An excellent example of why home care doesn't work.

My sister and I cared for my mother at home for approximately 1 yr and two months. It got to be too much, the disease ravaged my mom, we did all we could do. Hospice helped a bit and they assisted with getting her in a facility. This disease is no joke, it will tare you apart if you let it.

I want to say the in home hospice for my sister was FANTASTIC. Maybe that's an oddity, but for her, they really came through.

Fear of the unknown is crippling. We have to believe that there is a solution to our caregiving problems.

We have to be open minded enough to listen to others who have found viable solutions. There is always something that we can learn.

Otherwise, we remain in our misery and won’t be able to achieve the best possible care for the person that we are caring for.

Thanks Barb for bringing this important topic to light.

strugglingson,

Just reading the various comments on this thread from the beginning.

I am so impressed by your growth in how you are handling your dad. You are handling everything in stride.

I can certainly tell that your stress level has gone way down.

It’s amazing isn’t it, how much stress affects someone from being rational during their caregiving days?

My stress level was through the roof when I was a caregiver. I look back now and realize where I went wrong. Hindsight is 20/20!

I don’t know how I survived so many years of at home care. I found this forum way too late. I was already deeply embedded in my caregiving.

We all have our own stories that brought us into caregiving and how we moved forward to a better place.

If I could go back in time and take back my excessive worrying during my caregiving days, I would do it in a heartbeat! I drove myself crazy.

It’s wonderful to see that you are able to relax and think more clearly after placing your dad.

Trying to do everything on our own truly becomes counterproductive. We need help. We need rest. We need to live our own lives while being an advocate for our family members.

Please keep posting on this forum. You are a wonderful example of how caregivers can succeed after placing their family member in a facility.

Midkid, I had no idea one could get prescription pain meds and tranquilizers in cream form. Yet again I learned something really valuable on this forum! Thanks!

Lily--my heart aches for you.

Having a non compliant parent is so frustrating! The morphine eases the 'breathlessness' that people experience. Both my dad and my FIL took it and it didn't make them drowsy, really, but it helped them to oxygenate better and they actually were much more verbal and felt so much better with a dose on board.

You really can't sneak that into your mom--can you? I know daddy got his benzos in ointment form and I'd rub a dose into the thin skin of his forearm. I remember one day forgetting to wash my hands afterwards and was rewarded with a very pleasant slightly 'stoned' afternoon b/c I also had gotten a little dose of the Valium. (Wasn't the worst feeling, to be honest!)

If you can get mom to take the morphine just once and let her see how much it helps that anxiety of feeling breathless--it would be great.

I really feel for you. Hope things get better soon.

So, now after 6 months, mom seems to be going into a decline. I spent yesterday with her and she was breathless to the point of barely being able to eat all day. Having a BM on the commode was an absolute ordeal. It took her an hour, and then another half hour to get her back into bed. After that her respiration rate was 32.

I do have a call into hospice, but I feel they are no help. As Alva has said many times, they come in for their weekly visits (maybe 2 nurse visits for less than an an hour, 1 CNA visit for a bed bath, and alternating social worker or chaplain visits, down to about once every 2-3 weeks now.)

Sadly, I think mom thinks they are going to call the calvary when she gets to the point where she really can't breathe. But reading other websites, I feel like we will be lucky if they even show up for the very end. All they have to offer her (besides the hospital bed, commode and O2 machine) is morphine and benzos. And mom continues to take LESS than the minimum prescribed doses because she doesn't want to sleep.

The doctor, the nurse and I have explained over and over that the sleeping is due to the progression of her disease, not the meds. She is literally on subclinical doses after 6 months. (Like 0.25mg clonazepam). Yet she fights to stay awake, says "I can't breathe" several times an hour, and when she uses the commode and her O2 dips into the low 80s she cries "help me" at which point I just about beg her to take the full morphine dose. But she wont. She says we are trying to put her to sleep.

She is now accepting of the fact that she is dying. But she thinks hospice is going to swoop in and save the day. The only thing they are going to do is continue to raise he medication doses to make her comfortable, but she won't take them. Hospice says we can't force her to take them. But it's agonizing as a family member.

