Facility or home care? It is a personal choice. Misguided guilt should not cause anyone to make the wrong decision.

Lvnsm,

It’s tough. You can’t force him to go into assisted living. You can move as you say and hire a caregiver. That’s very expensive. You will have to crunch the numbers.

Caregiving is a mixed bag of emotions. Do whatever works best for you.

You are equally as important as the person that you are caring for.

They will adjust if you choose to no longer be a caregiver.

Best wishes to you and your dad.

I agree that everyone’s situation is unique and, so generalisation isn’t always helpful. Tomorrow mum and I are going to look at the proposed supported living place we have found that will help with her increasing needs. Over the past month since we first discussed this, I have borne the brunt of her rage, abuse, personal criticism, denial, anxiety, worry and so on. Whilst much of this is understandable given the changing circumstances she is facing, and I have tried to support her as best I can, it is important to consider the health of the existing caregiver too. I feel under intense stress and pressure at the moment as I know she would just prefer to stay here and let me carry on taking the burden of care. I am feeling quite weak and ill with it all. She has told me she never expected to have to deal with all of this at her age - suggesting she just expected to stay here until she died, regardless of how difficult this would become for me and my family. She has given no consideration to what would happen as she needed more care. I think this has underlined to me the importance of timing - if I leave this any longer then my health is going to seriously suffer, and it will be even more difficult for her to make the move, or for me to make it happen. I found myself in tears when I talked to the manager at the supported living place. Her reaction was so very supportive, and I realised she gets this from family caregivers quite a lot of the time. So yes, it is a personal decision, but care is twofold: for the person who faces increasing care needs, and for the carer who may be jeopardising their own health through the burden of care.

Chris,

It is very much a personal choice because every situation is unique.

I hope that you will be satisfied with the care that you will be considering for your mom.

Caregiving is a journey. Nothing is settled overnight. It happens in stages.

It is very hard for the one who needs to be cared for as well.

It was devastating watching my dad suffer with his cancer, high blood pressure, heart disease, diabetes, prostate issues and stroke, extremely difficult to care for my brother with diabetes, liver issues and injuries from his motorcycle accident and very hard watching my mom suffer with Parkinson’s disease.

We get to a point that we simply can’t emotionally or physically take anymore, even though we care deeply about their well being.

All of them were hard of hearing. The screaming alone is exhausting!

So, I am proud of you for taking this big step forward in your life.

Wishing you and your mom all the best.

I warned you that it wouldn't be between you two. Hahahahaha

Happy Thanksgiving to all caregivers! I hope that all of you enjoy your holiday.

Happy Thanksgiving!

I have been reading various comments. Some interesting and food for thought. Question, what are your thoughts about two sisters, one of whom is the oldest and wishes to live at home during her depression, declining blindness in one eye now the good is so bad she can't read books one thing she loved not mobility requiring an all night caregiver, can't prepare meals and handle finances and manage the lawn around her home. Her sister has been visiting every month starting January 2018 and in March 2020 visited and never returned due to COVID and hiring several caregivers at her financial expense and over $150,000 to care for her sister who only have approx., $3,000 month income. This sister tells the younger sister she wants to live in her home and she doesn't want to live long thus the younger sister who has some memory loss and declined in her ability to handle finances and supervise caregivers who take advantage financially (Ask for more work, take food home)-- it takes her a long time to get things done because she is overwhelmed, and stressed supervising and providing relief for caregivers on their day off. This is being done while the older sister refuses to get medical doctor's diagnosis of her condition. The younger sister did take her older sister to a doctor for eye injections, and podiatrist but won't allow her younger sister to take her to get a blood test even after saying she diabetic. The younger sister does not retain relationships with long time friends anymore, except for one who take care of the younger sister's home and mail, taxes, send meds UPS to her out of state because with her health insurance she cannot use a pharmacy where she's at. There is a lot more to this story but I'm providing enough to get some analysis or thoughts about why people hurt themselves caregiving love ones spending their own retirement nest egg thereby not loving themselves back and suffering mental exhaustion instead of encouraging the older sister to sell her home and live in a facility especially since an M.D. had not stated "Death is knocking at her door". Is she manipulating her younger sister? Thanks for your insight and Happy Thanksgiving!

