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

hi! :)

no, i wouldn’t put my LOs in a facility, if i could go back in time. in my family we’ll try to avoid facilities (instead i hired private caregivers at home). where i live, facilities are awful. but my LOs themselves are very willing to go to a facility, if it’s necessary in the future: we realize there are situations where it’s simply necessary.

regarding anger, frustration of taking care of my LOs, rather than satisfaction of taking care of them…

…in my case, there are 2 reasons i’m angry. (1) abusive elderly parent towards me (nice towards everyone else). i’ve been the target my whole life. (2) i have siblings who do nothing to help.

regarding helping, i wanted to. that wasn’t a problem. i would never have guessed my siblings wanted to do nothing.

regarding abuse, every contact is used as an opportunity to abuse me (phone call, whatever). some people feel good when they make their target feel miserable/stressed/unhappy.

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i’ve managed to shift things around a bit, so i can focus on my life.
…i found better caregivers. so far they’re doing a great job :).
…i reduced contact with my abusive parent.

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examples that i know of, where people don’t feel angry/etc…the elderly parents are kind, loving, grateful…AND the problems (medical/whatever) aren’t too numerous to drown the adult child’s life.

even a sweet parent, if there are soooo many problems, it becomes difficult to just feel “satisfaction” caring for them.
(no matter what form the caring takes: advocating for LO in a facility; making sure in-home care is doing the job right; or caring for LO oneself at home…)…
…if the problems get soooo numerous, it’s hard to feel only “satisfaction”

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if i could go back in time, what would i do?

hmmm…
actually i would just be in the moment right now, and warn myself right now (in other words i would “travel in time” to be right here, right now).

nowhere…
now here…

i’d say to myself:
be careful. live your life :).

hugs!!

I just lost my mother to a sibling, I was the caregiver they took her to a doctor appointment then to a assistant living facility on me. I feel like a wolf with his foot in a steel trap, beyond anguished and powerless. I rode out some tough times with my mother during this journey but even at this stage we were in a good place, she was grateful for the care and company, very loving. Now I think of her and how she is scared shitless in some facility, surrounded by strangers and it's driving me crazy.

I've had my parents living in Assisted Living since 2014, in Independent Living before that since 2011, and now Memory Care AL since 2019 for my mother. If I could go back and do things differently by caring for them at home instead, I would not. Why? Because they have been given a very good experience in IL, AL and now in Memory Care. I feel that my father was given excellent daily physical therapy while in AL after his broken hip which allowed him to walk again, somewhat, before he passed away (of a brain tumor) in 2015. He liked AL life and played cards with the men there. My mother moved into a smaller apartment afterward but continued living there; her friends rallied around her when she became a widow and helped her through the grief; got her out of her apartment & back into the dining room & the activities and entertainment. 2 bouts of pneumonia were caught early by the attentive staff and she recovered from each; had she not been in AL, I feel like she would have died by now (she's 95 on the 20th). In Memory Care nowadays with advanced dementia, she has peers to socialize with and thinks she's being taken out to dinner nightly and to various places for entertainment (which isn't true). So she's been quite happy about that lately.

Had she been living with me, she'd have no socialization b/c DH & I have worked up until recently; she'd have been isolated and alone most of the time. Plus she has too many health issues which I'm not qualified (or interested in) dealing with. Not everyone is a natural caregiver and that's okay too.

People insist that homecare is best but it's not a one size fits all scenario. My uncle had 'caregivers' come into his home and they robbed him blind; one was caught red handed with a huge suitcase (his) filled to the brim with his silver & china, putting it in the backseat of her car. He was neglected to the point of dehydration and not being fed, too. No situation is perfect. The pros & cons have to be weighed first in order to make an informed decision.

You're going to get quite a few skewed views about the 'horrors' of Assisted Living here, and comments from our resident nursing home haters who have no firsthand experience with them, so beware. Make sure you listen to commenters who are giving you advice based on firsthand experience & aren't just emotional cries without basis or full disclosure. That's important to note, in my opinion.

Best of luck to you!

RudyNJ, easier said then done. If a parent(s) say no to moving into a safer one level home, there isn't anything one can do.

It wasn't until after my Mom [98] had passed that I finally realized why she refused to move. Mom had lost quite a bit of her eyesight, so remaining in a house that she and Dad had lived in for 30 years, Mom could find her way around with limited sight. If only she would have said something. That would have reduced the number of heated conversations about why they should move.

Dad would have moved in a New York minute, as he knew the house was way too much for him to maintain, and he knew that all the stairs would be hazardous for them.