I expected more from hospice. They said they provided "wrap around care" for both the patient and the family. I told the chaplain much of the above, and he said that's "out of his wheelhouse". So I guess the idea of him providing ME counseling and comfort is out.

Also, my efforts to find a hospice home, even in a nearby state, for end of life have been fruitless.

@Margaret. My minister does believe in faith, the love of Christ, hope for a better future in heaven, the love of her family, and more. He is wonderful minister and person. That was a comment he made in direct reference to an argument about the commode.

It wasn’t his overall statement of faith. Since I was so angry and frustrated, he was trying to help me see that since she is completely bedridden, on hospice, and has physically no control over anything, that her dignity is paramount. And I agree with him.

And yes, I know she will ultimately become incontinent. But I’m hoping it will be at the very end, when I am told by those familiar with her condition that she will be essentially sleeping round the clock.

Lilly, I know that religion isn’t based on logic, but seriously! Your minister said “dignity is the only thing she has left”. I have never come across any elder who has died before being incontinent in bed at the end, even my mother who had a relatively quick death. There are sensible ways to help, of course - a friend had a grandmother who needed an operation ‘down there’, and the hospital kindly shaved her pubes AFTER the anesthetic kicked in.

The minister’s logic is startling. What about ‘faith’ being one thing she is left with? Or the love of Christ? Or hope for a better future in heaven? Or indeed the love of her family? If the minister seriously thinks that all she has left is keeping her ‘privates’ private, I’d find another minister, quick smart!

Just posted below that there were more threads to my story. Here are a couple more:

https://www.agingcare.com/questions/update-and-question-on-moms-state-of-mind-after-4-months-in-home-hospice-484823.htm

https://www.agingcare.com/questions/i-cant-help-but-wonder-how-things-would-be-different-if-mom-hadnt-been-put-on-hospice-484563.htm

I searched hospice on this forum and found more threads of mine. For anyone who is interested in the whole ridiculous saga, here is more:

https://www.agingcare.com/questions/had-to-tell-mom-in-home-hospice-that-we-have-to-consider-ltc-484964.htm


https://www.agingcare.com/questions/bipolar-brother-has-become-homeless-and-mom-in-home-hospice-is-considering-taking-him-in-485145.htm

Barb,

Perfect title for this post and perfect example!

Strugglin, as a POA needs to make decisions based on what the principal would do if they had a sound mind, yes, you would be able to implement additional care based on that statement of law for a POAs responsibility and authority and use dad's funds to pay for said care.

We ALL know that anyone needing care would not object to paying for and implementing it if they were of a SOUND mind. This is key, because many demented folks will say nope, nada, never, I would have never done that, ever but, this is ALL said in the throws of dementia. Again, we all know that they would get and pay for the appropriate level of care needed before their brain broke.

Since the thread shifted a bit to discussing POA, especially with deweed00's comment - can I ask a question of the group and see what you think?

If a LO is incompetent, and POA is in effect, If the POAs think of a cost to spend from the LO's assets, but the LO thinks its a "waste of money", but the POAs think it will be helpful to his care (and help them out too), the POAs can go ahead and do it, correct? My intepretation is that they can indeed go ahead with such a spending.

I hear you - my dad spends 1, up to sometimes 3 hours on the toilet! He had a colectomy complicating things so apparently it takes that long sometimes, along with his slowness. But he refuses anyone to go in with him, as of now. There are grab bars etc near the toilet, and he can manage, so for now, we let that continue.....

That's so sad, Lily. Childbirth must have been a nightmare for her.

My mother won’t even let the RN be in the room when she uses the commode, let alone any of the rest of us. That’s why it takes her a hour. She won’t accept any help. She’s always had this hyper religious sense of modesty (and I would even say shame) about nudity.

It sounds crazy, but it’s really the number one issue right now that we’re dealing with. I wanted the hospice nurse to tell mom it’s UNSAFE to use the commode unattended. But even the head nurse/case manager won’t do it.

