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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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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.
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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!
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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.
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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.
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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.
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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......
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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.
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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.
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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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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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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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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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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.
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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.
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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 🤗
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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.
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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.
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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.
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You've already answered your question within your own post, SNF. You wrote that an SNF fulfills her needs and all red-lines mentioned.
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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.
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I had to become my mothers full time caregiver from Jan 2016 until April 2017.She suffered a stroke in Aug 2015,after recovering in both a hospital and SNF.She was discharged home.Prior to her being discharged I had to get the house modified.There was a chairlift installed outdoors and yes there do install them outdoors.She couldn't walk.A mini ramp to get her wheelchair from the porch into the house.Not the mention bedrails,showerchair,hand held shower,commode etc

My mom did have an aide who came out three days a week,PT,and OT an hour each day.

Having to take care of my mom's every need 24/7 took it's toll at times but I did what was needed,because that is my mom.

You will get frustrated,overwhelmed,even angry at times so you need a outlet.I made sure that once a month I made time for me.

My mom had falls during that time and was readmitted to the hospital and SNF but in the end she passed from a pulmonary embolism.

I had to make the decision solely since my brother passed three years prior to take her off life support.One of the hardest decisions of my life even though that was her wish.

When she took her last breath I was there,so would I be her full time caregiver again.Yes,but you have to do what us best for you,your family,and your sanity.

Hope my story helped.
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My Daddy & I had my Mama brought home from rehab after all of us recognized no more progress was being made in regards to her healing.  We thought and hoped with in home care and PT we could get her back up from the bed and to the bathroom. (She had broken her femur in late March and after 2 surgeries, the PT people in the rehab felt that she might do better at home.) My Mama was 80 and my Daddy 82, I had been living with them for over 5 years due to their health and just because I wanted this time to be with them.  I was the person who had to change Mama because Daddy wasn't strong enough.  It was hard at times for Mama because of her dignity.  It was hard for me at times because I work full time and trying to get home at lunch to change her was stressful.  It was hard for me at times because I would have to get up in the middle of the night to change her much to her chagrin.  It was hard for all of us because of bed sores (they happen no matter what you do it seems) and it was hard because of the medical things that came up and she had to go to the hospital 2x.  Yes, we got time to talk, to share and to hug on each other.  My parents were able to be together each night because thankfully we had a home that we were able to put her hospital bed in their bedroom.  And when Mama died, she was in her home with her family.  Looking back I realize how draining all this changing diapers was, that I would give anything to be able to hug her again and how sorry I am that we had our moments.  It's not crazy to consider bringing her home - she's your mother.  But it will impact your home in good & bad ways.  It will put a strain on your marriage because you're human.  It will give you so many good memories of times she had with her grandchildren and your children will see the love you have for their grandmother. 
I guess you can tell I'm still working my way through this.  What I want to say is taking care of a bed-ridden person is hard, hard, hard.  The actual changing diapers, wiping bottoms, changing sheets & clothes, staying on top of bed sores, putting on cream to keep rashes under control, getting up in the middle of the night, racing home on your lunch hour to change, trying to assure your Mama she's not a burden - all of that and more is part of the picture.  Your husband and children have to understand this will demand so much of you and are they willing to not have your attention.  You have to understand you are not Super Woman and won't be able to do all things and be all things to everyone. 
No matter what your decision, remember you're doing the best you can at this moment and what an honor & privilege to be there for your Mama whether it's at home or the facility.  Hug her many times and tell her how much you love her.  In the end those are the things that will help you through this journey no one ever asks to take.  Hugs and my prayers are with you.
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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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5 yrs ago, Aactually it was my Sister who was dying from Cancer.

I cared for at my home, in my own bed where she died, as only the Master Bedroom was downstairs and she was bedridden.

Yes it was hard on myself and my husband but it was worth it for her to feel Safe and Loved and those were her exact words.

She lived 3 months.

I had No Help at all!
She needed 3 blood transfusions a week so she could live and couldn't be on Hospice if you're getting the transfusions.

The blood transfusions gave her extra time.

Neither one of us was ready for her to go but God had other plans.

Yes, I would do it all over again even longer.

I would not have had it any other way.

I miss her terribly and the only regret is the times I was not in her room to spend time with my husband.

She was so awesome and brave thru everything and so appreciative, even worrying about how I would feel with her dying in my bed. I told her I was sad but honored.

I believe if you love your mom and you want and can offer what's best for her. then you already know the answer.

Skilled Nusing Nursing Homes SUCK, especially when the patient is bed ridden.

They're just short staffed and you have to do what they say and some ca be very unfriendly and demeaning to your loved one.

You will have days that you have 2nd thoughts, but once your mom passes, you will NEVER Regret the decision of letting your mom die at home around the ones she loves instead of in a cold and unloving environment.

Im actually now in a situation with my 95 yr old Dad that wants to continue to live in his own home.

Im looking for a Live In, so he can do that as long as he can.

Only God knows if he will eventually pass in his own home, where he feels familiar and wants to be.

But I do know, there's a bed waiting for my Dad at my home, when he needs it.

