Parents Caring for Parents Support Thread (Part 2)

[NJSue]

We are about the same distance apart (1200 miles from him, she in FL/CT and I in NJ). She remotely manages his medical appointments and escorts and I manage his finances and taxes. It works out about equal. However, I have been out to see him more, and I think she is avoiding it because it is painful to her. She went out for Thanksgiving and Dec. after his crisis. I went out in January and in March (last week). In 2024 I travelled to MN from NJ 6 times to check on him. We do have him pay for our trips so money is not the issue. We had to start reimbursing ourselves; these are not vacations, they are wellness checks. I use my United points for airfare. I will go out again in mid-May (I suggested this as the move date to the facility and they seemed okay with it, but my sister was angry and wants to “slow walk” it). My daughter is due to give birth on June 3 and I told my sister I won’t be available in the month of June to deal with Dad unless he is dying. The future is more important than the past.

I just think I need to tell her that I will take the heat/complaints/disappointment. I don’t care at this point. The move has to happen.

[abasket]

Your plan sounds right for all based on what you’ve shared. Hugs.

[NJSue]

Thank you. It’s not pleasant and of course you second-guess yourself. The reality is that the facility holds the cards because neither I nor my sister are going to take my Dad home to live with us and be his full-time caregiver. So if they say it’s time for SL, we need to comply. In this case, I think they are justified.

[deb922]

Is there a medical POA? Are you that person?

If so then it’s entirely in your rights to move him. If she is, then that’s an issue. If both of you are, then that’s something you need to discuss with his care team and his attorney.

For both my mother and my husband’s parents, our siblings are the medical POA’s and my husband and I are the financial POA’s. Both of our siblings are in the medical profession so it was decided that they would be best for that role.

I know you would like for this decision to be mutual but it sounds like your sibling is not in a position to do what needs to be done.

For those who are looking into Medical POA’s, my mother’s attorney told us that he wouldn’t even write dual POA’s because of situations like this. When things need to be done, there needs to be one decision maker. @NJSue I’m so sorry you have to deal with all of this

[NJSue]

We both have medical and financial POAs for him. We both have the authority to make the decision. The facility staff has clearly decided that the move to SL is going to happen if Dad is to remain in that facility. I do not want it to get to the point where they issue an ultimatum. They have been trying to work with us and my sister is the roadblock. But unless she comes and gets him (which she won’t), it’s just pointless obstruction that will alienate people we need to have on board for Dad’s optimal care.

She says, “He’d hate being up there, he doesn’t want to be with the vegetables.” This is projection. He’s become what she feared, but the upside is that I don’t think he’s capable of noticing.

[deb922]

I’m really sorry your sibling is being in my opinion irrational in this decision. He must be moved. She’s not there and it doesn’t sound like she’s going to be. But it’s really hard to get someone to come to what has to be done when they don’t want to

[NJSue]

My sister and I have always been close and I have to trust that she will come around. She is having a hard time accepting his decline for reasons involving her personal situation that I don’t have, although I recognize them. I trust that she will see the light and I am willing to play the “bad cop” with Dad if it will help her move on the issue. I understand her fears and where they come from.

[sevmom]

My MIL was in memory care at the end in a locked unit.. She was well care for and it was definitely necessary. Good luck!

[HImom]

So sorry your sis is unable to see that working with the facility to keep dad safe is best. Of course, in a perfect world, a cheery adult caregiver would magically appear and take care of all our loved ones needs. Sadly, none of us live in such a world. Best of luck in doing what is needed to protect your dad’s health and safety.

It’s always hard when one who has medical POA intentionally has blinders on and refuses to work with others. We had that situation and S was so incensed he flew from NYC to hold vigil by my mom’s side and pounce on my brother with POA on his rare visit to mom to make him talk to the MD on duty. It was very tough but S felt it was to only way to minimize mom’s pain. I am grateful he did it.

[Colorado_mom]

@NJSue

We both have medical and financial POAs for him.

Just curious. Do you recall if it is set up as ‘And’ or ‘Or’ or Primary/alternate? The reason I ask is that I brought an elderly friend to legal aid center for estate planning paperwork last year. The lawyer was verrry patient with friend, listening to stories and explaining every decision (and not mentioning the fact that friend arrived in slippers after having lost her glasses, been unable to find shoes). There are no children, so two nieces in different cities 2000 away were set up for all roles to be AND. I was in the room and tried to ask if that would be logistically awkward, but I was hushed by the lawyer. Trying to think this through while considering some matters in my own family.

[deb922]

We have a meeting with an elder attorney soon.

After discussing it, we plan to name one child as both medical and financial POA. There are reasons for it that my husband and I feel comfortable with.

In our parents situations, it was easy to name one medical and one financial POA. We both have one sibling who is in the medical profession, that sibling is also in both cases, disorganized with personal matters so it was easy to divide POAs.

More often, it’s not as clear as our parents cases.

Like I said above, the elder attorney for my mom, advised to name only one child.

@HImom what a loving and caring grandson your mom had. To be so compassionate and to do the hard work. So she could be comfortable in her last days.

[Mom22039]

I wish I had a solid update. We are in limbo, waiting for a decision to be made (by a potential AL+).

New York now has a level of care called Enhanced Assisted Living (EAL). My brother wants to move SMom and Dad there so they can be together and they can save $$ over their current expenses. (They have about 3 years of expenses before we have to sell rental properties, which would be a huge tax hit).

