Help Me JeanneG CWillie GuestShop BBJessie FF Eyerish Country SnotS Pam KK J29 GWiz SendH Garden CMag and all others. Need a good answer.

I have a question for y'all. A good question.

I will give a fast background but if you don't want to read it just skip to question.

My dad was a rolling stone. He left his 4 children 50yrs ago. We never heard anything from him in all those yrs. No support financially nor emotionally ever. It was what it was. We all turned out pretty ok.

5yrs ago, Boom. A phone call came from Phoenix. "My mom is dying and the house goes to me when she's gone. I want your dad out when she dies." That was the daughter of my dad's GF of 25yrs. I was told they had a great relationship for yrs but this particular daughter wanted the house Immediately.

Some of my other sibs wanted nothing to do w/ him. One sis works 33yrs at a job and coudn't help at the time. I Understand. So I flew down and found him out of his mind w/ dementia. I put him in an AL and came back home and within days he had driven away and hid. The police found him at 2AM directing traffic at a busy intersection in Scottsdale a few wks later. Hospitalized. Flew down. Got him into small Memory Home.

Ran away again. Police found him at a gas station trying to get the 3 kids who were living w/ him in the car OUT! No one there. Hospitalized. Again. He got outta his straps and made it to the nurses station, found some scissors and tried to get out of the hospital. I flew down to get him. The drs said "Get him out of town! He is way too sick and needs much more help than he is getting!"

I drove him back to the Midwest and I laughed my head off! He was as charming and funny as I remembered as a little girl!

The drs in town said put him in palliative care. He only has year and a half to live. That was 5yrs ago.

Got him on the best meds I could which helped for awhile. Got him in Independent living and hid the fact that he was so sick. Took him out for about 4 hrs a day and cleaned up any and all evidence of his dementia as long as I could. Was put in AL 2yrs later because his Lewey Body Dementia w/ Parkinson Symptoms was getting full blown and Everyone in the home was seeing it.

I went down to his small apt everyday at 6am to clean up his place that was covered in piles of feces, puddles of urine, pools of tar like vomit. Everyday. If the staff sees it, they would put him in lock down memory unit which he made me promise I would never do.

Fast forward to beginning of September 2017. I get a call. Your dad has fallen. Broke the ball off his femur. The drs see his records and his condition and the fact that in July the drs had said he had 3~6 months to live. The team of Ortho drs say "We decided to not operate. We will keep him comfortable but he is so bad off and far gone and will never walk again. He will most likely die thru the operation."

My dad had made me his DPOA over everything. He had signed a living will and directive that said under NO circumstances to keep him alive if he would end up in a nursing home. These wishes were to be "strictly followed" it said. Even if his POA falters in her decision.

Now. In my family there are SEVERAL Drs and NPs and lawyers but guess who he made DPOA. Me. For a reason: I would do as he asked.

Well ~ It gets out that dad is in hospital on morphine for 2 days and for the first time they all come and get involved. In 5yrs. "What are you doing? This is cruel! How could you!?" I got phone calls from all over the nation from Dr friends of of family members. They are meeting me in the parking lot ~ "Make me POA. I'll sign the operation papers."

I'm thinking you people have NO IDEA how sick and far gone he is. I have been carrying a dead man walking for the last 5yrs! Praying that he would just go in his sleep.

OK ~ I signed the papers for the operation, he lives, he goes to rehab for 6wks. They come in to assess him from 6 different AL's and Memory care and all say he is too far gone. I am told to put him in a lock down drug induced state nursing facility and when I explain to my dad over a root beer float that he can't go back to his apt, and then return him to the rehab center, what's he go and do?


He won't go to a nursing home!

I brought him to my place. He's so sick I don't know how long he will make it poor soul.

My Q! What can I do legally, per Medicaid, to retro fit my walkout basement so I won't get in trouble? It is a second apt down there. An old fishing home. On a lake w/ tons of windows. But no shades no furnace that works very well. I pulled out the old kitchen and never had it replaced cuz it was never used down there. a small bathroom but hard to get around. No TV or cable run thru it. I put in the ring so I can watch him from my phone.

