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.
The reality is not to come off like a jerk. If people had the money or options they were comfortable with they would not come to such a forum. Deep down I do believe most posters, and people who join support groups are seeking validation to a choice they have already made deep down.
Just my two cents.
People who participate on this forum offer suggestions which may or may not be helpful. Take what is useful and toss the rest. What works best for one person won’t necessarily work for another.
I feel it’s important to be open minded about topics or views that are different from what you may have. That’s how we learn.
There really isn’t any reason to attack someone on a forum. I don’t have a problem with debating an issue in a respectful way. If you aren’t comfortable discussing it on a thread, then message a person to discuss it further.
If caregiving at home is a temporary situation, and used as a stepping stone to the next step, then it is fine. Otherwise, it becomes too much to deal with on a regular basis. Caregiving at home for years and years is extremely difficult.
People who have certain medical conditions like my mom did, Parkinson’s disease, will only get worse and they will end up needing more care than we can possibly provide.
Life was hard to maintain and as I look back, I don't know where I found the strength to work full time, go to college, raise a kid, housework and do other things. I was with my sister for three years after Mom died.
I wouldn't have successfully got my mother into AL without the help of all those who have given me recommendations and help. I also read posts of other caregivers who are frustrated, upset and miserable in what they took on. So, recommending a facility is an accurate response to those who just can't do it anymore.
My Husband was on Hospice for almost 3 years.
That is unusual. He did have "recertification" times.
As long as there is a Documented, Continued Decline a person can remain on Hospice.
The advantage for me was I got all the equipment that I needed to SAFELY care for him at home.
I go the support from the Hospice Team. I had a Nurse that came 1 time a week. I got a CNA that came 2 to 3 times a week. She helped shower him, ordered supplies.
I got the supplies that I needed briefs, gloves, ointments, absorbent under pads, medications were delivered tot he house each week. When he needed liquids thickened I got he product that I added to make liquids safe for him to consume.
I was/am lucky enough to have purchased a house that was built Handicap accessible so I have ramps into the house, no stairs to contend with, wide halls, wide doorways, roll in shower, open concept that made it easy to sue the equipment that I needed to and even before the equipment the house was safe for him to get around with his walker.
Now about facilities.
I said I would keep my Husband home as long as it was safe for HIM for me to care for him at home and just as important as long as it was safe for ME to care for him.
If it was no longer safe for either of us I would have had no choice but to place him. (he was a big man and if he tried to fight me or if I had not had the equipment that I needed I could have been hurt or he could have been.)
So for me Safety was my "line in the sand"
Many have other lines they will not cross for some it is incontinence.
Also please recognize that not everyone is cut out to be a caregiver. Some are much better care managers. And there is nothing wrong with that.
And unfortunately as I read here far more often than I would like to many have been physically, mentally, emotionally abused by the person they are "supposed" to care for. I am a firm believer that an abused person should not be expected to care for their abuser. (if they wish to that is their decision but I think it is adding to the emotional trauma)
So if you feel strongly that a person should remain in the home, if you feel that Hospice is not the right choice for you that is your decision.
Caregiving in any capacity requires sacrifice, one not many truly understand what it intales. I know I did not. Personally I wish more professionals we ran into spoke highly of placement. I am on the side of the coin. People giving us a hundred and one ways how to provide care at home. Telling the horror stories of facilities, saying if they were in our shoes they would never place their LO.
Problem is no one explains the harsh reality that end of the day not many care about your situation. So you spent your years caring for your LO, now they are gone you have been out of work for x years. Good luck finding a job. Good luck saving for retirement. Good look getting your youth and health back.
Caregiving comes as a major toll, one that realisticly no one should have to pay but that is life. Being transparent as to what exactly one is giving up to do x is important. My mentor has a phrase he told me when it came to these kinds or situations.
Often your choices boil down to a bag of horrible choices, you just have to pick the one that allows you to sleep the best at night. Regret, grief, what ifs will always be present but your job is to pick tye option that limits those feelings the most.
Placement is often the most logical choice.
Some things are not fixable and dementia is the first one that comes to mind.
This is not about being an Angel or doing God's work, or even emphatic and patient. It takes great strength to understand one's limits. I apologize if that was not your intent but your post seems to take a jab at those that understand their own limits.
If that is not the case ignore this final line. Being a martyr is not as noble as people like to make it out to be.
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.
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!
My friend lost her business and her home because she'd promised her mom that she'd care for her rather than place her in a nursing home. Her mom lived to be 99 with dementia - that was five years in my friend's home. A year later, friend's MIL, who had dementia, came to live with friend and husband. She lived three more years. My friend had also caregiven a previous husband through Lou Gehrig's disease for about 8 years. He died in their living room. Now my friend has dementia herself. We hope her husband can take care of her as long as needed, but he has health issues of his own. She wants to die at home.
I knew a woman who raised her Down's Syndrome child to adulthood. Her husband died somewhere along the way, and she took care of him and the child, who lived at home with them. The woman was diagnosed with cancer. One day she shot her beautiful 22-year-old child in her bed, then went into the woods and shot herself. She was sure that no one would take care of her child as well as she could.
Another friend's mother suffered a stroke while taking care of her elderly mother, who had had a stroke. Friend's mother was never the same.
I could go on and on. Caregiving is not easy or simple. It doesn't promote good mental health in the caregiver. Most people are not cut out for it.
You yourself know the situation better than anyone here and are of course under no obligation to listen to what people post.
If people have the ability and they want to and they can, by all means do it.
If people don’t have the ability and they are sick or worn out or lack resources or are sandwiched and then can’t and don't want to, by all means don't.
Don’t do what internet strangers tell you they would do if you don’t want that.
As with any advice, take what resonates and leave the rest. It’s truly that simple.
I wonder if it would be better for Aging Care to offer two support group forums. One for people who insist their way is the only way and want to pat each other on the back for their superior thinking; and a second one for people who care about what the question poster is feeling, venting or asking about. I fit in that second crowd.
I'm sorry you've had people adamantly say it's time for a facility or hospice when they know very little details about your loved one's situation. I think your thread demonstrates the reality of your complaint.
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 suspect that people who are able to make care at home work without losing their minds are not part of the demographic that posts here.
I knew from the get-go that I could/would not care for my mom at home, but benefitted from the advice from more experienced posters about how to beat deal with facilities and vascular dementia.
Perhaps there is a different forum or a thread here to be started--by you or someone else--for caregivers who are happy and determined to keep their loved one at home.
You might want to look up old posts from Jeanne Gibbs, my unofficial mentor on this site. Also CountryMouse and Bookluvr, who kept their mom's at home until the end.
Her death was precipitated by two things; my aunt cut her toenails every month; she nicked her and the cut became infected and she developed gangrene. At the same time, my young brother, then 10 brought home the flu from school. Grandma caught it and it rapidly developed into pneumonia.
Unless you are going to wrap and elder in cotton wool and isolate them altogether with their own bathroom and sterilized meals, they are going to pick up germs. Older people have less effective immune systems than do younger folks. I'm 70 and I am living this truth as I speak.
I hope you feel better soon.
It is a very personal decision with every situation unique. I applaud you for your tenacity and having the type of circumstances that has allowed you to keep him home.
Hillel (1st Century C.E) said
If I am not for myself, who will be for me?
If I am only for myself, what am I?
And if not now, when?
The teaching presents a hierarchy of responsibility, in which our commitment to ourselves needs to be primary, although not singular. Basically, we cannot be effective caregivers if we are not caring for ourselves. (I know: easier said than done.) {Paraphrased from Sefaria}.
I don't think I go around patting myself on the back that my mother was in a facility and that everyone else's LO should be as well.
I find that most of the back patting and shaming that goes on here is from those incredibly capable folks who ARE able to keep their loved ones at home. They seem to think that if they can do it, anyone can.
I like to think that everyone here should keep their options open, much in the way that a doctor offers treatment options impartially, without trying to influence you. (Incidentally, I found I got the best advice from doctors when I asked them "what would you do if this was YOUR mother?")
As for bitterness, Pastor Pat, we've got some folks here who have given up a good part of their lives to provide care for nasty, vicious, abusive and mentally ill folks. By the time they realized there is no moral or legal imperative to provide hands on care in these situations, they are broken and unable to prepare for their own old age. Some have lost relationships, children and their grandkids have no idea who they are. There parents'told them they didn't deserve a life and they bought it.
Just as doctors offer the OP the OPTION of looking into facility care and/or hospice--aspiration is a horrible way to die--we here who have made the choice to get our parents and LO's professional care are offering it as ONE possibility.
I love this. Hierarchy of responsibility.
Commitment to ourselves.
Unapologetic selfishness, taking care of ourselves.
I understand they are busy, nevertheless spoke to nurse about harmful effects of delays or too frequent doses, surprisingly it was taken extremely seriously even neurology department got involved and came up with 2 pages of recommendations and asked my husband for further input.
What surprise me is that nurses don’t know about how little or too much levodopa can affect patient or decrease mobility if not given on time.
This is one of examples for Parkinson’s to do well at home when meds are on time all the time.
And independence is important as increase in dopamine naturally with even little accomplishments is crucial.
Facilities do create dependency by disallowing patients to do certain things, there is such thing as learned helplessness.
At the same time if there is dementia, or other conditions present as well and caregivers health is compromised facility would be necessary for safety for both.
I do understand how some professionals without getting all the facts promote facility, yet, people with PD alone live long and fairly normal lives for long time. Changes come very slowly and gradually. That being said and not knowing now what is going on after hospital from which my husband will be discharged later today and there is always slight possibility although unlikely his condition could be progressing fast right now.
When I worked in education, we used to advise teachers that yelling at the whole class was not an effective method of discipline. The students who were misbehaving paid no attention to what was being said and the sensitive, well-behaved students took it to heart.
If you want to tell someone that they are bitter and that you will pray for them to see the light, do so via private messaging.
Leave the rest of us--who are trying to offer some compassionate relief to the bulk of manipulated and sometimes abused caregivers who come here to find out that they are not "evil" as they've been told by their parents, relatives and sometimes ministers, and those who tell them that caregiving is an honor and should be done with joy--to give them the message that there are other options, should they wish to explore them.
I just read this entire thread all the way through again, with all of the answers and responses to the answers. (so much new is added in responses). I must say that to me this thread is one of the best things on Forum. I cannot think of a side that hasn't been represented. I can't think of a CHOICE that hasn't been discussed, along with all the possible outcomes of that choice.
Just to add, I may be one of the rare ones whose elder (my brother) CHOSE to do ALF rather than a move back to No. Cal by me. Couldn't leave his beloved Socal, his friends, his ex, to be with his one remaining relative, me, his sister.
He was lucky in that he moved into a facility when being diagnosed with probable early Lewy's that already was home to his best friend and ex-partner. He was very familiar with it. And it was marvelous. Still is.
He was rare also in that he learned to love the place before his death of sepsis at 85. He got to go to movies again, something he had long not done. He went on the tours of the star's homes. Cut roses in the grounds, and all the burdens of fear of a fall (poor balance) and of his bills, finances (those I took on) were off him.
He actually improved. Fewer hallucinations. He could actually write letters again. Less forgetful. Funnier. And we often could sit, visit, and discuss his illness, his choices together when I visited him. I loved him so, was so proud of him; I always called him Hansel to my Gretel in any dark woods of our lives.
A bleak, bleak portrait is often painted of care. And I feel lucky that my aunt and my brother had marvelous care in their last years and my parents went in their 90s with no need of it.
There are many sides to all this. And I think this thread is just great in painting them all. In giving voice to all.
I thank you for this thread. I know you were, as you say venting when you asked this question. You were frustrated and suffering. But I think that your thread may help many who are trying to make their own decisions.
To me Ali said it absolutely best with "It's an extremely personal and introspective journey. One must decide for themselves what they can and will do."
I would add that no one should dare to judge another's journey imho. When we give advice on AC we speak of what we feel we have learned on OUR journey. And over and over we tell OPs this is their journey, their own choice, and to pick up what will help them and let the rest lie (or as I say, kick the rest of the advice to the curb).
Some look at Forum in general and this thread in particular and see darkness/divisiveness. I look at it and see the cracks in human limitations and in our variety letting the light shine through.
Thanks again for this question, KP. I hope it long resurfaces here to help others.
Such a beautiful story about your brother.
And no one should be judging anybody.
Caregiving is not some glamours journey, it is full of heart breaking stories.
My husband (if necessary) himself decided like your brother to go to facility
Granted, it is going to be good one.
Will I be sad? Yes.
Will I be happy? Yes, because he will be taken care of and I am in so many ways not qualified to keep that position, nor do I want to be a martyr or slave.
I am no longer a caregiver for my parents. They are deceased. Many of the older posters on this forum can testify that I was approaching burnout when I found this forum.
My emotional health and physical health were being affected. I was so stressed out that I could barely eat. My doctor was upset about me being underweight.
Who can eat when they are exhausted? I was too tired to eat and quite frankly, I was too depressed to eat. My nerves were so bad that if I would have tried to eat, I would have thrown up!
I never got a good night’s sleep either. My doctor sent me to a cardiologist. My blood pressure was sky high.
My marriage was being affected no matter how much my husband loved and supported me. It wasn’t fair to him that I was spending so much time with my mother. We had no privacy in our home.
I missed out on some of our children’s activities too. They were understanding but were disappointed when I had to miss certain things.
I barely saw my friends. I felt so isolated.
Did I need compassion from this forum? You bet I did. Did I need compassion from my therapist? Absolutely!
Compassion is greatly needed initially, but the members on this forum that helped me the most were the ones who told me the unfiltered truth.
I had no frame of reference. My parents were never caregivers for their parents.
I ended up in therapy. Fortunately, my therapist was a no nonsense guy who didn’t sugarcoat anything.
The people who were brutally honest with me helped the most and saved me from completely losing my freaking mind!
When a parent moves in and stays for 14 years, it becomes unbearable. The dynamics of a parent/child relationship changes drastically and not for the better.
