A Disturbing Thought I Can’t Shake

When I woke up this morning the first thought I had was a line that I “thought” came from Charles Dickens “A Christmas Carol”, but I have since skimmed the book and haven’t found the line…. that doesn’t mean it’s not there. I heard it somewhere and I could’ve sworn it was Dickens.

“He died the same way he lived, alone”.

A couple days ago I said maybe I would talk about what was going on with my father. First of all unless you are a first time reader you know my relationship with my dad is more than complicated.  He has abused me since I was a tiny baby, and while he can no longer physically hurt me, he manipulates me, guilts me, psychologically and mentally abuses me.  And I let him.

One day last week he was discharged from the rehab he was in.  Medicare would no longer pay for him to stay and he’s stiffed more than one facility on self-pay (several he stayed at for a month without paying a dime).  So this particular facility discharged him “home” because he lied.  He said he had to go to a hotel that night because his house was being fumigated but his fiancé would bring him home the next day.

So which lie do we start with?  Lie #1 This month the bank seized his house.  My sister had 4 days to get as much of his stuff out of there as she could. So he had no house to go to, he had a motel or a homeless shelter. Lie #2 His fiancé broke up with him a year ago this past March, as in 16 months ago.  He has no one.  He has pushed away, used and abused everyone that ever tried to help him. Lie #3 Both my sister and I asked him about discharge plans and he said there were no plans to discharge him so we had no idea all this was going down until my sister got a call that he couldn’t stay at the hotel, and she had to go get him, when he was trying to check into because he was a liability.  Eventually they let him stay 2 or 3 days, and he moved to a different hotel, which is where he currently is, as far as I know.

I say as fas as I know because he told me that he is done with my sister (as in relationship wise- despite she has spent the last 18 months of her life keeping him alive), and he told me he will never again tell me where he is because I will just tell my sister and she will get him kicked out, because we want him institutionalized.  And he’s right.

Now let me tell you WHY we want him put in a nursing care facility.  Back in October 2016 he was found unconscious, by his ex-fiance who had come over to bring something for his dog that she had taken care of for him.  The ambulance came.  He had lost control of his bowels and his bladder, had a seizure, aspirated the food he had been eating into his lungs, his blood sugar was in the 30’s and while they were there his heart stopped for 3 minutes.  For 3 minutes he was DEAD. Laying around his house was all food he shouldn’t eat.

They were able to revive him.  He had no reflex activity for a day so we weren’t sure if we would be facing a pull the plug decision or not.  He woke a couple days later, and it took a couple more days for him to be cognizant of who everyone was etc.  He still didn’t understand what happened him, and to this day I am not positive he understands the gravity of the situation.  And he still is adamant that he was on his way to have a dialysis fissula put in and ended up in the hospital. No amount of convincing can change his mind on that.

He spent a significant time in the hospital and in rehab.  He had close to 0 kidney functioning so he started dialysis 3x per week. After refusing OT/PT/Speech a certain number of times the insurance company kicked him out of rehab. He wanted to go home and he is a master manipulator so he worked the system.  Oh did I mention at one point he lost his medicaid and my sister had to pick out a plan for him from the marketplace, for which he resented her for.  So he was dishcharged home with the understanding he would have home health come, PT and OT come.

Once at home obviously old habits continued.  He can’t see due to cataracts so he had to have people shop for him, and his shopping list looked like that of a teenage boy. It wasn’t long before he refused the home health nurse, OT and PT, though he told my sister and I they were there and what they were working on etc.  But unbeknownst to him my sister was talking to the home health company and they were telling her that they would only try a few more times.

By the end of January when my cousin would come to get his groceries he would be sitting in dirty adult diapers, shirts covered with feces, and at one point she got a look at his foot and sent pics to us. We tried to intervene and he said his foot was looking better etc. A couple weeks later my cousin again saw his foot this time, it was black halfway up and smelled horrendous.  It was gangrene,  This was a Sunday night and she finally convinced him to go to the ER.  He went and they told him that he needed an emergency amputation.  To say he was LIVID was an understatement.  He didn’t believe them, and wanted to leave.  But my sister upon hearing the news dropped everything and went to him.

