Care in their home, your home or in a facility?
Many of us (myself included) have strong beliefs about how to get one's parent(s), spouse or other loved one the best care possible.
I believe that one should do what suits best, without being berated or shamed. Much like "stay at home" parents and working parents. What works for you, works for you and your family.
Here's the thing. If you are caring for a loved one at home, you need to make sure that it works FOR YOU as well as for your loved one. I know, personally, too many situations in which a relative was bound and determined to keep a loved one at home. Several of these situations ended in the death of the caregiver before the person cared for. In one case, a suicide which could be directly traced to the caregiving situation.
There are many, many folks here who HAVE made home care work. Their LO's have been able to afford to bring in home health aides; they've gotten respite care. They have, rarely, it seems to me, been able to share caregiving duties with other family members who have the time and inclination to do hands on caregiving. These folks are generous with their tips and advise.
There are those of us who read a posting from someone who sounds desperate; we suggest that "maybe" it's time for a facility. If that doesn't fit with your ethos, then feel free not to take that advice. But please don't tell us that we've "dumped" our loved ones. Having a LO in a facility is an ENORMOUS amount of work. You don't just drop them off at the door and find yourself relieved of responsibility.
I am posting this in the interest of folks who want to discuss this issue. I know what worked for my family, and what didn't.
The rest of you need to make up your own minds.
There are nurses, aides, activity people, drives, cooks, cleaners, doctors on reg visits, PTs, OTs, etc, etc.. in many facilities.
For one person, even with respite it is almost impossible to provide that level of care.
Many caregivers have one thing in common, they come from abusive homes/ relationships. Are we are better at taking care of others than ourselves? Or is it natural selection or obligation or being drawn in some ways to people who need care?
Compassion and understanding should be essential for being a good caregiver, except if we did not receive those how can we acquire those qualities?
I do believe many of us who went thru hard times as children or adults and somehow become caregivers are resilient and survive and thrive against all odds.
Except it is quite obvious most have a breaking point.
I agree with your statement.. " One should do what suits best." Not everyone's situation is the same. In my case, I'm an only child and I have no one to share responsibility. I know that there are people who think I should not work and be a full time caregiver. But those people are also probably unlikely to help if I needed them. I have mentioned extra help to my dad and he never responds. I can understand that he may not want someone he does not know in his home but I can not continue to do it all especially with my new job. I do not think that people are "dumping" their loved ones when they have to go to an assisted living facility. It is so that they can have the best care. I have also heard of stories of caregivers who became sick themselves because they were over worked. At the end of the day, as you said, one should do what suits best.
Asking for help
Accepting help.
If you can do both of those it will ease your burden.
Many of us have tried to keep LO at home but realize it became unsafe .
I'd like to expand on what Burnt said earlier, about the assumptions people make about finances when an adult child and their parent live together. I know there were people in my extended family - my aunt (mom's sister) and her children for instance - who were convinced that I had my mom living with me and my family to pay our bills. She actually said as much to my mom once, who laughed at her - and explained to my aunt that, not only did my mother NOT pay our bills, but mom lived with us rent-free. I'm sure that made my aunt pea-green with envy.
I felt that charging my mom rent was not fair for a few reasons - first and foremost, she paid to have her upstairs apartment completely renovated, down to a total gut of both kitchen and bathroom. This will greatly increase the value of my home when the time comes that we look to sell it and move. She also babysat for us *all the time* when DH and I were working, including the entire time after 9/11 where we were at work for 14-16 hours a day, basically only coming home to take a shower and get a few hours' sleep. My DH and I felt that between both of those things, we at the very least broke even if we had had to pay for those things while collecting rent from mom. In addition, she paid all of her own utilities and contributed for groceries. She also paid 1/3 of my property taxes, since she felt she was living in 1/3 of the house.
But I know there were people who believed that we "kept" mom because we couldn't swing things financially any other way.
We went through that with my mom. Many of us were born and raised in the United States, but our family back home is not pleased we placed my mother. It goes against what family does in their eye's. I also have Korean friend that his parents are going through what I am going through. His grandpa was moved in and it is just expected for everyone to assist with the caring. It was not even asked, it was just done. You can see how it is impacting their family but cultural obligations are deeply rooted.
I do hope with time people understand that it is okay to put yourself first.
