Decisions around caregiving: If you could go back in time and could put your loved one in a facility, would you do it?

Yes, and I did. She is still in independent living but will probably have to go into assisted or memory care within a year. I checked out many places before I did it. I can get there in 12 minutes if need be and I still see her at least 2x per week, take her to all Dr appts, grocery shop & pay all her bills. I was losing myself and felt anger like I never knew existed. I did the best thing for both of us. This forum has been a Godsend for me.

Are you inquiring about caregiving in general, for parents, a spouse or other? My response would be different depending on the relationship.

My husband suffered from dementia and Parkinon's. After COVID, the isolation and the continued decline in his condition made it very difficult to care for him. He was belligerent at times, would hit us (my daughter stayed with us a year), sometimes wouldn't take his meds, and later became totally incontinent. His neurologist and psychiatrist adjusted his meds and he got a bit better. It was so stressful even though I had a caregiver 16 hours a week; it helped so I could get some much needed respite. After my husband got a UTI, then sepsis and was hospitalized and in rehab for 4 weeks in July 2021, it was clear to me I couldn't care for him at home any more without a full time caregiver. So, our daughters and I decided it was time for him to be in memory care. He was in a lovely facility, staffing was a bit spotty, so care wasn't always timely, but everyone there was caring and supportive. He was always clean, dressed and ate good meals. He had a very nice room filled with family mementoes and his magazines and computer books which he browsed all the time (although not sure he absorbed what he was reading). He was involved in some activities. But, then in September he was hospitalized again, declined even further and passed away in October 2021. If I could do it all over again - and if I had a crystal ball that he would pass in 3 months - I would have continued to care for him at home. Do I regret moving him to a facility? Since he's gone I do struggle with guilt, but it was the right decision considering his declining condition and the circumstances. Good luck. It's not an easy decision.

I don't think this is the kind of answer you're looking for, but if I could go back in time, and knew I would be my husband's caregiver, I would not have worked so hard to make our marriage work.

RudyNJ: This is not a complicated question. As typically the elder requiring the care may not be in the best of health, of course, and may be resistant to 'raising their hand and stating that they need help,' there is already friction. Perhaps I am missing something about your statement about satisfaction - there may be zero. In my case, I had to move out of state to care for my late mother, putting my life aside because my mother demanded to live alone in her home and I was already an elder myself. My mother suffered a stroke in a Nursing Home, who had verbalized hours before "she was too well to stay there." It is not the carer's financials providing the care, but the elder's.

Hello. I can only tell you about my experiences and hope i am right about my decisions.

first of all after my dad had his ... massive ... stroke i had my mother live in independent living till she died. He lived in a skilled nursing facility till he died.

i did not ask her to live with us since my husband and i both worked and why should she live by herself day after day with no one to talk to ?

she considered it jail even tho her meals were fixed and apartment cleaned and van rides and bingo were available. But then im sure that without my dad that anyplace no matter how luxurious it was it would still be a jail.

Ive had long term insurance for my husband and myself for about 20-25 years now. The cost of it goes up every year but the coverage unfortunately remains the same since i just cant afford higher premiums anymore. i work parttime to pay for it since social security will not cover all the payments. But im hoping that with the insurance and savings we’ll still be able to afford a nice facility.

my husband is adamantly disinterested in ever going while im hoping that i can enjoy the amenities while im still able.

that is the part i hope im not wrong about ... that im not wrong about the facilities’ standards and im still healthy enough to enjoy them.

take your mother to visit a few facilities to look them over and see what they provide. Keep in mind tho that you’ll never know what theyre truly like till she moves in.

ive found several ... both skilled and assisted living.

im in my early 80s and still healthy and wouldnt be accepted in either yet but strangely as ive said im looking forward to a good ending to my life at a nice place.

From a social standpoint, AL/IL is often superior to in home care, especially if the elder's spouse has died. They're surrounded by people their own age, going through the same difficulties. Often if they are cared for in the home, the caregiver becomes their entire world and feels obligated to "entertain" an elder 24/7.

Never. Caregiving was a challenge for me, difficult sometimes, but never a burden.
 
Your loved one will suffer daily neglect in every facility, including hospitals.
 
Everyone who posts here has their very own set of circumstances unique to their experience and relationships. 
 
Here’s what you might consider, based on my experience: think with your heart.
 
Hire in-home help before putting your Mom in a facility. 
 
Later, you may find, as I do, that the weight of grief is lessened by the guilt and
regrets you don’t have. 
 
