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

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

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Absolutely! I would have taken the time to seek out a good facility and moved her in as soon as possible. We found her care to be way over our head, medications, physical therapy sessions, wound care etc., was , and is, way beyond our skill set. We found that in addition, her presence and entitled behavior caused a constant strain within our marriage and our relationship with our children. You can take care of your parents by making sure that they are in a good facility. They don't have to live with you for you to fulfill your wish to take good care of your parents. We have been unable to get her into a reasonable facility because of COVID and so we are still dealing with having her in our home. If you can get your loved one into a facility, do it quickly.

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It’s distressing when people imply that those of us who have placed our loved ones in facilities are selfish or don’t hold them in high regard. I couldn’t love my husband more and the decision has been heartbreaking and extremely painful. Please don’t add to the burdens of others.

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Thank you for writing this. My first husband, due to horrible circumstances, had to be placed in a long term care facility. The experience was the same-heartbreaking and extremely painful for me. The care givers at the facility were great.
I'm a care giver-again, and will do the best I can for my loved one.

Judge not, lest ye be judged; for those who have not done care giving.

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In response to ThomasY's post of Jan 13, EEEggads, Thomas, you've opened a hornets nest!! You say your mother has arthritis and is recovering from surgery. While I understand your love and devotion to your mother, does she get lost driving? Does she poop in the closet; try to jump from a moving vehicle? Does she leave the house at 2 AM? Probably not!! My advice to you is to keep an open mind. You don't know what the future holds. Promising someone (if, indeed you have done that) that you'd never place them in a care facility can only result in heartbreak for you both.

And Worriedspouse- if you cannot take care of someone, and object to placing them in a facility, exactly what DO you do with your LO?

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I don't recall writing that. But you have a point there -- it makes sense. How I wrote that escapes me.
I do know that my mom decided to quit driving about 4 years ago. That was a big relief. She was in an independent living apartment and her friends would switch off driving to happy hours. They would be back by 7:00 pm, and I always worried until I knew she back safe and sound.

I wish I would have kept her car. It was a nice old Acura Legend with low miles.
Best,
Thomas Y.

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Perhaps if I had been wealthy I’d have had my dad stay in a facility. He would have hated it though. It would have made my life simpler. But in my particular case since my dad and mom divorced when I was very young I didn’t have a close relationship with him. Taking care of him sort of gave us a bond that had been missing and I found out through the process how much he really loved me. It was very hard but I am glad I did it. I learned an awful lot by being a caregiver. First for my mother who had COPD, then for my husband who had crippling arthritis and a brain tumor, then eventually my dad who had dementia. I don’t know if I’ll put that skill set to use again, but I’m glad I was there for them and it was a fulfilling experience with all 3 of them.

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your mother, husband, father.

just incredible all the love you gave, give.

hugs!!
i wish for you to be happy. i hope now you can pour all that love into you.

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If I could go back in time, I would not have promised my mother that I would never put her into a facility. When she was in much better condition, she pressured me to make that promise to her. I was raised to be compliant and "easy to manage" (her words), so there I went once again to the rescue. Once that promise was made, it ended any other consideration unless my mother had herself reversed course and made the decision to find a retirement home/facility when the time came, thus relieving me of the burden of keeping the promise. She didn't do that. So I've learned my lesson ongoing. If I am able to outlive this promise, I will never again make another promise or vow of that magnitude to anyone. The two main promises/vows that I made were 1) my marriage vows and 2) my promise to my mother. Both have brought me much difficulty. The ex husband is gone and dead now, but I'm still fulfilling my promise to my mother. Pressuring or coercing someone to make a promise through guilt or sympathy or compassion will in the end most likely manifest as resentment.

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hugs to you!! :)
i wish you well! :)

i hope you find good solutions. :)

this is just my opinion:

i believe promises should be kept --- but not all promises.
if it turns out a promise was a bad idea (morally bad for you for example; destroying your life), then bad promises shouldn't be kept.

there is a promise that trumps that promise.
some sort of promise by the universe that trumps bad promises: namely to be kind to others AND yourself.

a loving mother doesn't want to destroy, eat up your life.
you weren't born for that purpose.

