BarbBrooklyn Posted February 7, 2024
An excellent example of why home care doesn't work.
Follow
Share
This member wrote in several months ago when her mom got a dire dx and was about to go on Hospice care: https://www.agingcare.com/questions/managing-moms-home-hospice-care-now-i-have-medical-problems-of-my-own-485342.htm?orderby=oldest
At the time, there was a choice between mom going to a facility or going to her daughter's house with Hospice services, which are minimal.
We begged this poster not to go down the home care route.
If you are in a similar position, please read this cautionary tale.
This discussion has been closed for comment. Start a New Discussion.
56 Comments
This discussion has been closed for comment. Start a New Discussion.
Popular Questions
Start a Discussion
https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Decisions/Remaining+at+home_+Things+to+consider.aspx
But yes, I was completely blindsided about how mom going to hospice in her own home would blow up my life. Just like MidKid and her family.
Another piece of the cautionary tale is to ALWAYS talk to your loves one's discharge planner to tell that them what you are willing to do.
In fact it wasn't until the discharge papers were already signed by Mom that the HOSPICE agency informed me that the discharge planner told THEM that "I" was providing 24 hour care. She played both sides. She told both of us whatever it took to get mom out of there before her Medicaid payments ran out.
It makes my blood boil remembering back to all of that now.
Unrelated story: A friend's Dad was facing an unsafe discharge. Same as my mom's last hospital visit (before I intervened). Doctor walks in and says, "good news Johnny, you're going home today!". Family is saying, what? Johnny can't even walk and he lives with his wife who has Alzheimers. Family refused to to take him home.
Hospital called a medicab. Hospital ended up putting patient's wife, the Alzheimer's sufferer, who was only there visiting, into the medicab. They discharged Johnny and put the wrong person into the cab. This is insanity.
If you have someone in home hospice, please take the time to cut and paste it.
They think it is the hospice of old.
It is not.
Hospice agencies are being bought up by Hedge Funds. They are now a part of the military industrial complex and they provide very little given the enormous amount of funds that go to them from medicaire.
Your will get THIS now from most Hospice agencies.
1. between one and three bedbaths or shower assists per week by an aid that comes and goes very quickly.
2. Some equipment such as bedside commode.
3. An RN visit usually once a week for an hour. She will sit at the bedside and talk to you, take your pulse and BP and leave.
4. A call from a social worker.
5. A call from a clergy person.
6. Some literature.
7. A bottle of morphine. Perhaps a few other drugs.
That is it.
People don't know this.
As to the personnel who want to scoop you out of the hospital into your home bed? The hospital social workers? Yes, as Lily says, they will lie to your face. You will hear this over and over.
1. We will work together to make this work
2. We can make this work for you with our help
3. We will get you supportive help.
Their goal is to get you OUT OF THE HOSPITAL. THAT is their ONLY goal, to get you to accept this person home before he is ready and before you can conceivably replace the care he was getting in hospital.
That's the system folks. And you need not to accept the patient.
You need to learn to say
1. I cannot physically or mentally care for this person in these conditions.
2. If you discharge this person to me it constitutes an unsafe discharge and I will
a) RETURN him/her to ER thus dinging your hospital for early re admission
B) Notify JCAHO that you discharged a patient in an unsafe manner despite KNOWING it was unsafe.
Good luck out there folks. It's a very bumpy ride. You are now a vending machine paying out to the big boys, and they don't really want to waste any of that money on you. They get it from the government with almost no oversite. That's the way it is.
As an RN I started my career when patient had to lie screaming in agony and we had no hospice to medicate them sufficiently. I thank all the powers that be for the medications. But if we are to have only a morphine bottle then give us two of them and stop pretending there's anything else.
We sure NEED to be discussing it. Or it will not change.
These lessons have been valuable to me as I deal with my mentally ill hoarder mother’s senior years. I will NOT be doing any sort of home hospice with her.
My dad spent a year caring for my declining stepmom at home, having no idea her lung cancer had returned. (Side note the great MD Anderson missed this). She was in massive pain. So at the end they finally did a PET scan, found the cancer terminal, and she was admitted after a volunteer at her palliative radiation said take her to ER. So she’s admitted to a palliative care floor. Her end is near, and they start talking discharge . We all said NO, my dad can’t care for her anymore. I had young kids back then and I really couldn’t help that much. They were going to send her to a hospice house. She ended up passing the night before she was to go.