So, we need to step into their shoes and see from their view point.

And even if one's parent(s) was living in a senior facility, there are still all those doctor appointments..... shopping for items they need.... getting phone calls from the facility that a parent had fallen and/or being taken to the hospital via 911.... being Power of Attorney, thus managing their financials.... the list goes on and on.

Very often when the decision is made for placement outside of the home for care needs...when 24 hour care/supervision is needed or fecal incontinence develops...families 'wish they had done it sooner.' The initial transition is hard for everyone, a good facility will help all of you with that...and then family gets to be family as well as managing care.

Well, that's a trick question. Appropriate facility? We cared for my wife's grandmother, her father, her mother, and now, my mother. My dad was the king of the nursing home and loved it. None of these other folks could have stayed there more than two hours. Assisted living looks great from the outside, but often ends up not the right choice when you start realizing what kinds of need have to be met. Yeah, we'd like our lives back, but these are the people who raised us, and it is hard not to care about their needs.

Nothing would make me or my Mom happier to have been able to afford an Assisted Living facility. It would have been so nice for us both to go to one, as I am disabled also. What a wonderful life it would have been for us. No yard work, no house repairs, someone else to cook, staff to rely on for assistance, and no more driving.

But, never in a million years could we have afforded even a month in one, so going back in time would take us back to a time where we could both walk better. But, it would never, ever take us back to a time where either one of us could afford that kind of care.

NO. I'm so glad that I haven't done that. The aides come in and give me a break but my Father died in my home and God willing, my Mother will die here as well.
And if I'm really lucky, I'll die here.

I was VERY lucky. My Husband was compliant, gentle, good natured and NEVER had an outburst of anger or violence.
I decided early on that IF it became unsafe for ME to care for him at home I would have to place him and
If it became unsafe for HIM for me to care for him at home I would place him.
With the help of Hospice I got the equipment that I needed so it was never an issue of safety.
Everyone has a "break point" where they can not care for someone any longer. It could be physical , mental, emotional safety they are all valid reasons to make the decision to place someone.
I do not think it is a "failure" I think it is recognizing that the person you are caring for needs more care than you can give. It is a brave, kind, loving person that can come to that decision and make peace with it.

No one is going to spend their time writing glowing reviews of the joys of caring for your elderly parent /in-law, etc. The reason we seek support groups like this is because we are struggling, We are often burned out, frustrated and with no one to vent to (because most of our family and friends can’t relate or are done listening). Of course there are some joys but let’s be realistic….the little free time we have isn’t going to spent telling everyone how joyful caregiving is.

I wouldn’t have gone the facility way, but it was because my M was in the end stages of dying from cancer when she left hospital and I knew I could cope 24/7 for the duration – which was four weeks. My ex-husband also died from cancer, but chose to go to a facility because he didn’t want personal care to end up involving family members. Our daughters were with him the night he died. I think everyone needs to keep an open mind, and it depends very much on the circumstances.

Yes l would as soon as possible because l cannot deal with her anger and her mood swings, none of which are in a good mood

If I had to take my caregiving journey over again with my husband, I would, no questions asked. And I would also continue to honor his wishes to stay at home.
I think the only thing I would do different would be to seek support from my wonderful caregivers support group much sooner. I waited until I was at my breaking point before I sought them out. They were a lifesaver for me, so much so that I remain a part of the group despite my husband being dead for almost a year and a half now.
So please seek out a support group in your area. Most are meeting on Zoom now because of Covid, but there's nothing better than being able to share with others that are either going through, or have been through similar things as you. It's a lifeline that will give you the strength and courage to keep on keeping on, whether you keep your loved one at home or decide to place them.
God bless you all.

I would never place my Mom in a facility.
That's because I love my Mother.

I would take a much different road, if I knew then what I know now with my parents!

I would have pushed MUCH harder for them to take care of themselves and encouraged them to get their major physical issues taken care of much sooner rather than waiting until they were practically crippled. My mom should have had her knees replaced 10 years before she did!

I would have NOT done soooo much for them that they should have been doing for themselves (if they'd taken care of themselves they would have been capable) or had them hire someone to help them.

I would have encouraged them to sell their house and go into independent senior housing of some sort. Then transition to assisted living when necessary.

Moving into my house would be off the table.

Caregiving is a choice and a lifestyle. Most caregivers have huge hearts with ability to share their time and talents with those in need. However, most of us tend to forget that there is a limit on how much time and effort are sustainable long term. We also tend to overestimate our abilities when the caregiving tasks become overwhelming - and our dear one needs more care than we can give. That is the point of burnout and the need for professional/residential care.