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I would not do it. As exhausting and life sucking as care-giving is, you have to put yourself in the shoes of your loved one. My mother was a kind, giving, and spunky lady with a heart of gold. She had dementia, but she knew all of us and thrived on family. To take her out of her home where she was most familiar and comfortable and put her in an environment of essentially strangers would have been cruel. In order to provide care for her, we had to exhaust all her finances for part time private care, then subsidize with in home part time Medicaid aides at the end. I was there for all the hours the aides weren't, including overnight. I lost the energy to do anything else, and emotionally it was gut wrenching, but still I have no regrets. This is my personal experience and I consider myself extremely lucky because I had a wonderful supportive husband, my mother did not have any physical disabilities other than cardio, and the round the clock caregiving went on for less than 2 years. Every situation is different, each loved one has different needs, so you have to really be able to meet ALL their needs in order to keep them at home. Know your limitations and follow your gut in making your decision. Remember that no decision is wrong or irreversible.

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i like your answer! :) :)
and i hope now you can give all that love/kindness to yourself :) :).

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Absolutely!

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When my mom was a younger widow- in her 80’s- she was still healthy then- I had tried A LOT to convince her to move into some of the beautiful assisted living facilities near us. She would tour them, comment that they were nice, and staunchly refused to move an inch. So looking back, I wish she had been open minded about that and courageous. Now she is still at home, and she is happy there. My sister and I provide full-time care for her. But it’s really hard, not the least of which is my husband who is now retired and is dying for me to be free to go with him and travel.

So looking back, I feel that I did everything OK, but I could not change her mind. And even now, she has this idea that she doesn’t want anyone in the house. So bringing in a caregiver is really really hard, we can’t do it until she becomes even less cognitively aware than she is right now.

At least from this experience, I have changed my own mind about my own future, and I intend to not live alone after I’m widowed, and to allow my adult children to help make those types of decisions for me. I definitely used to be one of those people that said, I will never put my parents in a facility. I don’t say that anymore. And I don’t want to be attached to the idea of living in my own home all my life. For me, it’s important that I give up that sense of ownership and trust that my adult daughters will make the best decisions they can when that time comes.

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Great reply. I too, do not want to be a burden to my children.

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Absolutely. My sisters had not drawn any clear lines about when the "right" time would be for residential care. By the time we realized that Mom was not at all independent and not at all capable of managing her home and medications her mind was just bad enough to be unable to to agree to changes. A few years earlier she would have accepted counsel and moved into one of the AL facilities in which some of her friends lived.

Instead, she remained in her home too long. By the time of her death the roof leaked, the electric was shot, plumbers were called in regularly. At the same time, Mom was having difficulty getting around even with a walker and an electric scooter, suffering falls, confused about her medications, and getting sick from food she had improperly prepared or stored. The 4 of us struggled to try to find repairmen for her old mobile home, ran out of luck and patience trying to hire housekeepers, and got very tired of calling the ambulance for her falls. We are now in our 70's and getting her 185 pounds off the floor was something we simply could no longer do as she became less able to do any help.

On the other hand, if she had gone into one of the fine AL facilities near her home, we would have visited her just as much, I would have taken her out to lunch just as often, the sister who lived further away would have still called her everyday. We would have enjoyed her long life much more if there had been staff to attend to the physical issues. In either of the facilities she might have chosen the transition to nursing care would have been a seamless change when it was required.

Another important point is that we would have gone through cleaning out her home and storage units years earlier when we were physically much more able to do so. The months we spent cleaning out her things after her death were filled with a lot of stress and physical strain that we were no longer able to deal with. Five years earlier would have made a huge difference.

Most of all, I think Mom would have been much happier to be in a facility with friends and activities. Our visits might have been greeted with much more joy if each visit did not begin with "I don't understand, but this is not working. Could you fix it?" Even during the lockdown, I think she might have been happier in a place where she would have at least seen staff members. We would have visited through the windows (both facilities are single story; neither facility had problems with COVID), just as we did at her home. She was lonely at her home after she quit driving and we simply could not provide her with all the companionship she had formerly had with her friends. I am certain she would have been happier if she had gone into AL with them.

