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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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sameoldstory Jan 2022
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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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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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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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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Feelingguilty22 Jan 2022
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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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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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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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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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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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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Debstarr53 Jan 2022
Great reply. I too, do not want to be a burden to my children.
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Absolutely!
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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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bundleofjoy Jan 2022
i like your answer! :) :)
and i hope now you can give all that love/kindness to yourself :) :).
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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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bundleofjoy Jan 2022
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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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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bundleofjoy Jan 2022
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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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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ThomasY Jan 2022
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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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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Ariadnee Jan 2022
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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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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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 !!!
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Ariadnee Jan 2022
Thank you for writing this. Much appreciated.
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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.
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Donttestme Jan 2022
This is such a perfect answer for a very difficult situation.
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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).
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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.
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bundleofjoy Jan 2022
"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."

yes. hug!
i wish your mother and you well!! :)
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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?
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bundleofjoy Jan 2022
you asked:
"do I value that person's life more than my own?"

i personally think someone and their babies/children till age 18, is different.
(different from how i personally view things with our elderly parents).

----
regarding our elderly parents, i think:
there is nothing noble in sacrificing your life for your elderly parents.

i'm not saying, don't help your parents.
i'm saying, don't sacrifice your life.

that adult life (your life) must be lived to the fullest too.
no one (especially women, generation after generation) was given life, just to be sacrificed later - just to have their life stolen later.

LIVE A FULL LIFE, and let your children in turn also live a full life.
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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
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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.
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RedVanAnnie Jan 2022
Nicely said.
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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.
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bundleofjoy Jan 2022
i like your answer! :) :)

huge hugs of courage from me, to everyone!!
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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!
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ThomasY Jan 2022
Thank you. I envy the grace you have inside yourself. There are many others like you and I envy them for their grace and the simple peace they have made with life.
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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.
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CaregiverL Jan 2022
Unless you go to facility at different times..so you see & make sure loved one is taken care of. Hugs 🤗
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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.
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Feelingguilty22 Jan 2022
So true, there is a lot of neglect and worse. I love your response. I am praying every day. Thank you 😊
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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.
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CaregiverL Jan 2022
RMonique, You don’t feel burnt out? Does mom have other caregiver at home besides you…either private pay or from agency? Hugs 🤗
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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.
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Feelingguilty22 Jan 2022
God bless you. I am caring for my mom and I too wonder if I’m doing all I’m supposed to regarding meds, bathing, amount of exercise etc. I certainly wasn’t prepared for this either. I find myself in tears every day. Doesn’t help that my husband wants a divorce. But I guess God wants me here right now. Take care.
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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..
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