Another weekend has come and is going quickly, and I declared it a "slow down" weekend. We've had no weddings to attend, no special performances, no big plans at all, and I've insisted on doing some recliner time. It's been very nice after the trying week we've had. During this past week I've spoken with a Social Security representative whom I found incredibly patronizing, I've been told by two different caretakers (one at the Rose Cottage and one who comes into our home) that Billy had the worst day they've seen in the six months they've stayed with him, and I've dealt with a day of Billy's extreme anxiety.
In an earlier post, I wrote about our experience with the Social Security office, and it was a very pleasant event. We had a kind and patient representative who was helpful in so many ways. The end result of that visit was that Billy would receive no services from SS until he is able to draw retirement after his 62nd birthday. She did say she felt that he would be able to get on Medicare after he had been disabled for two years - which officially hit the mark in April. I was unsure about how to apply after looking at the website, so I called their general number. I was connected with a representative who did not focus on telling me how to apply but instead told me he would not qualify for Mediare because he had not been on SS Disability for two years. In fact, he's never been on SS Disability because he's on Retirement Disability for Texas Teachers. She was very matter of fact about the rules, and I pressed to understand why I would be told by someone in their organization that he would most likely qualify if it were not a possibility. She just repeated what she had told me before - saying it a bit louder and slower this time. The only way a person can get Medicare without being on SS Disability for two years prior is to have end stage renal failure, ALS, or something else that did not include Alzheimer's Disease. I should remember it because she said it over and over. I mentioned that my husband has Early Onset Alzheimer's Disease, and later in our conversation, she said that there was no mention of Medicare for early stage Alzheimer's Disease. I corrected her to say that he is not in early stages, but he has early onset AD. He is actully in later stages. She again repeated the reasons you may receive that particular program and ended with the point that he could apply when he is 65. My parting words to her were that I really doubt Billy will live to 65. That's more than 10 years, and I do not see him living that long. I do know it's possible and his mom lived with this disease for at least two decades, and I do not see that as a blessing.
I attended an educational conference in Dallas Wenesday, Thursday, and Friday, so Shelley picked up her dad from the cottage on Wednesday and Friday. When she picked him up on Wednesday, the nurse at the Cottage said he was worse than she had ever seen him. I wasn't sure what all that entailed, so I called the next day to get specifics. It seems that he paced from 7:30 a.m. until the end of the day, wanted his mom to pick him up, and got very angry with them. He told them if they didn't call his mom or his wife, he was not going to work there any longer. The next day was his day at home with Catherine, and as soon as I got there on Thursday afternoon, she told me it was the worst day she'd ever had with Billy. He paced all day, wouldn't eat more than a 1/2 sandwich, and insisted that she take him home or call his mom. She took him into the bedroom to see if any of it seemed familiar....our clothes in the closet....nothing seemed to help. He was dripping with sweat most of the day, which is how his body reacts to these intense moments of anxiety.
On Friday, I sent Seroquel with him to the Cottage in hopes that giving it to him in the afternoon would calm him. I wrote a note for him to keep in his pocket telling him where I was and that Shelley would pick him up between 5 and 5:30. The report I received said he seemed slightly better than Wednesday but not a great deal.
I'm glad we've had a weekend to sort through things a little, but I may be more uncertain now than I was before. I do know that I have to make some changes...I just don't have a clear vision of what those are just yet. I appreciate all your prayers as I seek wisdom on what is best for Billy, and I do believe that includes what is best for my health. We went to lunch on Saturday, and he told me he has a real fear that I will "put him away," and I asked him what what he meant. He struggled to say anything, and I asked him if he meant a nursing home, and he nodded. I can't assure Billy that I won't place him in a facility. I detest the thought of it, and I would love to say I can keep him with me at home through all of this, but there are too many unknowns. I'm not certain I can work all day, and come home to care for him physically and emotionally when he gets worse. Ideally, I would have some assistance for the day and part of the evening, but I'm not certain if that can happen. I make enough money to knock us out of some assistance programs, but I don't make enough to pay for that type of care. Paying for daycare is a challenge, and in-home care is more expensive than that.
The next best thing to home would be a top rate assisted living facility, and the cost of that is between $3000 and $5000 a month. At this point, Billy has a small retirement annuity and insurance. I am thankful for both, but they will not come near paying for a month of care. My choice appears to be getting Billy on Medicaid and placement in a nursing home eventually. I know there are some excellent nursing homes, and I am looking into finding one (at a very slow pace), and then things get fuzzy for me. I know the attorney will help with that, but what he has told me so far is that he has to be in a nursing home already before he qualifies for Medicaid. I don't know how long that takes, and I don't know that we are guaranteed that he will qualify. So, in the meantime, how do I pay for the cost? I know God will not let me go. I just don't have the answer yet.
Billy's sleep patterns have improved, and I am so grateful for that. He doesn't always know where I fit into his life. He told me again yesterday that I was a great sister. Today, he asked me where my mom lives. When I told him she and my dad live in Corsicana, he said, "That's where Kathy is from." I looked at him and took my glasses off and said, "I'm Kathy." He told me he was talking about the other Kathy, but he couldn't articulate who that is. Later in the evening, I asked him if he knew my name, and he told me it is Judy Kathleen Barnes....completely left off the Knowles. I asked him if he knew how we are related? He paused and laughed that wonderful laugh he has and said, "I really don't know."
Sometimes I'm not certain what help I need from God, so I'm just laying it all at His feet. I do have some good resources, and I'll make some phone calls tomorrow morning. One call will be to the doctor's office because we need something to assist with the severe anxiety. His poor body and mind get so tired when he has these moments. He's losing weight quickly, and although he can stand to lose some right now, it needs to slow down at some point. He's gone down 2 sizes in pants since winter.
Enough of my rambling tonight. Pray for me to find answers to help Billy find peace. It's so difficult to watch, but I cannot imagine how hard it must be to live with daily confusion and fear.