You can have the time to care for a loved one
You can have the family support
But if it is not SAFE to care for that person in your home then you have to consider placement.
When I say SAFE.
That is not just safe for the person you are caring for but also safe for you (and or your family)
This is Physical safety as well as mental and emotional safety.
And if you are unable to provide the best care then you may have limited options. (home with caregivers 24/7 or an appropriate facility)
Also many people are not "cut out" to be careGIVERS but they may be great careMANAGERS.
And as Barb put so well that having a LO in a facility is still a LOT of work. You become an advocate, more so than you were if you have been caring for LO in your home or theirs.
You are now dealing with an entire facility of staff, residents and other visitors that factor into your LO's life.
Just as each person with dementia or other illness is an individual your decision to keep someone at home or place them in an appropriate facility for their level of care needs is an individual one.
Let no one bully you, shame you or "guilt" you for making the decision that you make.
I’m glad you are able to not fall in the guilt traps . I’m assuming your work experience in difficult situations has helped make you strong in these matters .
You are correct , wants and needs are different . We don’t get what we want all the time. Perfect example is some children don’t want to go to daycare or school , but we send them anyway . Some can’t or prefer not be home with the elderly , they go to adult daycare or other facilities as well .
Even when a LO is in a facility there is work to be done for them , plus deal with guilt trips that some LO in facilities put on us as well as some get grief from other family members as well . Caregiving can be terrible no matter whether LO lives at home or in a facility.
One of my sisters used to call me up and literally laugh at me and tell me she was glad she wasn’t the one stuck taking care of our parents ( at home ) . I blocked her number. Then when I had to place Mom, that sister wanted in on decision making and told me I was wasting the money in AL . She said it was “ a high priced hotel with meals”.
I am still no contact with her.
I’ve known people who are happy in facilities, or at least acknowledge and accept that is where they need to be.
Just not the ones that I have personally had to place.
I refuse to let myself fall into guilt traps and I don't play games.
There are many ways to help a LO that do not include having them in your home or becoming their care slave.
People should know the difference between need and want. Giving someone what they need very often runs contrary to what they want.
It's still the best way to handle any care situation as far as I'm concerned.
You have been through a lot. It’s difficult to know how to handle this kind of behavior.
(((Hugs)))
About me: Widowed young, only child, 4 hours away by car, lived in my marital home. Remarried. Moved to rural home. Started a family.
About my mother: Widowed, grew up on a farm, lived in the city, needed to downsize but preferred country life.
We built a granny flat in 2003.
Soon started having boundary issues. She’s come to my house and shadow me for hours, complaining about slights by long-dead in-laws. Would “forbid” this and that. Baited me for fights. I contacted her Dr. and she begrudgingly went on antidepressants. But she knew I was to blame for her behaviour so she didn’t need meds or a doctor.
Acted rational around others and made me out to be crazy.
Dementia symptoms started such as misplacing things, paranoid delusions, mixing night and day, loss of abilities, conspiracy theories. Tasks I took on: sorting and then giving meds, meal planning, shopping, some meal prep, finances, laundry, cleaning, booking appts and driving. Couldn’t understand the pandemic lockdowns so she’d interrupt my kids as they learned online, thinking they were gaming. I spent day and night, every day, trying to redirect her. Fortunately the schools were sympathetic and didn’t penalize my kids for the disruptions. She also interrupted my husband’s work.
She’d pop locks to get us out of the bathroom if she wanted something “NOW!”. Scream for us to get off the phone.
In front of others she showtimed as the thoughtful granny.
Without having been declared unable to care for herself, my hands were tied. Refused to see her Dr. because I was the problem, not her. If I would just stop making her act like that.
Hired a wonderful PSW 4 hours every other day. Mother raged and tried to fire her. Staged multiple hunger/thirst strikes, demanding only me. She stated that, when I was widowed too, she wanted to live as the Golden Girls. But I remarried and had children. I ruined her life’s plans so she was ruining mine.
Eventually she wrote a detailed suicide note and tried again. I called EMS. She sweet talked her way out of the 72 hour hold by telling the Dr. that I was too sensitive, etc., in spite of the note. A sceptical psych nurse phoned me. I quickly involved other services and they helped me send her to a respite home. My BP was high, I couldn’t sleep, muscle spasms, crushing headaches... all while trying to be a mom to my (by then) teens.