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Yes. It was very hard on me both physically and mentally. I wouldn't wish what I had to go through on anyone and it just got worse and worse. Also, my health has suffered because of the stress mostly but I was not able to leave my mother alone with her husband, they fought like cats and dogs over nothing. This was she knew who he was and me for that matter. Then it got to the point I couldn't even leave for half an hour. Her husband's dementia got worse fast and they both would panic if I left. There was always a crisis (in their minds) when I returned. I am still dealing with guilt over not being more capable of caring for them both. I just lost my mother and sometimes I feel if I had put her in a nursing home sooner (if I could have) she might still be alive. But I can't do that to myself. So, as I said, I wouldn't wish what I/we went through on anyone.

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My mom is a very private and introverted person who cannot live alone or care for herself. I told her that we were there to live with her but where we went, she had to go too. She agreed and then she started a 2 week shakedown trip in a lovely RV where she had privacy and our care. 1 week in she said “leave me here”. We were 2 hours from her home and since we had friends in the area we were in, she chose a AL apartment that she loved and loves. She has been there 15 months and in that period of time, she has enjoyed her freedom, her privacy and her friends and when she doesn’t want to be bothered, she can nap whenever she wants. Over the last 3 months, she has resisted caring for herself (showers and going to meals). I got her a helper from 2-6 who showers her 3 times a week, fixes her hair and walks her to events and the dinner meal. I have the other 2 meals delivered to her apartment and found that she likes to eat with her fingers (she won’t do this in the dining hall). So I have ordered her dinner meal to be cut into bite size pieces before she gets it. IT. Takes, a. Village! I am grateful that mom has wonderful care, has good meals and socialization. Her doctor visits her monthly. I have alexa show to drop in. I got her phone switched to Mint Mobile at 15.00 month and I zip tied it to the charger. She has a IPhone and I set it to only ring for people in her contacts and the others are silent (cuts down on her frustrating spam calls). AND I found that I can have the iPhone automatically answer so she doesn’t have to find it or touch it. I have blink cameras in the apartment so I can see how she is doing. She thinks they are speakers. We are a praying family and this was not what we thought was going to happen. I believe God slow-walked us to this place and mom is happier and more content with the simple life she has now. We sold her home and everyone got what they wanted and no one wanted the same thing! When mom passes, the division of “stuff” has been done and her home is supporting her AL. We feel blessed that this is the way it worked out since we were going to live with mom even though it was frustrating because she was in denial of her abilities! The staff loves her and are attentive and caring. It is a small place of 85 beds. We have done the live in and the AL and AL worked better for us.

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NO. I would rather have someone come to our home to help out if I had the finacial means. Resentment can be worked on, but I know once my mother is no longer with us, I will not have any regrets concerning her care. I know I am doing the best I can with her.

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There are so many ups and downs, good times and bad, and very bad in a day with my mom. I've been caring for her with Dementia for the past two years. I used to think my adopted brother was making her crazy, but now realize it was her health and not him going downhill. He moved to another state leaving me with the decision to care for her in our home or place her. I've learned more about medicare/medicade/long term care, and trust funds than I ever thought I'd need. I am still waiting for that "day" I place her permanently, but till then we take advantage of her calm "good" days and manage with the bad days. We have locked gates, deadbolts that she tries to open with the silverware, fear of what she will do to the house if we leave, even to go shopping. Her day is coming and I will miss her but will not miss the bad days and the stress I have taken on. If I hadn't been in the middle of a divorce at the same time as her needing me she definitely would have been placed. My ex did not understand she needed someone with her 24/7. My life is forever changed because of the last two years. I have become a new person and sometimes I don't like this person I've become but I'm learning to be more patient and understanding of something she has no control over. The brain is a very interesting thing, not to be messed with.

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I too am going through a divorce and am living with Mom caring for her 24/7. No dementia yet but she’s got osteoporosis and suffered a back fracture. She doesn’t want to get out of bed without me helping her to the bathroom. So I’m awakened all hours of the night and on call all day. I know she didn’t choose this but I never thought this would be my life.