MaryHelps: It's hard to say why people hurt themselves care giving loved ones, or why they're willing to invest their own money into that care, or whether manipulation is involved. I think sometimes misguided guilt is involved, whereby the one sister feels obliged to care for the other. Who really knows? Or perhaps she feels like it won't be much longer she'll have to do this since 'death is knocking at the door' anyway, you know? Nobody knows when their time will come, so the sister may wind up paying for care givers for years, in reality! She may feel it's easier, in the long run, to pay for carers than to do it herself, so she is willing to take on that financial burden.

I hope you can get some better answers to your question, or find some wisdom in the comments you read on this website. I know I have gained some wonderful insight over the years.

Best of luck to you!

Lea,

So true that we don’t know how long people will live.

My mom turned 95 this month. Longevity is in my family.

Several members of my family lived into their late nineties.

I have a feeling my cousin is going to make it past 100! She doesn’t even use a cane!

Sharp as a tack! Drives and gets speeding tickets! Goes to exercise classes! Cooks! Etc, etc, etc. She is 98!

I can’t imagine living that long. She did develop diabetes but otherwise healthy. I wish everyone could remain healthy like my cousin.

She’s a bit thin. Size 2 or 4. Wears a size 4 AAA shoe! Hahaha

She’s tiny, but a firecracker! Very vain, dressed to kill, face made up and hair perfectly done!

Mom must have had her hearing aid turned up today when I called. Hahaha

She actually heard everything I said when I called to wish her Happy Thanksgiving. It was a relief.

I usually have to scream loudly into the phone for her to somewhat hear me.

Mary,

That is sad. Very often the dynamic of relationships change when caregiving occurs among family members.

I hope these sisters find a viable solution to their issues.

I have seen a few posts where people are struggling with whether to keep their loved ones in facilities during this pandemic or bring them home. It’s a shame when they experience guilt about leaving them in a facility.

It’s certainly a huge concern for many people. I think everyone has to examine their personal situation very closely. It’s tough.

I love when I read posts that say to think with their head and not their heart.

Sometimes following our hearts heart and bringing a person home is the wrong choice, because the person is too difficult to care for which is why they were placed in a facility to begin with.

I feel badly for people in these situations because in most cases it would be a disaster to bring a parent or spouse back into their home.

This is such a timely post. I'm going through this right now with my Mom. Everyone but my Mom, who is in a rehab to get strong to move to Assisted Living (which she'd agreed to), is on board with doing so, except her. She is using guilt to change her mind and go back to her apartment, where she needs 24/7 care. However, every doctor and professional health care person recommends she go straight to her new home, just minutes from me and can provide the skilled care, safety, and peace of mind our family needs. I'm her only daughter, who she raised on guilt, but my very strong support system is keeping me focused on the objectives that rule out my emotional response in the decision making process. It isn't easy, but bringing her home to care for or back to her apartment are not options in her best interest.
Thank all for voicing your support and experiences here - you have no idea how much this site and forums have made in my life for her, and also in helping her sisters as they declined. And it has also helped my husband and I realize what kinds of choices we want to make for ourselves in the future. Thanks and hugs to all!

We were very lucky since mom had tried to care for her mom with dementia before she had to go to a nursing home they knew how hard it is .Both took out long term plans, dad died but mom had very good memory care free care for a few years before she passed due to dementia. The cost of private care is very high and medicare takes all the assets before kicking in even then some of   the nursing homes are not very good.  it's hard but most parents don't want to burden their kids

It always amazes me how most people think that they are maintaining independence by staying in their own homes when they are actually more dependent than ever. My mother chose to move to an AL so that she would maintain some independence (and not make me her caregiver). She can make her own decisions as to what she wants to eat and do with her day. She can walk down the hall to the beauty salon, attend a religious service or participate in entertainment or activities. She has independence. She doesn’t have to rely on someone to shop or bring her meals or take her to get her hair done. AL has provided her with many options.

