them outside away from the house, not all in the same place - within days or a good rainstorm, no evidence!
I really cannot say enough about this litter. Some people don't like the smell of it. Some say it tracks or is dusty. I find smelling corn MUCH better than stale urine collecting at the bottom of the pan! I am SUPER relieved not to have to smell that urine or empty/scrub the pans!!! I also don't have to worry about them ingesting chemicals. As far as dust or tracking, I have yet to find ANY litter that doesn't track or cause some dust. I consider it part of having cats share my space, just like kitty dust balls.
You mentioned a bedsore; that in itself is a lot to care for
She has a catheter now and sounds like she definitely needs Nursing care. Frame it as too soon to talk about and that she is where she is because she is sick and her doctor wants her there. Talk up going to PT, anything to provide reasons for her to agree with you.
Try not to entertain her complaints and requests to go home. Just move onto another conversation. During your interactions be realistic and present it as the SNF/Rehab what is best for her care right now.
Realistically, while your intentions are very good, you can’t provide her with the care she needs, which sounds complex. Air mattresses for a hospital bed that you will need to arrange to be sent to your home after chasing down a provider willing to write the orders. Woundcare. Skincare and turning every 2 hours (even on an alternating pressure mattress). Incontinence care.
It will become a 24/7 job for you & your husband.
Please reconsider about taking her back home. See her often but not constantly. It’s very hard to leave her, I know, but she is in a SNF because she needs the care.
Divert those conversations & focus on the positive when you do see her. Explain gently that you physically can’t do the level of care alone that an entire staff provides for her now & how fortunate it is that she is there, etc. Anything to begin to prep her that she will need to stay at the SNF.
I went through this too. It was the hardest decision I had to make. Maintain your focus on the practical vs roll of the dice. Unless your mother has resources to private pay CG at home 24/7.
Best wishes for you !
There were people in and out of my home all the time, delivering hospital beds, commodes and a hoyer. I will say that once on hospice, the nightmare of physical therapists giving unrealistic prognoses was thankfully over. My mom was 92 and not going to walk again. Once hospice came on board it was a relief and much easier than the physical therapists and rehab that seemed to tell us just what they thought we wanted to hear.
Most of the time the care was up to me though she had a great nurse and bath aides a couple times a week. My day began at 4 am...checked on mom, and when she was still sleeping I had about 2 hours of computer time, reading, coffee. Then once I entered her room at 6 am to empty the catheter bag, manage medications, give insulin shots, clean and tend the wound, clean mom, bring the breakfast tray....I was pretty much in and out of her room until bedtime. Once I had her settled in for the night, I would fall into bed exhausted and watch a little TV. Because she had a few bouts of delirium from UTI's, I was always listening for her to hear if she was talking. Several times she had hallucinations and would yell at night, once she said she saw a man at her window, another time she said the doorbell rang at 3 am, and though it didn't happen it was scary to hear. Another time she said she saw a woman's head spinning around on top of her TV. I kept a small light on this helped with the hallucinations at night. I was always listening for her all those nights. This went on for 7 months, and during that time my husband had a heart procedure, and I had an eye operation for a spontaneous retinal detachment. I wonder if stress caused these things to happen?
On the positive side, my mom at least had privacy and her own quiet bedroom. In the nursing homes TV's blast all night, which is horrible. I set up a CD player and played classical music and saxaphone jazz for her. She had a TV. I set up photos of her parents, my dad, her brothers and sisters on the dresser where she could easily see them. I bought fresh flowers each week for her room, and put a small vase of flowers on her dinner tray each day.
It was the hardest time of my life. I still have anger issues from this. The people that were incompetent, or just not there for even a cup of coffee with me.
Then just when I was starting to get my footing back and figure out that I had my own life a year after my mom passed on,... my husband's sister died leaving us to care for his 89 yr. old mom. She isn't fully dependent on us, but I fear one more run of this, or getting ill and never getting life back.
Are you REALLY prepared to deal with poop and pee every where for the rest of her life? Are you prepared to get up at 3 am to wipe her butt? Are you prepared to give up your personal and social life for the next however-many-months-or-years she will be alive? That's the reality of how it will be for you and your husband.
It does not matter if your mother is "unhappy" at the SNF. You and your husband deserve to have a "life" without taking care of a sick, elderly person 24/7.
There was really no chance of a long, lingering illness lasting months or years. Had that been the case, and had she been bedridden, incontinent, and needing 24/7 support over an extended period of time, I would not have been able or willing to provide that. I would not encourage or expect anyone else to do that either.