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Until nursing home assisted living make their facilities safety has or will change I would not recommend seniors to go there. For the reason listed below.
COVID-19 tore through long-term care facilities across the country, accounting for a third of coronavirus deaths during the first year of the pandemic. Tragic tales of deaths due to problems with testing, personal protective equipment and infection control emerged at state veterans’ homes in Massachusetts, New Jersey, and Texas.
The inspector general’s report on the VA Illiana Health Care System in Danville is the first to publicly detail extensive breakdowns at a facility operated by the U.S. Department of Veterans Affairs. The agency runs a system of 134 nursing homes that serve roughly 9,000 veterans a day across 46 states, the District of C
An examination by the Government Accountability Office in June found there were 3,944 cases and 327 deaths among residents of VA nursing homes from March 2020 through mid-February. The cumulative case rate among residents was 17% and the death rate was 1%.
Those numbers are miniscule compared to nursing homes nationwide, where researchers estimate there were 592,629 cases and 118,335 deaths last year. The death rate among long-term care residents as of March was 8%, according to the COVID Tracking Project

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I have already planned for my future life being cared for in a very pleasant local assisted living/memory care/skilled nursing facility.

The setting I have chosen was a wonderful home during my mother’s 5 1/2 final years, and also served two of her younger sisters and her brother in law.

If ANYONE thinks that good care in a residential care setting means “without the burden of caregiving”, they will either be in for a rude awakening or will be abandoning their “LO” to the “easy out”.

I was at the nursing home every day, twice every Sunday, while my mother lived there, and was working 35 hours a week myself.

My mother THRIVED there. Except that Covid ruined lives for everyone who experienced it first hand, her baby sister, my current LO in residential care, would have continued to be comfortable until her own passing.

Nothing about caring for an elderly human being who is fully incontinent, non-verbal in dementia, unable to do the most simple independent human actions, nothing, is joyful or pleasant or fulfilling as a full time life style.

Out of love and respect and admiration, some adults successfully CHOOSE to care for elderly or otherwise severely disabled family members. That type of CHOICE can work.

If the “choice” is made by anyone other than the caregiver in that sort of situation, family should expect “anger, frustration and resentment”.

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...i have a lot of compassion for us - and for our LOs.

...i also (please understand i'm not talking about all cases, just some) feel that some of our LOs should have planned better for old age.

old age has been going on forever.
it is not a surprise - not something that suddenly happens and they had no idea.

i feel some of our elderly LOs should have planned better, instead of putting us (adult children) in difficult situations.

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My mother's plan was to do exactly what she wants regardless of how it affects others. She is 94 and believes that gives her carte blanche to do or say anything. (She has told us that). She refuses to hire someone full time to care for her. Fires them for trivial things "She didn't know how to make pudding". Sometimes, our LOs make it difficult to help them

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Definitely not while Covid is rampant. Elderly here have been confined to their rooms for the past three weeks with no end in sight. My deaf father cannot not hear ( his hearing aids were lost a month ago and have yet to be replaced ( covid) and staff doesn’t write anything down for him . He is a very smart man but it is difficult when he can’t hear. The previously active people are waning in solitary with no exercise or visitors. Staff has Covid so they are bringing in anyone who is still standing. Unreal world. And this is supposed to be one of the best around!

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Are you asking for yourself or for a college assignment?

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it's indeed a little weird that OP disappeared.

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NEVER!!! The amount of neglect and abuse in many of these homes is off the chart!

My sister was forced into a home against her will. She had dementia, but was the sweetest person you could ever know! She lost the ability to speak clearly and walk after repeated falls when she was there. I found out they were drugging her and reported it to her doctor. The doctor said take her off these sedatives immediately. They ignored the doctors request denying that they received it. The doctor sent it again and they still denied getting it. So I went to the doctors office and got a hard copy and handed to them. When they took her off the drugs she recovered.

But during the lockdowns they put my sister on hospice. I asked what is wrong, is she dying. They said NO, this is just to get her more care. Hospice then decided it was time for her to die! They denied her basic care ...no food, no water! I did not find out until it was too late! They killed my sister!

