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.
You asked a question. It is the heading and is here clear for all to see.
The questions was this:
"Why do so many in this Forum adamantly say it is time for a Facility or Hospice when very little details about a loved one are included"?
That is a question, not a vent.
Again, for myself, simple answer.
I have known all my life that my own limitations would never allow me to do care for someone 24/7. From all I have read on Forum I have seen on Forum over the course of more than four years I have seen that it doesn't work for almost everyone.
That's why for ME. As to why others suggest in-facility care that is theirs to say.
I was an RN.
I loved it. I was well paid and I had to work only for 36 hours each week, 3 12 hour shifts with five weeks vacation, 12 holidays and as many sick days. It was a delight.
I would be totally incapable of that care 24/7.
I have to ask you something. When you go into a doctor’s office or a hospital, do you tell them that you are a retired nurse?
I have a friend. She worked as a nurse for over thirty years and she tells me that people can get a snarky attitude as soon as she mentions that she was a nurse.
I have a few friends that are nurses. I have to say that some of the behind the scenes ‘nurses’ stories are fascinating and can be very humorous!
I was not trying to say a facility is always the "wrong" solution nor was I trying to say that staying home is always the "right" solution. I totally respect each as a valid option. It seems that few read my whole message. I began with the phrase... "please allow me to vent"... meaning I wasn't asking help to decide if a facility is appropriate nor was I expecting so many to try and justify their decision which was obviously the right choice in their case. I also agree caring for a husband or child is totally different from caring for any other relative or friend. My grandmother and my father were in facilities which was the best option while trying to care for them.
And will try to ask more questions to get clarification about a new posters situation.
Spouses are a different ballgame. I would take care of my spouse longer than I would my parents because I take my marriage vows seriously, but if I was unable to do it any longer I certainly would not want my only child doing the caregiving. I would place him in a facility.
As for myself, I will be sure to go into assisted living myself or nursing home myself. I do not want to be a burden to my daughter.
I learned a lot these past years, and these lessons are not pretty ones. Those are my criteria about facilities and hospice based on my life experience.
On the other hand...caring for a spouse in "sickness and in health" is a vow and I take that seriously. My mother made many bad choices in life and unfortunately those choices should not negatively impact my life - but they did. I am sitting here now, just waiting for word that she will be accepted into the AL that the SW found for her. It won't be over for me as I am POA. But one step at a time. My next move is to get a public fiduciary and state appointed guardinship.
Seeing a parent suffering is hard for sure. Seeing a spouse suffering is even harder!
You are the only person who can decide what is best for your particular situation. There is no right or wrong way. It depends on the individual circumstances.
In my opinion, this forum should support people who choose to care for their loved ones in their home equally as much as those who choose to place their loved ones in a facility.
I do know what you are feeling. When I first started posting on this forum years ago, some posters immediately said that I should place my mother without knowing our particular situation.
Take any advice that you find useful to you and toss any information that isn’t relevant in your particular case. I do feel that we should remain open minded about what others have to say. We do learn from others and they learn from us as well.
The first time I came into the forum, I was looking for advice dealing with an ER doctor who not-so-thinly accused me of elder abuse when I had my mom brought to the ER. I had explained in my narrative - to give some background - that my mom had a bad habit of putting off medical intervention for illness until she was really, really sick; this had been her habit all of my life. In her defense, until the last 24 months of her life, her usual illness were generally of the aspirin/chicken soup/bed rest type, in which rest and time would see her through. But when her heart failure kicked up into the serious stage, she couldn't do that anymore.
But the advice I was looking for was more about what to say to this particular doctor. Since she had been not feeling well, she hadn't been eating, and I guess the doctor asked (after I had left) "when was the last time you ate?" and she answered honestly "a few days ago." Well, he jumped to the conclusion that we were purposefully withholding food or not cooking for her or whatever and called me at home with this sort of accusatory tone of voice, which I so didn't appreciate.
In that initial post, I got some awesome advice about dealing with doctors, particularly ER personnel who only see our LO's for a "bubble of time" - put very aptly by one of the kind responders to my post. But I also got a number of "she should be in a home" comments, along with 1 or 2 "she should be on hospice, she's telling you she doesn't want to live anymore". I remember thinking "huh...how did you come to THAT conclusion?" and then thought I probably didn't add enough information into my original post. So, I added more details, got more good advice, but also got more "place her" comments.
I just ignored those comments. I didn't think I was being judged; I just think that people give advice based on their own personal journey, and for those people placement seemed to be the best - or perhaps only - option.
For myself, when I answer questions here, I try to answer the *specific* question that's asked. Sometimes I go off on a tangent; I try to stay on task, but sometimes the specifics of the situation described are so myriad and complex that you have to expand answers to explain where you're coming from.
I will also say that from my observations here, the people who immediately go to "place your LO" are not usually the most prolific commenters on this site. That doesn't make their suggestions invalid; I just think that there are some people who can't get beyond a very linear way of thinking.
If I were you, I would continue to ask questions you are looking for answers for, and take what you want from the responses, and let the others go. No one should think the worse of you for that. All of us who are doing or have done caregiving are navigating the same leaky rowboat, trying to move forward while bailing out the gathering water. Unlike many other social media platforms, I have found much more support than criticism on this site, and I was grateful for the advice I got here when I was at wit's end and needed it.
