Reasons for care at home...

I moved in with my 96 year old Grandma because I promised her I would take care of her years ago. She helped raise and guide me and cared for me throughout my life and now it is my turn. I’m giving up some freedom and independence to do so but it’s the right thing to do by her. It’s not about monetary gains, I pay my own bills and have my own money. It’s about love, putting family first and respect for our elders. It’s also about dignity and the right to live and die at home.

I took care of my dad who had dementia at his house because I loved him that much. My dad lived in his house for over 50 years. I thought there would be less stress for him and me  being in his own home. He didn't have to adjust to a new environment. My dad would have suffered if we put into a facility. 

My son helped with the caring of my dad. I spent days at my dad's house and my son spent nights. I know I could not have taken care of my dad without my son's help.

He died at home with hospice care after a devastating stroke with his all family being there.

Anniepeepie: Oh, my...you must have read my mind! My late mother WAS indeed legally blind and so to adapt to some place new, well .....! You're spot on! Thank you.

I would opt for staying home every time if it is financially possible. Having had experience with three NH in the past year, one for me and 2 for hubby it is a horrible existence. All three were for rehab but they were just beds in a NH with therapy thrown in. Each time a double room with absolutely no room for any personal belongings. Most of the LTC residents seemed to spend their days in chairs in the front hall fast asleep. The first two did not smell but this last one i could barely stand it I almost puked going down the hall. It was poop but seemed to be coming out of the shower room and bathroom both of which were empty. The food has been uneatable in all three places and the last two personal care was lacking.
We chose the this last one because the rehab had a very good re[utation and I certainly was under the impression that rehab and LTC patients were not mixed together. No way no how not true. Mostly you couldn't tell tother from which. Never did discover which hubby's room mate was because he did not utter a word unless his visitors came.
Don't try and do it alone but if somehow you can manage let Mom and Dad stay home.
We are truly blessed because elest daughter has purchased a house for us to live in and is orchestrating the move and will be arranging what ever help we need going forward. Both daughters came and did the great downsizing which started out being very stressful and depressing but by the second day I just let them get on with it. I figured that if they had tossed something out that I really wanted I could easily get another one. Second day there were three extra helpers so I could not watch everyone or check everything that was going into the dumpster. Same with the arrival we will be whisked to DD's house by #2 DD before the movers arrive and stay there a few days till the unpacking is finished and the house arranged. i wonder when we will be allowed to see the house? We did approve it from the pictures and DD is very fussy so i know it will be very nice. We are just so blessed. Just goes to show if you give them a good eductions ad they become successful you more than reap your rewards.

My mother is 89 with Alzheimer's and my dad is 94. She spent four weeks last year in a nursing home for therapy and it seemed as though my dad went downhill a little. Not to mention that we are giving her so much more care with caregivers unfortunately than what they get in a nursing home. She had a catheter and was put in diapers while there and also developed pneumonia.

Llamalover47- You brought up an excellent point about comfort zone- and having to adapt. Add to that someone who is legally blind- and put them somewhere new..... !

Jo2a507 brought up prices for care- The Assisted Living/skilled Nursing care facilities here charge quite a bit more than 7500 a month. I suppose it depends on the level of care needed. In my research, I found it runs minimum 7500 for a basic AL place for someone who only needs checking on every 2 hours or so and is still highly independent.

Worriedspouse,
I don't believe she knows specifically who I am, but her face lights up when I enter the room. She calls "mama" when she wants me.

If you take an elder out of a home they've known AS THEIR COMFORT ZONE FOR A LONG TIME, they won't be as easy to adapt, even if at all. My mother knew her home inside and out; you take a person away from that scenario, they would be lost.

You are not a control freak-you care! There's a difference. I take care of both of my parents at home, they can kinda take care of themselves, but kinda not. They can't scoop cat litter anymore for their 3 cats. Can't fold or put away laundry and my Dad hates to throw anything away, so it's a constant battle of trying to throw stuff out. Mainly papers. My mom is not all there mentally, so you have to watch her take all her meds or she'll say she took them when she didn't. I thank God everyday that we're able to take care of them this far. My Dad still drives, which helps tremendously!