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Never, may he rip 🙏 🕊, in Illinois they are understaffed and don't care about the poor residents. It's all about $$, Drs.too all about$$. Iam so sorry 😞 my husband went through the terrible care, in 4 different nursing homes and rehab centers. Only 1 of 5 was good, A religious one. Nursing home. So just beware 😏 always check them out for complaints.

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I haven't read any of the comments, but from this guy's perspective no, I would not put my mom in a facility. She's not at that stage yet. It'll have to be extremely needed before I'll consider a facility and I mean extremely needed. I won't do it before then though.

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I was impressed that , being a son, you wouldn’t put your mom in a home. I am the daughter in law and it saddens me that my 2 brother in laws want their mom placed just so they don’t have to do anything.I took care of my parents until their death and I want my husband and I to do it for his mom.

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We have been dealing with "Mom" issues for many years. She is 94 years old and until recently, lived in her own home with sporadic aides. She has mobility issues, incontinence, severely hard of hearing (refuses to wear her hearing aides), is addicted to opiates and ambien (thanks to her primary doctor) and more. She does not want to pay for services but her assets are too great for her to be eligible for social services. I live out of state but until December 1, I had spent two years near her. I actually took a job near her to do this but left my house, children, spouse etc. to do so.

On December 3, Mom fell. Ended up in the hospital. Then a rehab facility. Then to a beautiful assisted living which she agreed to as the plan after rehab. She lasted less than one day and then wanted "out"!. Unfortunately she tested positive for covid and was transferred to a skilled nursing facility. She did not have to leave the AL but refused to isolate so they transferred her to a covid unit where she could get out of her room.

I have been called repeatedly to take her out of the SNF unit. She has demanded that I care for her in her home and threatens to take a taxi home. I am in her home now. I left my home so I could be here to support her transition to AL. Not enough for her. My siblings, who live closer, are separating themselves from her. This is truly an untenable situation. I do not feel capable, in my 60's. to provide the extensive care she needs.

My mother is coherent and appears to have good mental health. She is, however, a hoarder and an addict. She has had a fire in her home and fires aides at a drop of a hat. (one because she was fat and would eat too much).

What to do?!? Does anyone know of a legal reason I can keep her in assisted living? She is a hairsbreadth away from requiring nursing home care. I would prefer AL if possible. Please, I need advice.

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This is actually a new question, not a reply to the OP. Please post it again as your own question. Margaret

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No . I would not have put my husband in a care home. Taking care of him during his battle with alzheimer' s disease was the hardest thing that I have ever done, but I am glad that I kept him at home. He would have felt lost and abandoned in a care home and I would have never been able to forget that I left him there to wonder where I went. This being said, he was rather easy to care for given the nature of his illness and I had the full support of all our children and grand children. I do understand why someone would have found it necessary to use a care home. In fact I would have used one if he had become a danger to himself or me.

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Simply put, yes.

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I still would have cared for her at home, but I would have brought in help sooner. I was scared, because our situation started at the same time as the pandemic.

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I have no regrets when Mom was admitted to a nursing home. After a fall during the night she had a complete fracture to her left upper arm and a pelvic break as well. I was working in Alaska and resigned my position to return to Louisiana to assist in her care. Mom was a handful to say the least while in the hospital, she had a psychosis about being in a hospital bed. She would usually settle down to normal once returning home though. She had early dementia that progressed rapidly after this fall and hospitalization and rarely slept more than 15 minutes before getting up to roam. I stayed with my parents for 6 wks before just giving out. Dad was NO HELP at all. Mom was 79, Dad was 82 at that time. Of course he was resistant to LTC, saying he told Mom he would NEVER do that to her. Well, I had to have some sort of rest, so I began to stay at my sisters home about 2 miles away. I would return to help mom about 8am and stay until 8pm. After 4 wks Dad began to say he was going to have to consider placing Mom in LTC. He couldn't hold up to her all night rambling either. Dad is a verbal abuser as well. We admitted Mom to LTC in our small town with sadness. She adjusted quickly. No one stopped her from roaming the halls all night long. She always has someone to chat with. She fought like a tiger when she got a bath, but did get used to that. Her CNA's loved her as she was quick witted and funny. She has so much freedom there, not having to cook or clean or listen to Dad berate her. It's been almost 2 yrs since she passed but the staff always speak to us when they see us saying how they miss Mom. She was a treasure! No regrets for her being in our local hometown nursing home.