I've called Medicaid 3 times and was told anything that is for the benefit of the person is ok. I've seen an elder care lawyer and ran for my life from the office ~ Scary!!!

So ~ I'm asking all you that are so experienced and intelligent! If I can make it thru your scrutiny ~ I can make!

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ImSoTired1, after reading your post, I really don't know what to say.

One things for sure, your Dad has made life quite interesting. You'll have a lot of interesting memories.
Helpful Answer (4)

You are an amazing person! I would like to visit your retreat on the lake someday, maybe when it is my time to go.
If no one has visited or APS has not looked into your place, keep doing what you are doing, lay low, keep a low profile.The doctor I had worked for taught, allow people to live like they have lived, and a death like they have lived. I think he meant keep the doctors and government out of getting control of our lives.
Helpful Answer (2)

Thank you all for your well thought out responses! I may not like all the answers but that's why I asked all of you. Y'all have great insight and experience and that's what I needed!

He is on meds for his LBD and hallucinations. I had him into the Vets for the last 3 yrs, about once a month. Thank God for the VA! They couldn't have been better to us!!

He also has a rare bleeding disorder that attacked his liver which caused Terrible damage to his brain because of the ammonia. It is called Hepatic Encephalopathy. Plus that Lewey B Dementia on top of it. Not good.

When he is so confused he will apologize emphatically for the disturbance. He is so contrite; it breaks my heart every time. I'm like "It's ok dad. We got it covered."

I thought this would be a great opportunity to get to know my dad 5 yrs ago. And it has been. He was and is a fun and funny guy. He still cracks me up! I thought if I had just 18 months to get to know him I was going to take advantage of it and not look back to regret that I left him in a lock down unit somewhere. Like some of the others wanted to do. It has been just a blast going to lunch w/ him and junk stores and drives in the different seasons.

The last 8mos have been very trying. Unsteady walk, major confusion, bad hallucinations. Dad Still smiling thru it all. What a trooper! I gotta give him that. The leg break and the 7wks in rehab really taxed his LBD.

PLUS ~ Thank you for the answers on medicaid look back period!!! I was afraid of the gifting part as it isn't his house. I just had the cable run and the TV hung and thought this is the only thing I will put on his dime! And please note ~ It is Beautiful here! A big peaceful lake surrounded by trees and wildlife, huge open windows and now cable TV! I begged him yrs ago to move in downstairs but he thought it was too far from the ladies at the AL!
Whatever Dad!

After 4 yrs in Senior living he's gone thru a huge chunk of his money and I've been trying to stretch it as far as we could. I know if he goes into nursing care here it is about $8,000 to $10,000 a mo. I figured if I got him a little more time out of the system, and conserved that money, then he would have enough $$ to last him thru the times ahead. I just didn't know what was a gift and what was considered something that helped him out. Now that I look at it like that ~ Everything looks like a gift!

Thanks again my peeps!
Helpful Answer (0)

If Dad jumped out of a widow approximately 6 wks. after hip surgery, it is likely he can no longer walk or has severe mobility issues.
If Dad had vomited tar-like vomit, it is likely he has or had an ulcer or even Ca of the stomach.
If you watch Dad by your "Ring", it is likely he may be living alone as you go to care for him?

Dad's medical issues seem to be neglected in the face of the bizarre psychiatric issues taking priority.

Dad is "too far gone" to ever be left alone, needs 24/7 care, imo.

Your biggest legal concern should be if you leave him alone, and if you supply him with alcohol and "they" find out, or if he dies on your watch in his present condition and "they" accuse you of neglect.
Helpful Answer (3)

I'll tell you a story told to me. My cousin was visiting some relatives at the nursing home and asked her aunt how she liked living there. Well, it wasn't like home but the food was good, there were activities and people to talk to and overall it was a pretty good place to live for someone her age. Then she mentioned that she was so thankful her family hadn't put her in the nursing home. LOL
Helpful Answer (6)

Tired, I'm literally overwhelmed at your capacity for endurance and addressing repeated challenges. I think I would have mentally collapsed after the first few episodes. But I give you credit for your patience and dedication.