So, the answer to your questions is - yes! I would still caregive, but also make sure to have plenty of other help involved.

Yes…this was a decision I made in my moms best interest…I chose to ignore what I wanted..which was to pretend she was ok living alone …it makes me think of people who keep a sick pained elderly dog alive …thats not in the dogs best interest..we do it to keep our anxiety level down..I worked through the anxiety, the sadness of my mom not being the woman she used to be. It is a process. Her assisted living facility gives her people her own age to chat with, activities geared to her mental status and hot meals everyday. She loves her little “apartment”..she enjoys the staff and feels reassured a nurse is in the building. I sleep better at night..

It’s so difficult to answer that question because I am in the midst of caregiving now. My bride of 31 years lives with early and sudden onset of Alzheimer’s (66 yo @ diagnosis). We were seeing signs at age 62, but no definitive proof.

Today she still knows who I am, with occasional wonder of the man in the room. But she still knows me. Yet she cannot name all of our 5 children. Sometimes she knows 2, 3, 1, or none of them from pictures. The progression is quick for Jan.

The issues of caregiving are arduous. Am I feeding, bathing and medicating, properly? While those questions are appropriate the more important is, “Am I showing her the love and care that I promised her I would on 12/1/90?” That love can be shown rather she lives at home with me or in a memory care facility. But for her current level of needed care, she can receive that at home.

Will I place her in a MC facility? Likely yes, at some point in time. But I’ll fight against that day as long as I can. Don’t get me wrong, there are days I question how much longer I can do this. In fact, I think that question happens in my mind many times everyday. But I breath, pray, and ask God, for patience and strength. I often fail in both.

If it wasn’t for a wonderful caregiving partner named Audra, I would likely had to place my bride months ago. But this wonderful lady, who I found through an agency has treated Jan with care, comfort and friendship. Her help allows me times to go out for the day and read, have, coffee, exercise, go to a movie. What ever I want to do. Without this the famous burnout would have happened months ago.

As I said, my preference is to keep my love at home as long as I can, but there is certainly nothing wrong with placement. Each scenario is different. No two cases are alike. Factors like:
Expenses - Can you afford in home or facility care?
Your age and heath - Are you physically capable of caring for your loved one at home?
Knowledge - Do you know how to handle his/her medical and personal hygiene needs?
Patience - Can you remain calm in those tough moments?

All these and many more questions play a part in the needed care for your loved one AND YOU.

I cry a lot, knowing that my bride doesn’t have the cognitive abilities she used to and that she may very well need more skilled care in the future. But I will do my best, for as long as I can, to keep her home. At the same time, there is certainly nothing wrong with making that placement today, if needed.

I hope this helps.

Am currently taking care if my 96 year old mother 24/7 and I have the option of putting her in a home especially since my brothers and sisters appreciate that it could be too much for me. But Definitely NO - I can never ever put her in a Home as she can never have the dedication and care and above all The Tender love I give her.

If I could go back in time I would not have placed my mom in a facility. My mom was pretty much my other half and bestfriend so it was a no brainer that I would take care of her in the event she could no longer care for herself. Sacrifices were made and I was on an emotional rollercoaster at times during my caregiver journey, but I thank God I made that choice. Before her passing, I took care of her for about 2 decades, so I roughly started at 20. Based on my experience with hospitals, rehabs, subacute facilities, and etc....it is not in the best interest to leave your loved ones unaccompanied if you can help it. Thank God I was able to be with my mom all day and night until visiting hours were over. You would have thought I worked there, but I witnessed way too much neglect, and lack of responsibility. Our elders appear forgotten and invisible and not only does it sadden me, it angers me. I am a Golden Ager lover who has always seen the beauty in elderly people from the time I was a child. I advocate for all of them, and even when I would be wherever my mom was placed at the time, I would help her roommate or anyone needing assistance. Anyone with experience knows the system is truly not geared towards patient care, but "patient cash." In addition, if your parent is completely dependent and needs 24 hr care, it's best to have someone there while they are being treated at these facilities if you have the means. We could not afford an aide, so I chose to delay my pursuits while caring for her. I learned a lot along the way and I pretty much felt like an unlicensed nurse, considering my mom was on a lot of meds, was wheelchair bound, unable to walk, had a tracheostomy, feeding tube, etc etc...so high risk patients requiring hefty demands and a time sensitive schedule is pretty serious. I love the fact that you mentioned the key word, "financial ability." If funds were available, I would have hired home health aides to continue to implement the lifestyle my mom became accustomed to. She had a weekly routine, and it was pretty cool doing our own physical therapy with upbeat music, we would go to the stores every other day, play games, go to the movies, plays, any all outings. I personally believe one's condition should not limit their ability to live and be surrounded by positivity, happiness, and love. Love the best way you can and be sure to pray while caring because God never said we will be free from pain, but he promised to never forsake us and that he will give us the strength to handle what comes our way. Pain is inevitable, but suffering is optional.

