Why are do many in this forum adamantly say it is time for a facility or hospice when very little details about a loved one are included?

What CTTN wrote:

"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.

If you are willing to give that level of care that is wonderful. I moved my parents into assisted living because I have 8 Grandkids, a husband and they had many health issues including incontinence. Dad passed, Mom has been bed ridden for over two years.

i am not a terrible person and my parents were and Mom is very happy with the care. Placement is not abandonment, I am there at least for every other day for hours, order the supplies, pay bills etc.

i think it is up to every family to make the best choice in their situation but I will not have anyone try to make me guilty for my choice

I have read many, but not all, of the posts on this thread. I posted fairly early in the thread. I answered the original question honestly. I hope OP did not take my post as critical, as that was not my intent. I was looking at the question as interesting , almost from a statistical view, as my brain is very math oriented.

To recap, I wrote that many come to the forum at the end of their ropes, hence the number of suggestions of a facility. I also wrote about how many need to hear that it is OK to put a LO in a facility , when they think they cannot due to feeling of obligation, guilt, or promises. .

There was some debate on another thread recently because some people simply answered the question only ( as I did this time) and did not take into account the OP's text following the question. Depending on each individual case it may make a difference in how a question is answered.

Some threads grow into more debates than others. However, in general what I have seen on the Forum at times, is people getting criticized for putting someone in a facility, or suggesting putting someone in a facility. I don't see criticism for keeping a LO home.

Unfortunately, in a number of cases that come to the Forum , a facility is the only suggestion left. We may not agree, or like some suggestions, but caregiving can be a difficult and emotional situation to be in . The decisions aren't easy. The solutions are the least bad for all involved.

KPWCSC, having had a husband with Parkinson's, who passed away a year ago, your situation really resonates with me. I know that hospitals and rehab facilities really need to be reminded about the importance of keeping to the medication schedule. I also know that a lot of general medical providers and nursing staff aren't as familiar as they should be with the needs, deficits, and capabilities of people with Parkinson's and make assumptions about whether a person can or cannot manage at home. My husband passed away from a stroke before we had to face decisions about a feeding tube or possible institutional care, but he and I had discussed these. We had decided that if we couldn't manage his care at home he'd go into a facility. He did not (yet) have any dementia and was mobile with a rollator but was starting to have problems getting adequate nutrition. He had LTC insurance so we could have afforded a nursing home, a least for a few years. We did have home heath aides three days a week for 4-hour shifts, which was a big help with showering, etc. and which allowed me to be away from home for errands, volunteer work, etc. We would have been able to increase hours as needed which could have prolonged the need for institutional care. But if my husband had been in a wheelchair, for example, I would not have been able to manage on my own and 24-hour aides would have quickly exhausted his LTC insurance benefits. I think a lot of posters here are not as fortunate in having adequate financial resources to maintain a loved one at home by paying for outside help.

I've been on the AC forum for a number of years (3? 4?) and haven't felt people are so quick to recommend institutional care. I think it very much depends on what the OP is coming here to find. As others in this conversation have said, some posters come here already burned out and desperate and it's those situations when responders are recommending institutional care. Other posters come with specific questions related to caregiving at home, e.g., nutrition, finances, incontinence, and for the most part the answers are very helpful and specific. However, even in these specific questions it sometimes becomes apparent that the OP is dealing with an untenable situation trying to manage care on their own so posters will sometimes suggest it's time for institutional care.

I try to say as much as possible with out saying too much.
I have family members who peruse this site and I wish to remain anonymous.

I've been following this thread, but haven't commented. There are some outstanding, well thought out, well reasoned and well written replies here. From all perspectives. There are truly some talented posters here.

The only thing I want to add is to those who don't agree when one of us recommends to a poster to place his/her loved one in a facility to please post your opinions in that thread what your thoughts are. And if more details are needed from the OP, than we need to ask those questions. If you can offer alternative advice that would be more helpful to that OP, please do so!

Ditto. Just took a blast of it on my first post. People aren't looking for you to solve all their problems. They just need a bit of sympathy and encouragement. I didn't ask for any advice, just needed to vent. But I sure got plenty! God bless you.

This is the last posting that I received from patpaul:

Need Help With Mom

I didn’t say that I didn’t want to be addressed. I wrote. Please folks, muster your abilities to show compassion for the OP.

I thought you might want to address the OP instead of ignoring her frustration.

Do you think it’s disrespectful to write a post that starts with -“Anyone want to start a thread on why it isn’t the best idea to care for someone at home?”