I wish I had found this forum much sooner than I did. I can’t go back and change anything for myself but every single time I see someone avoiding the heartache that I went through I smile 😊. If I can help in any small way, I am happy to do so.
All of us, those who were wise enough not to ever do hands on caregiving and people like me who did it and would not do it again have a place at this table. If just one person hears our message, it’s worth it.
Sorry for my long rant and if it offended anyone. It isn’t meant to offend. I am not an argumentative person at heart.
It’s frustrating at times to see how many people see only in black in white when there are many gray areas.
Everyone has a different situation to deal with and must deal with it accordingly. We can listen to each other. We can have a healthy debate and learn from each other. We can also respectfully disagree with each other.
Her point is just that sometimes, people on this forum are too quick to say: the answer is obviously facility.
Equally, people are sometimes too quick to say: the answer is obviously in-home care.
Hubris: the over-confidence that one’s advice is the right one.
This is a posting that allows an opportunity to discuss the topic in its entirety, and not focus solely on one aspect of it.
Sometimes posters post a simple question, but if one looks back on their posting history, they can see that there is far more going on than that simple question. I've seen things such as physical and emotional difficulties, considering suicide, not being able to sleep, etc. When one is to the point of experiencing these things, it usually IS time to consider a facility.
I find your post to be very presumptive and sadly insulting to the OP. This is what I found disturbing on July 12. Very few posting here care anything about this OP's concerns! Don't you folks see this!
Adding insult to injury, you post glowingly below about a post by Need Help With Mom which begins with: "Anyone want to start a thread on why it isn’t the best idea to care for someone at home?"
I don't understand this cruelty. I hope those of you participating in this gang-up to humiliate KPWCSC for daring to share feelings about recommendations she's received on the forum can recognize what you've done. That will take some prayer, I believe.
Dear KPWCSC,
I'm so sorry!
The true colors of many posters have been exposed here.
Maybe there is a better forum where you can find like-minded and supportive people. I am not inditing all. Everyone can see who's responsible for potentially creating hurt and feelings of isolation for you, and who hasn't done that.
The last attempt to so publicly frame you as suicidal, someone with physical and emotional difficulties, overwhelmed by your husbands needs is DESPICABLE in my opinion!!! I'm surprised the Forum allows this but maybe I shouldn't be since I was the past victim of some egregious attacks from a few forum members ganging up on me and trying to rally others to their side.
Thank you for liking my posts on this thread. Have any of the numerous other posters even noticed whether you voted their posts as helpful? Or do the vast majority only care about about pleasing and receiving votes from each other?
It's been each other they've been posting to while altogether ignoring your OP frustration. I don't think that's how it's supposed to work here. That was the point I tried to make, not as gracefully as I wished, but I did make it.
Sadly, very few cared or tried to address you following my post although I see a couple thoughtful posters tried. May God bless you KPWCSC and provide happiness, health and comfort for you and your spouse.
If no one cared we wouldn’t be responding to this posting.
Perhaps you have misjudged what people are saying. I’m sure that you care about the OP as well.
There are different ways to view a situation. The OP will have to read what is written and decide what is applicable in her particular case.
"Sometimes posters
(CTTN is not talking about the OP; she is talking about why some of us recommend facility placement when few details are given)
post a simple question, but if one looks back on their posting history, they can see that there is far more going on than that simple question. I've seen things such as physical and emotional difficulties, considering suicide, not being able to sleep, etc
(CTTN IS NOT SAYING THE OP IS SUICIDAL OR BREAKING DOWN; simply that we've all seen posts like that)
When one is to the point of experiencing these things, it usually IS time to consider a facility."
What I see is that the OP is frustrated that many of us recommend facilities and that medical professionals do as well.
We understand that she is frustrated. We all have sympathy that ER docs and therapists are recommending something she doesn't find necessary yet.
I can't see what the OP has liked or not, she seems to have shut down her profile.
I don't see ANYONE here insisting that facility care is the only way. I do see lots of good advice about incontinence briefs, draw sheets, DMEs that help elders lift themselves, adjustable beds, placing mats by beds and the like. Also, copious recommendations to watch Teepa Snow videos for the best way to manage the illogic of the broken brain.
We have all laughed at the absurdity of CTTN's mother who considered her working daughter her personal chauffeur with no regard to her own time and shouts of "you don't pay family". We have wept with frustration alongside Dorker and MidKid with their incapable mothers in law, dense husbands and catering SILs. And we have cheered Burnt, NHWM, Beatty and many others here who finally stood up for themselves and were empowered to say "no" to relatives who presumed that their closest female relative "had" to be their caregiver.
PatPaul, if you stick around, you might learn some valuable lessons, as have most of us.