I'm right there with you, in terms of understanding how difficult, exhausting, time-consuming, and all-consuming caregiving for a parent can be. My mom just couldn't handle Assisted Living. (We tried it for a day or 2 at a few places, and a week at another. It just wasn't working.) So, Hubby and I became the Assisted Living staff, and our home became the Assisted Living Facility. When she was in a good mood and cooperative, things were fine, but when she'd get in a bad mood and couldn't be reasoned with, it was very hard. I even wrote a book about our experiences called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." In it, I said that she could often storm out in a storm, and I had to coax her back in, which I did, before she ever got a drop of rain on her. She'd walk right outside to our covered porch, and I'd coax her back in. It was a 24 hr. a day, 7 day a week job. Of course, now Covid-19 makes decisions even more difficult regarding Assisted Living. Hang in there.

Sounds like your mother has passed on. Correct? If so, you probably gave her the best care you could while dealing with difficult circumstances.

It can be REALLY, REALLY difficult to care for a loved one in advanced stages of dementia when you are the only caregiver. In advanced stages, the person requires round the clock care or LOADS of physically demanding care (heavy lifting, lots of after-toileting care...) that ends up feeling like you never get any time to yourself to relax.

So, I always recommend gathering a supportive care team: family , friends, members of your faith community, and paid home health care to share the burden. All people have a requirement to have needs met - both the one being cared for and the caregiver. So often, caregivers neglect their own needs and end up having difficulties in those last stages because of burn out or their own health issues. When the caregiver's health, rest, nutrition, or ability to socialize with others becomes problematic, then it is time to change the situation - either bring in help (if you can afford home health care aides) or send the one needing help to others (if you can afford adult day program or full time residential facility).

NHWM,

Well said!!

ALF can be a wonderful option for our LO's, as well as for ourselves!

The staff is trained to deal with our LO's many issues.
The facility has lots of activities to keep their minds occupied
Staff to clean up the inevitable messes and monitor meds.

I think more often than not, it's beneficial to everyone involved!!

I'm so sorry for your pain and sorrow!! You have done an amazing job!!

((((Hugs))))
God bless!!

I sold all I had and moved in with Mom when she started showing signs of dementia. We had to lie and tell her I was homeless to get me in. She hated it and we went through a lot of teenage angst because she could not stop treating me as a child. I fell into the trap. (Mom is very manipulative) When she got physically ill a few years later she changed her tune, I became an adult again (for the most part) I have managed to establish some boundaries. We still aren’t into the heavy duty caregiving and I am so broken down all of my doctors are saying “you have to get control of the stress”

At least I see now where my decision was wrong for me. Now I interpret Dad’s dying request (Take care of your mother) to be - make sure your Mom is not always alone and is well cared for. He would not have wanted me to suffer!

Thanks for for letting me vent too! Maybe someone can save themselves a lot of grief through this thread!

My wife has been living in a very nice memory care for six years. I’ve often stewed over whether to bring her home. Now she is near death. She can’t walk and can’t use a wheelchair. She is slumped over, chin on chest. She’s lost 20 lbs in last six months. Hospice is seeing her. So, in a way, she has never been easier to care for! Should I bring her home to die? (I have no trouble with the bathroom stuff. But I’m 82 and can’t pick her up.)

It's hard to see a parent fading, and you begin to fade with them. It's depressing and just sucks the life right out of you. My Mom stayed home for a year and then moved into a nice facility. Maybe you could find a nice one for your Mom. Good luck.

In thinking of the OP's posting and some of the responses, I've decided to summarize the negative comments we see. From what I have seen, the accusations fall into three categories [followed by "rebuttals"]:

1) "People used to take care of their parents, but this has changed." [Years ago, the parent who died at, let's say, age 89 while still ambulatory with at least some mental ability now lives to 92 bedridden and/or with full-blown dementia.]