Can’t you see that is a slap in the face to the OP?

I find patpaul’s message to me to be quite condescending and passive aggressive.

I am not a member of patpaul’s church, nor will I ever be. I feel that he should save his preaching for his congregation. I certainly don’t feel it is appropriate for a community forum.

Obviously, this man doesn’t know who he is speaking to.

Those who know me on this forum know the type of person that I am and what I stand for.

I am not looking for a stamp of approval from patpaul.

I do not agree with patpaul’s views or beliefs. As delusional as his views are, he is entitled to his own opinions of me or anyone else on this forum.

patpaul,

Please try to practice what you preach. You must give respect to receive it.

Attitudes such as yours will only drive people away from your ideas of what you perceive to be as compassion.

Anyone who has ever read my postings knows that I have enormous empathy for others who have been caregivers.

I totally agree with you and have also noticed the same answer o this Forum…”time for a facility”. To me that says “dump mom or dad or husband in a nursing home, see yah!” What happened to honor your mother and father? As long as my, now 98 years old, mother is alive I will never put her in a “facility”. I couldn’t live with myself. I recently signed her up for hospice care at the quick & impulsive action from a physician that wasn’t her PCP. I’m going to revoke it! She’s still seems ok even though het condition could go south anytime, I will deal with that at the time. Hospice is so gloom & doom. I have hope that all things will work out how it is destined by God, the only One in control.
So, putting a loved one in a facility may facilitate a quicker death than being at home with family who authentically cares & loves them.

There are so many valid reasons why someone would place their loved one in a facility.

The number one reason is that it becomes necessary for the loved one and the caregiver.

Many of us started out by ‘helping out’ for our loved ones. Helping out occasionally is manageable.

When the ‘helping out’ turns into consuming our lives and we start to realize that our loved one needs more care than we can possibly provide for them, it is time for placement.

Becoming an advocate for a loved one in a facility is the most logical and effective choice.

It may be an easy decision for some and a difficult decision for others. It is a decision that is made out of love for the parents who are in need of professional care.

Caregivers deserve to resume their lives, and simply become sons and daughters again instead of full time caregivers.

KP, I very much hope that you and your husband are doing well today and that you can find the support you need to keep him at home as long as you want.

Even though I've met some wonderful people in the facility I'm in, I wish I didn't have to go to be here.

Thanks to getting sick(probably from the kitchen) and being bed bound for over a week, all that I had accomplished has been undone, so it's like starting over again.

Again, keep your loved ones out of being placed as long as you can.

Cover, glad to know you're feeling a bit better. Keep on keeping on, my friend!

KP - ugh - this new format is impossible to follow, but I did read your recent comment saying - "Then if you re-read my post, you will see my opening statement WAS… “Please allow me to vent.” 

It's confusing because your post statement was contradicting that, and in the form of a question - asking "why are so many on this forum adamantly saying it is time for a facility when little details of the loved one are included?"

So, was your question a "rhetorical question" - in other words, you didn't want a reply and just to "vent" or make an accusation that many didn't agree with? Because that question is also a "loaded question"...as it sparked a large debate here because so many didn't see it as you did. And in this debate, it sadly took a bad turn and very unfair judgments were made by some - and nobody deserves that - especially here.

I definitely understand and can empathize if you were hearing repeatedly feedback from professionals in the medical field (ie doctors, nurses) about placement options, but that's separate from this forum...and there's been lots of advice on this forum from those who have provided advice for the incontinence and balance issues mentioned, etc. Usually feedback from others cover a range of options.

Perhaps going forward, whenever seeking either professional advice or feedback from those on this forum, you (or anyone else) can just preface their question by stating to kindly refrain from making mention of any outside placement to a facility - and you (or anyone) are ONLY seeking advice on new ideas for in-home care on your specific issues. That way, there are no issues!

...KP - and one other thing...please understand that the way in which you had written this post caused the range of responses that transpired.

from tiredsister to hopeforhelp22:
Excellent advice!!!
I recently posted a question about my sister not being able to process my reminder notes. It was not life or death, no safety issues involved, and the reminders I received about aphasia (as symptom of dementia) were VERY helpful.
That being said...many who said this was a sign my sister could no longer be trusted to live safely unsupervised in her apartment, needed immediate placement in MC, seemed over the top to me.
It is, in fact, over the top. This is a new development in the progression of her vascular dementia, but not a game changer by any means.
One member suggested I was probably "missing" other signs of her dangerous degeneration, and should place her immediately in a facility for her own safety.