And No, I'm not looking forward to it because it is a sad situation to watch a love one die.

I figure a parent was there to change and feed you for years, then if you can do the same when the tables have turned and they need you to help them, even telling them over and over again don't mess with the tube from the Catheter when they forget what it's doing there.

Prayers for your Mom, You and Your Family.

Let me add one more thing....it will certainly show your Children that even tho it isn't easy, it won't be forever and your lives will just be on hold for a little while, then they will get back to normal.

Your Mom on the other hand will love and appreciate and know the hardship that you are willing to do for her.
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Musicismymuse Jul 2019
God bless you for what you have done and are now doing. I wish more people thought as you (and I) do. We know that often, when we REALLY get to the point when we cannot manage things ourselves, the decision is made for us. ;-)
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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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The fact that you have Hospice in that will help a lot.
You can get equipment that will help you transfer her.
Learning to change a brief in bed does not take long it is a mater of doing it a few times. Will it always look "pretty" ..no Will it function properly..most of the time ;)
It is what you can manage.
You have to put your family first..yes mom is family but she raised you to leave her and your dad and start a family of your own. This is your priority. If you think the whole family can handle it knowing that space will be at a premium..and even more so with a hospital bed and other equipment that you will use. Is there carpet that will make moving a Hoyer difficult? or a Wheelchair hard to maneuver? This is a discussion to have with your family..a discussion to have with your mom and if she understand that this is a trial basis. Give it a few months to see how well things adjust and how you handle things once the kids are back at school and are not there to help during the day and you running them to their activities all the while caring for mom and keeping up a household. It can be daunting.
Do not forget the volunteers that Hospice can offer, use them as a time to get shopping done, some will help clean as well and if you don't want to leave mom with someone they can do the shopping and run some errands for you.
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rovana Aug 2019
And OP is trying to hold a job as well?
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If you can not afford 24 hr care I’d say don’t try it. You both work so what can you do if you need to be up at night with her? What about your own family life? It’s a great illusion to think you can basically live in a happy home but truthfully, illness gets in the way of that. That’s the constant that does not change for the better but instead gets worse. If you have other family / friends, set up a schedule for plenty of visits for your MIL. If possible make sure she participates in all activities her facility has to keep her active. A week isn’t long enough for her to settle in. You don’t love her any less because you give her the care she actually needs , whether that’s a skilled facility or not.
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This is about fulfillment of a well-lived life for a lady who is alert and interested in her surroundings, and she needs a loving environment to spend her last days. Read "Being Mortal" by Atul Gawande for some insights. Health care at home is achievable and there are home care agencies that can provide the staff and guidance. It sounds expensive unless your mother is on Medicaid, but in the end it is much better for her, I should think.
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worriedinCali Jul 2019
What about her daughters life? 24/7 homecare isn’t in the cards so she would be taking care of mom 16 hours a day plus going to work and taking care of her kids.....
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missmagpie, I was in a very similar position to you last November, when my 89 year old mother was declining in a nursing home after a serious stroke she had in August 2018. She was on hospice at the time, and my husband and I decided to bring her to our home with 24/7 health aides (in our area, skilled nursing vs. 24/7 health aides are similar cost, i.e., extremely expensive).

Lots of good advice has already been given: consider ALL the logistics, because life would change dramatically. Take your time in deciding, because one week in nursing care is not enough to know how your mom will do in the longer term. Learn as much as you can about turning, changing, and bathing your mom, because health aides call out sick, can't get to your home in bad weather, etc. Is she on insulin? I was on call every day for blood sugar monitoring and insulin shots. We also had a wound: I had no problem with dressing changes, but for some, I could see it being difficult.

Had my mom continued to decline, we would have kept her at our home until her death, but in May, she "graduated" from hospice, so we decided after six months of caring for her that she would be better off at a good SNF, and that is where she is now. She is not very happy to be there, but she is well cared for, and I can finally be her daughter again, rather than her nurse. My husband and I are VERY confident that sending her there was the right decision for all of us.

One other point: the difference for us between having mom at our home on hospice and not having her on hospice was enormous. For us, without hospice, it was very difficult to find medical care that comes to the home, whereas on hospice, we had visits from the hospice nurse, which helped enormously.

