My FIL has Alzheimer's. Hospice accepted him in April this year at the Memory Care home. Now it’s the end of August and he has become much more lucid. Prior he was wandering all night, picking to the point of bleeding, garbled speaking, sleeping all day. They discovered he had scabies on 8/11 and have aggressively treated them on him and the whole facility. In the last week he is happy, very polite says please, thank you. He still repeats everything continuously but will ask how is the family, (over & over), the next day it will be “who’s paying for this” (over & over). But everything is crystal clear, before we couldn’t understand him. My BIL who has POA won’t let anyone talk to the Hospice Caseworker, my husband and I go everyday to visit, he only goes if he has to. Everyone thought the end was near, now we feel it could be years? Is this normal? My husband is really becoming burned out. He has four other siblings, he’s the only one that visits, they just expect a daily email report from him. I’m at my wits end, I just retired, I’m 69, and I’m becoming depressed. I’ve neglected my family for his family. My parents are 89. Any suggestion.

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Get Stupid and put your foot down. Those dead beat siblings need a “come to jeezes meeting”. Especially mr. POA! You and your husband have ever right to talk to the hospice personnel. Stop sending the daily updates.
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Gothic, hola chica, You're showing by doing ALL you're doing, who is the truly "caring better sibling" as this is how i feel, as your spouse i mean, and i read he is getting "burned out"as the others are not helping, basically doing NADA? I can relate to that. I however, can't relate to burned out. I am not there,at all and i just continue to care for dad, best way i know how and regularly check-ups, and dr. appts.,fresh air etc., and he is hanging in there.
You and your husband are great people, doing so much and going each day,
and for this reason i believe those who are, shall TRULY 1 day be blessed in life, i truly firmly believe it.I am around dad/mom 24hours a day, was working very well in Real Estate/Mortgage for decades, and steady working on a album/cd, music since pre-teen years, age 12, and never stopped into adulthood, and i then went down south to visit mom/dad, who retire there 10 yrs prior. and i stayed as SOON as i seen dad, was not well(he fell) it was a light to mild stroke dr.,cited, after severely HEALTHY for almost 82 and a 1/2 years..."
GOLF his entire LIFE, and love it still, so now, he watch on television regularly and relax with mom, is soulmate bff(best friend) and life partner.I REFUSE not to be there for my parents, can't speak for other siblings...I am a full time caretaker now...Would only be able to work evening, regular job, daytime with mom dad.
But, luckily i am able to continue mi Law studies, to implement 1 day law school.
and able to do mi musica as i do online, and off line and i am an author for years and that allow me to work in any state, and at home anytime, thank God, as dad health is first, always, and having him smile, as he do often is the highlight of mi days and mom."

I truly am,(in your case) so sorry you're going through it relating to other siblings/familia etc. and you're a wonderful woman for all you're doing for your loving parents...God bless them. and also god bless you, think positive, stay as strong as you're able, as i am doing, i am way younger than you, born during the 1970s. but i want you to know that you are in mi prayers, as your parents..., and i pray for your father, as some days seem and are so normal.yep. That is true, as i have a close friend, who has what dad has, my father, and he had it since only 59!He now is almost 82, doing well still, but good days and bad where he just want to and feel "best" lying down. But yet force him self up, and to eat and he does well rest of the day resting comfy, mi amigo tell me, this weekly, so hang in there,and you're in mi prayers...adios.
God bless all with dem/alz. and us the caretakers."
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Your DH needs to stand up to his siblings. Tell them this daily visiting and keeping them up to date daily is wearing him out. Since he is not the one with POA how much updating can he do. "Dad is good today. Dad is not good today". They all should be told to visit their father if they want to see how they are doing. Talk to the sibling with the POA, not husband. Ask that they tell him when they will be visiting so he can take the day off.
DH may feel he still needs to visit but he really does need to tell siblings the updates are stopping.

You, I understand u standing by DH but you have your parents too. Tell DH he needs to tell his siblings that you have your own responsibilities and will need to care for your own parents.

Husband needs to set boundries. Here is what I can do and here is what I am no longer doing.
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Gothic88 Sep 2018
Thank you, I appreciate the validation.
Plateaus do happen with dementia. There were times I’d go to see my mother and she’d seem almost “normal”. It didn’t last.

Do you know what happened with your husband’s upbringing that has caused him to become almost subservient to his siblings? In my husband’s case, his sister was the Golden Child. All the other children were required to mentally genuflect when in her presence and that of her own family. Will you husband listen to you if you suggest he makes the emails weekly instead of daily? And, Dad is safe and cared for in his facility. Can you ask your husband why he feels the need to visit daily? I tried that for a while and I noticed my mother would complain much more when I visited daily. Plus, we had absolutely nothing to talk about.

