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 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.
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.
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.
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
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
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.
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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