Finally she was assessed. Couldn’t name her town, age, date of birth, the year, or grandkids. Thought her parents were alive. Now I am her substitute decision maker.
She is in a fabulous care home. Her rage is only directed at me and my husband (if she recognizes us). She has meds for that now. My BP is ok and I’ve worked my way through a bit of PTSD from her ambushes. Obviously there is much more to the story but I suspect few are even going to read this far.
Because my mother had always been challenging, this all kind of snuck up on us. In hindsight, I am appalled.
While my kids say they understand the awful position I was in, I am still so sorry that I subjected them to her. I really thought she’d be a baking, arts and crafts, happy Grandma.
One of my daughters is trying to learn all she can about dementia (on the side - it is not her field of study) to try and process what her grandmother was going through. It affected us all profoundly.
And I probably laughed when my husband related the conversation to me. Sometimes in the face of such stupidity all you can do is laugh.
Your apology is very kind, but completely unnecessary! I didn't find anything insensitive about your comment. Please don't give it another thought!
I need to apologize . Now that I think about it. It was insensitive to say I chuckled at what your brother in law said .
I was thinking the same as your DH , before I even read what your DH said . I thought …..What part of ‘ she’s dying ‘ is he not getting , How idiotic …Then I saw what your husband said and chuckled that your DH said exactly what I thought .
So sorry . Again I apologize . Sometimes I chuckle at stupidity , but this was not the appropriate time for that . I deeply regret not being more thoughtful .
I’m glad you shared your story.
Bringing up that caregiving is tough even with a cooperative parent is important . It changes your life.
I am glad you got respite times , also very important that people feel they can do that without guilt .
The “ I didn’t think she’d look that bad , I figured she would at least be talking “. That made me chuckle.
When my Dad had cancer. He was given 6 months to live without treatment. Maybe a year with chemo. Dad lived 6 more years after chemo. When I called my brother to update him ( like he requested ) to tell him Dad was doing well , his response “ Well that’s not what you told me before , you sounded an alarm . “. My thought was a simple “ that’s wonderful news , thanks for letting me know “ would have been what I expected .
I too have very little to do with my brother, an aloof self absorbed person who wanted to know “ when exactly I thought Dad would die “ so he could fit it in his schedule. I have no contact with 2 of my 3 sisters . Too much criticism after putting mother in assisted living. I really only see and talk to one sister . The only one that supported putting Mom in assisted living.
I’m glad you are at peace regarding your siblings.
Excellent Point !!
”Why do people have to rationalize and make excuses to others for saying no to caregiving? “
Because they fear being judged or told
1)it’s their duty to honor your parent or LO, you owe them for being born .
2) It’s “ dumping “ your LO
3) It’s selfish , your parent wiped your butt so you owe them .
4) facilities are terrible and keep them out of one at all costs.
5) “ How would you like to be dumped in a facility?”
6) It’s an honor to care for your parent, it’s God’s will.
I’m sure there are other guilt trips I have left out .
I was extremely fortunate. My mom wasn't a difficult person to take care of. She was thankful and appreciative. She was willing to do respite care so my DH and I got to go away for our 25th. She never laid a guilt trip on me. And I have 1 sister who was very supportive.
But it was still tough to take care of my mom, if for no other reason than while she was pretty much housebound, so was I. And I'm someone who considers herself a "homebody". But boy, there is a world of difference between when it's your choice to be so, as opposed to when it's forced upon you.
I have another sister who was not the least bit interested in anything to do with our mother while she was ill. She didn't even have the common courtesy to respond to my texts/e-mails when I gave updates about our mom. She flat out wouldn't answer my phone calls. When mom was dying, my DH had to call her (idiot) husband on his cell phone, just to get through to tell them "she's dying. If you want to say your goodbyes, you better do it quickly". Even then, we got "Oh, I don't know when I can get there, I'm SOOOOOOO busy at work, I'm in the middle of this huge project..." blah, blah, blah. When they came, 2 days later - and I'm convinced they were hoping she would die before then - my (idiot) BIL said to my husband "I didn't think she'd look THAT bad - I figured she'd at least be talking." My DH said "What part of 'she's dying' did I not make clear to you?"
