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.
Our loved ones in SNF often say they will “just die” if they have to stay in one. It’s their way of dumping on the guilt. They don’t consider what a burden they’re putting on us. We put our lives on hold, we are in limbo. We come out of this stressed, burned out and seldom with our own health intact. Our finances can also take a hit. Often, the fine relationship we had with them, and sometimes with our spouse as well, goes down the tubes.
Think very carefully before you pull her out.
My suggestion is for you to do your homework now and truly think about the logistics as you say. Yes, an aide service for you sounds like generous hours and that is great. Anything helps. But you'll have to rush home so relieve them of their shift. Then it comes back to you. Your time is not truly your own. Incidents and accidents happen. What happens if an aide does not show up for their shift?
Logistics to consider about homecare - cook dinner in organized fashion, who has time to grocery shop, keep the household running, is the house properly equipped to take care of your loved one? Your life needs to be compartmentalized when you take care of a loved one at home. It is awarding work, yes, but not easy.
On my personal case, I cared for Mom at home for a year and six months before she broke her hip. It was the longest and most draining six months of my life. Luckily, I feel like I am rebuilding my life slowly now. But my own foundation was crumbling while I was caring for her.
One specific suggestion for you - could you consider day respite services for your Mom for daytime hours? Then at night maybe the aides could do their eight hours in evenings to take off pressure off of you.
Best of luck to you.
The bedsore situation is also concerning to me. When there is a bedsore happening, the patient has to be turned every 2 hours through the night. Would you and husband be able to do this? My sister and I found it incredibly exhausting. Thankfully, my father's bedsore healed when we made some other changes and we were able to extend the times between turnings, etc. But definitely find out just what your mom's care is at night now and how/if you could continue it at home if the bedsore hadn't healed by the time she was discharged.
I think this sounds like too much.
We were lucky that there was a VA home nearby. He is a disabled veteran at almost 100% disability so having him there was very cost effective but then we had to deal with our own feelings about putting him there.
We placed him there in February and ever since then he's been telling us how unhappy he is, how he wants to come home....but come to find out he's been participating in activities and therapy. Beware of the guilt trip though, dad laid it on thick with me and it almost broke me but I had my eyes opened one day that I went to see him.
So think about your family, your relationships will suffer. Resentment may become an issue, but there will be resentment on both parts. Think about your family and how you (and them) are going to feel after just one month of caring for your mother - having to get up in the middle of the night to change bedding and clean her up, you will become exhausted after just a couple weeks.
I know I sound cynical and I apologize for this kind of straightforward talking, but I think no one actually realizes how hard it is and your relationship with your mother might suffer as well.
I wish you the best of luck.
I have been willingly and happily caring for her on and off for 30 years, through several life threatening incidents. I’ve slept at hospitals, screamed at doctors, and made 3am calls when medications weren’t refilled as promised. When my dad started failing, I added him to the familiar routine. However, after he passed and she became completely bedridden it required more time and care that I could give. Enough is enough.
You have no idea what you are in for if you bring her home. You will come to dread the text message beep on your cell phone (my mom’s personalized sound comes from the movie Psycho). You will ache from head to toe trying to roll her from side to side to change her diaper. You will get silently furious as she buys clothes she’ll never wear and paint she’ll never use. If your marriage has even the slightest fissure in it, this will break it open. Your girls will resent her. While 40 hours in home care sounds like a lot, it’s not. Bedridden = 24/7 care and unless you have money to burn and can hire some for those hours, don’t do it. It will destroy you and everyone around you. And this is coming from someone who had a great relationship with her mom and would never have imagined feeling this way. If I could change anything, I never would have allowed her to come home I’m January.
If others have had a more positive experience caring for a bedridden parent then hats off to you! You truly have my admiration.
My "line in the sand" was very similar to yours. I always said if my Mom couldn't toilet herself, or if she couldn't feed herself, she would have to go to a nursing home because I wasn't going to change her diapers or be around 24/7 to hand-feed her.
Thing is, though, these changes only occurred in the last few weeks of her life. When she refused any further medical treatment and decided to go home AMA, I went with her, knowing it would only be for a few weeks. It wasn't just that my mother would have hated being in a facility. It's that I wanted her where I could keep an eye or her, make sure her needs were tended to, and give her personal attention.
I thought I'd hate changing diapers, but in the end it didn't bother me at all. I was so glad just to be able to do something to make her more comfortable, and so gratified that she was willing to entrust this level of care to me. We bonded in those last few weeks like we never had before. It was the best thing I've ever done, and I am beyond glad that I was able to do it, and did do it.
So I decided to bring her home instead. Either to get better or to die. She's gotten better. Within 2 days, her BP was stabilized and is good even for a 18 year old. Mentally she is normal again. She is responsive and talks to herself endlessly again. Something she has done for years but in the SNF she was like a zombie.
Taking care of her at home hasn't been nearly as bad as I thought. If anything, it takes up less of my time than caring for her in the SNF. Considering I had no idea what I was doing on day one, it hasn't been that hard to self teach. I had no idea how I would possibly be able to change a diaper in bed. Now, for a uncomplicated pee only diaper change, I can change a diaper and do a wipe down in about 2 minutes. Unfortunately that's rare since grandma is bowel incontinent. 99% of the diaper changes are poop changes. That still only takes about 5 minutes unless she decides to take the diaper off and smear herself in poop.
I also thought that doing the wheelchair to bed transfers would be a nightmare. It turns out to be easier than I thought. Turning her in bed is also pretty easy. I just grab the pad she's lying on at one edge and lift it up. Which easily rolls her.
Get a hospital bed. That's a big help. Get a air mattress. That prevents bed sores. That way you don't have to roll them every 2 hours. Well worth the $40.
Has it been a joy to care for her at home? No. I'm a germophobe and I don't even shake people's hands. Now I pretty much wrist deep it in. But taking care of her at home is a much better alternative than having her in the SNF. I don't think she would have lasted much longer there. Especially since in the end they told me their goal was never to get her walking again. They ordered hospice instead.
Even when you can somewhat care for yourself, this is the answer to everything! I was in a hospital for almost a month (only allowed to go home after badgering them for weeks! with home health services such as visiting nurses to draw blood, prep the daily feed bag, provide supplies and meds, etc.) During morning "rounds" the doc kept telling me I should be using my pain meds... For WHAT doc? I am NOT in pain!!! I did try using it for a bit to help me sleep (beds were NOT comfortable and noise would keep me up) but those narcotics only make me loopy, not sleepy, so I stopped and asked them to take it away. Funny the nurse says oh no, you need it and if they take it away you can't have it back if you have pain. I told her the only pain I have is when the box encasing it on the IV pole hits me in the head! TAKE IT AWAY!! and they did.
Many here will tell you the difficulty of keeping her at home where skilled care is needed. Are you trained in that? Are you ready to endure the physical and mental toll it will take on you and your family?
on the subject of bedsore...did hospice provide a special mattress for her with alternating pressures? If not request one. They should be monitoring her constantly for skin breakdown.
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.
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.
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.
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.
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.
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!
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.
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
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.
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 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.