My Personal Story Part Four

Pt. 4 Grateful for Medicaid

In October of 2016, my dad was hospitalized for about a week – he’d developed a clot in his leg. Shifting from assisted living to the hospital was hard for him. He was disoriented and agitated. It wasn’t long after his return to assisted living that the director told me that Dad’s needs were exceeding the facility’s ability to care for him and we needed to start looking for a skilled care facility.

For the past several years, my sister was in a position to supplement our dad’s income, beginning before my mom passed away. Her circumstances were changing – it was increasingly difficult to afford to keep our dad in assisted living, and now he was needing even more expensive care! We were getting ready to put his house on the market, but who knew if that would be enough to sustain him? I made an appointment with a social worker at the local Medicaid office.

I began the Medicaid application process, bringing all of Dad’s documents to the appointment. It takes about 45 days to get approved, and we were working on getting all the ducks in a row. Again, I lucked out! The staff at the assisted living facility began the search for skilled care, looking for one that would take Medicaid and had room for him – and one that had a good reputation. And they found one! Dad moved in the week following Thanksgiving.

We didn’t tell Dad that he was moving until the morning of the move. One of the effects of dementia is agitation, and we wanted to minimize that. Plus, my dad dropped his portable oxygen tank on his foot the day after Thanksgiving, and he was in some pain, and had to use a wheelchair. The skilled care facility soon had my dad walking again, though he did use the wheelchair more than he had previously. Then two days after Christmas he was back in the hospital.

It was another clot in his leg. After talking to the hospital doctors, we decided on palliative care. The medical staff said that if antibiotics didn’t work, they’d have to amputate the leg, and that was a distance I was not willing to go. They said that if he did recover, this would happen over and over again, and he was in so much pain that he was screaming when given an injection. So he was transported back to skilled care and he passed away three days later.

In many ways we were so lucky. My brother and niece were visiting, so we were all able to spend time with our dad over those three days. I don’t know if he had any awareness of our presence (I like to think that he did), but it was certainly a comfort to us. And when his doctor came to check on him, he sang hymns to our dad. I found that incredibly moving and heart-filled.

We didn’t hold a memorial service until May. We felt that the service needed to be held where his friends could attend, and it gave us all some space to grieve and come to terms with his absence. It was wonderful to see those friends of his we’d met before, and to meet those friends of Dad whom we did not know. And to hear how his life and love impacted so many others.

My dad passed away before Medicaid was in place, but I was able to sleep at night, knowing that this was an option. This is an option we need to keep in place as about 10,000 baby boomers reach the age of 65 every single day. We will soon have the largest old population our country has ever seen, and long term skilled care is not covered by Medicare. There’s already people banging the drum to cut Medicaid (and Medicare) benefits, so my question is, “What will our nation do when such a large body of citizens has nowhere to go?”


My Personal Story Part Three

Pt. 3 Grateful for the Court System

My dad and M. were happily unmarried, or so I thought.

I visited them about a week after their ceremony, and I picked up my dad one day for a doctor visit, and he seemed very happy. So I was surprised when I received a voice message from M.’s son 16 days after their ceremony of commitment which said that M. and my dad were going to go down to the courthouse to get married.

I went to see them that evening. M. tried grilling me to find out who told that they wanted to go to the courthouse. (This was when I knew that she was actively trying to keep this from me.) M. said she became upset when she called the courthouse and was told that a marriage of commitment was not a legal marriage. (It was here that I began to wonder if my dad was the only one in this partnership who had dementia, since we had been very specific that a ceremony of commitment had no legal binding and that was why we agreed to this option. During out meeting with the director where this was discussed, her daughter told M. that she could legally change her name so she and my dad would have the same name, so I don’t know where this disconnect occurred.) I tried to tell M. that even though it wasn’t legal, it was a ceremony before God, but this didn’t seem to matter to her – she wanted to be legally married. I again said that my dad didn’t have the capacity to make this kind of decision due to his dementia. At this point my dad said very loudly, “I DO, TOO!” (It’s hard to be diplomatic and honest in this type of situation. I did the best I could.) I told my dad that he could still do many things, but I did not believe he could make this type of legal decision. And then M. got up in my face and asked, “Has he been declared incompetent?” to which I responded, “Not yet.” M. then told me to leave, and I did.

Just a side note here: When I was both a child and as an adult, my dad frequently misplaced items – this was not a new behavior of his dementia. When we went to clear out his house in Georgia I found three or four different driver licenses for generally the same time-period. When my brother moved our dad to North Carolina, I took all of Dad’s cards and identification into my possession so they would not get lost or stolen. I didn’t know then how this would play out to our advantage in the future.