For HER it would be the end of dignity. She would also consider it the ultimate betrayal of her on my part.

And OMG bedpans? I feel so sorry for the poor young lady who offered mom one in the hospital. She might as well have offered to kill her.

Don't get me wrong, I agree with all of you. It’s hard for me to even put into words how big of an issue this is for her.

These posts have very likely kept me from making a terrible mistake with POA.

--Only child of an AD patient

Lily, your home care situation sounds very hard. I am sorry.

I am also of the opinion that dignity is important, but, what is dignity? It can be different for different people I guess.

Depending what to use your energy on is the thing for me. Take an hour to use the commode? Or use depends & put that energy to something else.

What about a compromise to bedpans?

Home care hospice was the best thing for my Mom. It was wonderful.

Being in Depends at the end of one's life is NOT the end of dignity.

It is acceptance of reality.

Sorry if that seems harsh. But it IS what happens and HAS happened since the beginning of time.

@Lily, Alva and my responses aren't as far apart as they may seem when reading them. She and I are saying some of the same things in different words with two different perspectives is all.

Duty of care responsibilities =
-- the specific POA wording,
-- the specific state and federal laws, and
-- present and past actions.

An attorney can best advise to these questions:

-- Has the POA been properly executed?
-- Is the POA active?
-- Do I have or assumed any duty of care?

As for

"In the meantime a friend contacted me. She’s moving into her elderly dad’s house because he’s being released from the hospital (and is delirious). She will have him and her special needs sister to care for. I BEGGED her to reconsider. But she sounds almost manic making plans. I tried to explain that since he’s in the hospital she can use their resources to help place him. But she’s not having it."

some of us just have to learn first hand the hard, rocky path that life can be.

Take care of yourself first.

@Lily and Alva, in theory a POA should be valid across all 50 states. It doesn't happen that way. Personal experience -- we had to sign new POAs in our part time location for our dealings there as our full time resident POAs held no power. What we went thru is best explained here: https://legacyassuranceplan.com/articles/power-attorney/lesson-out-of-state-poa

Also, not all states have accepted the Uniform Power of Attorney Act as described here: https://estateandprobatelegalgroup.com/is-a-power-of-attorney-respected-out-of-state/

Making sure estate planning is well covered -- particularly with POA(s) -- can get very complicated. At one time we owned 4 properties in 4 different states with each of us family individuals living in each one of the homes. I was Managing Partner for the homes and our businesses. To make it work we had to have multiple POAs in each state for each person. One state required the POA to expire after 7 years and a new one reissued. One state required specific wording for some real estate actions whereas general wording for the same real estate actions in one of the other states had everything covered. Some were springing and some were general and some were durable. One bank even sent the POA to their legal and said it wasn't valid under their polices when indeed it was valid under that state's laws. As I've stated in other comments, Oregon even limited the POA to financial only. Each had their own time and place and each were used at one point or another to accomplish things in absentia.

Lily, get clarification from that attorney asap. S/he can explain or refer you to one that can explain the rules and laws your particular POA fall under. That is the best way to find out what legal obligations you are/are not responsible for in your state with that particular POA.

I attempted to call inpatient hospice facilities, of which there are almost none in New England. Of two that I was considering, one only has 9 beds, but may take mom. It is all private pay, $495/day, which is about what homecare is costing me anyway. But they don’t take Medicare when the money runs out.

The other one said they won’t take her unless my current hospice declares that she can no longer be cared for at home. As in she needs IV pain meds, which she does not. Plus my hospice company isn’t going to give up a paying customer to another company.

This thread (along with MidKid’s) should be renamed, “Things You Should Know Before Taking your LO Home on Hospice”. They have me over a barrel. I hate the thought of paying an ADDITIONAL $8000/month for mom to get LESS care at a NH. Because the reality is it takes her an hour to use the commode, and an hour to help her get her breathing back to normal after each use. So two hours 5x/ day, accomplished by 1:1 caregivers.