My amazing Mom was the most unconditionally loving, giving, hardworking, and
inspiring person I have ever known.
 
Everyone loved her, and people would often use the same words to describe her: "your Mom is such a sweetheart"
 
The two of us were a team all my life through challenges, rewards, and simply enjoying life. She put the needs of everyone she loved ahead of herself.
 
Mom never asked to not be put in a facility. In fact, she suggested moving in to one so as not to be a burden or impose on me. 
 
Instead, I frequently volunteered that as long as I was alive, she would never be put in a facility.
 
The cost of hiring in-home help privately, not through an agency, can be very similar to the basic monthly cost of living in a facility. 
 
During one of our daily walks, Mom and I would see a woman conducting a senior class at a nearby fitness club. We were able to meet her one day and learned that she was a home personal fitness trainer in addition to working for the club. Starting one day a week for an hour, eventually became five days a week. She shared Mom’s spirituality and faith. What a home run! 
 
For me, people sent by agencies were unsatisfactory, and expensive. So, I got online and joined Care.com to read postings from caregivers looking for clients. Pay attention to the way the caregivers communicate and spell in their postings. Clear, understandable communication, and the ability to write down information that can be read and understood, is important, especially in an emergency. 
 
I interviewed caregiver candidates at a local café, before or after lunch, over coffee or tea. This is inexpensive and a great opportunity for you and the candidate caregiver to ask and answer questions, and avoids giving out home address information to someone you haven’t met in person first. 
 
If you aren’t comfortable with the idea of interviewing people, it’s likely you have a confident, outgoing friend or family member who could join you and help with the interview. 
 
There are many CNA’s working in short-handed facilities, caring for up to 60 patients per shift, who would much prefer to give full and undivided attention to one person. They are out there. Try!
 
In addition to full ADA safety equipment installed by professionals in the bathroom and shower, the safety protocols I developed, that all of us followed, resulted in Mom never falling. The extent and level of our care exceeded that of a Skilled Nursing Facility. No, it wasn’t easy. But what we all accomplished together: Mom, the caregivers, the personal trainer, and me, was very satisfying. 
 
Thankfully, Mom's life was far from being the equivalent of a neglected potted plant in a short-handed facility with constant turnover, wearing soiled briefs for hours, with the television blaring and the call button ignored. It took effort, and not everyone we hired worked out in the long run. But over time, it worked well and kept Mom’s life safe, interesting, connected, and enjoyable.
 
Like everything we do, by putting in the effort and working on it, we’ll get better at what we take on. 
 
I would gladly do it all again.
 
Mom won the last hand of progressive rummy we played, and offered me these comforting words as her life was drawing to a close: “I will always live in your heart”
 
With candles flickering, and classical music softly playing, Mom died at home as I held her hand.
 
I am so lucky, and will always be grateful, to be her son.

Op Rudy finally replied to a few posts. His/her replies read like those from someone who is doing a school research paper. No personal interest whatsoever.

Op did mention "90 y.o. mother" but nothing else. Sounds made up to me.

I think one's experience in a facility varies greatly, depending on what happens during the aging process and the person. My mom has lived in a very nice facility a seven minute walk from my house since 2013. She moved there with my father when she was 89 and still in relatively good health. My dad passed in 2015 and the facility services worked well during his passing. The hospital where he had tests is kitty-corner to the facility and he was able to come home from his hospital stay and live in the skilled nursing area where my mother could visit him until he passed. My mother's experience has been completely different. She remained in an independent living apartment once he was gone, then when COVID started we were no longer allowed in the facility. When I could hear that the isolation was hurting her, I asked for a part-time staff caregiver to visit with her 2 days a week. That helped and the caregiver continued once things opened up. Then, last fall, all part-time care-giver services were cancelled, even though many of the residents complained.

At the end of last month, my mother fell and her health began to rapidly decline. I asked to move her to assisted living, but that takes time and no other assistance was offered. So with no part-time care-givers to help. I was expected to care for her. They gave me a list of agencies I could call for help -- we were only allowed to use certified people otherwise we had to go through FBI check etc. -- but none worked out. So, there we were, paying over $4,000/month and I was doing 5-6 hours of care-giving a day. Finally, when it became apparent that my mother's decline was so great that even assisted living wouldn't work and they would have probably placed her in skilled nursing, I opted to bring her home. Due to COVID, all skilled nursing patients are isolated. If a patient is already there, fine, but to move my mother into isolation seemed a bit cruel to me, even bordering on elder abuse.

