Follow
Share
Read More
This question has been closed for answers. Ask a New Question.
One week is not enough time for her to adjust to the facility. It’s unrealistic to think she will be happy at first and perhaps never actually. But what is in the best interest of both of you? Again as I’ve stated before, you have to separate heart decisions from head decisions. Right now I’m reading from your post a struggle from both aspects of these decisions.
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.
Helpful Answer (3)
Report

You've already answered your question within your own post, SNF. You wrote that an SNF fulfills her needs and all red-lines mentioned.
Helpful Answer (6)
Report

I guess I'll take a different tack from what many posters have been saying. I recently had to make this decision myself. Or I had this decision made for me by the SNF. I got that infamous declaration of medicare noncoverage while grandma was in rehab for a fall. I feel full well that I would have won if I kept appealing it. The law is very clear. But while I was on the phone calling people as part of that, I decided to just take grandma home. Why? Because she was not doing well in the SNF at all. She left in worse shape than when she arrived. He BP was crashing, she wasn't eating, she wasn't drinking and she was non-responsive at times. Like I couldn't wake her up or get any response even with a sternum knuckle rap. Once this went on so long and she was breathing so shallowly that I couldn't tell she was breathing that I thought she was dead. I also had to be at the SNF pretty much all day for a variety of reasons. She has strict dietary requirements and regardless of how many people I talked to, I talked to a lot, the meals were wrong half the time. So at a minimum I had to be there to check each meal.

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.
Helpful Answer (5)
Report
disgustedtoo Jul 2019
Certainly sounds like they were keeping her doped up - seems like all too often if someone is even a little demanding of time/care, this is an option they choose!
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.
(1)
Report
See 1 more reply
In your home, It would not be the Brady Bunch scenario. No loving environment. Leave her in SNF...I took my mother w dementia, out of SNF discharged 2 years 4 months ago(against advice of everyone at SNF) because I thought she didn’t have much time...but with my care & private aide...she gained weight & is still here. She totally immobile & incontinent...& very combative at times... This morning she refused her calming pills & I had to hide it in chocolate 🍫..then she starts to take apart chocolate because she insisted it’s poison...My health is starting to suffer & everything in my life put on hold...no career, no vacations, ..everything revolves around mother...Hugs 🤗
Helpful Answer (6)
Report
needtowashhair Jul 2019
Grandma often gets combative as well. I've learned to not fight it. That just makes it worse. I just put everything down and walk. After waiting a few minutes, what was hand to hand combat to get a spoon full of food in her mouth is often greeted by her seeing the spoon coming and opening wide. I can only get a spoonful or two in before she gets combative again but then a wait another 5 minutes and do it all over again. You just have to roll with what it is.
(2)
Report
See 3 more replies
I may be in the minority here, but I think that if she's near death, bring her home and let her die surrounded by her loving family.

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.
Helpful Answer (3)
Report
missmagpie Jul 2019
Thanks for sharing, I'm glad to hear this perspective. I do think the timeframe makes a big difference. My mother was diagnosed with metastasis from breast cancer almost 15 years ago (went to her spine), and has been on hospice about 2 years now, so that is how slowly this has been progressing. They have kept her on hospice because she is continuing to decline, but it seems like sometimes she takes a step down and then plateaus for many months or even a year at a time. I am hopeful that she could still have a substantial amount of time left (maybe a year or more?) but I'm also afraid the SNF is draining her will to live. But for now she is there and I am trying to take it one day at a time.
(0)
Report
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.
Helpful Answer (17)
Report
CaregiverL Jul 2019
Right on, Texangal!!! I agree wholeheartedly & I don’t even have a husband to help
(3)
Report
See 1 more reply
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.
Helpful Answer (13)
Report
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.
(6)
Report
See 2 more replies
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.
Helpful Answer (15)
Report

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!
Helpful Answer (12)
Report

Is there a Hospice House near you? They are lovely facilities that have a home like atmosphere, patients have their own room, family can come and go and 24/7 care is provided.
Helpful Answer (5)
Report

What does your husband think? He would need to be an equal partner in this, equally on board.

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.
Helpful Answer (9)
Report

I think a lot of people in your mother's position engage in a little bit of magical thinking with the hope that if they could only get out of the NH they'd be able to return to the life they once had. Consider that the things she hates most about her life at the NH - her increasing dependence on others for even the most basic functions and the pain associated with her pressure ulcer and no doubt the cancer - will follow her wherever she goes.
Helpful Answer (7)
Report
Texangal81 Jul 2019
Magical thinking! That is the perfect description for it. My bedridden mom is going to buy a car for ‘when she gets better’ so she can go to the doctor and the store. All she needs is to get out of this awful place and have home health PT more often. Many experienced doctors have considered my mom down for the count quite a few times but I always knew she’d get back on her feet and she did. But this time she really is down for the count. She floats on her magical raft down the river denial......
(4)
Report
Let me weigh in to try and be helpful. After my mother fell and broke her hip, we did rehab for three plus months. She ended up being wheelchair bound and unable to stand or pivot. On top of that, she is obese and has brain cancer. I did my homework during the rehab time and looked at all possibilities of bringing her home versus nursing home. For us, taking her home was not an option since I could not get 24/7 aide help.

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.
Helpful Answer (5)
Report
missmagpie Jul 2019
Thank you for your input! This does all sound really challenging. I had not considered day respite services but will look into it.
(1)
Report
I care for my bedridden husband at home. It is a monumental undertaking. I have no help. Having an occasional aide come in wouldn’t be much help. It is almost impossible to bathe him. I don’t know why he doesn’t have raging bedsores by now. Our house is not handicap access and looks like a durable medical equipment showroom. The job is exhausting and he is not demanding. He is of sound mind and has no serious terminal medical issues. He isn’t demanding of me. But it’s still a mind-numbing amount of work.

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.
Helpful Answer (10)
Report
missmagpie Jul 2019
Thank you for your very honest sharing of your experience. I think it is important for me to consider just how much work it would be, and the potential impact on the relationship. I'm sorry to hear how difficult it has been to care for your husband, but I really appreciate your input!
(5)
Report
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter