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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.

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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. :)
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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 -
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KPWCSC Jul 2023
I completely agree with your statement...
"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."

Responding to your comment...
"The impetus of your post resulted from frustration over a specific comment you had previously read - it happens to all of us!"

The impetus was not over that one specific comment, the impetus was over what has seemed to me as one more comment in a pattern I have seen over the last few months. I was just finally giving one example that several seemed to need me to give to justify my concern.

Thank you for your concern for me and your best wishes. I wish you only the best for you as a caregiver as well. Please lets let this be the end.
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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.
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ventingisback Jul 2023
(((Hug)))
I get what you’re saying.
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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.
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...KP - and one other thing...please understand that the way in which you had written this post caused the range of responses that transpired.
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KPWCSC Jul 2023
I felt that some of the inappropriate responses caused other inappropriate responses.

It would be helpful for me if you would consider rewriting my post and send it to me in a private response so I can better understand what was wrong with "the way in which I had written my original post" and see how I could have said it all better..
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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!
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KPWCSC Jul 2023
What you are saying sounds to me that most people possibly only "answered" my question and never read my post.
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Cover, glad to know you're feeling a bit better. Keep on keeping on, my friend!
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anonymous1732518 Jul 2023
@ BarbBrooklyn.

Thank you so much my friend!! I am definitely going to keep on keeping on. I think it was food poisoning that had me laid up for a while.
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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.
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NeedHelpWithMom Jul 2023
Cover,

No one wants to lose their independence.

I hope things will improve for you soon. It is sad when things go wrong. Continue to be an advocate for yourself.

Fortunately, facilities do help in most cases.

It helps tremendously if a person has others who speak up for them. Do you have any family members who could share your concerns with the staff?
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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.
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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.
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Basictakes99 Jul 2023
To be honest, I would argue even after placement you are still a full time caregiver.

Advocating is a fulltime job. That is one point people have hammered into me. Your role does not necessarily get easier just different, and in some chases you end up with more work and red tape to follow.

Sadly it seems ones life really does not exactly go back to normal afterwards. Being a caregiver changes you forever.
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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.
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NeedHelpWithMom Jul 2023
It is your prerogative to do as you wish regarding the care of your parents.

People on this forum are only making suggestions.

Many of us are basing our suggestions on our own experiences with our own caregiving situations.

Our intention is to help others by avoiding the pitfalls that we have encountered. It certainly isn’t to criticize your caregiving abilities.

One more thing, not everyone has the same views on what God expects of a person that you have.

Best wishes to you as you continue on your caregiving journey.
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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.
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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.
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southernwave Jul 2023
There has been quite a bit of gaslighting going on in this thread as well.
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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.
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patpaul Jul 2023
Nkellysc - Where is the post you're talking about? I'd love to see it. It's unfortunate this happened to you. I'm sure KPWCSC feels that way too.
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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!
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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.
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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.
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Evamar Jul 2023
Newbiewife,
I am sorry about your husband.
I as well care for husband with Parkinson and understand OP frustration as I encounter lots of assumptions being made about this disease.
Parkinson is no longer old man disease ( and I say men because statistically more men get it) and the number of people being diagnosed each is staggering, so any information and personal experiences are invaluable.
Thank you for sharing!
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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.
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Burninout36 Jul 2023
All of this.
When people suggest a facility, I'm not offended. There is a beautiful one so close to my house that it would be a DREAM to put my mom there. I'd move into it if I were eligible... I've met the staff and toured the property. But, alas.

Many are conflicted with the idea of someone else taking care of their parent/spouse/etc. But when said loved one is beyond our own care, and can be looked after by nurses, social workers, in a safe place, seriously I have all the brochures... it would be WONDERFUL.

Then we have heard the stories of abuse in them, the horrific conditions, etc, which scares us. Or some of us have experienced this first hand. This is not easy.

But to suggest outside care is never a wrong piece of advice. We're all on here because we are suffering alongside this too. When you have a parent, who despite their broken brain curses you left right and sideways while you are doing your damndest, anyone would break. When you are at your wits end with a parent who despite all you've done still curses your very existence, no, a facility is not wrong. As I said before, it is still care.
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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
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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.
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NeedHelpWithMom Jul 2023
I’m very grateful for the help that I received from you, Barb, as well as many others who reached out to me.
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Cttn55,
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.
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NeedHelpWithMom Jul 2023
Everyone cares patpaul,

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.
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This has been an interesting thread.

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.
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CaringinVA Jul 2023
Totally agree.
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OP isn’t against facilities. Isn’t against in-home care.

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.
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NeedHelpWithMom Jul 2023
I feel the same, venting.

This is a posting that allows an opportunity to discuss the topic in its entirety, and not focus solely on one aspect of it.
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Anyone want to start a thread on why it isn’t the best idea to care for someone at home?

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.
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ventingisback Jul 2023
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KPWCSC:

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.
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Evamar Jul 2023
AlvaDeer,
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.
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PatPaul
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.
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Knowing a little about Parkinson’s I can understand OP frustration. Recently husband with PD as well being in hospital I noticed during frequent visits his levodopa was not administered as per schedule.
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.
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This for PatPaul:

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.
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Evamar Jul 2023
Barb,
I love this. Hierarchy of responsibility.
Commitment to ourselves.
Unapologetic selfishness, taking care of ourselves.
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Placing my mom was the hardest decision I have ever made. I wanted so badly to take care of her until she died. Even though she was in an ALF, I was still taking care of her. What I found in this forum was the opportunity to learn from others. Their advice allowed me to keep her home as long as I did. Thank goodness for all the tips on every topic imaginable. When my situation became impossible, my friends here helped with getting the transition as easy as it could be.

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.
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Cover; My grandmother lived with us in our very small house. It was barely big enough for the five of us (one bathroom); grandma made 6.

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.
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NeedHelpWithMom Jul 2023
What a brilliant example of why facilities are a godsend!
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