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My dad has resided at the Armed Forces Retirement Home (formerly The Soldier's Home) in Washington DC for 20 years. He was diagnosed with metastatic prostate cancer 18 months ago and Congestive Heart Failure a year ago. He also maintains a permanent Foley cath and recently -due to a poorly administered IV has lost use of his left arm and hand.


Prior to the IV incident he was living fully independently. He was very active, walking 3 miles daily, taking care of himself.


Now he's been moved to an Assisted Living quarters but has significantly declined in mental and physical health and has requested to be moved to Long Term Care quarters. His request has been denied by the Home because he remains fairly self sufficient. He is tired of keeping up the pace but feels he must because it is what the Home expects of him.


I'm just asking opinion if he's being unreasonable in his request to go to Long Term Care where he can have more care and be more comfortable to face the inevitable undeniable end of a beautiful life.


I feel at his age, with his diagnosis and prognosis, he deserves and should have what he wants in order to die with dignity.

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Did he voice this wish in passing to a couple of members of staff who responded with 'oh you're doing so well, it would be a shame' or did he make a formal request for the transfer which was declined because he did not meet the admissions criteria for LTC?
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Here is what they say themselves:

Philosophy of Care
Person-centered Care
The AFRH staff will focus on your individual needs, develop proactive plans of care, and deliver meaningful services to help you thrive. In fact, you will be an active participant in guiding your life and happiness. Also, each staff and family member will work very hard to identify and understand your personal needs, listen carefully to your wishes, and offer smart solutions for consideration.

So, without waiting to hear how formally his application was made, I think you have plenty of scope for advocating increased support.

It also sounds as if insufficient weight has been given to the impact on morale of his diagnoses, and that besides the inevitable physical toll.

Argue!

Best of luck, I hope your father is soon feeling much better supported and comforted. Please let us know of any developments.
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number9 May 2019
Yes, yes, I have argued and fought for my Dad. They have told me I am an excellent advocate. I really don't think they communicate amongst themselves. The meeting today described their "Philosophy of Care" perfectly. Everybody listened showed utmost compassion and kindness. It was a totally different experience than 2 weeks ago when this situation started and he reached out for help. It is obvious that for 20 years, my Dad has been very healthy and self sufficient staying under the radar. It was also obvious that he has friends and people there who see he has come to a point in his life where he needs help and they are wanting to provide those needs to him. It was a good day.
Thank you so much.
(5)
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If he was denied officially, both the reasons and the criteria should be in writing. Request them.

There will be a process for appeal. If your dad WANTS to go to LTC, appeal for him.

Usually the criteria for LTC is that the person can no longer do a certain number of "Activities of Daily Living" for themselves, in other words, toileting, showering, dressing, grooming, eating.

Which of these does dad need help with? Can he be independent with more assistance? With the AL give him more assistance than he is currently getting?
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number9 May 2019
I have filed an appeal. I have requested criteria. Seems the entities involved don't communicate very well. I'm working on them. Thank you for your support.
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Your statement "He is tired of keeping up the pace but feels he must because it is what the Home expects of him" jumped out at me. He's seen as coping well because he is making the effort to do so, maybe he needs to dig in his heels and stop forcing himself to do more than he is comfortable doing, it's a lifelong reality that nobody ever steps in to assist until the person doing the heavy lifting puts down the load.

And what about adding in hospice care?
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number9 May 2019
True about him forcing him self to "carry on". But he's an old sailor who has always done so.
We had an excellent meeting today at AFRH in which he was really listened to. I'm pretty sure they "got it". Now the issue is that there are no beds in LTC. While we wait for one, we have requested Hospice. My Dad doesn't understand palliative care.-Oh and did I mention he's hard of hearing? He has very excellent hearing aids but also a type of hearing loss (from the flight line) that is hard to aid. But I will continue to be his ears and his advocate. The HoH aspect adds to the issues and causes a new level of frustration.
However, we today are feeling hopeful that he will be where he wants to be.
Thank you for your support.
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I think anyone in your father's situation should have the right to make their own decision based on what they want / would prefer. You say he is terminal and unfortunately is going to be in more pain and less likely to feel like doing things as his illness progresses, assuming he is not yet in a position to go into a hospice I certainly think he should have the right to not have people have expectations of him and to be in the place he chooses.
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Home doesn't want to lose the money they're making off him,that's all they care about
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I am happy for your dad that he was heard and is getting more care while waiting for a bed.