Now let me stop here and say what you all may be wondering- why hadn’t we tried to have him declared incompetent.  First of all, several repots were made to adult protective services, by my sister and I, his doctor, the rehab nurses, even the police.  But in his state it takes up to 90 days for anything to happen. So we were doing due diligence.

She went to him and convinced him to have the amputation. That night they cut the gangrene part off, and would wait a few days for some infection to drain before they would decide how much further up they would have to go, but they were thinking just below the knee.  Which is what it ended up being.  I give kudos to my sister.  She said it’s a smell she will never forget as long as she lives.  She sent me pics and I will never be able to unsee them.  At the time of his admission he was also severely malnourished, and had no muscle tone or strength.

So he spent about a month in the hospital post amputation and then was moved to his first rehab.  He was horrific to the nurses.  He would be on the phone with me and be screaming at them.  He was having people sneak him in KFC, McDonalds, he was ordering pizzas to be delivered. Nothing had changed. After refusing PT/OT etc the insurance company refused to pay anymore, so he became self pay.  He said he would, but when it came time to pay each week he refused.  They let him stay there one month without any payment.  One day at dialysis he became very ill, was incoherent and was brought by ambulance to the hospital.  When he came to, he took a look at where he was and said no way, I am not going to be here Im fine and tried to take a cab- now imagine a man with one leg, in a hospital gown getting in a cab. He did it and went back to rehab.  But they couldn’t take him because he had no orders to be there since he had signed out AMA.  He was LIVID.  He was screaming at my sister on the phone.  It was a nightmare.  We finally convinced him to go back to the hospital where he stayed for a little while.  They had to deal with a clotting in his fissula, among other issues including an infection in his finger that had turned to gangrene. The doctor told him it had to be removed but he refused.  So they bandage it up and did wound care. The doctor warned him right now it’s just a finger but soon it will be a hand, an arm, his life. Still my father refused.

Then they moved him to his next rehab. Here, he said the place was nicer but he hated the food.  That was consistent throughout all the places he stayed- and that’s because he wants to eat other than what is allowed on the dialysis diet.   Im not sure how long he stayed here before he was kicked out for non-payment and moved to his final rehab hospital.

I would say at this last place he stayed about 3 weeks.  And he was discharged because he had met his PT and OT goals.  He finally realized that was the key. However, he still had malnourishment, little to muscle tone and a gangrene finger. When he was discharged he lied to the facility. He told them that he would need to be brought to the local motel because his house was being fumigated and his fiancée would bring him home the next day.

Now we all know that the fiancé had not been in the picture for months so we don’t even need to discuss that. However at the beginning of June his house was seized by the bank for nonpayment of mortgage, we had known this was coming for months and starting last May my sister had been trying to convince him to let her help him find an apartment so that they didn’t have to move out in a rush when the sheriff showed up. But true to form he refused and the moving became an emergency on her part she had four days to get as much as she could out of the house. When she went in the house it was disgusting I won’t even go into details and she hasn’t even shared all the details with me. She got as much as she could in two days, rented him a storage unit and put it all in there.

So back to why he won’t tell us where he is. He was moved to a new motel by cab where he called me as well as his ex fiancé. So she told my sister and I where he was. When I talked to him on the phone as usual he was verbally abusive to me and doesn’t understand why I think he needs help. He told me he was going to get a cell phone and move and never tell us where he was. He said he was done having a relationship with my sister and that I better not tell her where he is, I said to him that the last words that she had said to him were that she was done so I don’t think she would be interfering as where he is staying. And that by law I have to continue to let him make his own decisions and I would not interfere with that. He was belligerent and mean and I said to him to call me if you needed anything and then he hung up on me.

