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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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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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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.
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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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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 May 2019
Let me add a "second" to the thanks Isthisrealyreal has given!
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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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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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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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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 May 2019
The poster has said they are currently waiting for a bed to become available.
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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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