Hospice usually works with the staff of the facility. If your husband has a question, I’m sure he could ask one of the regular floor nurses. I did.

My husband was never ever involved in the care of my parents. I took my mom shopping, and when my dad had surgery decades ago, I was the one who ferried him back and forth for blood donations. He saw my parents occasionally and usually on holidays. Go alone and do what you need to do for your parents.

Tell your husband you’ve noticed his burnout and ask what he what he thinks should be done. Let him come up with a solution. And then support him in whatever he decides. Just write off his family. My husband wrote off his.
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Gothic88 Sep 2018
Thank you for your very insightful message. I’m the second wife of my DH, he is the oldest of five and there is a big gap between the first two and the other three. The first two are kind of looked over, but the Golden Child has to POA. He doesn’t care for me much because I ask questions, my husband seems to think his brother can’t be wrong in anything. Also with his first wife, it was the same thing. I do ask the staff and because we are there so much, they think we are the ones who have the POA. They even show me the records, it’s amazing what respect and kindness to the staff and nurses will harvest. When I ‘suggest’ to my husband that he really doesn’t need to go every day, he says that yes he does, no one else does. The issue with going alone to my parents and children is distance, mine are all over the country. Thankfully my parents are very healthy and mentally at 100% for which I am very blessed and grateful.

I really appreciate your your suggestions and have decided that I will not email his family any longer as it is a one way guilt trip.
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Daily email has to stop. Think of it this way, lots of newspapers are not doing daily paper anymore, so why should the Gothic88 do one. Twice a mo. ONLY if you want to.

You may may need to gently / forecfully remind hubs that all the time and energy spent on his dad & dealing with his disfunctional family your expecting him to do for your parents as it’s only fair. If he balks, you stop going and helping him with the emails, errands etc. Yeah it’s harsh but you DO have control over what you do. Really better now to get this point across then when 1 of your falls and breaks a hip......

The POA BIL is getting email updates with health info in the email directly from hospice. This is standard for hospice to do. He can forward those emails to his family email list.

Hospice - a Medicare benefit- has to do a regular re-evaluation as to “need”. If he’s rebounding and stays that way it will be noted in his hospice and NH medical charts. Hospice will disenroll him if he no longer meets hospice criteria. His care plan then goes back to being under the MD medical director of the NH/MC and it’s the DON (director of nursing) who really carries all this out. It would benefit you to become ahem’ friendly with the DON as she’s the goddess and ruler of the place and a font of information. My mom was on hospice for 18 mo & was totally bedfast; She had Lewy body dementia and twice got real lucid especially about meals and clothing & current events. Twice Hospice told me that she was going to have a re-evaluation prior to her next 90 hospice rollover and both times she had a TIA couples of days before the scheduled evaluation, so she continued on hospice. My point is they have to do these if things change and if he still shows need for hospice, he’ll stay on. It’s not a crisis to be taken off, he stays in his MC just his oversight shifts back to the MC. Comprende?

Also the MC - like NH - does an every 90 day care plan meeting after the initial one within his first 3-5 weeks of entry. The DPOA gets the request for meeting time. But other family can attend if ok by DPOA.
The DON will know when it’s coming up as lots of departments are involved. Like for my mom’s, it was the floor nurse, the SW, someone from dietary, activities gal and once on hospice the hospice RN caseworker. Sometimes the DON will request to dpoa to have the local family member that does the regular visiting to attend as there’s like clothing & daily toiletries or seeing an outside MD concerns. Meeting in a conference room about 15 min. (They can do these via conference call if need be to). I always brought small size snacks as you’ll get more time. Leftovers went to DONs office or to nurses station. Word gets out, they’ll remember & the positive carried over to taking care of my mom.
Helpful Answer (11)
Gothic88 Sep 2018
Oh my, you are a blessing. I did not know that hospice was required to send email updates to the POA! We have been going to the NH since March and he was admitted to Hospice in April. The BIL never told us. We are very nice to all the staff at the facility, we know all their names etc. But will bring them treats per your suggestion. I am going to have my DH ask his Brother with the POA to forward him the hospice emails. That is absolutely ridiculous that we are not aware of this and even if we go out of town overnight, the BIL sends a FB msg that says enjoy your vacation! In the meantime he just left for 8 days after being gone for 6. And went we were gone, he only went one day, said it was too hard to see his DAD that way! Sorry,I’m going off topic, but thank you for all your great info.
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