First: the issue of your father's GF daughter advising you that she'll inherit the house. I would ask for proof and politely tell her that verbal statements mean nothing unless the will or living trust support them. She might just be a manipulator. W/o seeing your father's Will or Trust, you actually have no idea what he's conveyed to anyone.

And if he never prepared any dispositive estate planning documents, and would be considered intestate, Arizona intestacy laws would govern on who gets what.

Second, having been out of his life for 50 years, realistically, you might want to consider how much your obligation to care for him now should and will demand of you.

I'm not suggesting abandonment, but I think his behavior presents some frightening and disturbing physical and mental patterns. There IS a limit to what you can do.

Third, I don't wish to infer anything, but have you questioned the extent and PURPOSE of your commitment, the trips, the extraordinary care which would challenge many people, especially those who were abandoned by a parent who came back into their life b/c of unsubstantiated claims by the daughter of his live-in GF?

Fourth, summarizing: he's escaped, lived literally homeless in a vehicle, lived in AL and IL through your gracious efforts while you covered for the extent of his behavior and mental illness, cleaned up messes which would challenge the ability of any body to hold its food contents, observed that he's NOT capable of physically caring for himself, seen him recover through complicated surgery, seen that his mental state is altered when he jumped out of a hospital window, dealt with nonparticipatory siblings, and are now, after 50 years of abandonment, trying to adapt a basement to care for him although you admit that:

You have been "carrying a dead man walking for the last 5yrs!" and have prayed "that he would just go in his sleep."

Fifth, t

Sixth, there's a sense of familial obligation and care that seems to guide you to extraordinary dedication, commitment and strength. The fact that he abandoned you and your siblings seems irrelevant.

Seventh, but in the meantime, where is YOUR life? Are you working? Have you taken vacation days or lost time off because of the care obligations? Do you have a family of our own?

So I ask, without intending to pry but just to understand: in the face of erratic behavior, dementia (as you noted when seeing him after 50 years of absence), inability to care for himself, what is the justification for attempting something by yourself, something that would literally require a staff of experienced clinicians and medical personnel?

You wrote that "I have been carrying a dead man walking for the last 5yrs! Praying that he would just go in his sleep." In all honesty, WHY?

I think this is a critical issue before considering adaptation of the basement. This isn't a criticism, but I keep wondering if there are some abandonment issues that you subconsciously feel, and that caring for him now compensates for his willing absence from his children's life.

I'm not justifying what might be considered abandonment, but I do think it's appropriate to analyze why you're willing to make time and financial commitments, before you take any further action.

On a more current level: Is he on any meds to address the underlying conditions, such as inability to care for himself, inappropriate and reckless actions, inability to recognize those reckless actions and their potential effect (i.e., jumping out of a window? - I couldn't help envisioning the scene from One Flew Over the Cuckoo's Nest).

Realistically, though, I find myself thinking that your father has serious issues and needs medication to control his behavior, for his own well being, and that his needs far exceed what any one person could provide on her own.

Even if you were to get in-home help, do you think that private duty caregivers would want to accept any responsibility for someone who has jumped out of a building window?

There's another factor; apparently you know nothing about this live-in GF; you don't know what he's done during the last 50 years, if he's used drugs, abuse alcohol, what his underlying medical conditions are, which might have contributed to his current condition.

My advice would be get a neuro or geriatric assessment and find a safe place for him where he'll be treated with respect and medicated to control his behavior to the point that he won't endanger himself.

Visit if you can, but recognize that what you can do is limited, EXTREMELY LIMITED, and work w/in those confines and limits.