Tell him I said, "Thank you for your service Sir, I live in a free country because of men like him and I appreciate his sacrifices!" Big hugs!
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jacobsonbob avatar
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jacobsonbob May 2019
Let me add a "second" to the thanks Isthisrealyreal has given!
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We absolutely went through the correct procedure. It was, I feel, total lack of communication within the AFRH.
I will see that as well as I am able, those gaps are closed.
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Then get him to the long term care facility. They need to understand what it is he's going through. The metastatic prostate cancer alone should see him in long term care because he's terminally ill!
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You're doing a great job as your father's advocate. we need more family members like you.
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Agree with you. He should have a say and be granted his request. Check and see if his doctor can get him there. Father is asking because he knows not just because he wants to but that he needs to.
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I agree with you.  Assisted living is for people who are pretty much still able to care for themselves with minimal assistance.  With all of his issues, he needs more help than assisted living should have to do.  I would take a look at the paperwork that was signed when he first entered assisted living and see what their "requirements" are to stay in assisted living.  Then, I would ask the doctor and see if he would be willing to write a letter stating that your father's needs have changed and that he NEEDS what long term care can offer.  See if that will be a solution to the problem.  I think your dad is wise to seek more help and die with dignity.
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At 96, he gets to be listened to, and so do you!! Gawd, what malarkey you’re putting up with!
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Hospice. Best care and deserved and any doctor who will not sign onto the 6 months expectation not worth the powder to............
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joancarol May 2019
There is no longer a timeline of less than 6 months to live. If a person’s medical condition is not going to improve and is expected to eventually cause death, he or she is eligible for hospice care. They may reevaluate after 6 months, but it is rare not to be renewed. My father-in-law’s diagnosis was dementia, and he received hospice care for 17 months before his death. We were very happy with their care, and it was completely paid for by Medicare.
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If he has medical conditions that are not going to improve, he is eligible for Hospice. My father-in-law received hospice care at his memory care facility for 1 1/2 years before his death. The hospice care was provided by an outside agency and was wonderful. A nurse visited him and evaluated his needs weekly, and an aide came in 3 times a week to give him attention and care beyond what the facility offered. They also provided any needed equipment: Depends, Hoyer lift, hospital bed, wheelchair pads, etc.-anything that would make him more comfortable. All of this was paid for by Medicare with no cost to him. They also kept our family informed and supported. They were wonderful at the time of death, staying at his bedside constantly until he passed. Look into it. Your dad’s facility should have the names of recommended hospice providers to give you. Good luck.
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Pursue the LTC your father needs (hospice or palliative care). My father had CHF, and cancer: multiple myeloma and prostate. He has so much side effects (shortness of breath, weakness in arms and legs), insomnia, lost of appetite, depression) from all his medications add the treatment he is getting for prostate. I have to be my father’s advocate especially for his Drs. Society views older people with less compassion. They don’t have time to listen when they are old and frail, unless it is our own parent. So pursue the care your father needs.
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Isthisrealyreal avatar
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Isthisrealyreal May 2019
The poster has said they are currently waiting for a bed to become available.
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Have him talk to his doctor and have the doctor order the transfer. That would probably be the fastest way.
He should "document" his declines and show that to the doctor to validate the request. If that does not work Patient Advocate and a Social Worker might help as well as a Family meeting with all his medical staff and the family.
He could also request that he be place on Hospice that might also validate his decline and hasten a transfer.
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My experience with possible VA skilled nursing placement:

My father (98 and on Hospice since June 2018) receives VA Home & Community Based Care at home in Michigan (6 til 10 p.m.) He also receives daytime non-VA care. We could not afford for him to be taken care of at home without the VA Aid & Attendance benefit. His savings are now zero so my sister and I kick in and have taken a home equity line of credit to hopefully keep him happy and in peace per his wishes. It was not easy to extract this from the VA, but we did find out that if Dad reaches what's called "skilled nursing" requirements, he could potentially be transferred to a VA facility or a VA-contracting facility. Skilled nursing, as explained to me by both Hospice and the VA Social Worker, is not required for Dad just because he is bedridden, cannot communicate (but is highly aware when awake), has dementia, protein deficiency (though fed very well and appropriately, not forced) and is no longer a fall risk. He does not use oxygen nor requires any IVs. He does not need advanced medication management (injections, infusions or the like). He does require 4-5 Albuterol treatments each day, and gets frequent pneumonia. But the VA does not recognize this as requiring "skilled nursing" because CNAs can administer his RXs at home.

The VA social worker said that the Detroit VA Medical Center does reserve a limited number of beds for Hospice vets, but does NOT provide Hospice services. They cooperate with other Hospice agencies in the area. If the Detroit VA Medical Center Hospice beds are full, the VA social worker has told me that they contract with a number of other skilled nursing facilities in the Detroit metro area. It was like pulling teeth to get the names of these facilities, but I did because I wanted to visit these places before I had to agreed to any sudden potential transfer. Also very difficult to extract, but in 2018 when I was investigating VA skilled nursing, I learned that the VA Medical Center hospice bed and hospital services would be free. But costs may be dependent upon the VA priority rating of a veteran, and my Dad was disabled during WWII. Finally, only a VA physician can certify VA skilled nursing requirements. They would cooperate with Dad's non-VA-Hospice doc, but ultimately any VA placement would require a VA physician signature.

