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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.

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Do NOT move her into your home, no matter how unhappy she is. My mother has been slowly losing mobility for the last 10 years and despite fervent wishes otherwise, she’s now bedridden. She was hospitalized in January and discharged to skilled nursing. Her constant calls and complaints wore me down and I brought her home. It’s been a merry go round of hospitalizations, skilled nursing and back home since. I just told her last week (during another hospitalization) that she couldn’t come home ever again and that if she did, I would move out and she would have to arrange for her own care.

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.
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CaregiverL Jul 2019
Right on, Texangal!!! I agree wholeheartedly & I don’t even have a husband to help
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Well I have only been dealing with this since November of last year. Dad was in the hospital for two months, then we brought him home. I have to say that this was not a good decision on our parts - debilitating stroke along with vascular dementia. We took care of him for a month and a half and it just about killed me and my mother, and with my sister's work schedule it was very hard. Mother has a bad neck and I have a bad back so it was me and her taking care of him during the day and honestly it was awful.

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.
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I can't imagine allowing my children to take a backseat to their grandmother, but that is what you would do if you bring her home. No sports, no plays, mom and dad will be completely consumed with grandma's care and comfort. And then the end of life when you are giving her morphine for the cancer pain - will you be able to handle the guilt when she expires after you give her a dose? Will your children not want to come home to the house where grandma died? Children come first - take care of them and if mom is still here once the kids are at college, then you can bring her home.
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In this situation, it's important to keep your EMOTIONS out of the equation and think about the situation logically.

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.
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Lindam1958 Jul 2019
Great answer.
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Beware before you jump into this it is ALL OF YOU !! AND I MEAN IT ALL OF YOU during the night when she's sick only you will be getting up changing diapers ...or cleaning up messes then you got to get up early to go to work.
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
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CaregiverL Jul 2019
Lorraine12, I wish I did this first before I mistakenly took my dementia mother home...now it’s 2 years & 4 months . At first, I was going to do this for her 90th Bday, but a family friend (who since died) said to me, “If you take her home, she will not want to go back!” I bought the lift equipment before but was doing home improvements for a while...& that took longer than expected. Also. I didn’t want my mother to be cleaned out of all her $$$ to go to NH ...but what good is $$$ when you don’t have your health & marbles anyway. I tried my best & sometimes, it wasn’t my best due to me not feeling up to par. I feel so burnt 🥵 out ...no help from bro...sorry just venting...bringing mother home big mistake. There’s no end in sight...nobody helps me except paid private caregiver & only 40 hours...she doesn’t always know who I am or where she is. I was hoping I would never see this awful disease come to this point. She has had many combative days where she’s physically & verbally abused me. I’ve had to take tranquilizer because of this. Seroquel helps calm mom’s combativeness...I have managed to get out to movie or show sometimes..& p/t work...& even got mom out to occasional show on bway. ..but I take Aide w me too ..it’s getting harder now since my mother doesn’t assist or move a muscle...well enough of my complaining...do the smart thing & leave mom in SNF!!!!
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Thanks, everyone, for sharing your experience and suggestions! Your comments have given me a lot to think about and definitely let me know I should not jump into pulling her out of skilled nursing just because she says she hates it. I just spoke with her and it sounds like today was a little better--she was able to get into a wheelchair and get out of her room for a bit. I think I will be constantly recalibrating my hopes and expectations for her, and for today I will be grateful for this group and for small successes.
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anonymous912123 Jul 2019
My brother and I are moving my step father and his wife from AL in AZ to AL here in Florida, Both facilities warned us what the complaints would be and the demands to go back home, they were spot on. They also asked us to not overdo the visits, let them adjust, also true, if we were not there, we could not be their crying blanket and they could not load guilt on us, and they would adjust better and they did. We are moving them here due to his health issues and her dementia, not related to the facility.
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Hi, so sorry to hear about your dilemma.... maybe I should not weigh in here... but, being bed bound is our “line in the sand” with my live in elderly FIL.
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
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I think there is a HUGE difference between taking someone home from a SNF that has a couple of weeks to live, and taking someone home from a SNF who may live a couple more YEARS. Let's face it......we can handle almost anything on a short term basis: changing soiled undergarments, wet bedding and constant laundry/linen changes, hand feeding, Hoyer lifts to move, wheelchairs and medications and and AND. Since your mom has a very slow growing cancer and has already been in hospice care for 2 years, she may have a couple more years remaining, who knows? Are you prepared to devote every spare moment of your life to her care, and, every spare moment of your family time and children's/husbands life to her care as well? I see you have an aid for 40 hrs a week, but that still leaves the remaining 128 hrs in the week where you and your family will be taking up the constant care. If that's okay with the entire family, and they actually know what all is involved with such care, then go ahead and do it. But if everyone is not on board 100%, I think you'll need to leave her where she is and agree to visit frequently.
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CarlaCB Jul 2019
Absolutely. In my mother's case, she had a UTI that had quickly become septic, and she left the hospital AMA before treatment was completed, refusing any further IV antibiotics which were her only hope of her recovery. I knew she did not have long to live under the circumstances. She wanted to die at home tended only by her loved ones.

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.
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Most who are in AL, claim to hate it, and they are chronic complainers, I think it is a manipulation tactic to get what they want. She doesn't want to die, those words are just one of her ploys. I think you know the answer, she is good where she is at, she will disrupt your entire life, IMO you are doing some magical thinking, the truth is, moving her into your home will not be good for you, your family or her. Base your decision on what will be best for all involved. Take Care!
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24 hour care? She needs to be in a skilled nursing facility. This is a no brainer.
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.
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