So I opted to enroll her in hospice and bring her home. She is in a hospital bed in our family room and is more alert than she was at the facility where she was basically sleeping. I did neglect to consult the contract that my parents signed regarding leaving the facility, so we have some negotiating to do with the exec director. But I'm much more relaxed now that I can be in charge of her care.

Even if we had the money we still would have believed staying in her own home would be best. It was obvious she was having memory and personality issues. I do not know how we would convince her to accept outside help. As it was we lied and told her I was homeless as the reason to get me in the house! NEVER do that! After about a month I realized things were a lot worse than we thought, dementia was part of the problem. She now has a very skewed view of my past and we fought over privacy and health concerns for about 3 years. She still will not believe I did not need to give up my life and move in with her, but at least she is now realizing she is glad I am there to help. (as her personal slave some days!)
Knowing all that, we would have moved her into memory care, but hindsight is 20/20 right? We were not operating with all the facts.

My answer may be different than others, it has been years since my parents died. When father was down with dementia my mother was fully able with hired help to keep my father at home. Plus, most of the family lived in the same town and would come over and help when needed. When at age 97 mother became unable to take care of herself, my brothers that lived in the same town found help around the clock to stay with mother at her home. Once, my older brother had mother try out a nice, assisted living facility, mother ended up calling my brother to come and get her, she wanted to stay at her home. Which she did till her death. The last two months of her life hospice came in and took care of mother again in her home. I lived about 3 hrs. away at that time and spent the last two weeks of her life with her. Let me add, I am a retired nurse, and worked in nursing homes, no way would I put my parents in one, they simply do not give good care. Pts lie in urine, feces, and not fed well. Often tied to chairs and left in the hallways for hours. I admit I have never worked in an AL facility which may give good care if the person can afford them. We all have to do what we feel is right and can live with ourselves later. No one has addressed if AL can help with chronic pain issues. Wishing the best to all those that are facing this decision.

Anyone who is working full time, maintaining their own home, trying to keep their relationship with their spouse alive well and find the time to visit with their children and grandchildren, isn't looking for something else to do. I barely have enough time and energy to stay on top of my own health. Taking on my mom, her health issues, house, yard, bills , etc.. almost killed me. It took almost 3 years to get everything sold and lined up for her move to assisted living.

I suppose if I were single, older and lonely, the thought of taking on the care of my mother might appeal to me on some level. I am none of those things and do not regret for one minute finding a lovely assisted living facility nearby for mom to live in. Fast forward 8 years and we have recently moved her into memory care where she is quickly running out of money. The next move will be to a nursing home and me managing a Millers Trust. It is exhausting and I'm just managing her care and finances...can't imagine caring for her full time.

It saddens me that as the end of our lives approach, it turns into nothing but a struggle to find somewhere to put us, to manage the money or lack there of and the family members who have to swallow the guilt of not having the time and patience to spend with elderly.

My fingers are crossed that I drop dead at a ripe old age after living independently so that my daughter doesn't have to deal with any of it! That is the lottery I want to win.

My aunt should be in a facility if some kind probably, but the nursing home she was sent to after her stroke is notorious and terrible - and it was the ONLY bed available. COVID has decimated nursing home staffing levels around here. I cannot send her hours away from her only family. We’d never be able to check on her welfare without being driven into exhaustion. I am debating trying to bring her home with me, but the situation is complicated. Sometimes there just aren’t any good nursing homes that will take Medicaid. The state of elder care in this country is terrible. I have problems also, though, with people who urge me to
just consign her to a terrible nursing home and then “run and play.” I have a very small family. I know I have limits, but if you can’t have your family what is the point of living?

I’m not sure I want to “run and play” at this point.

yes for sure in my case, but mine refused to hand me the power of attorney.

she was falling and soiling herself and refused to see it as time to go to one.

she used other's time and nothing was good enough for her.

i think it has to do with the elderly person's attitude , most burn out is from ungrateful parents or they get to the point of dementia and physical incapacity. We are mere people not trained medical personel and we are one person, not a team of health professionals. I believe one caregiver for a person who is medically and physically limited should not be encouraged.

Yes

In my case, if Covid wasn't around and money was no issue, I would've put my mom in the nursing home until she could walk again.

I'm the reason she isn't in the nursing home, but if the caregiving woes continue to drag on, I might be the reason she's in the nursing home.