As I’m sure you know, there is a requirement when applying for a marriage license that the applicants must show identification. While my dad and M. were at the Registrar of Deeds trying to get a license without Dad’s identification, I was at the courthouse filing a petition for guardianship. The guardianship hearing would take place about three weeks later, so I also filed a petition for interim guardianship which took place about three business days later, and I was granted interim guardianship.

Part of the process of attaining guardianship involves the court appointing a guardian ad litem who advocates for the rights and needs of the ward. An attorney was appointed to interview my dad, my sister, and myself, and I believe he also spoke with the director of Dad’s facility.

I thought it would be best if I did not exacerbate the situation by visiting my dad very often during this period. At the end of the month, though, I went to move his belongings still in his old room to the room he was sharing with M. to avoid having to pay for a room he was no longer using. The plan was that he and M. would split the rent on her room.

When I arrived, both he and M. were laying on the bed, and M. was on the phone. After telling her caller, “Oh, she’s here,” she got up and left the room. I went to my dad and asked how he was doing. He said, “Not well.” I asked what was going on, and he said, “Apparently we’re splitting up.” When asked why, he said he didn’t know and he didn’t know what he would do, now. I told him we would pack up what he’d already moved to M.’s room, and he’d go back to his old room. I then went to talk to the director, who knew nothing about what was going on, but Chris was a go-getter, and after talking to M., he arranged for help to move everything back to Dad’s old room during the lunch period. Dad went to eat lunch and we moved it all back. No sooner had this been done than M. was at the door, asking my dad to move back. What a roller-coaster!

Six days later I went to the guardianship hearing. Luckily, my dad did not have to appear – and I was glad he was spared this. No one should have to listen to why they are no longer considered competent. Part of my dad’s dementia included verbal aphasia. When beginning a conversation, Dad could usually get out a short sentence on a good day, but anything further was difficult. There were long pauses as he searched for the word he was looking for, and sometimes the word he chose was not the one he meant. Often, he just gave up and was silent.
Being able to communicate is a big part of being legally competent. The guardian ad litem recommended that I be Dad’s guardian of person, and so the petition was granted. I knew this was ultimately a victory for my dad, but it was sad that this was necessary.

I never directly told my dad that I now was his guardian. I did give letters of administration to the assisted living facility, the Registrar of Deeds, and all the doctor offices, and I occasionally would verify this with him being present, but he never asked me about it, or seemed concerned about it.

My dad and M. got back together, split up, and got back together again. After a couple of incidents, one where M. followed my dad down the hallway during an argument, grabbing his belt, and once when staff saw her yelling at my dad and he was crying, the director and I got together and decided that this just wasn’t healthy for my dad. Even though my dad told me that he didn’t want to live with M. anymore, she changed his mind, and he wanted to stay with her. (I think this was dementia related – he was very biddable.) Chris, the director, again arranged for my dad’s belongings to be moved during lunch, and when Dad and M. returned, most everything had been moved. M. tried to talk to me, but I just moved away with my dad, saying that we would go look at his new room. We sat down, and I reminded him that he wanted to move just a day earlier, and that this relationship was causing a lot of unhappiness, and just wasn’t healthy for either of them. My dad took this in, and after a while said, “I think I understand why you did what you did,” and that seemed to be the end of it. (I really don’t know if perhaps this was again just another example of being easily persuaded with his dementia or if he really understood.) Eventually M. moved away from the facility and though she occasionally contacted me, she did not see or talk to my dad again.

This time I did not sigh in relief – I just waited to see what new adventure was to unfold. I felt like I’d been through the wringer, and I was hoping for a quiet period of easy decisions. And for a few months, that was the case.


My Personal Story Part Two

Pt. 2 Grateful for Assisted Living Administration

When my dad moved to assisted living, he was pleasantly surprised at how much he liked it. I’m not saying he loved it, or that he enjoyed the food (I’ve yet to meet someone who does), but my dad was a people person and he enjoyed being with pleasant people. Over and again I was told by his neighbors and staff how my dad was such a kind man, and how they enjoyed his presence there. When his divorce was final, I breathed a sigh of relief and felt I was through the worst of his situation. Well, that was premature!

About two weeks later, my dad tells me he’s met someone at the facility. He had a twinkle in his eye and that shy grin on his face. I was surprised, and a bit concerned. A short time later he said they wanted to get married.

At this point, I’d yet to meet the woman he wanted to marry, but I took my concerns to Chris, the director of the facility. And let me be clear – I had no objections to my dad having a relationship – I wanted him to be happy and content. I had great objections with my dad making a legal arrangement when he had a diagnosis of dementia. The director understood, and set up a meeting between him, my dad, his new love (I’ll call her M.) her two children, and myself.