2) "Honor your mother and father." [Finding a way to provide appropriate care for parents when one can't do it at home IS a way of honoring them--it's not "dumping" them into the garbage.]

3) "Your parents took care of you as a baby and child, so you owe it to them to take care of them when they are old." [Parents choose to have children--or at least engage in activities in which children are the result--the children have no choice. Children are small, and their independence typically increases over time. The opposite is true of an aging parent. In addition, if the children marry and have their own children, their priorities necessarily change.]

Are there any others?

Stacy - It is agreed that sometimes it seems like a difference of opinion might open the floodgates, but what NeedHelpWithMom is addressing are the very flagrant posts that DO chastise the OP or anyone else for NOT providing care themselves in the home and/or making blanket statements about facilities, esp NHs, being like prison or worse. They are the guilt trippers. Suggesting various options for trying to keep a LO home is one thing. Putting the OP and those who reply down for considering placement isn't helpful, but rather hurtful and often drives some of those seeking help away.

There will always be differences of opinions, no matter where the "discussions" happen. There is a huge difference between suggesting one try home care vs telling someone they are somehow lacking in compassion if they don't want to or can't provide care. THOSE are the comments that are being addressed with this post. There are other comments that are clearly judgements as well, not just about placement. It can go both ways, but when someone is suffering, at the end of their rope, they don't need some guilt trip laid on them, like they are some kind of monster for not wanting to provide or continue with caregiving. This isn't the place for comments that denigrate decisions made by others. When someone is pleading for help, they don't need to hear that they are less than awful for not wanting to provide the care. THAT defeats the purpose of this site. It's obvious that we can't know all the dynamics going on with others, so we shouldn't presume to know what's best for someone else.

I notice that so far none of those "guilt trip" agents have been here to comment. This, unfortunately, will likely just be preaching to the choir! We aren't going to change those people and they will likely continue, although some who were active several years ago seem to have moved on. I also find it ironic that there are some who push THEIR ideas on us, for doing the care at home, yet their LO is in a facility! There is at least one who is flagrantly ignorant and suggests actions that are totally wrong and often downright abusive, but that person thinks they are Mensa quality.

Certainly anyone can suggest ideas for keeping a LO at home and support that, but they should keep their personal opinion about whether this is right or wrong to themselves. What's good for the goose isn't always good for the gander. What works for some doesn't always work for everyone.

While it might be easier caring for someone who is just declining with age or non-cognitive medical issues, those situations can still be demanding and overwhelming. As NHWM says, every situation is unique. Family dynamics play a role - does one have to give up a job/income/savings and jeopardize their own future needs? - does one have to raise children and decide between providing all the care the kids need vs the elder? - does one have to deal with a nasty LO, taking all they dish out and lose their own identity? - does one who suffered abuse growing up have to push that aside, suck it up and "do what's right", by the standards of others? - does one have to jeopardize their own health and well-being, just because others think it's only right or fair, since these parents cared for you as a child?

No, as some pointed out, promises to care for someone takes many forms. Even promises to never place someone in a "home" can't always be honored. We do the best we can and must know when to seek help. The decision has to be made by weighing ALL the factors - available resources, availability of the care-givers, logistics in the home, etc. A decision isn't binary, aka 1) provide care or 2) place someone.