I worked in a nursing home years ago before going back to college & getting my teaching degree. I was an excellent CNA but not all CNA's were as kind as I was - especially after visiting family members went home! I saw what really went on. I vowed my loved ones would never be subjected to such ridicule & mockery. Then an incident happened at one of the two homes I worked in. A male CNA was caught raping a lady with dementia on his 3rd shift. So - 6 years ago - when my MIL (w Alzheimer's) needed care - we decided to take her into our own home for her own protection. I am retired & we hire 4 caregivers to come in to help me care for her. At one point, two years ago, when things seemed especially stressful, we researched homes in our area and had picked one out that had an excellent reputation. And, it was close to where my husband worked, so he could stop in to visit her often. One of our caregivers worked there and assured me that a rape incident could never happen there! Well, we just didn't feel peaceful still, and a year later, we were SO grateful we hadn't yet sent her to live there. Because a story broke that a 3rd shift male CNA in the Memory Care Unit at this home was letting his buddy in the back door and the two of them were taking turns videotaping each other raping the Alzheimer's women. Evidently, No-one 'up front' paid any attention to the women's screams because sometimes patients do yell for no reason. This had evidently - by tapes found - been going on for quite awhile and tapes were being sold over the Internet. This could have been Mom! And this was known as one of the 'best in town' places to put a loved one! So, not wanting Mom to ever be an unwilling 'Porn Star' and knowing we were already providing much better care than anywhere else - even excellent care - as others often noted - and for half the cost, we continue our journey caring for her in our home. Mom is now nearing the end of her life journey. We are now looking into hospice to come into our home. She is very fortunate to be surrounded daily by those who love her and by tender, kind, professional CNA's who don't mind taking a full hour to coax her to eat and to brush her hair just to relax her. Nursing home CNA's just don't have the time for that! And sometimes a CNA will even have a little extra time to help me out by folding my laundry or sweeping my kitchen floor. I will actually miss their help & friendship when Mom passes. They also are valuable resources of information when we hit a new bump in the road in Mom's care & they have the solution to keep us in the game - one day at a time So far, it has been a win-win scenario to keep Mom home with us. Yes, there are days when I feel burned out & wish my home was 'just us' again, but the feelings pass and overall, I know we are doing the right thing. Mom doesn't know who we are anymore, but once in awhile the lucidity comes back for just a moment and she does know one of us. We might even get an "I love you" as an unexpected gift.

Caring for my late mother in HER home (yes, I had to move in from my home state) was better FOR HER because it was her comfort zone.

Oh cwillie don't give me PTSD. I went for rehab and found all the other residents were NH. Hubby went to one that was so bad and neglectful we moved him to what was supposed to be an excellent rehab facility and he's planning to discharge himself tomorrow.
Talk about making the place homey there was only room for 2 beds a couple of chiars and an over bed table. It is just another N/H with PT. Don't mention the recliners I could practically see the germs crawling over them.

caregiverL - that's not necessarily true

Care in a nursing home or AL is institutionalized care, no matter how many amenities or how excellent the staff (and unfortunately many are anything but excellent) they can never get the personalized attention we can give them at home. Examples:

In the nursing home they start getting them up at 6 a.m. so they can get everyone ready for breakfast.
If you are hungry or thirsty between meals you don't have the option to pop into the kitchen for a snack.
Meals may be tasty (or not) but menus are recycled on a schedule and there is no option for spontaneous variety. (Feeling like Chinese tonight? Tacos? Breakfast for dinner? Dream on!)
Entertainment is also scheduled and repetitive so if your interests are eclectic or if your care plan (nap time/bath time) conflicts with the schedule you are out of luck.
If you are wheelchair bound you go where staff takes you and you stay there until they move you somewhere else and very likely no one ever asks your opinion about it.
If bath days are Monday and Thursday and you mess yourself on Friday you will not get an extra bath.
If you go to the hairdresser on Friday and your scheduled shampoo and bath is on Saturday guess what happens to your hairdo?

I had my Mom brought to my home on hospice after numerous bad experiences from 5 star nursing homes when she was in for rehab. One thing that occurred was a stage 4 tailbone wound from the neglect of the first place, and in the second place an aide dropped my Mom putting her in her wheelchair and broke her ankle. This place was supposed to rehab my Mom, not injure her. I saw hot dogs being served twice in one day in this second failure of a 5 star nursing home. Mom also had peace and quiet in her own room here when she was bedridden and I brought her what she wanted to eat and played her classical music when she wanted. Aside from the cost, she was just happier here with the privacy. I had the hospice people come in a few times a week to help. Medicare paid for the hospice. Mom died peacefully in her bed here instead of in a calamitous place with TVs blaring and with lazy attendants. It was rough, I had to learn a lot, but I don't regret doing this for her.