Take it slowly, and consider each decision carefully. And best of luck to you and your mom. The fact that she still enjoys activities, food, and the company of others is huge and something to be very, very grateful for!
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Her care needs will only increase. Unless you are prepared to be a round-the-clock aide, I would strongly suggest a SNF.
Theres more to “living” with someone than just sleeping. There’s medication management, doctor visits, laundry (those bedsheets/clothes get filthy fast), bathing, meals, toileting issues, space....
when my father was with me for 4 months, he was in a makeshift bedroom in our living room. My kids could not have friends over, we needed to alter our routines when he was napping/sleeping, and his sheets needs to be changed daily.
a close friend has 24 hour care for both her parents in their own apartment, and the situation is NOT ideal. The aides don’t show up all the time, and they rarely do laundry or any cleaning. It’s a revolving door of caregivers.
Good luck with your difficult decision. Ultimately you need to decide what you feel comfortable with. If you’re already concerned about having her moving into your home, I would go with your gut, and seek professional placement in a SNF so you know she will be safe and comfortable.
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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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This is something that we are facing too. My mother is still at home and in hospice for 3 months. She can still ambulate with a walker. I have been her caretaker for over 7 yrs now. I am very tired. If she gets to the point of needing full time care and hospice doesn’t provide round the clock care, I will have her go to the hospice facility to be cared for. I cannot fill in if someone doesn’t show up, or if a shift is needed here and there - and this will happen. On a side note, my mother is still very involved with the world and is not planning on going anywhere soon. She has end stage chf, but due to the comfort care she is receiving through hospice, she is better now than before hospice. I have a cancer diagnosis and will be doing chemo for 6 months. I will say all my caretaking has had a toll on my health.
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IT is a very hard decision to make. Reading through the responses, you've gotten advice from both sides of the camp!

I will say that those who mention dementia are really playing in a different ball-park. Many of them are the nay-sayers. Given that your mother has physical needs but cognitively is okay makes a big difference. Dementia with or without physical issues is a big game changer. Our mother developed dementia, and at the time we decided she needed to be someplace safe she was still pretty much self-caring (aka dressing, walking, toileting - there were safety issues with her and none of us were living close enough to check on her often enough except by phone and with hearing loss/forgetting to put new battery in hearing aid, even THAT was a challenge!!) Given her demeanor (even before dementia), weight and dementia, I said no way. She is not in SNF, just MC at this point. My house would be a poor choice for her as it requires a full flight of stairs to get in, has no easy access tub/shower and is still in need of many repairs (5 years, on hold for the last few!) Brothers are clueless, one not local so we wouldn't be able to help him and the other still working with no space for her. We tried in-home aides and she refused to let them in.

She may be bed-ridden soon too. She had a couple of minor falls, no injury, but is refusing to walk or work with OT/PT. Sits in transport chair and lets them push her or scoots it along with her feet. If she ends up bed-ridden, she may need SNF sooner rather than later - no way would I consider bringing her home, for all the reasons listed, especially the dementia, stairs and weight.

As others have said, a short stint so far isn't really enough to decide how well she is adjusting. I would be concerned that she is getting bedsores after just a week or so. One thing you could do is perhaps visit surreptitiously and watch how her day goes? Many people, as others have noted, will complain about a place they are in and say how much they hate it and yet be having a ball when you are not around! It isn't always the case, but since it has only been a short time, getting a better feel through your own observation and perhaps chatting with some non-admin staff, other residents or visitors might give you a better idea how things are progressing.

Once she is better settled in the SNF and has been there a while, perhaps bringing her home for a day/overnight or a weekend might give you a better feel for what you might be getting into should you bring her home. This would give you a little time to see if space could be set up for her. If you find it is too much work and disruption at home, perhaps there are other places besides SNF that you could explore? Maybe just a weekend day visit so she can get out and see/interact with the family on a regular basis?

With 40 hr/week help (or more) and hospice it could be workable, but only you can tell for sure. Logistics could be an issue, as we don't know what space is available or what access she has in/out and for toileting/bathing. If she has limited income, Medicaid can pay for some/more in-home health aides and perhaps between them and hospice have medical equipment she might need.

There really is a lot to consider. Maybe give her a little more time in the facility, monitor her bedsores and in the meantime make a list of pros/cons about bringing her home and see which one outweighs the other.
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Missmagpie, this will be the hardest thing you ever do, but I read the love in your heart that you and your children have for this woman. I have had similar circumstances, both familial and personal,
Don’t underestimate the disruption you will experience nor the pure joy and satisfaction after it is done. Kind of like how my wife used to describe childbirth 😁 You will not regret having her back with you but it will not be easy. Just rewarding! Good luck!
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You need to talk to the agency that provided hospice care to see what that situation would look like in your home. Make it a conference with mom, the agency, all family members willing to help, and friends that will pitch in as well. See it as more of a brain-storming session that a decision-making session. Later, go over options together with mom and your spouse to decide her best options.

I understand your reluctance to deal with toileting issues. Hospice can help come up with creative solutions and may be able to take over this responsibility.
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cetude Jul 2019
Hospice will not take over this responsibility of toileting--unless they go to a nursing home.
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If you bring her home, cover the mattress with a plastic mattress cover ( find them at Walmart), lay down the large paper liners ( Sam's) on top of a "draw sheet" ( a folded sheet that will help you and the other person on the other side of the bed move her around when she scoots down to the foot of the bed).  Have plenty of heft available to help you, set up a schedule of who does what ( NO EXCUSES TOLERATED), get a hospital bed in place so that you can raise/lower the head and put up the rails to prevent falls out of bed.  Lots to consider!  If you hate changing out the kitty litter box, that will be nothing in comparison to caring for a sick/dying person at home unless you have a medical background and really know what you are getting into.  You might talk to Hospice before you make a decision.  They can probably help.  Also, a social worker will help.  You might employee a sitter to offer some respite.  Like I said, lots to consider.
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