A catheter will shorten her life due to urinary tract infections (poop will go into her bladder via the tube). Make no mistake everytime she has a bowel movement it will infect her bladder. Never use a catheter unless they are actively dying for comfort, or there is a medical reason like obstruction.
If not, if you can stand managing her bowels, changing her poo in bed and a lot of urine..and cleaning her privates due to poop going in private places then care for her at home. If not you are better off putting her in a nursing home. I don't know how long she has left, but if she is already on Medicaid you have no worries. If not, see an eldercare attorney to get her Medicaid prepared.
If you can't stand the cat's litter box..you never lived until you changed human poop in bed and it keeps coming out copiously...and forget working for a living. That's out.
This decision should be made by the family and people and agencies who know them well.
Each case is different depending on who the family members are, how much outside help they can afford, and who the patient is.
Each individual situation needs a unique set of guidelines and this does not always depend on material details such as dealing with a catheter or on what another family experienced.
If you bring her home, you should enlist qualified outside help and figure out what alterations need to be done in your home for her.
Know that some agencies and individuals are adamant about protecting their rights and have no real idea what you're going through. This means they demand help with transfers, even when your loved one is a featherweight, so you;re actually being cranked out of bed when you're exhausted, and they think you can provide round-the-clock care by yourself without having a mental breakdown. This can also mean that they look narrowly at the welfare of the patient and do not think about the family members who can't possibly do 24-hour care by themselves.
If it was me, I would figure out if I can afford the alterations to make my home accessible to the patient, afford outside help, and know how much work and stress I can handle.
Some families are resilient enough to get up several times a night and handle the same level of care as a facility offers. If this family can figure out how to provide that and afford it, they should go ahead and I can't make a decision for them until I know them.
your social life gone ,visitors gone , trips to stores gone,& even if kids say they will help they do not know what they are volunteering for....when they see what the truth behind getting old and dyeing process the kids RUN because it frightens them dirty diapers it will be ALL YOU!! beleive me !! And trips to toilet are NOT EASY especially in the early hours and middle of night when you are half asleep....and this can go on & on & on .....probably best to try for a weekend visit 1st and you do all then you will know in your heart if you are ready for this ,also consider the thought of your kids seeing this needy side of their grandma that is maybe not so good either but if you think you can and your family can ....TEST YOURSELF FOR 1 WHOLE WEEKEND 1ST
No matter how good your relationship is with your mom, the role reversal will take a toll on you, your family life, your relationship. You'd be surprised how "caring" turns into "compassion fatigue" in a blink of an eye.
SNF aren't a 5-star hotel...but they have what they need in order to keep them safe. There comes a point in life where what you need trumps what you want! Don't let guilt cloud your judgement. You got this...just be there for her, be her advocate, and just love her...but keep your sanity in check!
I understand your reluctance to deal with toileting issues. Hospice can help come up with creative solutions and may be able to take over this responsibility.
Don’t underestimate the disruption you will experience nor the pure joy and satisfaction after it is done. Kind of like how my wife used to describe childbirth 😁 You will not regret having her back with you but it will not be easy. Just rewarding! Good luck!
I will say that those who mention dementia are really playing in a different ball-park. Many of them are the nay-sayers. Given that your mother has physical needs but cognitively is okay makes a big difference. Dementia with or without physical issues is a big game changer. Our mother developed dementia, and at the time we decided she needed to be someplace safe she was still pretty much self-caring (aka dressing, walking, toileting - there were safety issues with her and none of us were living close enough to check on her often enough except by phone and with hearing loss/forgetting to put new battery in hearing aid, even THAT was a challenge!!) Given her demeanor (even before dementia), weight and dementia, I said no way. She is not in SNF, just MC at this point. My house would be a poor choice for her as it requires a full flight of stairs to get in, has no easy access tub/shower and is still in need of many repairs (5 years, on hold for the last few!) Brothers are clueless, one not local so we wouldn't be able to help him and the other still working with no space for her. We tried in-home aides and she refused to let them in.
She may be bed-ridden soon too. She had a couple of minor falls, no injury, but is refusing to walk or work with OT/PT. Sits in transport chair and lets them push her or scoots it along with her feet. If she ends up bed-ridden, she may need SNF sooner rather than later - no way would I consider bringing her home, for all the reasons listed, especially the dementia, stairs and weight.