You implied in your question that there are many reasons why someone would care for a LO at home. This is true and every case is likely different, although some may share a few reasons. The reasons why someone needs care-givers also vary - it could be various medical issues, ambulation issues, or, as many here deal with, any one of the various dementias. Many comments I have read listed these:
- Money (lack of to pay for facility or in-home care)
- Promise (LO begged to stay home)
- Obligated (out of love - some people feel home is where the person should be)
- Prefer to provide the care (similar to Obligated)

Reasons for not doing it would also be personal and varied. Our mother was still mobile (able to ambulate and take care of herself, although driving and, as we found out, cooking skills were gone!), and lived alone in a 55+ condo area. We were all still working and one brother does not live locally. She did not need hands-on care (and still really does not), but it was not safe to leave her alone any longer. Our problem was that she still felt she was independent, could cook and care for herself and do everything. She was refusing any kind of move and after just a few months of having someone "check" on her and ensure she took her meds from a locked dispenser, she refused to let them in. Combine dementia with macular degeneration and limited hearing, she was a disaster waiting to happen! I knew that 1) my house was not a good place for her and 2) physically I could not help her. My brothers had suggested to her that she move in with them - NOPE! When they heard the cost of the place, they almost jumped at the chance to take her in... I do not think either had the skill-set needed to care for her, and who knows how their other half would see this! Living with her, if one of them tried that, would be a challenge as well. When the non-local brother would visit, he would stay at her place. When not doing something for her, he would be pretty much ignored! Nose in magazine or paper! The last time some relatives from Canada visited, she insisted they stay (they had reserved a motel), but then told me later she could not wait for them to go! I do not think she would have been easy to live with, either in our homes or hers!

So, we did move her to a MC facility. Although it does provide activities and some socialization, which is GREAT for those in the earlier stages (she was self-isolating when at the condo, joining in less and less with neighbors and Senior Center activities.), when nothing of interest is going on, she still tends to just have her nose in a magazine. Although she sits too much, it was the same in her home and likely would be in ours. For me just the fact that she cannot wander off someplace AND has others around for any falls or injury is a relief!

As for cost - based on the rate we were paying when we had those aides coming in, it would average to about $14,600/month for 24/7 care (likely more as I am sure that nights and weekends as well as more specialized care are more expensive.) Granted, if she were in one of our homes, we probably would not need 24/7 care yet, but still, that is WAY more expensive than the place we found for her, almost double! None of us could provide in-home care where she lived (the one brother is not local, the other still working full time and I would not be able to stay as she doesn't like pets and I have cats to care for, so I would have to drive almost an hour and a half each day!  *EACH way!) Her current place is about 15 minutes from where I live, so I can visit more often than I did when she lived in the condo.

There are several other considerations for not doing home care:
- Some people do not have the space in their home or LOs home
- Some people are not cut out for hands-on caregiving
- Final bonus I see is that you get to spend more quality time with the person, rather than cleaning up, providing meals (especially if they are specialized) and any/all other 'duties' one might need to provide.

My sister and I took turns for 4 + years taking care of our mom at her home. At first she was participating in her activities, cards, etc. she slowly lost interest in those activities and other interests, slept a lot (we never found out why), broke a hip, had a mild heart attack was diagnosed with CHF. We wanted to keep her in her home which she had been in for 20+ years. It was diffiuclt being away from our families, but in the end it was well worth it. She spent her last 3 months in a NH and it was not pretty. I would do it all over if I had the chance. Every night when I got her ready for bed she thanked me. I think a lot depends on your relationship with your LO, i had a close relationship with both my parents which made doing this easy.

Jeannegibbs - have you put your wishes in writing? This would be a lovely thing to provide for your children - the relief of not having to guess what you would want, and the peace that you are happy with being somewhere you have chosen, etc.

Advanced Directives, a will and a spiritual directive of sorts, are something we all should have in place.

There are no other reasons other than reduced cost.

I cared for my mother at home until her death for several reasons. She had galloping cancer, and it was likely to be weeks, no longer. I worked for myself, and had enough in the bank to live on for the period. Mum was perfectly rational until the end. My health held out for the four weeks of 2 hourly sleeps and bed-ridden incontinence. Mum had also cared for my grandfather at home until his own death from cancer, also quick and also mostly rational (and she was the only one to understand when he slipped back into earlier days). I was glad and proud that I did as well as my mother had done. No, I couldn’t and wouldn’t have done it in other circumstances. You have to deal with your own circumstances, and not take too much notice of other stories.

Some of us don’t really make the choice. It’s basically dumped in our lap.

I’m just waiting on Medicaid to see if mom can be placed in assisted living.

It’s definitely not all sunshine and rainbows with parents living with you.

Most of the time it is about funds to pay for other living arrangements and sometimes it’s being overwhelmed with knowing what to do.