Chris arranged the meeting to take place during lunch, and provided lunch for us. My first impression of M. was that she was ebullient being with my dad. And it turned out that I was acquainted with M.’s son from years back. Her daughter lived in Marietta, GA and came up specifically for this meeting. After M. told us all how they were in love and wanted to marry (with my dad nodding and grinning), I told the group how dad had just gone through a difficult divorce and that I didn’t think it was wise to get back into a marriage. M. said that she didn’t want any financial support from my dad, she just wanted to be married to him. I brought up the elephant in the room, stating that since Dad had dementia, he had no business making a legal decision. M.’s children agreed with that.

At this point, Chris talked about the relationships he had seen during his time working at assisted living facilities. He said that some couples got married, some had ceremonies of commitment, and others simply lived together. We discussed ceremonies of commitment, and we all agreed that this would satisfy what each of us needed – a commitment of love between Dad and M., being joined before God, and having no legal entanglements. Crisis averted!

M. was quite excited about planning the ceremony. I even volunteered to officiate (I had two previous ceremonies under my belt) knowing that I could be sure that there were no legalities involved. A date was set for about three weeks later and I got to work writing the ceremony.
And it all went off without a hitch. Family members from both sides attended the church ceremony, and there was a reception at a local motel afterwards. (One of M.’s family member asked if I’d do her ceremony of she ever decided to marry again!) M.’s daughter sprang for a couple of nights for the newlyweds at the motel, and I again sighed in relief.
I was so grateful for the assisted living director coming to the rescue with both his suggestion and how he was able to get us all on board, and I was glad for the structure that allowed for this to unfold. If my dad had been at a different facility, who knows how this would have developed? Each has their own policies and rules, and I was so grateful that a legal entanglement was averted.

Then sixteen days later, another shoe dropped. But that’s my next post.


My Personal Story Part One

Pt. 1 Grateful for Adult Protective Services

My dad remarried in 2009, just ten months after my mother passed away. I take that action as a testament to the success of Mom and Dad’s marriage – it was so good he wanted to have another experience like that. The problem was – none of us kids liked her. (I’ll call her J.) J. had none of the characteristics we associated with our Mom, and she was argumentative the few times we met her. Plus, none of us thought that Dad had grieved enough to be able to make a serious decision like this. I suspect that a lot of the decision was made in a “knight to the rescue” kind of attempt, as J. was living on public assistance after recovering from a serious car accident, and this assistance was running out. My sister was the only one who attended the wedding (kudos to her!) and on the first occasion I saw my dad afterwards he admitted that marrying J. was a mistake.

I believe that even knowing they were not well suited, my dad still wanted to make it work, and when J. was diagnosed with breast cancer, my dad was there for her.

A few years passed. Although my dad said he wanted to spend the year-end holiday with us, he cancelled a couple of weeks earlier in 2014. The following January he was admitted into the hospital, and at this point we learned of his dementia diagnosis. 2015 was the year that his verbal aphasia grew worse, so it was difficult to communicate in any detail with him. J. was frequently unable to cope. We started hearing from Dad’s neighbors about how they were concerned for him, and how erratically J. was acting. Adult Protective Services were called in for neglect. My Dad was in and out of the hospital frequently for falls, and one stay required a rehab facility since they did not want him to go home. During this period J. was involuntarily committed a number of times.

My siblings and I were tearing our hair out. We were hearing that one time J. was running up and down their street, yelling at people. I have no idea what kind of hell my dad endured, but the look of his gaunt face when he was in rehab spoke volumes. Of the three of us siblings, I was geographically closest here in Asheville, and still that was four hours away. My brother was in South Carolina at about five hours away, and my sister had moved to Idaho. We did all we could, legally, but since J. was his wife, we could not swoop in to rescue him.

The breaking point came in July of 2015 when my dad finally announced that he wanted a divorce and we all breathed a sigh of relief. My brother stayed with him in Georgia for a month while we made arrangements for him to move to an assisted living facility here in Asheville. During the fall of that year, we made several trips back to Georgia for his divorce proceedings, which was granted in December. It was during the trial (yes, J. wanted an actual trial) that J.’s schizophrenia was revealed. And now this roller coaster ride seemed to be over.

I truly don’t know what would have happened if someone had not noticed how my dad was being neglected and reported it. Before my dad decided on getting a divorce, his case with Adult Protective Services was closed out – since J. was (temporarily) out of the picture – but once she was released, she was back in my dad’s life. (I discovered that one of the characteristics of my dad’s dementia was how easily he was led – a characteristic that would show up again in 2016.) When I called Adult Protective Services, I was instructed to file another report to get him back in the system.

After he was divorced, one of his neighbors told us that she believed that J. had been doping him to keep him sedate while she went out. The neighbor based this on her observation of how alert my dad was when he’d returned from the hospital, and then a few weeks later he was just droopy and staring when she visited. I don’t know if doping was the reason for this or not, but I can say that he was not like that at all when he was in the assisted living facility.
Adult Protective Services provide an essential service. Each state, of course, has their own version, but there is a national website called NAPSA that will direct you to the Service in your state.