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Your reply was a much needed point of view. Thank you.

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Rudy, who asked this question, was a brand new poster who provided no profile information. Rudy has never come back to the thread, and Rudy’s profile says no ‘likes’, no ‘votes’, no ‘answers’. So, no interest in following up any of the answers. This thread could stop.

Everyone is agreed that it all depends on people, beliefs, and circumstances – there is no -one size fits all’ answer. Why waste people’s time?

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On one level I agree with you, but on another this could be categorized as 'food for thought'...a chance to reflect and I will be interested to read the other replies. For me, looking back, long-distance (and 'behind-the-scenes', cuz mom was stubborn and suspicious and narcissistic!) caregiving of my declining mom was fraught with these issues: not enough funds/pre-planning for topnotch placement and her determination to Never leave her home coupled with me being an only child, no relatives to lean on, living 4 states away, etc. made for a lot of juggling. In hindsight, in a 'perfect' scenario for my mom's situation, I would have hired local help to check on her regularly, then when her precipitous crash happened let the State place her, unfortunately. A degree of 'Grace' came along, where her defining event (crash), major stroke, took her the very day before I was to begin interviewing places that could take her directly from the hospital since she was never going to walk again, never going to be able to live on her own, at home, again. This was a stark example of how one's admirable independent spirit can turn into self-defeating stubbornness with sad results.

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Probably, I would have done it the same way but it was HARD and I can't really count the costs of keeping her in her own home.

If I were going to advise someone about this, the first thing I would suggest is for the person who is thinking about being the caregiver to take a CNA course or at least devour the available youtubes about the skills tests. It gives a person a pretty detailed summery of just what the job IS! Even if you hire people to help, you know how to assess their job performance.

I honestly believe that keeping Mom at home was more expensive than the best local nursing home. It took a toll on my health and relationships outside of caregiving. It has been 12 years and my husband is only now telling me how abandoned he felt. I thank him with all my heart for riding it out.

Going with a facility changes everything. You really need to be a presence as an advocate for your loved one, but you can be a son/daughter instead of trying to reinvent the wheel every damn day.

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So your husband bottled up his feelings for 12 years?

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I would not put either of my parents in a facility especially after spending months in a few facilities with my mom after a couple of strokes. My parents never turned their back on me and I wouldn't do it to them. I have to admit that I couldn't have done it without my hubby. In the beginning there were many times I broke down and wanted to give up but that wasn't an option. My dad was out of control and bad like a teenager and my mom paralyzed, no speech with the mind of a child almost. This all started in 2011 and my dad did pass in 2017. It's 2022 and mom has come a long way. We study and practice with her and make it fun. Even during quarantine we are happy and doing great. I still get frustrated and mad but I just walk away sometimes and count to 10 backwards. I think that's normal for many people. It does help that my mom is the sweetest person I've ever met. All her friends and family say the same. If my parents were horrible parents I probably would have left them in a facility. Dad was a horrible patient but a awesome father. I've never been so poor but thats ok. I'm so humbled now and frugal lol. I mademistakes but just keep going. A friend of mine immediately put her mother in a facility and I understand. She was not a good mom and her mom could speak and walk so she can defend herself. A doctor friend of mine said he regretted putting his father in a facility because all his beautiful teeth were pulled in no time. PEOPLE, the nurse's are not responsible for brushing your teeth, you are. It's not for everyone. Sometimes antidepressants are very handy for patient and caregiver. I would have rather hire someone to help so I could return to work but nobody thought she would live this long, even her doctors. So I decided to stay home with her. I don't think she would be so happy if I was working anyway.

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Sennytrae, thank you for saying how sweet your Mom is. I am truly glad for you. Unfortunately, it is MUCH HARDER if a person’s Mom is NOT so sweet. And our friends and family agree. Thank you for posting.

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Hi. 10000% yes!!! When my mom first moved in with my husband and I, it was like she was on vacation. It’s taken it’s toll on me and my household.
Sadly, I’m solely responsible for her. I should have placed her into an assisted living facility.

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

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