My dad also had his grandson move in with him to take care of him in Kentucky while I live in Alabama after he, too, one night, got dizzy and fell off his deck over his stairs and fractured his neck, looked awful, although at the time we actually didn't know he'd fractured his neck; didn't actually find that out till about 3 wks. later when he was still in such pain, although I had definitely gone by then because not only did he fracture his neck but he also severely cut his head which also got infected that he had to go to the hospital 3 days a week for wound care for; I didn't have POA at that point but did get it; when did find out about his fractured neck the local doc did want to do surgery but when he'd been in it with someone else and we couldn't get him we'd ended up taking him 2 hrs. away to a big university hospital who wouldn't do it but did want to follow up with him but he didn't want to keep making that trip but after they wouldn't do surgery when the local did we weren't going to let him, at least not without another opinion so we did manage to find somebody else local, who wouldn't do it, either, but we could do the follow-up with them; he didn't end up in ICU that time but he did later, with a catheter, and I, too, stayed with him constantly; well, at least in the daytime but they had rooms with beds in the hospital on the same floor so I felt free to use those at night since they didn't have real beds in the rooms and then when he was moved out of the icu, still with a catheter, I stayed in his room, since they did have real beds; they didn't send him to rehab but we got to bring him home, after a sub doctor had his catheter removed, with home health that did weekly blood draws that led to blood transfusion and getting back to going to his blood doctor in a different town that he hadn't been having to go to but just to his local in his town. Thankfully grandson had a pretty strong support group to be able to keep handling dad on his own, even after his gf had a bad wreck and had to be lifeflighted to that same 2 hrs. away hospital , plus he did already have a aide coming in
He got a walker as well and got better to the point I could come home at that point. we had found out with my mom that their - as in the one in ther room - bathroom's door was not wide enough to get a walker through straight but we got one of those bedside potties, plus dad wasn't really on a walker all the time like mom was for a while, but that whole stair issue that dad fell over to begin with was still an issue as well as the same number in front plus possibly a threshold in front of them, plus you don't really have "limitless" hours, you have to sleep sometime, which is fine as long as they do, which is what had just begun to happen, that dad wasn't sleeping like he had been ; I'm not sure what we would have done had it kept on but those stairs got us

There is a list of pros and cons. Does your loved one weigh a lot? Will a HOYA lift be necessary, because if so, two people must operate it. Are they social? A nursing home can provide activities and concerts to participate in. Does your loved one require the care of a nurse for wound care, frequent blood draws, catheter maintenance, etc. How important are beside visits by a doctor? Nursing homes provide this. How strong physically and mentally are you and how much support do you have? Is your home handicap accessible/friendly? I'm not just talking about grab bars. Are hallways and doorways wide enough? How easy is it to enter and leave the building? On the other side, nursing homes don't have limitless hours to provide care for your loved one and they will likely share a room with another patient who may or may not be someone easy to live with. It is easier to acquire illness and superbugs in a nursing home. Your time with your loved one is naturally spread out over the course of the day rather than concentrated in an hour or two. You know your loved one better than anyone else.

If you choose to have them live with you, know that it can take a while to find caregivers that are the right fit. Expect that it will take a period of time to straighten out a schedule and also expect that people you employ will come and go. (People have babies, go back to school, and the like. One of mom's best helpers had a baby and then went back to school!

Good luck with your decision.

Wonderful sharing here. I moved my mom 400 miles to a memory care assisted living community. We are both very independent and always joked about how we could never live together. Mom is safe, not always happy, participates in activities, and I have coffee and chat time with her and her friends six mornings a week. It's a joy to visit, help her out with a few things, manage her care...and still have a life of my own. I started out with guilt, but after the first 6 months past I knew it was the right decision for both of us. I'm retired, divorced, and an only child. I have grandchildres, a posse of great gal pals, and one son who already knows I will happily go to assisted living if and when I need to.

Mom was living with grandson (35 at the time) and great grandson (15 at the time) in Ohio. I live in California. Both brothers had Hemophilia and one passed at age 30 and the other at 59 (5 years ago). Two years ago, at bedtime, she must have gotten dizzy and fell forward at her bedroom door and fractured her neck - horrible bruising and large hematomas on her face. I rushed there as I am POA. They did surgery and saved her life. Stayed with her constantly in ICU, in the "mini" hospital and also the rehab facility (sleeping in chairs and pull-out beds). When Medicare ran out - went home with her for home health and therapy.

Eventually, she could stand and use a walker. After eight months there, I convinced her that she had to come to California with me. She needed more care than my nephew or his son could possibly provide.

