Please allow me to vent. Had I accepted a facility as a solution for my husband when he started falling or became incontinent he would have been there more than 20 years already! I have lost count of how many times hospice has been suggested by providers. There are lots of resources to help with falling, incontinence and other issues and still be able to stay in one's home. Ongoing PT helps minimize the risk of future injuries, even though it won't prevent them, nor will a facility prevent them. Many here are simply looking for options to help with a current concern, but it seems so many others here only see a facility as the solution. Probably everyone here already knows a facility is an option, but in most situations it is unaffordable without total justification for Medicare to pay or without great LTC insurance.
I am frustrated because this is the attitude I also run in to so often at the ER or iwth new specialists who don't know us. So, it is more frustrating when I see fellow caregivers with that attitude without even knowing the whole story. While a facility may have been the wise decision in one caregiver's situation, it is not a wise decision for every caregiver.
When new providers meet my husband, they often only see Parkinson's, quadruple by-pass, aspiration pneumonia x4 times, a PEG tube for feeding and now mild dementia as a reason to write him off. This even happened when he broke a hip where I was thrown into OJT advocating for him. Had I not been there, he may have been laying in a bed overdosed the last 20 years... and this was even before any of the other issues. Yet, he is still walking unassisted inside our home and up till recent bout of aspiration pneumonia, he was eating two meals a day and tube fed only one so he didn't lose weight. Even with that... I am hopeful getting back in for swallowing rehab again may help him to be able to at least pleasure eat.
I know the time may come, before my husband dies, where resources available to keep him at home may not be enough or towards the end of his life Hospice may be appropriate.
I believe most people are simply looking for new options for ongoing issues to make their caregiving journey a bit easier. I know that is why I am here. No one knows the complete story of the loved one or the caregiver so offering the solution of a facility or hospice may only be adding to their frustration... I know it totally frustrates me each time I see it offered with little justification knowing few details.
I was not a hands on caregiver.
I "only" drove 2 hours each way to visit her each weekend, to bring her treats, check on her care and make myself known to her caregivers. Read to her, clipped and filed her nails, gave neck massages and listened to her halting aphasic speech, trying to figure out what was hurting, bothering or amusing her. Kept her up on family news and showed her FB posts from all those who couldn't visit.
Took her to doc appointments. Called the DON, SW, doc, Psychiatrist and therapists several times a week to get a sense of what was going on physically and mentally.
I was only her HCP; my brother was her pOA. He and his wife were there several times a week
We cleaned out her home of 50 years and readied it for sale.
My brothers and I had spouses, children, mortgages and careers that were unable to be abandoned.
My point is that if you have an elderly loved one NOT at home, there is PLENTY of caregiving that needs to get done.
I salute anyone who has the grit to give up their privacy, career and down time to do hands on care. I knew from the get go that I would not be able to take on that task. My SIL, once she experienced my mom's paranoia and delusions, said that there was no way that mom could reside in their home. She was absolutely right.
Mom needed professional care. She needed folks who could sniff out a UTi, pneumonia and pulmonary fluid buildup and distinguish it from dehydration, crankiness or tiredness. None of us had those skills.
So, no I don't think it's a binary choice. Unless you are going to walk away, caregiving for an elderly person is a huge chore no matter whether it's in home or in facility.
I don’t think anyone could have said it any better!
I believe AC users offer this advice because many of us have been down the path of being hands-on caregiving in difficult situations, and we know the irreversible toll it takes.
Some caregivers believe providing intensive hands-on care for their loved ones is the right thing. I know some people feel called to do it, based on their own giving personality, the lifelong bond with the person who needs care, or religious beliefs.
I respect that.
This forum can only give advice coming from people who've never met you and are responding to a few-paragraph summary of your circumstances. Or, advice from those you encounter during medical visits who also don't know your full story and circumstances.
Take the good; leave the rest. Always.
For some, the AC approach of erring on the side of protecting the caregiver is a lifeline. It's a reminder that we cannot set ourselves on fire to keep others warm.
I needed others to tell me that I was valuable during my caregiving years and assert that just because my loved ones had great needs, that didn't mean I was obligated to perform the duties firsthand. There are always other ways to provide our LOs with their needs, without sacrificing ourselves.
It's an extremely personal and introspective journey. One must decide for themselves what they can and will do.
And I think that's why the advice to hand off care to others/professionals is always helpful in the big picture of things. It's simply a reminder that there IS a choice because too often caregivers don't see one.
And caregiver vents are ALWAYS welcome here! :) Vent away! It's a great discussion jumping off point, plus I hope you feel better for sharing. 💜
I have been on this forum for over 4 years now and quite honestly have not seen what you're describing be the case.
Yes it may be suggested to place a loved one if the OP is describing extreme burnout or frustration, but otherwise folks on here try to give as helpful answers as they can with the information given them which isn't always much.
I cared for my late husband at home for over 24 years and I know the toll it took on me physically and emotionally, so I know first hand what it all involves, and while keeping a loved one home works for some, it does not for all. It is NOT a one size fits all.
It has to come down to what is best for all parties involved.
Most people who come here are already burned out and can no longer provide safe care. I’m curious why OP is reading here if her situation is full of sunshine and roses.