But we had no clue at first how it all worked, and were shocked they were trying to discharge her at all! Why can’t people just stay in the hospital if they wish?
He said they can send her home by ambulance. Send a woman who can’t walk or breathe home in an ambulance to live alone? I, of course, said I would appeal, which bought her until Monday when she could be released into rehab. Which ended up with her going home on hospice, and me somehow being her primary caregiver, even though I never signed anything and never said I was POA. Mom signed everything herself, believing hospice was going to provide the care.
And the green grass grew all around, all around.
The social worker said there’s no such thing as a care manager, and basically my only option to get out of this is court. What!?! There have to be plenty of elders who have no children managing parents hospice. And I never signed anything! How am I responsible for all this!?!
That's odd.
You're not POA, correct?
Mom has a lawyer, right? Phone her/him this AM and discuss all the options, including hiring a Geriatric Care Manager.
He is not a dishonest person and he would not intentionally cause my mother financial harm, but I can just see him rationalizing "borrowing" funds from mom "just until the next job" or "just until this bill is paid". Also, he is horrible at financial record keeping and did not file his own taxes for years. The lawyer explained to us that any money that appears to be gifted out of mom's money will be counted as days that Medicaid will not pay for her care.
This would leave mom uncared for when she currently has enough money to enter a decent facility, self-pay, until the money runs out. I have to put on my big girl pants and force that conversation.
Now I know why the lawyer was so non-committal about Medicaid paying for home care (because Medicaid will pay for the care but not the costs of maintaining the house). Mom needs to understand it may not be an option. Even if I have to pay the lawyer to come to her house again and spell it all out for her I will do that.
I can't go from promising to let mom die at her home (a promise I had no business making, even though it came from a place of love, and I had NO idea what I was getting myself into. Not to mention they implied that death was immanent.). I can't go from that to having mom being left uncared for, or being placed in some low budget facility by Medicaid that may be too far for me to even visit regularly.
As much as I appreciate everyone's concern for me, this is still my mother, I still love her, and she IS dying.
Your thinking sounds sound.
You have a lot of responsibilities and stressors all at once: being POA, but also hands on caregiving some days of the week, plus medical issues of your own.
You have realized you need to reduce things, but that does not have to necessarily mean dropping everything. I could imagine that the hands on caregiving may well be the biggest stressor of all. If you can get out of direct caregiving, and take some steps back then, as others have suggested to me in my situation, serving as POA can be do-able
As others say, being POA does not mean being at beck and call all the time, or having to do hands on caregiving.
also, one can be POA and also help from a geriatric care manager, something I'm considering/ looking into
I did get coverage for most of this weekend. You are correct, it’s the hands on care giving that I can no longer handle. I’m still on for one day a week, but my goal is no more overnights. And ultimately placement if we end up like MidKid, with no end in sight. I’m giving it until the end of March.
I spent over an hour at work putting together a financial spreadsheet for our semi live in caregiver, not to mention calls and texts I shouldn’t be making at work. Then spent my first hour home documenting a bunch of hours that different people put in. I just got a call causing me to knock everything off my end table to answer - it was for/about mom. It NEVER ends. Managing my own household and affairs is nothing to that of one 84 y/o woman. It blows my mind.
Oh, and I’m getting ready to go over for a visit. It’s her birthday. *sigh*
In my case it was family trying to make me a nurse. I care, I am female (yes I know there are male nurses too, but mostly female) I work in health. A natrual fit.
Yet it ATE UP my own life.
That line jumped out at me today.
I have been not been enjoying work & it's same underlying problem! Other people trying to turn me into something to fill a gap, to solve their problem.
Boundaries. I have them yet the constant warfare to them this last year has taken it's toll.
Time to reassess my plan.
Sorry to derail, just that line really stood out.
My view- home care can work for some people, in some situations, and also depending on family/friend/ neighbor support around. There is a lot of variability.