As others have said, a short stint so far isn't really enough to decide how well she is adjusting. I would be concerned that she is getting bedsores after just a week or so. One thing you could do is perhaps visit surreptitiously and watch how her day goes? Many people, as others have noted, will complain about a place they are in and say how much they hate it and yet be having a ball when you are not around! It isn't always the case, but since it has only been a short time, getting a better feel through your own observation and perhaps chatting with some non-admin staff, other residents or visitors might give you a better idea how things are progressing.
Once she is better settled in the SNF and has been there a while, perhaps bringing her home for a day/overnight or a weekend might give you a better feel for what you might be getting into should you bring her home. This would give you a little time to see if space could be set up for her. If you find it is too much work and disruption at home, perhaps there are other places besides SNF that you could explore? Maybe just a weekend day visit so she can get out and see/interact with the family on a regular basis?
With 40 hr/week help (or more) and hospice it could be workable, but only you can tell for sure. Logistics could be an issue, as we don't know what space is available or what access she has in/out and for toileting/bathing. If she has limited income, Medicaid can pay for some/more in-home health aides and perhaps between them and hospice have medical equipment she might need.
There really is a lot to consider. Maybe give her a little more time in the facility, monitor her bedsores and in the meantime make a list of pros/cons about bringing her home and see which one outweighs the other.
I honestly think a lot of the decision somewhat depends on how close your relationship is, but more especially a hard honest look at what you can and cannot handle. Toileting issues are a primary sticking point for most. Also, the total lack of privacy unless you are fortunate enough to have a home configured for multi generation living. I absolutely HATE that my FIL is in the family room, all day long and we have NO private time except when we go to bed. While some may think this is selfish, I strongly feel that retaining being a couple has to be considered. Sometimes our parent seem to forget we are still part of a “couple”, and not just their children, caregiver, roommate. If you are able to get at home care like you said, then that helps some, but does not take care of everything.
i know no one can tell you what to do, and I totally agree with you that you don’t want to rush in, bring her to your house and then turn around and take her back. I would really do some soul searching and have a very honest conversation with your hubs and children. Neither my husband nor myself knew what we were getting ourselves in to.
Wishing you the best, update when you can
Theres more to “living” with someone than just sleeping. There’s medication management, doctor visits, laundry (those bedsheets/clothes get filthy fast), bathing, meals, toileting issues, space....
when my father was with me for 4 months, he was in a makeshift bedroom in our living room. My kids could not have friends over, we needed to alter our routines when he was napping/sleeping, and his sheets needs to be changed daily.
a close friend has 24 hour care for both her parents in their own apartment, and the situation is NOT ideal. The aides don’t show up all the time, and they rarely do laundry or any cleaning. It’s a revolving door of caregivers.
Good luck with your difficult decision. Ultimately you need to decide what you feel comfortable with. If you’re already concerned about having her moving into your home, I would go with your gut, and seek professional placement in a SNF so you know she will be safe and comfortable.
Lots of good advice has already been given: consider ALL the logistics, because life would change dramatically. Take your time in deciding, because one week in nursing care is not enough to know how your mom will do in the longer term. Learn as much as you can about turning, changing, and bathing your mom, because health aides call out sick, can't get to your home in bad weather, etc. Is she on insulin? I was on call every day for blood sugar monitoring and insulin shots. We also had a wound: I had no problem with dressing changes, but for some, I could see it being difficult.
Had my mom continued to decline, we would have kept her at our home until her death, but in May, she "graduated" from hospice, so we decided after six months of caring for her that she would be better off at a good SNF, and that is where she is now. She is not very happy to be there, but she is well cared for, and I can finally be her daughter again, rather than her nurse. My husband and I are VERY confident that sending her there was the right decision for all of us.
One other point: the difference for us between having mom at our home on hospice and not having her on hospice was enormous. For us, without hospice, it was very difficult to find medical care that comes to the home, whereas on hospice, we had visits from the hospice nurse, which helped enormously.
Take it slowly, and consider each decision carefully. And best of luck to you and your mom. The fact that she still enjoys activities, food, and the company of others is huge and something to be very, very grateful for!
You can get equipment that will help you transfer her.
Learning to change a brief in bed does not take long it is a mater of doing it a few times. Will it always look "pretty" ..no Will it function properly..most of the time ;)
It is what you can manage.
You have to put your family first..yes mom is family but she raised you to leave her and your dad and start a family of your own. This is your priority. If you think the whole family can handle it knowing that space will be at a premium..and even more so with a hospital bed and other equipment that you will use. Is there carpet that will make moving a Hoyer difficult? or a Wheelchair hard to maneuver? This is a discussion to have with your family..a discussion to have with your mom and if she understand that this is a trial basis. Give it a few months to see how well things adjust and how you handle things once the kids are back at school and are not there to help during the day and you running them to their activities all the while caring for mom and keeping up a household. It can be daunting.