After over 15 years of caring for my husband, my house became a zoo. I'd be in the basement laundry room, my husband would poop in the bedroom closet. I was upstairs in the bedroom area, and he'd neatly poop in a dish towel and hide the bundle behind anything. Urine was liberally distributed.
Unlike my support group friends' spouses, my husband is very mobil.
He is in a facility (full-time) now these last 2 months. I've learned about Jumpsuits that can be unzipped from behind and only with the help of a care-partner (facility talk), or me.
I cannot afford this terrific place for more than one year. I'm thinking of taking a part-time job for a little while (I'm 71). Anyway, this jumpsuit trick and many others to come will serve me greatly for the future when I take him back home.
Currently, I'm using this time to collect my very, very weary marbles, and to sanitize, bleach, and shampoo every inch of our home, as well as to get some repairs done too.
Got Junk, The Salvation Army, the Library and an auction house are benefitting a great deal as I downsize to my heart's delight now that I have time. I'm also freed up after 10 years of self-neglect to catch-up on medical check ups. The cost of the facility prevents me from taking a little vacation but at least the tick I developed (joke) from jumping at every sound, or the unusual lengthy quiet, (not a joke) has subsided. I rarely slept. My own failing memory from lack of sleep is coming back on track. And, hallelujah, I can take walks, and eat any dang way, or no way, what and when, as I like too. No bread, crackers, treats in the house.
To learn about Jumpsuits (Buck and Buck) was a big boon. There were just so many pet gates I could install.
Having him in a facility enables me to sleep, still not well, but better and so, as I mentioned earlier, to think more clearly. Why didn't it ever occur to me to whip out my sewing machine before and sew close all his pockets? Is my husband the only one that tucks tissues in every nook and cranky of clothing, socks too, to explode in the laundry? UGHHHh.
I often joke when asked how are things going because I didn't want to bother people who have never experienced or know the real nitty gritty of this life. It is pointless and useless. They don't really want to know. It's understandable.
I'd joke too to those who were in the same boat and may need to see someone describe their same challenge in a silly way.
Sometimes when I show-up for a visit at my husband's facility [which was everyday and now holding pretty fast to every other day. (He's 16 miles away in a more affordable city)], I'd see him snoozing in the communal livingroom side-by-side with an equally demented lady snoozing and leaning against him. It's an innocent thing. I tell the staff, "I hope she's rich".
I'm a senior. The picture of youth I'm not. When I was young I remember seeing crabby seniors, and seniors with a youthful twinkle in their eye and always a pleasant word to say. The latter looked younger and enjoyable to relate to.
You sound whipped. Who cares what people say? Some folks have been running in a hamster wheel too long. Me, and you too. Go out for some personal fun.
This is temporary. It's a test, or school. It's a mystery. Be curious. Look for the lesson. Flip it off. Easier said than done, but so is everything.
Nothing is important except you and yours.
I look forward to getting my gibberish speaking, diaper wearing husband back to our home. It'll be a new home, either ranch style, or a one floor apartment condo, rather than a 3 floor townhouse, but for now I am so grateful for his memory care facility. He's safe, well fed, kept clean, (nothing is perfect but this is a good place. I still help him shower on days that he's not scheduled for a shower), but best of all I'm in great spirits when I see him. I miss my p-in-the-a. He smiles and chuckles and grumps and it's all good.
A couple of months ago, some of us "old timers" were pointed to as being a "clique" and "shills" for A Place for Mom, which owns this site.
I am neither. Can't speak for anyone else. But I've been here for 10 years and I just am not coming up with any posters, old or new who immediately recommend facility/hospice as a knee jerk response. I understand the fact that you don't want to point anyone out.
And yeah, I think wiping my husband's butt is psychologically a heck of a lot different from wiping my mom's.
I can only speak for myself here, but I've seen far too many seniors in my time who got "kept at home" with little joy for anyone. Loneliness, resentment, ill-considered medical decisions, death of the caregiver, either by overwork or suicide...I've seen that all, just in my own family.
Many of us do NOT believe that society's default expectation is correct.
We don’t have posts where someone says “I have a tiny problem that needs to be tweaked. What are some simple tips and tricks I can do to make something easier?” And people reply, “Nursing home!” Lol. That is silly.
I’d say 50% of posts have some form of “my LO feels neglected and lonely”… and “we have busy lives and can’t make them happy”.
We also have PLENTY of posts where people say, after a one week adjustment, their LO is much happier in AL or NH because they are getting the much needed socialization and meals with someone else doing housekeeping.
I’d also say a minority of posts are caregivers of spouses, which I agree is completely different than caregiving a toxic parent.
I know what caregiver burnout is like and I know that is can destroy families and people. It almost destroyed me. It was all day long clients, dementia, incontinence, orneriness. Then come home to my abusive elderly mother for more. Every day. Seven days a week. If not for the help of God and reconciliation with my ex-husband, I'd be in the grave today and it would be by my own hand that I got there.
How many people are forced by guilt and conditioning by a LO to make the most selfish and obscene promise of all, to not put someone in a "home"?