Even if she could afford nursing home or assisted living, and she can't - I could never do that. I was one year away from full retirement age, so went on SS. Not unhappy about retiring!!

Fortunately, she doesn't have Alzheimer's or Dementia. But, she does have memory loss of the more recent past. Doesn't remember her accident, where she was living at the time - not more recent events - like 9 11. She does know who all of her closest relatives are and can remember her childhood really well. She is 88 yo and in great health for her age - plus I take really great care of her! Not sure what will happen if and when she gets to the point where she can't "help" with her daily care as she does now, but I will cross that bridge when I come to it!

We have so much fun with each other every day! I never realized how very funny she is. She colors in adult coloring books, reads the many magazines I buy her. We talk about family all the time. That has always been very important to us - I do a lot of genealogy work tracing our family history. I send blessings and love to all of you who are dealing with parents who are suffering from issues worse than my mom's. God bless you, whatever choices you make for the care of your loved ones! Happy Easter!

After my father passed, my mother, then 86, wanted to stay in her own home, understandably. We live in the same town so was willing to try and make that work but I called to check on her a couple of times a day and was over there almost daily. Did her shopping, cleaning, yard work. She had a fall and broke her wrist and was with us for 5 months but wanted to go back home so we tried it again. I could see her declining but she refused to move. Then she got Pneumonia as she absolutely refused to let me get her to a doctor. I just put my foot down after that and brought her to our home. At least we sold the house and she was with us. Unfortunately, I have my own health issues and am an only child. I did have someone come in to bath her for me as I have a bad back. She stayed with us for almost 3 years and was needing more care. We could barely go anywhere as I did not feel comfortable leaving her alone. I made the difficult decision to put her in a small, residential care home. I did not want her in a large facility. Her dementia was progressing, had a recurrence of her breast cancer, was getting up during the night, incontinent, etc. she passed about 7 months later. I don't know that I made the right decision but I could not do 24/7 care, hiring through an agency is expensive and, the few times I had used an agency, I was not pleased with the people they sent. I will add, that when I moved her, I continued to go see her daily and I took her to her appts. Kind of haunts me to this day but I coukd only try to make the best decisions I could, at that time. My husband was very tolerant of the situation but all that impacted his life too.

This is such an individualized question.

For whom are you giving care? What's the relationship like NOW...do you have your eyes wide open and the knowledge that everyone will get "worse" and require more care.

It isn't just about love and caring: it's also about practicality and finances and the strength of the family (extended and nuclear). All the stars need to align to make in home caregiving the BEST choice for your LO.

I have made no promises to my DH to care for him forever at home. I know he has no such plan for me. We have tried to establish a financial base so that ALF will be possible if necessary.

Having said that---who really knows what the future holds. We make plans, the gods laugh. I HOPE that we both live independently until we die quiet, serene deaths. Reality tells me that's not likely.

It's such a personal thing...you really have to search your heart for the answer that is right for you.

For non SF Bay pricing comparison, here is my Midwest experience. Home care averages $22 per hour. AL is $5500 per month including a tier 3 level of care. Still have to buy all meds, paper and personal products, phone and TV. It's a private 1 bedroom apartment with no cooking. Memory care is an additional $1500. Nursing Home is one room with roommate for about $12,000 a month. I don't know how much more for single occupancy.

jeannegibbs, ilovemycats, smeshque, Patticake2, and Grandma1954 all said it very well.
This is my husband whom I love dearly. My vows said, "better or worse, in sickness or in health."
I never promised him I would keep him at home forever, I promised I would keep him home for as long as I could. 2 years ago the hospital wanted to send him to a "swing-bed" but none that I approved of would take him so I brought him home.
I can't tell you the number of people that have told me, I saved his life. He would have died in a NH. He would have wasted away if nothing else killed him. I am in no hurry to be widowed. Even the days when he pretty much sleeps 20 hours - he's still here and content.
No, I have no help - this is a 24/7 job. I have a sister that used to do some of my shopping for me, but now her husband is terminal with Pulmonary Fibrosis and she, sadly, is discovering what it means to be a 24/7 caregiver too.
I have NO regrets with my decision and will still keep him home for as long as possible. Even when he becomes bedridden, I will just find a way to tend to him to the best of my abilities. When and if he does become bedridden, I will put him on Home Hospice. They were wonderful with my dad and I trust them to help me with my husband.
Someone before me said that you must put the other person ahead of yourself and for me this is very true.
Don't think I don't get angry or frustrated at times, but if you saw the way my DH looks at me and thanks me - you would understand better.
A good question - thank you for asking.