My parents and my mother's sisters took turns caring for mom's mother. It was NOT a hard job, she just needed a safe place and good food provided, along with medical care. She did NOT have dementia. Dementia itself isn't the deciding factor either. There are MANY issues to consider when dementia is part of the equation. My grandmother passed on probably in her late 70s. The sisters & families all had a GREAT LONG retirement! My mother was living alone in her own condo. My mother's plans INCLUDED moving to AL when she felt it was necessary. Enter dementia, early 90s. Now AL was anathema. When bros offered letting her move in with them, nope. Bringing in aides, minimal with plans to increase didn't work either. After less than 2 months, she refused to let them in. Dementia LIED to her, so she would repeat she was fine, independent and could cook. Nope. I weighed the remaining options. It was NOT safe to leave her in her condo, alone. Moving in with her wouldn't happen (I have cats.) Her place was also not ideal, at least not for someone her age and condition (the opening to and the stairs themselves scare ME, and there was no way to securely close that off.) Moving in with me wouldn't happen (house in need of work, bathrooms NOT handicap accessible nor are they big enough to retrofit, full stairs to get in/out.) In addition, I would have NO family help, I live alone, she outweighs me by a lot, and I can't support her weight. OB isn't local, so no help there. YB is 10 years younger and still working. Even the few times I've asked for him to help, always complaining, trying to get out of it, etc. Hiring help *might* work, maybe, but she can be difficult to work with and with all the other issues, nope. She had sufficient funds, so when all other options failed, I found a VERY nice MC place, near enough to visit often and oversee her care. It is one that I would consider for myself, should I need it. I manage everything for her.

For those who DO denigrate us for not doing the work ourselves, fie on you. YOU want her to live in your home and care for her, have at it. I make sure ALL her needs are taken care of, and before virus I was able to visit often and be her CARING child, not some overworked, overwhelmed, suffering care-giver. She recently had a stroke, so it now takes AT LEAST two people to assist her, and she's terrified of the Hoyer lift. Sure, bring her here... augh.

I CAN see to her care without providing the hands-on care.

Just my experience so far: My mother had cognitive impairment for a long time, edging into early dementia, then her mind suddenly got much worse after a fall and head injury in April 2019. After rehab, I chose secured memory care for her because #1 I lived out of state, #2 she could not live safely alone, #3 her friends in her area could still visit her so she would not feel she'd been totally uprooted, #4 her doctors were in the area, #5 I thought this was a temporary solution and we would move her to my brother's town soon. That was all before the pandemic, of course. I have a little less confidence in the care she's getting now, the limitations on visiting are affecting her quality of life, and of course there goes $9,000 down the drain every month. So I have some regrets about the decision now. I'd like to take her out of there, but she has a boyfriend (for over a year) and it would break her heart to leave him. So in hindsight, I wish she never set foot in the place! I could be saving money taking care of her at home while she's still got mobility and rationality and her personality and social behaviors intact.

I plan to post this separately, but it can't hurt to have it here too!

Read this article to see what plans Biden has:

https://www.nytimes.com/2020/11/27/health/biden-senior-citizens.html

Biden has plans to help the caregivers out there, but it will take Congress to make this happen! Contact your reps. Pass this on to others you know who are caregivers! Ask friends and family to chime in, even if they are not caregivers. It may be too late for many, but you can help others avoid the hardships that you have endured and may help yourself/your families in the future, should any of you need care too.

We ALL need to mobilize and VOICE ourselves to our Reps and Senators, to make this happen!

Most of the comments on here are generally about taking care of parents.

I would like to see more comments about taking care of a spouse / partner. Specifically, home care vs a facility (we are still taking care of them - just not the day to day - hands on).

I feel that I should be able to continue to take care of my husband, however, my body is physically worn down. He does not seem to realize it is a 24/7, 365 no days off, three day weekends or vacations. Even as I sit here typing this (he is still in bed), I have the baby monitor on my desk - waiting to hear movement. We aren't able to shut down and recharge.

NHWM, you are SO right. I, too, get highly annoyed at comments that there are no good LTC facilities and if we were any kind of decent human being we would happily suck it up and care for our LOs at home forever.

My MIL blossomed when she went to Assisted Living. And my husband and I (who lived 4-1/2 hrs away) were relieved because we were afraid that caring for Mom was literally killing SIL, who visited every single day, brought groceries, took her to dr appts (even though just being in a dr office gave SIL panic attacks), etc. Mom made friends and loved all the activities at her ALF.