Do not forget the volunteers that Hospice can offer, use them as a time to get shopping done, some will help clean as well and if you don't want to leave mom with someone they can do the shopping and run some errands for you.
You didn't say how long she has been in the nursing home. If it's been only weeks or a month or two, she hasn't given it enough time. She is also only thinking of herself and doesn't realize what her being at home would entail for you to try to care for her. You will need 24 hour care if she is at your home, too. her
I think it would be a big mistake to bring her home. Also having her at a facility keeps her out of the hospital more than her being at home.
YOUR children would be greatly impacted by having a dying person around them, too. I still have a terrible picture in my mind from my own childhood. My grandmother had to care for my grandfather at home until he died.( This was in early 1960's). There were no facilities back in those days and no money. Caring for him darn near killed her too, and images of his wasted face and body haunt me to this day. Don't bring her into your home.
I cared for at my home, in my own bed where she died, as only the Master Bedroom was downstairs and she was bedridden.
Yes it was hard on myself and my husband but it was worth it for her to feel Safe and Loved and those were her exact words.
She lived 3 months.
I had No Help at all!
She needed 3 blood transfusions a week so she could live and couldn't be on Hospice if you're getting the transfusions.
The blood transfusions gave her extra time.
Neither one of us was ready for her to go but God had other plans.
Yes, I would do it all over again even longer.
I would not have had it any other way.
I miss her terribly and the only regret is the times I was not in her room to spend time with my husband.
She was so awesome and brave thru everything and so appreciative, even worrying about how I would feel with her dying in my bed. I told her I was sad but honored.
I believe if you love your mom and you want and can offer what's best for her. then you already know the answer.
Skilled Nusing Nursing Homes SUCK, especially when the patient is bed ridden.
They're just short staffed and you have to do what they say and some ca be very unfriendly and demeaning to your loved one.
You will have days that you have 2nd thoughts, but once your mom passes, you will NEVER Regret the decision of letting your mom die at home around the ones she loves instead of in a cold and unloving environment.
Im actually now in a situation with my 95 yr old Dad that wants to continue to live in his own home.
Im looking for a Live In, so he can do that as long as he can.
Only God knows if he will eventually pass in his own home, where he feels familiar and wants to be.
But I do know, there's a bed waiting for my Dad at my home, when he needs it.
And No, I'm not looking forward to it because it is a sad situation to watch a love one die.
I figure a parent was there to change and feed you for years, then if you can do the same when the tables have turned and they need you to help them, even telling them over and over again don't mess with the tube from the Catheter when they forget what it's doing there.
Prayers for your Mom, You and Your Family.
Let me add one more thing....it will certainly show your Children that even tho it isn't easy, it won't be forever and your lives will just be on hold for a little while, then they will get back to normal.
Your Mom on the other hand will love and appreciate and know the hardship that you are willing to do for her.
I guess you can tell I'm still working my way through this. What I want to say is taking care of a bed-ridden person is hard, hard, hard. The actual changing diapers, wiping bottoms, changing sheets & clothes, staying on top of bed sores, putting on cream to keep rashes under control, getting up in the middle of the night, racing home on your lunch hour to change, trying to assure your Mama she's not a burden - all of that and more is part of the picture. Your husband and children have to understand this will demand so much of you and are they willing to not have your attention. You have to understand you are not Super Woman and won't be able to do all things and be all things to everyone.
No matter what your decision, remember you're doing the best you can at this moment and what an honor & privilege to be there for your Mama whether it's at home or the facility. Hug her many times and tell her how much you love her. In the end those are the things that will help you through this journey no one ever asks to take. Hugs and my prayers are with you.
My mom did have an aide who came out three days a week,PT,and OT an hour each day.
Having to take care of my mom's every need 24/7 took it's toll at times but I did what was needed,because that is my mom.
You will get frustrated,overwhelmed,even angry at times so you need a outlet.I made sure that once a month I made time for me.
My mom had falls during that time and was readmitted to the hospital and SNF but in the end she passed from a pulmonary embolism.
I had to make the decision solely since my brother passed three years prior to take her off life support.One of the hardest decisions of my life even though that was her wish.
When she took her last breath I was there,so would I be her full time caregiver again.Yes,but you have to do what us best for you,your family,and your sanity.
Hope my story helped.