My grandma is cared for at home. during her early stages it was hard. Unwanted thoughts and words would often come in hard times. I would yell at her after the 26th time in the middle of a working night when she'd scream out of her lungs that she needed help out of the potty (she'd yell every member of the family's full name and offer payment. and then she'd start "crying" w/out tears, then laugh, it was bizzare), sometimes she would start a small fire in the kitchen. It was hard EXTREMELY hard, but putting her in a home was just not an option, I could not bare the thought of her away from home. I later found out about day programs to enroll alzheimer patients, COVID unfortunately put a stop that. Also gadget toys and coloring books helped ease my grandma somedays, she specially enjoyed the poppers for hours.

If I had to do it all over again, Id enroll her in day program sooner but not a home. Facilities show a lot of neglect, unless you're paying for private care, your elder will not recive the attention they need.

I wouldn’t have put my dad in a facility, but if money was no object I would have hired night help for myself. I would not have traded the time I and my kids had with him but it would have been helpful to not have carried the burden alone and I would have slept better/had less anxiety and been more able to care for everyone!

Some might find it easy to judge others, but we all walk in our own shoes and have to make these decisions based on so many factors: our abilities or the lack thereof to care for elderly parents at home, be that financial ability, physical, family demands or our psychological/mental health reservoir to handle it; what is in the best interests of family, you, your spouse and kids as well as the level of care your parent(s) may require (what is in their best interests medically, physically and given their psychological/mental status); what the past relationship was (in my case, I was a foster kid) and what the future portends. OR a combo of all of the above.

I am in awe of people who can care for their elderly parent 24/7 at home no matter the level of medical, physical or psychological demands (or the behavior issues) of their parent(s)/loved one AND who can do this with or without outside assistance AND who can do this with grace, love, confidence, who do it well and who do not lose themselves or become resentful in the process. I am not one of those people, but I an confident and resolved with my decision to have placed my mom in a nursing home over a year ago.

Sending love and prayers to all navigating these issues and hope all can find resolution and confidence in the choices we each have to make for ourselves, our families and our parent(s)/loved ones.

Wouldn't it have been great if I could have only kept my wife at home from onset to death? But once the demands outweighed my ability to properly care for her at home, choices became few and difficult. Caring beyond one's ability can not only result in burnout, but compassion fatigue, where the caregiver feels OBLIGATED to continue to care, even at the expense of his/her own health. I feel badly for those families who cannot afford the cost of a care facility. My experience was nothing but excellent. But I also commend them who are able to keep their LO at home for their strength, their resilience, and their commitment, as long as they have the energy and can provide safe, and necessary care without feeling obligated. I wish Medicare would pay for chronic long term care.

I would do it again. My physical and mental Heath was deteriorating. I couldn’t cope with the ups and downs. One day my husband would take his meds,t he next day refusing them. Weeks on end it would be Pepsi and ice cream. Next few weeks just ice cream or just watermelon.

I would have to go for a drive almost every day with him insisting on the drive. The tantrums like a child were getting worse.

Each person has their own story. I found it was best for me to put my husband in a Memory Care facility. It was also best for him since he would get the proper care I was unable to give him

If it's going to be done, the sooner the better so your LO can acclimate while they've not advanced too far into their disease. I'd suggest this even for a LO who has other issues as well and not even dementia. If the funds are there, do it.

Nobody ever said you have to sacrifice your life and old age to ensure another lives into old age with round-the-clock care provided by YOU.

This is the quickest way into the descent of your own health as I am discovering now with my own.

There is a philosophical question you have to answer for yourself and that is this: do I value that person's life more than my own?