My sister is not falling off a cliff, symptomwise, or safetywise. Her symptoms come and go.

I do know there will come a day when she cannot live safely on her own for any period of time at all. I also know that that time is NOT now.

Of course, I will take steps to prepare for that day, but I'm not going to act on that before it is necessary.

LIke any support group or forum...take what you need, and ignore the rest.
I do believe all here who offer advice and support mean well.

I am the OP. Before responding, please read this post entirely. I finally read through all the comments and appreciate all who read and comprehended my original post. Someone was curious why I haven't responded during this time. I did respond to a couple of comments but it seemed to create more divisions. I apologize for the misconceptions and disagreements that resulted. Some even suggested this should be closed especially when it reached 34 answers and while I agreed at that time, I could not find a way to send a request to the admins.

Some seem to feel I live in a bed of roses, have no struggles or am wealthy so I can care for my husband at home. While others commented I must be at my wits end. None of these are true. I did not write the complete history of the lows and highs of my care giving journey because I felt it was irrelevant.

As some well understand, Parkinson patient's can be very different from every other PD patient. This statement may apply to other chronic conditions as well.

Here is a quote: “Every PD patient is unique and everything about his or her disease is specific to him or her and ONLY to him or her. PD has only one time - NOW, the present. The previous hours do not forecast how you are going to feel. The only thing that is predictable about this disease is its unpredictably.”
~~Written by Rick Kramer and Margaret Tuchman~~

As I tried to express in my original post, I was not looking for advice as to why I should or shouldn't consider a facility. I was venting and wondering if others had similar experiences when others (especially providers) often immediately suggest a facility or hospice no matter what the current issue is... especially when they have little information. I hoped for empathy if anyone had similar experiences and I felt that but only from a few others.

I totally get there may be a time in our future where a facility or hospice might be a wise choice for my husband to get the best care. I never said I was opposed to either of them. I'm opposed to suggesting a facility when someone shares about dealing with incontinence, any level of dementia, falling, etc. Yes, I get those are some of the reasons to consider a facility. But don't assume every issue shared is driving everyone to the edge of a cliff and desperately need to learn about facilities.

I came here originally because I am always looking for answers to questions I might not know I should have. I have learned a lot about why and why not look for a facility or consider hospice. I have learned a lot about products, companies and solutions I did not know existed. I do ignore the info that is not useful for me now but put it in the back of head to pull out later if needed. Most importantly, I have learned to always seek more knowledge about how to be the best advocate/caregiver for my husband and myself.

Twenty years ago when my husband fell broke his hip, there was so much I did not know as a caregiver and my world crashed overnight and very soon I wondered... is this what our lives will be like forever? He did go to a facility for rehab but still needed lots of care at home for 6-9 months. I learned then to check out every new resource that comes my way so when I discovered this forum, it seemed to shed new light on things I have not experienced yet as well as things I wished I had known earlier.

My original post was a result of reading a response to someone who commented about incontinence and falling but I saw nothing about feeling at the end of their ropes. Maybe they could have used basic info on better incontinence supplies or the fact that PT and OT may help minimize the risk of falling. There is a polite way to say it may be time to consider a facility but that answer came across as "Put them in a facility!" I don't believe I am the only one that came here simply looking for insights to becoming a better advocate/caregiver hoping to make better choices to avoid reaching the end of my rope.

Hi KP - sorry for the confusion in my words - I'm sure that anyone who read your question posed would, of course, subsequently read the entirety of your post. That's not the issue! 

I just wanted to respond to your current comment back that "you were venting and wondering if others had similar experiences when others (especially providers) often immediately suggest a facility or hospice no matter what the current issue is." - but I want to respectfully say that that is not what you asked - not anywhere in the post. The question you lead with was asking, -"why do many in this forum adamantly say it is time for a facility or hospice when very little details about a loved one are included?" - and that is entirely different...and a question that changes the trajectory of the conversation. You asked the forum members "why"...so, with that, it justifiably unfolded as it did.

And what saddened me was that the conversation shifted to some passing judgement in relation to those caring for a parent - and I found their hurtful words inappropriate, and coming from a place of ignorance.

I understand if the impetus of your post resulted from frustration over a specific comment you had previously read - it happens to all of us! 

Most importantly, my heart goes out to you for the health challenges that your husband is experiencing - you have provided tremendous care for him, and I'm wishing you miracles for positive improvements, new resources, and for continued strength and healing during this time.
- sending my very best wishes -

HI KP - thank you for your reply and I totally understand your point...it's very understandable and makes sense.
I appreciate your well wishes too. :)