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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.
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rosadelima Jan 2022
Exactly!
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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.
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I would never place my Mom in a facility.
That's because I love my Mother.
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LoopyLoo Jan 2022
Good for you. Some people place a parent in a facility BECAUSE they love them.
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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.
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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
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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.
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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.
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PatsyN Jan 2022
Exactly. ❤.
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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.
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liladee Jan 2022
Wow, beautiful words of wisdom above. I never thought about a "break point" but I have reached it. After 14 years of caring for my husband - first with amnesia from a stroke and now Alzheimer's I no longer judge people who put loved ones in AL like I did! I also cared for my father with a trach at home. Very difficult. Glad I did that but my biggest regret is that my daughter (then 10 years) got less attention and was essentially living in an old folk's home with sick people. In hindsight yes I would have liked to have managed things better. I am now working on placing my husband with my daughter's (now 21) thoughtful and gentle help.
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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.
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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.
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Myownlife Jan 2022
Great answer, and I think it would be the same for us. I'm fairly sure we couldn't afford the "nice" ones, either.
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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.
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lealonnie1 Jan 2022
So if a parent is in Assisted Living or managed care, we children 'don't care about their needs'? To even suggest such a thing is beyond ludicrous, considering the amount of time and attention that is STILL devoted to their care when they're in AL!
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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.
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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.
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Grandmaofeight Jan 2022
Oh my gosh, yes! I literally spend at least 30-40 hours a week just helping my Mom, my Dad passed in September. For some reason I feel some people think you drop Mom or Dad off at assisted living and drive away forever. I don’t get why some people think people in my situation don’t love or care for their parents?

I am three years into this and haven’t even had a vacation because I won’t leave them alone.
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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!
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Ariadnee Jan 2022
Thank you so much for being the voice of reason here and consistantly calling people out on their less than informed posts.
I simply cannot fathom those throwing stones at us in the trenches, when it's patently obvious they are clueless about what it takes to be a caregiver in any capacity.
Otherwise, this is a very helpful forum, glad it's here.
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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.
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Chris52 Jan 2022
Bryan55, how about starting another thread with your own dilemma? It sounds as though you could use some support and guidance. You might not be powerless!
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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.

——
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.

——
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”

——
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!!
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sameoldstory Jan 2022
Hi Bundleofjoy,

I get it. I, too, have an abusive parent. I have one sibling who will not toalk to her any longer; another who assists but is very angry about it and it shows. My brother is dealing with his own serious and life limiting medical problems but, to Mom, they are insignificant compared to her needs.

It is difficult to find a balance. I, like you it seems, have lost years of my own life and compromised my own family in order to meet the needs of an ungrateful and demanding parent. I am finding my own footing now and it is difficult working through guilt imposed by mom and myself.

Please keep moving forward and thank you for pointing out that all parents are not loving, pleasant or grateful. It is hard on the psyche for sure.
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