Do you have any idea how many lives, families, marriages, childhoods, and homes have been destroyed to keep an elder at "home"?
Or how many adults become enslaved like I did to the needs of parent or spouse who was always abusive to them?
Do you know that something like 50% of caregivers die before the person they're caregiving for? Why do you think that's so?
Don't get me wrong. I'm happy for you that your experience with caregiving has been manageable so far. This is not the case for many, many people.
So really you have no right to be judgmental of anyone else's experience.
Also, you may believe most people are just looking "new options for ongoing issues to make their caregiving journey a bit easier".
This is not true. This is the flowery and poetic language that social workers use to placate desperate people because they're going to blow them off and do nothing to help them.
What most people who are responsible for a needy elder want is to keep their own heads above the water and not drop down themselves from exhaustion. I say this from 25 years of experience.
Most people who weren't coerced into caregiving or forced to do it out of necessity, have the best of intentions and want to do right by the person. At what cost though?
No one should be judged or guilt-tripped for deciding to place a LO in facility care. Or because they say no to becoming a caregiver.
People are supposed to have choice. If they say yes, then good luck. If they say no they don't deserve any judgments from the ones that did choose to, who now think because they did it a halo appears above their heads as a testament to their moral superiority.
I've learned SO much on this Forum and, as an older adult (86) potentially in need of future care, I've become even more convinced that EOL planning, in writing, is essential. (We've had Wills, healthcare directives, etc. for years but have now updated our POLSTs and made sure all our documents are easily accessible.)
Although I sincerely hope not to live to a point where I need placement, I realize that I NEVER want our kids to be forced to deal with some of the nearly intractable problems that so many caregivers here have faced.
The bulk of the posters here are caring for a parent and not a spouse. In that case there is a completely different relationship aspect to that. Parents may be more difficult to care for because that are used to being in charge where a spouse may be more willing to accept what their wife/husband are doing for them. There would have been no way I would have brought my father into my home. It would have been too disruptive and he would have taken over everyone's lives. My husband is 74 and I am 56. If needed in the future I will certainly try and keep him home for as long as I could but I know I have certain lines that if crossed he would have to have professional care. I am willing to do a lot for him but I am not willing to completely give up my life for long term care (short term maybe).
That is true. The relationship makes all the difference. When it's your spouse or even your child, it's different.
I did caregiving for my ex-husband when he was dying. I woud do it for my current husband and my son.
I will have no moral stuggle dropping my mother off at a nursing home if she gets to be too much for homecare to handle.
We share our lives with our spouse; we have flown the nest and moved on to this life.
So I ask you if you would have cared for your parent in need to the neglect of your spouse ?
You say in all the time your spouse had Parkinson's he is only NOW moving into mild dementia. No one I have seen here has placed a spouse, if they COULD do the care themselves.
I recommend Hospice for those who are at the END OF LIFE. It is end of life care.
I recommend it to prevent suffering and pain where there is no chance of life going on.
I recommend in-facility care when the person is already "gone" with only the husk of their bodies remaining while their minds do not resemble the persons we knew and loved all our lives.
And yes, I do not believe we should sacrifice our lives upon the altars of dying parents. At 81 it's DREADFUL to think my 61 year old daughter would even consider (and she knows she had BETTER NOT) giving up some of the most free years with her hubby to care to my body because I will not die.
Recently I read a memoir by a man whose family lived in a huge old home in Elgin, Illinois which was also the town's mortuary. Generations of two brothers and their families providing last rites to the town. And what I was struck by is that everyone died in their 60s. It isn't so today. We go on most often to our 80s and 90s, long wishing we were dead while our poor families often wish the same.
So, that's my opinion only and I appreciate you bring this up. I hope admins will move it to discussons where it will have a somewhat longer life rather than disappearing into the daily thread history.
Take care KP and I am glad you are content in your choices and I wish you and your hubby the very best ongoing. I just think we have no right to make choices for others.
I visited a colonial-era cemetary in Connecticut recently where the graves were mostly from the 17th and 18th centuries. Most of the ages of death were in their upper 70's and 80's with the exceptions of the very young (babies and children), very young women (the cause usually was childbirth) and those killed in the American Revolution. Otherwise people lived to be old back then.
I don't think they lived so long that dementia could reduce them back into infancy and total invalidity like it can today. Of course back then was no way to keep an elderly body alive with every technology and medication. Maybe they were better off.
I totally agree that when a person is as you say "gone" they belong in facility care.
You are spot on about a caregiving relationship being entirely different when it's a spouse versus a parent too. Or even a child.
I would care for my husband and did care for my ex when he needed help. My parent, in-laws, or other relatives I decline. In fact, when we remarry which will happen soon enough, we both want a written legal agreement that neither of us will move in elderly relatives who need care, nor will either of us move into a family member's home to provide it. It's hard 'NO' on that.
My mother is still resentful that I did not take her to the new house because it has an in-law apartment. My son lives there and when he goes it will be rented used as office space for the business.
I never judge anyone who has tried caregiving and had to throw in the towel and opt for placement.
I don't judge anyone who refuses outright to take it on. Those people may know people like me so they refuse it for their own sake as well as their parents'.