You're right when you say you can't change others. But any sort of hope my sister might have had for a relationship with me after that is pretty much out the window. I don't hate her; but neither do I love her. I am completely and totally indifferent to her. On the occasions that I do see her, she is no more to me now than some casual acquaintance, one of those people on the periphery of your life when nothing in your life would really change significantly if you were never to see them again. And that is her doing, not mine. I feel no guilt whatsoever about my feelings now. After all, family is about more that shared DNA.
Just as she was allowed her choice to not be involved when my mom was sick, I am equally allowed mine to be done with her because of her choice. I don't think that people who disregard their caregiving siblings ever take that into consideration.
I wish I had seen it sooner . I was blind until only a few years before my mother’s death.
My mother did not leave a poison pen , although I got plenty of live action poison especially once I placed her in managed care . Then after her death I had such trouble dealing with the grief and anger at the same time. I was very angry at myself for not putting the breaks on sooner .
I think we're overlooking another demographic of people who are often judged into oblivion by others. The ones who simply don't want to take on caregiving for an elderly person.
Why do people have to rationalize and make excuses to others for saying no to caregiving?
-I work
-I have kids
-I don't have room
-I live too far away
-I don't have time
These are popular ones people use to justify saying no without actually saying no.
I don't think anyone should have to justify themselves for saying no to caregiving.
Many people have a nice life and don't want to give that up to become a slave to an elderly person's care needs and demands.
They also may have a nice home too that they don't want taken over by the junk of the elderly (everyone knows what I mean), or to have a negative and miserable person around 24/7 who constantly complains and smells because they refuse to shower or even wash up.
I don't think anyone should have to make excuses for why they say no to caregiving. We should just be able to.
Our modern society puts a negative label on adult children who still live "at home" with their parents. They're usually considered losers who never made a life for themselves.
Yet nobody sticks that label on an elderly parent who has to move in with their adult child because they made poor financial decisions and didn't make any kind of care plan for their own futures so they wouldn't be a burden, and yes caregiving for an adult is a burden. Never let anyone tell you otherwise.
Or the ones who are lucky enough to be able to afford homecare or AL but won't "allow" anyone but their adult child to do for them. What a great crock of you know what that is.
No one has ever asked to be born. Parents owe their kids. They are supposed to raise them to adulthood then they go off and make their own life. That's the natural order of things. They are not supposed to enslave themselves sometimes for decades at a time to their parents' neediness. They are not supposed to sacrifice the life they made for themselves to become parents to their parents. To become nurses to them. To become slaves to them.
I really don't want to be a burden to anyone I love. So if I should become one give me a bottle of good whisky, a pack of premium cigarettes, then set me on a mountain and leave.
My last boss' mom had MS and was wheelchair bound. Not only did she refuse to go into a facility, she also refused to live with any of her children. So her daughter spent her life running back and forth between houses. She would:
1) get up early, go to her mom and get her out of bed, washed up, toileted and fed breakfast.
2) go home, get her family out for the day and go to work.
3) go to mom's at lunch time, feed and toilet her. Back to work
4) go home after work to get her kids started on their homework, etc. Get dinner started
5) go to mom's toilet and feed her dinner. Clean.
6) go back home, feed her family, clean
7) go back to mom's get her into bed for the night
8) finally get into her home for the night. Unless there was some sort of "emergency". Which, of course, was often.
Do you know how this woman "repaid" her children? She left them a "poison pen" letter that they found after she died. Her daughter read parts of it at the funeral. She was sobbing when she read her mom's words telling her children "I always felt you loved daddy more than me; you never really cared about me or for me"; the entire letter went on like this. I remember my boss' sister begging her mother for forgiveness for making her feel like this! I thought "you evil woman...it wasn't enough for you to control your children while you lived, you have to continue to do it from beyond the grave!"
But this is often the reaction in any sort of dysfunctional relationship...it is very hard to see it when you're inside of it. For those of us on the outside looking in, we can say all we want "don't you see this isn't healthy??!!??" but in reality, the person in the relationship CAN'T see it. It's very heartbreaking.
Excellent point !!
For YEARS (a dozen ) both my parents were not “ bad enough to go into a facility” . Dad had cancer , Mom had recovered from a stroke . But they certainly were not totally independent either . I took them to all doctor appts, did the shopping , prepared meals , cleaned , took them out places . They were still able to take care of their own hygiene at this time.
They were in this very slow decline . I did ALOT for them .
I did suggest IL , but parents refused , they were afraid it would cause them to run out of money among other reasons . My mother did not like the stigma of being in an “institution “ and she felt it was my duty to keep her out of one , which was hypocritical since she put her own mother in a nursing home.