And know that you've done more for him than anyone else in the family.
Helpful Answer (3)

In should have let the state of Arizona handle it. He should have been evaluated and determined what type of facility he needed. IL and ALs do not lock down. LTNHs do. What is he suppose to be dying of? He probably needs somekind of meds. I agree, get hospice in there. Think you took on more than any one person can handle. You should tell ur other siblings they wanted nothing to do with him five yrs ago, help or butt out.
Helpful Answer (3)

Run. Take Dad with you.  Maybe it is all you can do to take care of Dad.
The reason is, that I cannot get a good reading on your Dad's real illness and status, given only a short time to live, but still alive after 5 years. Running has seemed to work for you so far, unless you cannot continue.
Financially, do you really need Medicaid's help, what with all those high powered lawyers and doctors giving orders, judging you?
Figure out what you want (since Dad doesn't run away from you)
and send them a bill for their portion, whether it is housing or end of life care. You are in charge for a reason.  You've got this. 
Once I have had some sleep after doing insurance paperwork, I may be able to come back and give a viable answer. But right now:
1) Never stop doing what is right for your Dad because of what Medicaid says.  Take a day, rest, practice doing nothing.
2) I think his illness has varying degrees of function, and sometimes he rallies, so get his meds re-adjusted by an informed geriatric M.D.
3)  Can Dad live upstairs?

You surprise me by adding my name to your list of requested posters. Thanks, I think.
Helpful Answer (1)

Labs, in my state and to my understanding all others, Medicaid Waivers for home modifications can only be used on property that the person on medicaid owns or has a life estate in. That didn't appear to be the case here with the poster owning the house, not the father.
Helpful Answer (1)
Helpful Answer (1)

ImsoT, blunt answers and you might not like them. No, you WON't like them, but you asked.
First please remember, no one can change the Power of Attorney but your father. So if it comes up again, tell whoever demands that POA be changed to them that only your father can change it. And if he wants to, let your father change it.
Second, if you use your parent's assets to modify YOUR home, then it will be gifting since the home modifications will be left when your father either dies or has to be moved out. Whatever Medicaid rep is telling you that the physical mods can be paid for by his assets with no repercussions is not understanding the law about someone else's property being improved - unless your father's name is on deed? And Why the elder law attorney freak-out? your father's money CAN pay for that with no problem from medicaid and it's help for you to arrange things - lots of papers and work, work, work. But With Help.
Third, Barb is right. Call hospice to evaluate father's status and his physical needs. You do realize that construction to retrofit a basement to fill building codes in your area won't happen immediately? it could be weeks before it's finished and Dad would be NH any way. It doesn't sound like he is firing on all cylinders. I don't know why you have such aversion to drugs to help calm his agitation and his physical pain. Normal, sane people don't jump out of windows as a response to leaving a rehab - they check themselves out using legal recourse. If you don't get him some sort of care for his mental issues, a mandated reporter - doctor, home health nurse, etc - is going to report as required by LAW that father is a danger to himself and others; and the state will step in on an emergency basis. Once the state assumes guardianship, if you DID use money to modify home, you'd have to pay it back as your father would no doubt be put in a facility for his own care. And any jointly held assets would be subject to father's portion being seized and you having to provide documentation that as POA you used his money to his benefit. Ugly once Adult Protective Services comes in. And APS will become involved sooner rather than later with dramatic window escapes.
Fourth, do you have the ability to provide 24/7 care and oversight? This whole situation is really enabling and enmeshed. It sounds what you need first is a therapist for yourself to figure out why you have appointed yourself your father's savior at the cost of your own needs and financial security. Father's disease and physical needs will only increase and no one can provide the same level of care as a facility for the same cost. 24/7 care will not be paid for in your home by Medicaid or the VA or Medicare. It Just Won't Be. And if you crash and burn, your father will become a ward of the state anyway; and all your efforts will be swept aside. Please evaluate your options with you having just as much right to happiness and security as father.
Helpful Answer (4)

Call hospice.  Then call your local Area Agency on Aging and find out what help you can get, i.e. aides, housekeeping, bath aides.  Is he on Medicaid? Get him signed up. Is he a Vet? Find out if he's eligible for assistace through them.

If dad has resources, they should be used for his care.
Helpful Answer (2)

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