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.
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.
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.
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.
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.
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.
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.
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.