My mother’s been in care for almost 2 years (respite, hospital, now a care home) and I’m finally cleaning my house and sorting her stuff and, best of all, doing fun things with my kids. We’re almost empty nesters so we’re making the best of our time. (youngest just finished high school)
Parkinsons seems to be an individual thing. A classmate had it for 25 yrs and he died at 72. His wife was an RN. He was such a sweet guy. Until the last 6 months of his life. Dementia had set in and made him mean an hard to handle so his wife had to place him.
I usually suggest a facility because the person is at the end of their rope, Alot of OPs are not even aware of Medicaid. Aren't aware they have options. Maybe your just being given an option. Home is the best place until it isn't. I have promised my DH nothing. I have told him I will care for him until I can't. I am 5ft tall to his 5ft 10in 200lbs. I have never had any upper body strength.
Its nice that you feel you can take care of your husband and that you know when it will be too much. But I find most OPs are looking for options and need to hear, its OK to place you LO.
Please re-read your first two statements! Then if you re-read my post, you will see my opening statement WAS… “Please allow me to vent.”
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.
Not everyone has the same dynamic going on.
My MIL has been in active Hospice for going on 6 months now. She was deemed 'imminent death' when placed in Hospice and having her kids running themselves ragged for the last 5+ months making sure all her needs and wants are taken care of---well, it's been our own little hell.
She SHOULD have been placed in a NH facility when she had a stroke 6 months ago. She didn't want to go. We thought she was going to die within 2-3 weeks, which is what best medical advice told us. Every out of state family flew/drove in to see her and say 'goodbye'.
Well--she's rallied and although she barely eats, can't remember anything and is miserably mean to her kids (the only CG's) she will allow--she's still at home, thriving and slowly killing her 'kids' (ages 74, 71 and 66).
I worry daily that her incredible need for care is literally going to kill my DH.
She's 93 and says she plans to live to 99-1/2. If so, she will almost assuredly live longer than my DH. I resent every minute he spends with her, b/c it all brings him down so much. He's depressed and angry all the time.
She's not unusual, if you read the posts on this site.
We are quick to suggest in home care or even placement here b/c that is often the best solution to the particular situation.
If keeping a LO at home is doable and not an undue burden, physically and emotionally, then great! But most people here are past that point.
It's a matter of doing what works best for your situation. NH's exist because families simply cannot maintain the level of care that is required by a 24/7 'need'.
My MIL will NEVER go into care. The kids have promised. Our Spring was ruined, and now our Summer is too. we can't go anywhere, since DH is on call for a 24/7 shift every 3rd day.
On his 'off days' he tries to get out and golf, then he's home and sleeping, to decompress. He literally retired and went straight into caring for his mother. So far, retirement has been a bad joke.
We all encourage each other to do what we can--sometimes, that's just 'hanging on'.
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.
It is believed by specialist i.e. neurologist and some others, people with Parkinson’s do better at home than facilities. There are several reasons for that.
My husband like yours did fracture his hip almost 3 years ago and his mobility decreased, he is able to walk at home on his own, he is highly independent, dressing, meds etc. Yet, we had SW recommend facility after surgery, we were able to have very normal life, full of social interaction, travels etc.
However, this all change recently, he is in hospital for over 2 weeks because of very limited mobility which is not due to Parkinson’s.
For now all drs know he is super healthy otherwise, no heart problems, no stroke, nothing! Every test, multiple MRIs, CAT scans, ultrasounds on every organ!
He is not incontinent or have dementia.
However, if any of those issues arise, I know my limitations, especially knowing myself well and my personality, it will not be healthy for both of us to continue.
You are right and I totally agree with you. Dementia and incontinence changes everything.
I don't do hands-on care anymore, but I stopped dealing with incontinence and dementia a while ago.
I simply cannot deal with either anymore.
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'.
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.
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.
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.
The posts I read are not that at all. I am reading posts from caregivers who are burned out, whose marriages are suffering, who are at the end of their ropes, who are themselves declining mentally and physically because of the toll caregiving causes in their own personal lives. I also read posts where caregivers got in over their heads thinking it would be temporary or not understanding how soul sucking caring for an elderly narcissist is.
Perhaps OP can give us one recent post demonstrating this “simple caregiving help” that is requested.
Does that describe your husband?
Also, some people are too quick to say: stay home!
Why do people do this? Because people make mistakes. They mean well, and sometimes give the wrong advice.
The only person who knows the whole situation is OP. The only person who lives with the consequences of taking or refusing the advice (which might be totally wrong advice), is OP, not the “advisors”.
It’s easy to give advice. Following one’s own advice is hard.
On that note, I’ll take better care now of my life and health.
The answer to your question is this: when caregiving at home stops working for the caregiver (because of their own health, need to work outside the home, tend to children or spouses) the situation has stopped working.
Or, the patient's needs outstrip what is available at home, either in terms of supervision (due to elopement) or medical care (I have no stethoscope skills, my mom's CHF required daily monitoring).
My question was not "when" is a facility appropriate. I know the answer to that question... it is appropriate when the care team who knows the loved one best: the personal doctors, the social worker, the nutritionist, along with the family... agree it is time.
My question was why do so many on this forum miss the point of questions asked about a simple concern and say the solution is a facility.
Only a small percentage of caregivers here are actually asking questions about using a facility.