The next day he called me from the bathroom his prosthesis had fallen off and he couldn’t get out of his wheelchair to get onto the toilet and he yelled and screamed at me for God knows what reason but he said the front desk was too busy to come and get his leg for him and that they would come eventually. explain different ways that he might be able to get his leg himself and I suggested that maybe he call the ambulance at this point he hung up on me and all I could hear were buttons being mashed into my ear.
He told me that eventually he got a coathanger and use that to get his prosthesis and put it on by pushing his foot against the bathtub then he was able to use the restroom and then had a visitor for a while he said all this to prove to me that he could live alone. However, what I said to him was not to rub salt in any wounds but you should look at today and think about how hard independence is. He started screaming that I my sister and I want him institutionalized and at that point he said it cost me every minute I speak to you and he hung up. 
On Monday my sister received a text from my cousin my father had fallen and called her to come and pick him up off the floor, this it happened more than once in the past couple days apparently. She also told my sister that his finger looked terrible it was black and spreading. She had tried to get him to go to the hospital. And he said he was doing his own wound care and all it needed was some peroxide and she said yeah like your foot? He called her again Monday to be picked up off the floor and my sister urged her to call the ambulance and the police. So she did.

A police officer and the ambulance showed up at the hotel and picked him up off the floor. They urged him to go to the hospital and he refused and unfortunately it is his right to refuse medical care. My sister spoke with the officer and the EMT the EMTs said that he could have just snapped the finger off it was so bad.  They urged her to make another report to elder care for self-neglect.

This was Monday and I’ve heard nothing sense I haven’t talk to him since Sunday. Part of me is worried he is dead on the hotel floor and part of me says if he is he put himself there. I just texted my sister and asked her if she thought he went to dialysis yesterday and if I called they would tell me. My sister spoke with the DCYF today and they urged us to take over power of attorney my sister said that that’s a lengthy process and the woman said that they could get an emergency hearing in the next day or so. The problem is neither of us are sure we want to be the one responsible for him he is abusive he is downright mean he is manipulative.  We are pretty sure he’s borderline personality disorder her and narcissistic and who knows what else. My sister has two options she can take guardianship of him or we can look at a public guardian to take guardianship of him.  

If we let a public guardian take guardianship of him we have no say in anything but at the same time we don’t know if we want to have any say. We are really stuck between a rock and a hard place. All I know is I have a sick feeling in my stomach and I don’t know what’s best for everyone involved other than my father cooperating which is never going to happen. 

After I typed that I needed to get rid of the sick feeling in my stomach so I called the dialysis center to make sure he had been there yesterday, he had. They also put me in touch with the social worker at the dialysis center whom I talked with her about a half an hour, and she urged me that neither my sister nor I take guardianship of him. That we need to let the State handle it because he is too abusive. She also said that she really feels that he needs a full psychological evaluation and is not sure why one hasn’t happened yet other than most caseworkers and social workers don’t want to take the time to do it but she’s willing to go the extra mile.

The difference between her and the other caseworkers I can only imagine is the fact that she’s a Christian. I know this because she talked of prayer and the Lord. It’s nice to know that there are others out there praying for him and a positive outcome, or as positive as can be expected.

After I get off the phone with her I called the hotel that he was last out I said I know you don’t typically give out information about guests staying at your facility but when I say the name I’m sure you understand, my father has cut my sister and I off and we are very concerned about him so I would like to know if he is still checked in. She said yes he is, and I’m very sorry that I can’t give you any more information I could however patch you into his room. I said that’s probably not a good idea he doesn’t want to talk to me, and I know the state was there today so I’m really sure he doesn’t want to talk to me.

I hope and pray and ask any of you that pray that the state forces him to go to the hospital and have his finger that is sepsis and gangrene taken care of and he finally gets a full psychological evaluation. I would like to see my father live a little longer, I don’t have high hopes that he’ll have a long life but I would like to see him live a couple more years at least he’s only 57 years old. And I sure as heck don’t want him to be found dead on a hotel floor. 

Author: thethingswehideinside

Im an almost 40 year old mom struggling through this life with two children, a husband, a houseful of animals. We all have mental or physical challenges that make daily life even harder, this is our journey.

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