I KNOW a nursing home will not provide that. They will just put her in depends. And as our minister said, her dignity is the only thing she has left. I HATE this situation, and I HATE our for profit medical system (not to mention life extending treatment for those with no life).

In the meantime a friend contacted me. She’s moving into her elderly dad’s house because he’s being released from the hospital (and is delirious). She will have him and her special needs sister to care for. I BEGGED her to reconsider. But she sounds almost manic making plans. I tried to explain that since he’s in the hospital she can use their resources to help place him. But she’s not having it.

"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."

Lily, the folks saying this are trying to dump all the responsibility on you. They may or not be telling the truth, as you've found in your journey with mom.

You don't have to walk away and leave mom in the clutches of the state, although I think the SWs always try to make that sound so dire.

What you need to do is say to MOM is
"I cannot and will not do this any longer. Other arrangements need to be made. I can help make them or I can walk away. Which would you prefer?"

Yes, she will be mad. So what?

Alva, I appreciate your post and I am asking a genuine question, not meant to be flip or sarcastic in any way. How have I assumed the duties of the POA? I have never shown the papers to anyone (except a lawyer). I have never signed anything as her POA.

Is it as MNIT asked? That I entered into the duty because I cared for her for 2 weeks? That doesn’t sound right. The lawyer said just hold onto the papers, and when there comes a time that mom can no longer sign things for herself, to present them and act on her behalf.

My current plan is to make an appointment with the attorneys who drew up her will and all of her paperwork. Just add it to the list of tasks.

First of all POA will pertain in any state.
It isn't state specific. Though one not done by an attorney will be worthless in most banks in most states.
It is not a contract in that IF YOU DO NOT ASSUME THE DUTY you are not the POA and cannot be MADE to be the POA. You simply refuse.
NO ONE has to serve as POA because they are named. BUT IF THEY DO then they have under the law taken on the duty, assumed the duty, and ARE THE POA in FACT under the law.

HOWEVER
If you assume POA then you must resign legally.
If mom is competent it is a simple letter of resignation, turning over your files to her, and going to each bank and other entity you may be on as POA and letting them have a copy of resignation.

If Mom is INCOMPETENT under the law you cannot abandon a DUTY YOU ASSUMED.
Your POA pays for expert advice.
That means you see an ATTORNEY and resign legally through him.
A court action will be filed for your resignation and appointment of another willing friend or family member OR the state takes over.

This is the law almost everywhere in the United States of America.

Lily, if you assumed duty you now know how to resign.
It is not rocket science and is in fact easily done.
Either Mom is competent or incompetent under the law.
Either you resign by simple letter or through an attorney
IF YOU ASSUMED THE DUTY.

You can't get it both ways. You cannot say I didn't agree to it and I didn't want it but I acted as the POA for Mom. By acting you HAVE IN FACT UNDER THE LAW ASSUMED the duty.

Lawyer up, Lily.

@Lily, from my point of view, you're NOT her POA since the POA was not properly executed -- with the caveat that they are state specific.

While others disagree, it is my belief that a POA is a contract. It is a special and very powerful contract, yet a contract nonetheless. Since you didn't sign into the contract to be POA, then you shouldn't be stuck as POA.

With that, IMO, your money would be better spent hiring an attorney in your state to figure out if you are under any obligations to your mother and her one sided POA that wasn't properly executed.. If you are obligated by some unique state specific legal circumstances, have the attorney resign you as POA and turn your mother and care over to the state.

The question I would postulate is by taking on her care for that short time, did you enter into a duty of care that you weren't aware of?

Hi Lily
interesting about how all this happened.
I dont know much law. All I know is that for my dad's POA, he signed it then me and my co-POA had to sign it accepting our roles , in front of a notary.

Also mine is a DPOA, to become effective when he becomes incompetent.

is that what yours is? If so, and she has not been declared incompetent, then are you really an active POA?

I think MyNameIsTrouble point is a good one in that we should read what our POA documents say and be familiar with the law in our states. Consulting an attorney may help in this regard. I never knew all this, until recently.