The EAL says they can’t accept Dad if he can’t feed himself. That would require Skilled Nursing (a nursing home). Once he gets to the new EAL he can stay with Hospice added after he arrives. He’s really skirting the edge on this one. He seems to need more and more help. With assistance he can walk to the bathroom. He’s eating less and less, and he’s sleeping most of the day. The aide says he is providing spoonfuls of food. Brothers feel aide is making the situation for his benefit.

Also, brother did not realize Dad was receiving wound care daily. (93 yo step mom is the first in line for medical decisions and info). Based on friendly chats with the private aide, I knew that protective booties were being put on Dad’s feet at night. So, now brother has spoken to the nurse to ask that this care be suspended because this is one factor preventing dad from being admitted to the EAL.

I would prefer the Dad stay at the hospital-floor skilled nursing at $18k/month and that SMom stay at her nearby AL where she can visit Dad every day. There are no comparable or better care facilities in our home county.

Brother has found a Brookdale (national brand) EAL about 25-30 miles away.

• We will have no family oversight at that location.
• They will need new doctors (at 93 and 97!) OR there will be expensive transport back to their current docs.
• The current private pay aide is banned from that Brookdale location. (One wonders, right?)

I just prefer the status quo right now. They are safe, cared for, have good community, local doctors who have known them for years, and have oversight by local family members. Dad’s current level of care at the hospital-based is skilled nursing so, it can be the last stop.

The new location will cost less, have no oversight, will need to develop community and doctors. If either needs skilled nursing, that person will need to leave (or can stay on hospice).

So, I’m just laying out my thoughts here. Both brothers want to do the move to save money. It may save $10,000 a month, but before that there are new entry fees $5000, + moving expenses, 30-day notice to vacate current AL (overlapping fees?), and additional costs that are unknown.

In either case, we live 6-10 hours away. We have cousins who visit the current facility for 12 hours every day (because their sister is on the same floor). I hate the idea of losing that daily oversight.

Thanks for letting me vent as we wait for this to settle out!

[cinnamon1212]

If he can barely walk and not feed himself he needs skilled nursing care; any kind of assisted living isn’t appropriate. And my completely non-medical guess is that you won’t have 3 years of paying those fees.

Is there one point person making the decisions?

Also, if he is moved it is imperative to visit a bunch of facilities-- when I had to move my Mom into Memory Care (ie skilled nursing) I found a HUGE variation in the quality of care. One of the worst places I saw had a 4 star rating from medicare.

[greenbutton]

You have the right idea. Tell your sister you totally get that this is a big change, but it’s gonna happen in May. You can be the lead (don’t say bad guy, you are doing what needs to be done) and when he’s settled, sister can weigh in on things then. May. The facility has told you so, your father will not know or care (my Dad also had vascular dementia, it is AWFUL, there’s no logo or support group or public knowledge, you swim in that ocean alone). There is absolutely nothing to be gained by waiting.

Make a date, keep to the plan. Facts are more important than feelings for this, and time is of the essence. He will be adequately cared for, safe, and supported. You really can’t hope for more, and the complicated feelings it brings can be worked out separately. Hang in there, and know you are the best kind of daughters.

[SOSConcern]

The daily family eyes on your dad with the cousins who visit the current facility is important confirmation and assurance on your dad’s situation.

Staying with Hospice added after he arrives at the new EAL would not assure you on his proper care.

Would he qualify for Hospice now in his current facility? With eating less and less and sleeping more, he might qualify for Hospice. The wound care needs to be continued too.

Will stepmom have the resources to continue at her level of care (AL) once your dad is gone?

What happens with EAL if they go there and then your dad needs skilled care (and doesn’t qualify for Hospice)? Will stepmom eventually need to go to EAL?

To me, if your dad needs Hospice, better to be in the skilled care facility.

That is concerning about EAL not allowing private duty help - what is their justification behind that?

I worked as a RN (for my sunset career) in a skilled care/rehab facility - saw a lot of situations and circumstances there. Our facility was a regional (strong in our state and had facilities in 3 other states), so lots of standards being met along with good oversight.

[greenbutton]

I see zero upside to moving, unless running out of money is a concern. I am sure stories here emphasize that a move often tirns out to be disastrous, or at the very least, suboptimal.

[kelsmom]

Keeping things as they are makes the most sense for your dad and stepmom. And that is who matters … not money. Unless they have no financial resources to pay for their care, there’s no good reason to make a change. So what if there’s a tax hit if properties are sold. They can’t take them with them.

[sevmom]

In my mother in law’s Continuing care facility, she moved from inependent to AL to memory care. The facility required these moves and the family was in agreement with the facility that the moves needed to happen. It can become a safety issue.

[momofboiler1]

We had even intention of moving my mom to AL but after the facility nurse did her assessment, they said absolutely not to assisted living and that she needed memory care. In retrospect they were correct, but as family we weren’t seeing the decline as clearly.

@Mom22039 - the EAL may not take your dad and you can also call them and ask to speak to the nurse who will do the assessment to voice your concerns.

Also make sure that your brother understands that if the EAL feels like they made a mistake in their assessment, they will move your dad.

[SOSConcern]

To me, it is a ‘what if’ and honesty on best care. It seems not a good reason to change. See about Hospice qualifications in current facility - which depending on this in his state and area for meeting the qualifications. There also are often different Hospice organizations (both for profit and not-for-profit) and seeing which provides the best services (not-for-profit may not be the best in his area) – that is something to ask the nursing staff at his current facility.