Separately, Dad's Hospice service also contracts with local facilities, but transfer would be for respite only such as during a severe blizzard when caregivers couldn't get through. Not sure about co-pay for that.

Thank you for watching out for your Dad. He sounds like the kind of person my own Dad is. Unassuming, upright, dutiful and a living example to others. My heart goes out to both of you.
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number9 May 2019
yes, thank you. I also appreciate your tenacity and hanging in there for your Dad. It's time consuming and heartbreaking at times, but they very much deserve it.
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Hello, my uncle is in the same place and he is 96 year old as well. I have called several times and complained for him over the years. I have also called the ombudsman for the home. They are officials appointed to investigate individuals' complaints against the home on their behalf.

When I called the ombudsman, he worked very quickly and got the complaints resolved. Also make sure your name is on the call list and that your father gives you permission to talk on his behalf, they will have your father sign it and they will put it in his file.

My uncle is located 3700 N. Capital St. If this is where your father is located, send me a message I can give you the phone # to who I talked to.

Good Luck!
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number9 May 2019
Thank you. Yes, I am working with the Ombudsman. The problem is they have no rooms in LTC. They have relented too many times to residents who don't really need it. They have assured me that they are in the process of moving people around and some back to Assisted Living or a more appropriate level.
Thank you so much. Thanks for advocating for your uncle :)
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What a sad story to what was once a beautiful and vibrant life. Have you talked with a hospice facility? I have my mother with Kindred. While she is still in assisted living. She is nowhere as bad off as your dad, but she cannot walk or stand or toilet herself without one aide to assist her. She has both legs full of blood clots and edema and of course the fluid retention has cause her to go into congestive heart failure. The staff that care for her are very kind, but when her skin tears and possible cellulitis flares up, it is Kindred that comes in and takes care of her. Kindred also provides her with PT/OT and so far Medicare has been good about paying for it. I would suggest you contact some kind of hospice home care. They will be able to help you the most. I've not had to pay Kindred a dime for their work and they also give me support to keep me from running into the night screaming. There's only 2 other places I can think of, Compass, and Guardian. Research on your computer and find who is in your area. I will tell you this, once your dad is on board with hospice, he won't go to a hospital in his last days or hours. They will care for him in place or ask you if you would prefer the quiet of a hospice facility. I know hospice is in and out of my mom's assisted living facility all the time for other residents.

I'm sorry you have to see your dad go through this. He is right to want long term care and some places are better than others at providing that kind of care. Get some guidance from a hospice company before you decide to move him again.

I wish you strength and hope.
Angie
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number9 May 2019
Thank you Angie.
Friday I contacted Hospice.
However, my Dad only associates Hospice with end of life-like less than a week and he doesn't understand why I would request them.
I do think that once they meet and speak with him, he'll understand and get a lot of support from them.
I appreciate your input :)
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I think you have answered your own question: the facility says that it has no beds in LTC. Perhaps it has people in LTC who shouldn’t be there, but there isn't much pressure to shift them out (and of course it wouldn’t be popular with the people being moved). Sympathy and understanding is not the same as giving your father what he needs. Perhaps you should start looking around for another facility that can provide what your father needs. And when you do so (or even when you start thinking about it) make sure you let the facility know. It may increase their sense of urgency. Even asking if they know of any local LTC facilities with vacancies might do the trick.
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If he is eligible for hospice, perhaps he can stay where he is but with a more appropriate kind of care until there is a bed for him in LTC. A doctor would have to say he has only 6 months to live.
Nancy
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Best choice is hospice.
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Thank you everybody for your support.
I only asked for an opinion if a move to LTC seemed appropriate.
A lot has happened in a week due to advocating and pressure on facility to look into the situation and give us reasons for their decisions. We are confident that they are now doing what they can to make my dad comfortable until a room is available in LTC.
I did my due diligence and things are looking up.
Thank you !
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He should not go out of his way to keep up in assisted living then maybe they will see that he belongs in long term care. When people get to his stage in life they deserve to get all the help they can.
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My Dad has been living in the Long Term Care quarters within the AFRH for the past month after a couple more hospital visits and a very sharp ER Dr who observed that my Dad was not going to "let up" . She determined unquestionably that Dad should be in LTC with Hospice palliative care and wrote very specific orders so that there would be no question on the other end. My Dad has deteriorated significantly in the past month, but is at peace with his situation knowing that he is in a safe and caring environment. He is being well taken care of with help only a few feet away. I receive phone updates from the staff even though I visit weekly. With Dad in good hands, I have less stress as well. All good. Thanks again for your support.
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Fight the system. Appeal it in his name. Write a letter to your Senator and House Reps. All he is asking is to be settled in his final home. Death with dignity should be a right nor a request.
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