Dad is stabilized- we want to go home, sister wants us to stay with her.

My parents have been married 64 years.
-Dad has Alzheimer's.
-Mom has dementia, too (mild to moderate).
-I am one of three siblings and came home in summer of 2016, to live with parents as primary caregiver.

In January, Dad was stricken suddenly, with aspiration pneumonia.
Transported to a local hospital, then to a major medical center, near my sister’s home. Pneumonia treated, but PEG tube placed due to dysphasia. Major medical center “provided” MRSA. Discharged and re-admitted 2 more times.
During the hospitalization, Mom and I were “living” with my sister.
FYI- Mom and Dad never wanted to live here. Even when we visited, they were asking to go home, shortly after we arrived! But, for the last year, “You should move up with me. We’ll all live together and take care of Mom and Dad.” Now, we are here. They want to go home. Mom struggles to “remember” home. Not sure Dad is thinking of home when he says “home” - may be childhood home. However, I promised (many, many, many times) that I would keep them home.

So, I’ve filed for guardianship in order to keep that promise, in order to get my sister off my back, in order to file for VA benefits, etc. This process will take 30 days, during which we will finish up doctor appointments, and I’ll continue to be bullied by my sister. “You are a sorry excuse for a human being. You let the devil rule your life. You will suffer the consequences.”
Since Dad’s been out of hospital, home health comes here. Many times, Dad refuses to work with therapists, but sometimes he does. When we get home, we will probably go with hospice for more support. He is NOT near death, but hospice promises to offer more support?

Please, any advice?

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You need a MD order for hospice. If your dad is not near death, I am thinking no MD will write that order. Would you want hospice for help taking care of them? Hospice doesn’t provide many hours of care weekly & a lot will still be on you.
Home health may be available to you as well if you move them back to your area, but typically HHC last 60 days. You’ve seen that their visits are not frequent.
Who has POA for your parents?
I would think your sister’s offering to help would be accepted. Too often, it’s the other way around! Siblings bail or become unavailable to help with elderly, ill parents. Especially with a new PEG tube and his feedings. Are you comfortable doing the feedings? Home health should be teaching you. It may be good for your sister to learn how to do them as well for a back up.
Poor guy is probably so confused from all his hospitalizations this year.
Good luck!
Helpful Answer (0)

tggator,you've already gotten some good, albeit conflicting advice -- but that's probably largely due to the nature of dementia, i.e. it affects every individual differently, so there's hardly ever just one "right answer." I apologize in advance for the length of this "answer." (Perhaps it's so long because I've experienced much of what you're going through.)

My background: In caring for my 96-year-old dad (now in late-stage Alzheimer's) over the past 8 years, I've shared providing his care and having his DPOA with 4 of my 7 siblings, gotten his VA health care and A&A pension and became his VA fiduciary and later, after providing his care in my home mostly without help from siblings for more than 2 years, obtained guardianship and conservatorship (over objections of 4 siblings), became his SS representative, and finally moved him to a memory care facility 8 months ago after providing his care for 3.5 years in my home, all while continuing to deal with a sister who is trustee of his house but rarely communicates with our dad or me (my dad's house in the trust needs to be sold this year to pay the memory care facility). Nine years ago just before my mother died, she asked me "What will happen to dad?" and I promised that we/I would take care of him.

First, serious kudos to you for volunteering to provide the care your parents need. As many/most of us in this forum know, providing such care is obviously time-consuming, usually difficult and tiring, and often life-changing for both you and your family. Of course, you already know this if you've been your parents' caregiver for very long.

Sounds like you and your sister may have had some adverse history, but If you believe she is actually capable of assisting in your parents' care, try not to dismiss her offer to do so in her home that is near the major medical center. Given what you wrote that she says to you, it might help if she and you got some family counseling. Ideally it's better to do this before filing for guardianship, but you said you've already filed. Maybe you could put a temporary halt on the filing?? Did you consider sharing guardianship and/or conservatorship with your sister? Sometimes that can work well, other times not so much. Finally, if you filed for guardianship just so you can keep your promise to keep your parents in their own home, you may want to reconsider that promise. I think filing for guardianship should be used as the last resort, i.e. when nothing else will work to ensure the best level of care and comfort for an incapacitated person.

Regarding your parents' desire to go "home:" Similar to your experience, before I moved my dad into my home, whenever I brought him here he would quickly want to go back to his home. But when I moved him here four years ago, he forgot ever living anywhere else over the prior75 years. And now that he's in memory care, he still wants to go home every day but he doesn't remember any of the homes he's lived in over the past 78 years (including most recently my home), instead he only remembers his childhood home. So, every day he asks me to take him home and every day I tell him it's too late today and I ask him to get a good night's sleep and promise we'll leave right after breakfast in the morning. He always says something like "okay, sounds good, I'm tired." A few years ago, when my wife and I were newer to the Alzheimer's world, when my wife's aunt asked us to take her home, we managed to get her into our car and drive to her house that she still owned. She didn't show any sign of recognition. I think she enjoyed the ride, but she was glad when we got her back to the comfort of her new home (the assisted living facility).