Much of it has to do with finances, however that’s not the only reason people are placed in a facility. Some parents are harder to take care of than others. They are angrier and noncompliant. They will not allow help in the home, they will go days without sleeping, insisting you sit with them the whole time. You know they need to go to doctors they won’t go. Nothing you do for them is right in their eyes, constantly yelling at you and criticizing you . Yet on the other hand won’t let you out of their sight, not allowing you to go to your own doctors appointments, or go get food. People often think placing a loved one in a facility is the easy way out. I had to place my mother in a facility, that was the only way for her to get the help she needs. I wake up with guilt every day. I also wake up with resentment. Why does she have to be like she is, so noncompliant, leaving me with no alternative. Why wouldn’t she let help in several times when I tried? I am lucky that my mother has the means to also to have a personal caregiver with her. However even with that I micromanage everything. I have cameras in her room, I talk to the caregivers numerous times a day. I talk to the home care nurse that visits her a couple of times a week I talk to the doctors . I pick up her medication myself and take them to the facility because I don’t trust them not to make sure that she doesn’t run out. I take her meals because she’s never happy with what they serve. I bought her three different mattresses because she’s never satisfied with any of them. Two different beds because one was too high, and I felt she needed a hospital bed instead. I deal with Caregiver issues, i’m on my third agency at this point. In the last eight months my mother has been in three different facilities, the first was skilled nursing because memory care would not take her at that point because she was too difficult. First memory care just parked her in a room and didn’t provide any activities or structure, I Moved her to another memory care. While this facility is better at providing activities and structure, I definitely see that so many of the residents need a lot of care, too much really for the caregivers to be able to give. She’s in a relatively small facility with only 20 patients, however when you look at how much care most of them need, it seems overwhelming. I guess what I’m trying to say is that it is true but facilities have a hard time giving the proper care to so many patients with so many needs. However on the other hand there are some patients like my mother that will not allow help at home, that will not go to doctors, that are miserable at home as well. Bringing you down with them. You also have to realize you can’t look at every situation the same. While it’s true many here are doing it on their own, some people have more help than others. Some people have compliant parents. Some caregivers can afford help. Some caregivers are in better health than others. I think everyone would love to be able to stay home and take care of their loved ones and not put them in a facility. However sometimes it’s really not possible and it’s not the right thing for their own health either. No my mother is not happy at the facility. However she has gained 20 pounds, is getting bathed more regularly and has a personal caregiver with her for companionship. Every situation is different. People tend to believe that when you place a love one in a facility your life is easy, that you are suddenly free from it all, In reality it’s the last resort for most. And we have to live with the guilt on top of everything else. Just saying, the grass is always greener on the other side. Some people here tend bend over backwards to make those that place love ones feel like crap, as if we don’t love our loved ones as much as they do. Where I feel lucky that you can have them live with you and allow you to take care of them in the way they need.

Life is a trial and from hardship we can but surely grow... but even the tallest tree has its limits.
To never have tried would not sit well with me - yeah, I have all that (and more), but it is mostly directed at myself as it often reveals more about me than I care to admit. Strangely enough, I am grateful for such illumination (once I can see things in the clear light of day).

If we could go back in time and know what we do now, we would have taken more time to find the best facility for her needs. The bright, shiney, new facility we initially chose, turned out to be a nightmare and covid didnt help. Our pipe dream was to take her out of there and move her back home, which we did, in February, 2021, and pitch in as a family to provide all of her care. We QUICKLY discovered that we were not, in any way, qualified to give her the skilled care she needed 24/7. As well, we wouldve needed at least 4, rotating private nurses, which wouldve cost over $10,000 a month. Additionally, her home, which she no longer recognized, after 50 years of living there, would have to be renovated to make it safe and accessible for her. It was a lesson of epic proportion. We found another facility, farther away, but more suited for what her needs were and she has been there nearly a year. Is it what she wanted for her life, no. It is certainly not how we all pictured her final years. But, she is safe, clean, properly medicated and has all other essentials and kind people around her to help 24/7.

There are many different dementias
not everyone sweet compliant patient. My husband was very confused angry and aggressive.. doctors proved to be useless ‘try this Med.. try that … with some of them making his delusions hallucinations worse .. I was burning out quickly as the hired aids were not that useful and the whole house ‘on wheels’ morning and night. So I found best memory care home I could afford ..
they finally straightened out meds..
provided structured routines .. monitored care 24/7 , activities, lots people talk to .. not isolated in house. When he asked to go home I told him I couldn’t take good care of him at home and it was dangerous
situation at home ( it was .. can’t remember how many times ems called) my husband came to understand that was true and
trust the care he received. I was there everyday bringing favorite foods and treats … both he and I looked forward to visits … before pandemic we’d go outings every day
sadly he’s deceased now .. after only
2 and half years … in a way relieved he’s not suffering anymore … by the way it’s a mistake to think they don’t realize everything they’ve lost !!!
there are no good solutions to this illness everyone on their own with this .. but I am grateful I was able to care for my husband in a safe secure environment and be with him everyday … most of all we were able to continue to be husband and wife
with dignity !!!