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.
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!
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
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.
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.
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.
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 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.
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 !
"...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.
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🤗
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.