For the elderly who are in reasonable shape, are reasonably agreeable to care, and if there are a number of people to support, whether family and/or paid caregivers or both, it sure could work out. As others have posted, "it takes a village" to pull off home care.
But if its a single person doing a large chunk of work, even aside from hands on caregiving, if one person has to do ALL of the planning, scheduling, driving, POA work, it can easily, as Beatty says "eat up your own life"
In my case, I'm glad that we have gone with AL for my dad, even though he is still not fully adjusted.
I added on an external aide for 3 hours , 2 days a week, on top if what AL provides. My dad really likes this guy, so its been worth the money. I just found out today that the agency has to pull this caregiver from work due to "some issue". I'm not sure if he will be back, not sure if he may be getting fired, or whats happening. However, since he was supplemental coverage on top of the AL, no big deal, we can manage without him and go back to just AL services.
If my dad was at home and this was a sole caregiver, it would be a disaster!.
And, its only like , 1 out of 8 people who he actually likes so, this guy was a great find ! However, its proof that, nothing is forever, and good caregivers who one luckily finds, can come and go.
But here's the thing. Many posters here (I wish I could recall a thread to point you to) have discovered that the ONLY way to get their loved one the care they need is to step away from doing hands on care.
The fact that you are POA complicates matters. You might want to consult with the lawyer.
One take I have heard - regardless of wording, the POA is responsible for making sure the person is well cared for. So can one extrapolate that if there is a sick-call of a home caregiver , and no caregiver to cover, the POA is on the line to come in to cover with hands on care? This is one interpretation of POA responsiblity.
The other take I have heard is that the POA is responsible for helping with the matters discussed in their POA contract/document. That may be to help take care of financial and business matters, real estate property matters, in a fiduciary manner. If one is also healthcare proxy, then the language of your document may specify what healthcare decisions you are responsible to make. However, then there is nothing in the document that says anything about hands on care, so who says you have to step in yourself for hands on care?.
can anyone shed more light on this confusion that I have?
We found out with MIL that POA was financial only in Oregon. All the medical portion was completely useless. GS (physical person), POA (monthly financial/fiduciary) and CS (assets) are the three legged stool. All work to make a complete package of help. One can even have in their POA whom is to be assigned as guardian but until it is actually signed by the court, it isn't effective.
When it comes to POA, even having an attorney doesn't guarantee a smooth outcome. Still, it is a necessity as POA isn't a DYI.
Any POA assignee must understand the contract they are entering into. Winging it with a POA is asking fate to always be kind.
As for in home care working for some, look up Capgras syndrome. We had everything running smoothly in home and then this. In hindsight, we would NEVER even consider in home care. And never will again -- we painfully learned.
I didn’t even know mom had appointed me POA until a couple of months before she went on hospice. I never agreed to it. It was never brought up at rehab or during the hospice intake. And I have NEVER signed anything as POA, nor shown anyone the papers. Mom signed everything herself, including the contract with the homecare provider.
I did step in and provide 24/7 care when mom was sent home on hospice (to her own home.) I believed she was actively dying. This lasted a very short time, about 2 weeks, before I started hiring in home caregivers, because mom started to improve and I had to return work and my family.
The hospice agency was told by the discharge planner at mom’s rehab that I lived with her. This was an intentional lie. They knew me well. Mom had been there twice, for a month each time, over a 3 month period. I was very vocal and expressed to everyone involved in her care my grave concerns about her being discharged to live alone.
I didn’t find out about the lie until the day or 2 before mom came home. That’s when I first posted on this forum. Mom signed all the hospice intake papers and hospice just left me holding the ball. Mom is completely bedridden and uses a bedside commode.
As Alva has pointed out many times, hospice provides about 3-4, one hour or less, visits pers week, meds, a comfort pack, and that’s it. They gave me a booklet, but neither I, my family nor the hired aids have received any training in dealing with a dying patient.
Yes, I have paid caregivers for about 6 days & nights a week now. But I am somehow in charge of everything. This is kind of what started this thread. I called out hospice for providing no case management. They will NOT assist in having mom declared incompetent (so I can place her). I said I have signed exactly nothing making me responsible for her care. They said I will have to go to court. That’s where it stands.