The thing I've learned here is that you can't direct anyone's behavior but your own. From my own life, I've learned that you can't assume that your siblings had the same childhood you did.
My middle brother was a troublesome child, medically, academically and behaviorally. The bulk of my parents' attention (what wasn't being consumed with ill and dying relatives) was focused on him.
We were at a family holiday event a while back and "golden boy" said something about what a great childhood we had. My younger brother and I exchanged guilty glances, because yes, this is the " company line". In truth, FOR US, it was anything but.
I'm glad that there was the option (good facilities and adequate funds) to place my mom when she could no longer live in her own home, because in truth, I wouldn't have been a "loving" caregiver.
I watched my mom care for HER mom when I was a child. She tried every which way to convince herself that it was "the right thing" and that is represented doing her Christian Duty. But in truth, it twisted her into an emotional pretzel who had few resources to give to her children.
I was one of those people who felt I had no choice but to care for my narc mother , My mother demanded I not put her in a home . I let her and guilt rule me.
After my Dad died I brought Mom into my home very briefly . She didn’t want to be alone. My mother then decided she would rather go back to her own house so she did. But then it was apparent to me that she had dementia.
I was at my whits end because mother refused showers and would not allow me to help and she lived on cookies and Coke. She would not allow hired help to come into the home either . She also was not safe home alone anymore.
The doctor told me she had to go into a facility .
These folks who feel they “have no choice “ and are stuck in impossible caregiving situations are very often who come to Forum and who we suggest placement . If it’s not working at home , it’s not working. The extracted promises , cultural customs , guilt , stigma and shaming is the roadblock causing these folks to feeling they have “ no choice”. These folks are suffering and need to be allowed and encouraged to explore choices to find what works . These are the folks I most often reply to on Forum .
In my case, my mother didn't meet the requirements for a nursing home. She really only unable to do 2 of her ADL's unassisted, and the minimum is 3. It was even iffy about getting her approved for respite care when my DH and I went away for our 25th anniversary; the nurse who did the evaluation had to get a little creative on the paperwork for the facility to accept my mom for the 2 weeks.
I think it's very unkind to come here and berate anyone who makes the decision that, since they cannot care for their LO at home it's the safest thing to place them, I find it equally unkind when posters come here to complain about the issues with caring for their LO's at home and are then told, in not so many words, that their issues are on them, the caregiver, because they "made the choice" to care for their LO's at home. I especially seem to see that when the caregiving child comes to complain about a lack of support from siblings.
The decision to keep elderly parents at home isn't always about that elderly parent not wanting to go into managed care. Just because a parent's level of care hasn't reached the point where placement is necessary doesn't make the caregiving job any easier.
Here's the thing. There are others here who also feel they "have no choice" but to bring their parents into their home (or move to parents') and provide care.
Those are the folks I'd like to join in here too, to have discussion--not a debate.
I want to add that some people have absolutely no other choice other than placing their loved one in a facility. In my case, my father eventually required someone to be with him every minute of the day. There was only me, and I had to work. If I didn't work, I couldn't pay the rent and other expenses, and if I couldn't pay the rent and other expenses, both my father and I would have no place to live. We had no money to pay in home caregivers either. There was no other option. I wish I could have kept him home longer with support from others, but there were no others to help me. That was my experience, and I mainly try to help others here who are in a similar situation. Unfortunately for some people, there is no other choice.
Yep! It’s very possible that he would have collapsed under the stress. Many of us had more stress than we could have ever anticipated.
But I haven’t told FIL’s situation prior to us bringing him by us .
He was living in Florida in an IL with his 2nd wife. The wife had dementia . She would keep firing the caregivers that came to help. She yelled at FIL all day long that he lost whatever she could not find and have him looking all over the apartment and bringing her things. My FIL wanted to move back up north near his wife’s adult children . The wife refused saying it’s too cold.
My DH tried to talk to the woman’s children because FIL was losing so much weight and was so stressed from the situation. One of her children agreed with us that a change was needed. The other 2 stated they were fine and FIL had to learn to deal with it . FIL was already 87 and frail at the time , and had fallen many times despite using a walker . The woman ended up aspirating and died. I am convinced that if she had not died , FIL would have died soon from a heart attack or stroke.