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 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.
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 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.
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.
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.
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'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.
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.
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.
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.
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.
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.
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.
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.
As far as hospice goes, I've know elders under hospice care for 2 years. It's just another layer of care and comfort care provided to elders who have incurable conditions such as dementia and who are sick and tired of being schlepped back and forth to hospitals like cattle. The poking and prodding stops, which is a huge relief for many.
Years ago I wrote a weight loss blog. My message was simple and straightforward: If you want to lose weight, stay on the program and don't veer off of it. People would become so angry and hostile towards me for speaking my truth, or, what holds true for the vast majority of people trying to make a lifestyle change. Don't shoot the messenger. Don't take my advice, either, if you don't like it, but don't message me asking why the program isn't working and why you're so miserable. It's the pizza and chocolate cake causing misery, not "the program" you aren't following.
Forums are designed to be helpful but are not a one-size-fits-all approach to everything. If caring for dh is working for you at home, great. God bless you and good luck to you now and down the road. Facility life isn't for everyone, as home care isn't for everyone either.
I suspect we have been limping along all these years and I also suspect that it’s about to take a sharp nose dive down and fast. It makes my stomach have butterflies even thinking about it because she is going to want it all to land on me.
I have my own health issues and stress and a DH (her only child, child of a narc) who is never home and who has a stressful, fast paced, in demand career. He is at the top of his achievements and isn’t slowing down.
I’m sitting here seeing all of this and knowing I struggle to take care of myself and I’m looking around and there is no one else and I’m like….NOOOOOOOOOOOOOOOOOOOO.
At least DH knows I won’t be able to care for her and he also doesn’t want her stress in our house.
She is uncooperative, difficult, sometimes mean, and super manipulative. She won’t assign POA. She won’t put either of us on her bank accounts. Etc, etc, etc.
Ive been sitting here off and on for about ten years reading and reading and reading to get advice, ideas and experiences.
Believe it or not, as recently as two years ago I thought it would be easier for all to move her into our house. I was the one suggesting it to DH. And remodeling the house to accommodate her! Thank goodness, I never told her that.
This has been a worthwhile discussion. I am grateful for it.
This thread is helpful to me.
in the beginning I also felt that posters were very quick to recommend facilities. I thought this could be weathered at home. Silly me, I had no idea how intolerably awful it would become.
So If I am quick the recommend a facility, that is why. The stress of have mother home is not working anymore. She is one a fall away from going into a NH.
"I know it totally frustrates me each time I see it offered with little justification knowing few details."
"Few details" says it all. Yes, we all then have to assume where the OP is going because of the few details given. And those assumptions are based on that most people come here because they have come to the end of their rope. We ask questions and get no answers. OPs never return.
I can understand that the words Hospice and Nursing home rub you the wrong way because...you and husband are not there yet. When its brought up the next time DH is in the hospital just say "Thank you for the suggestion but DH and I are not ready for that yet" then smile sweetly. Its only a suggestion.
I think its time that this question now be closed. Its now causing dissension.
Some posters are physically, emotionally, intellectually, medically or intellectually unprepared to be a good caregiver. That is often obvious.
In those cases, the patient is getting substandard care. Often it's because of the patient's own unreasonable demands of "don't put me in a home!" Or "I want to die in my home and I don't care if I destroy my children's lives while I take 20 years to die messily while dirtying 20, 561 diapers that they have to change." Or "Daughter, dear, you don't need that job that will ensure your happy wealthy retirement, get over here and cook for me three times a day, give me my insulin shots, and clean the litter box for my four cats. And by the way, you're a disrespectful girl and I hate you." Or the boozy smoking husband who stinks and lies like a slug in his recliner while his wife is slowly falling apart.
If the caregiver coming here for support is not ever going to be able to turn her bedridden father in the bed, is crying every day because of her exhaustion, needs medical care that she's not getting, and is obviously unable to learn to be a good caregiver - that caregiver needs to give up and place the patient for the patient's own wellbeing.
And also the caregiver's wellbeing. No caregiver deserves to be dragged into a premature grave by this grueling thankless work when there are places that can take of patients so much better than we can.
Or “I threw my back out because LO only wants me to flip them over or pick them up off the floor.” Or “I’m elderly and on disability because I have (insert major chronic health condition) and my LO expects me to do 100% of the work.”
Or “My LO wants me to leave my husband, children and my house to move in with them so I can be their slave”
I mean, goodness, the stories we have seen!
People don’t come here because everything is great. People come here because their lives have fallen apart.
It takes a LOT of money to keep a LO at home with proper care so that the spouse, child, whoever is also comfortable living there where everyone can thrive.
I would say 80% of posts are from people whose LO doesn’t have money, resources, LTC plan etc to keep everyone living in the style to which they are accustomed.
Lack of money = lack of choices.
OP is very clearly lucky she has choices. I’m happy for her because having choices is always better than not having choices.
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.
Many people here are children of elderly parents who have spouses, jobs, children and a facility is more compassionate than them leaving their jobs, or disrupting their marriages and families.
What was right for you may not be for many. But make sure to share your experience, as so many people will need to know it.
1) a lot of caregivers come here for the first time at the end of their rope .
2) Many of these end of rope situations tend to be similar in nature , caring for an uncooperative parent with dementia , or mental health problems . Or caregiver is trying to work and can’t leave parent home alone , or the caregiver is older or not in good health themselves .
3) I tend to answer these questions for people as described in (1) and (2) because I have experience in similar caregiver situations . Despite going into caregiving. with not wanting to put a parent in a facility , I had no choice . Parents often don’t want to be told what to do by their adult child , including eat , bathe , change incontinence product .
4) Therefore, I am probably one that gives the send a parent to a facility answer more often than not if the parent is uncooperative . My mother’s doctor told me to put Mom in a facility because I could not get her to eat , bathe , etc . This geriatrician told me that some parents just won’t listen to their children and will refuse anything especially when they have dementia and the parent can not be reasoned with . The doctor said , some parents can not be taken care of by family , (adult children or grandchildren) because they always think they are in charge no matter what . Now I have similar situation stubborn with FIL with dementia . Would not shower , refuses to use the toilet when I asked , refused to change incontinent brief often enough resulting in leaking on the furniture . So to a facility he went . Some parents are just too difficult to live with as they still think they can tell their adult children what to do .
5) That being said , I would keep my own husband or adult children home as long as possible if I was caring for them .
So there’s that . There are many kinds of questions. I just tend to answer the same type of questions. I will not change my answers if I believe any caregiver is burnt , broken , in emotional distress, guilt ridden , etc . because I wish I had come to this forum years ago and had someone tell me that I could give up being a caregiver and to not feel guilty about it . Even when they are in a facility , it’s not easy , guilt trips etc. And there is overseeing care , being an advocate , financials to do . These broken caregivers often feel they can not or should not put someone in a facility due to guilt or a promise. They don’t always ask about putting someone in a facility or not . They just say they don’t know what to do.
Welcome back from your break from the forum!
Don’t you think that with you being a nurse that it was harder for you to do any additional caring for family members?
I would think that it would be harder in some ways and maybe easier in other ways because you know what to expect and perhaps even what to do for them.
You know what I am saying though. There are people who are married to people who do home renovations and such and they say that their spouse works hard in their field on other people’s houses so they are sick of it and don’t do any of their own repairs at home.
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I couldn't imagine how you would find time to look for the questions that prove your point and take care of your husband. Those questions are out there, I agree, "facility placement" is often thrown down quickly as the be-all and end-all.
As BC often says, care situations have to work for both parties or they aren't sustainable. Many of the posters are in unhealthy situations and do need encouragement to make their situations better.