I’m now struggling with caring for my husband with dementia. When the pandemic is over I might place him. To many, that seems wrong since his care isn’t physically demanding, just mentally exhausting. But I start each day smiling, laughing, and speaking sweetly, but by mid-afternoon I’m frustrated and short tempered. Spending half the day with someone who is angry with him for reasons he is no longer capable of comprehending is hardly good. Although, truth be told, he doesn’t care that I’m mad and just smiles and laughs at me. He’s well cared for and happy, but I’m turning into a shriveled up shrew who just can’t face that this is the rest of my life.

At a good facility, staff will go home and recharge and come back able to be amused at his repetitiveness. And his false memories and ascribing bad intentions to loved ones won’t be personal to them. And I will be good company if I others handle the meals, bathing arguments, meds, the daily anxiety that he’s in the middle of a divorce (which happened 40 yrs ago) and his ex was just here taking everything, questions about where are long-gone pets (or the menagerie of imaginary animals LOL), etc. I will be able to visit, take hm out to lunch, chat and go home to a place that isn’t a so cluttered it’s just this side of a hoarding situation because getting rid of stuff makes him anxious. And my own health will improve because I’ll be able to go to PT, exercise class, dr appts, etc. without the added stress of finding a time slot that works with the provider as well as for whoever is watching him. As it is, I’m way overdue for a follow up with my cardiologist and my back is out again because PT and exercise is a bridge too far. Good news, however, is I’m getting my eye fixed tomorrow. Yeah!

I applaud those who are happy devoting their lives to the in-home care of another. But I’m coming to realize I just can’t do it much longer, that I’m starting to dislike the man I’ve been married to for 31 yrs and that’s not good for either of us. I just wish those who are content to totally give up their lives for their LOs wouldn’t be so contemptuous of those of us who aren’t.

I can certainly relate. I am currently caregiving for my mom that has Alzheimer’s and she lives with me. Many family members and friends have gave their opinions of course. About how I should continue to take care of her. And how I will be blessed. Wellll..honestly I have began to get annoyed about how they look at things. They are not helping one bit. So I’ve decided that the only opinion that matters is mine. And I agree with you about parents don’t realize the pressure put on their children to take care of them. It’s not fair. Especially when they have certain issues. I love the Lord yet I am not concerned about being blessed for taking care of my mom and she’s breaking me down. I have children that I responsible for as well. In late 2021..if we last that long, I will be placing my mom in a memory care facility. And I have no guilt about it. Because I refuse to uphold a unsaid plan from family. They have not helped once. And I have to take care of me and my kids. God bless you and I wish you well.

NHWM....i just want to say congratulations on how far you have come since your mom moved out. I would think to myself, and even posted at times, when you sounded in a very dark place and your needs were not being met. I was truly worried about you.
your posts are very much appreciated and help so very many.
So glad you are back on the forum! We missed you!!! Liz

NHWM, this is one of the best threads ever in my time on AgingCare and it's what's best about " Discussions".
There are so many heartfelt comments. I would like most of all to thank Mrsrubee for reminding us that there are some wonderful ALF and care centers. My brother was at a place where they absolutely amazed me with their loving care. He and I would sit in the Gazebo on the beautiful grounds watching them all run around doing things way beyond the call of duty, even dog walking. Helping a resident who wanted to trim roses. They were unfailingly kind; I never knew how they did it. It was more than a job.
They started great at the beginning with full interviews as to what they did, what they expected, what HE could expect in care costs, in raises, all of it deliniated in black and white. These people considered elders and even their family members as FAMILY. They KNEW the residents so well that when I had to tell a deep dark secret about my bro's long time companion and ex, they already KNEW all about it and were addressing it. They knew how each resident coped, what they could expect in problems. As I said, they amazed me. When I complimented a care worker they would say "It starts at the top; this is our mission". When I complimented the top they said "These folks do it all for me; THEY deserve all the credit".
I was a nurse. I loved it, and especially the elders. Even those who could wield a pretty good smack with a cane. Finding people who love this work is no mean feat. It is hard work. They deserve the credit. I saw them take honest abuse and take it with grace, do their best to fulfill needs.
I love to see the positivity I see on this thread, so thanks NHWM for this.