Although I think promising parents that you will keep them home is not a bad thing to do, I also think keeping that promise even if it means creating unnecessary hardships for them (or for their caregiver) is not a good thing to do. Life is complicated, conditions change, and adapting to complicated changes is necessary and good.

Finally, regarding hospice, if your dad's primary physician does not determine that his condition will likely result in death within 6 months, he won't qualify for Medicare's hospice benefit. (My experience is that a few hospice providers are overly pushy and may try to abuse Medicare benefits -- I'd stay away from them.)

I hope that at least some of my experience helps you in your journey with your parents.

Footnote: The reason I petitioned to become G&C og my dad was to ensure that he would continue living in my city rather than me being coerced by four siblings into moving him back to the state where he used to live and where a veterans memory care/skilled nursing facility costs less than half of what he has been paying for the past eight months at the best facility in my city. Why would I do such a thing? Because this is the only city where his care would be overseen by a daily visitor with no exceptions and because the facility here has the best staff/resident ratio. My experience in Idaho is that G&C paperwork is not overly burdensome (e.g. in my dad's case, in the case of my daughter with Downs Syndrome, nor in the case of my wife for her aunt with Alzheimer's).
Helpful Answer (2)

Hospice can be a blessing with the right agency. I used the one recommended by our physician and have never had any regrets. They do help with bathing and pain management.

You say you have to finish up your doctor appointments? They can be changed, cancelled and even referred to a doctor where you live. You are not bound to keep appointments but if you don't want to be charged, you will have to cancel them. I have cancelled and rescheduled many appointments for my 96-1/2 yo DH. I have done this even just because the weather was too nasty to take him out.

From what you wrote - I would cancel any pending appointments and just go home since it sounds like all 3 of you are tired of being with sister.
Helpful Answer (5)

If you do not have DPOA and medical directives, then guardianship/conservatorship is something to be considered, so that you can legally take care of everything (all financial and personal decisions.) Do keep in mind that it is expensive and time consuming, your siblings COULD contest this, extending the time and cost, and if it is approved you *must* keep very good records to report back to the courts at least once/year (I'm sure they can request this more often!)

If you have DPOA and medical directives, you do not need this - save your time and money. You also do not need either to apply for VA benefits. Anything federal discounts POAs (states have different rules, so they use their own.) Applying for VA benefits can be done by you, just be aware of all the forms needed. One gives you limited ability to discuss the application with them. When initially submitting for mom, I sent that form in, but was told on the phone to include a letter requesting that I be appointed as fiduciary (handles the funds they provide, if approved), otherwise they will assign someone to take care of this!
Helpful Answer (4)

Why do you feel that you need guardianship of Dad?

Not for the VA certainly. Isn't it just going to antagonize Sis?

If I recall, you thought about getting a caregiver agreement from your parents when you first came "home". Have you done that yet? How are you surviving financially? How will you fund your retirement?

Just as a cautionary tale, my Mom, with Mild Cognitive Impairment, had a stroke and broke her hip in the course of 2 months. She developed Vascular Dementia, had pre-existing CHF. When we admitted her to the NH for "rehab" we thought we were looking at about 6 weeks left to her life.

She thrived there for nearly 4 1/2 years. She survived several bouts of aspiration pneumonia , a total heart block and a couple of pleural effusions.
Helpful Answer (4)

I'm sure your sister would very much prefer it if you and your parents stayed where she can keep an eye on you all, and more easily contribute to the hands-on caregiving.

You can see her point of view, yes? She does have some valid points. It wouldn't hurt to acknowledge them, even if they don't in the end hold sway.

However, I don't at all disagree with your making your parents' well-established wishes the priority - provided you don't turn round later and accuse your sister of not lifting a finger to help, anyway.

Do you really, really need to apply for guardianship? I'm sure your sister is getting right up your nose, but is she in fact going to do anything that would prevent your carrying on with your parents' Plan A regardless?
Helpful Answer (3)

My husband wanted to come “home” but taking care of a 78 year old is extremely difficult. Home care only provides 2 or 3 days a week. I could not lift him or do the various things required. I put him in Hospice which was the best of the best care. They are angels and I could be by his side until the end. If your relatives are moving in with you and helping, I ‘d say yes, if not Hospice is the best place. They sound like they have a lot of words but no action to really physically help you.
Helpful Answer (3)

Is your sister mentally ill? Is she going to contest guardianship?

Does your dad qualify for hospice care?
Helpful Answer (4)

I'm not sure I follow the whole question but regarding guardianship use caution. If you are the person who can and will make hard decisions, and be supportive to your parents, and may be opposed by others and be able to bear that, then file for guardianship. If you would rather not have that responsibility and can't take opposition, proceed with caution. Also who will be the conservator, and can you work with that person? I am my mother's guardian, my brother is conservator and we work well together. However the pressure is extreme, and the opposition from others is very difficult. Do some reading and seek some counsel. I used a lawyer.
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