This past month emotions have been like a roller coaster. It was very emotional making the decision to put Rick on the waiting list for assisted living. I cried much of the day and then off and on through out the week. After visiting Kerner Ridge and seeing what a nice facility it was and that it was so close to our home and church, I felt somewhat better. Still, the idea of putting Rick in a facility was not in my plan for a good while yet. I thought "nursing home" was when he was completely bedridden and total care and, most of all, didn't know me. There are times when he seems to be very lucid and understands what is going on. He still remembers people and their names much of the time. He definitely knows all of our family. Then most of the people at the church he remembers, older friends more so than newer ones. But then there are some new friends that he remembers - not their names, but their faces and that he likes them.
One such person is Stanley Glover, who has been coming to our church now for maybe a year. This man has retired from being a pastor with the Church of God of Prophecy. When we first shared that we used to be in the COGOP we told him that Rick had spoken at the General Assembly shortly after coming back from Viet Nam. Brother Glover said he remembered that. Well, Rick bonded with him right then and every time he sees Brother Glover he says, "There's my man." and calls him "Pastor."
Rick has gone through some changes this month. He got very agitated and couldn't control his shaking. One day at the center, he got so angry. He didn't want to stay there any longer and went to the doors trying to get out. Of course they are all locked. He even went so far as to take a chair out to the courtyard and put it up the the wall to try to climb out. Sabrina, the nurse, said she went to get his Xanax and brought it to him. When she offered it to him he pulled way back, refusing to take it. She told me about the following dialog.
Sabrina: Rick, you're a PA aren't you? Rick: Yes Sabrina: Then you know what Xanax is, don't you? Rick: Yes Sabrina: Then take it! Rick: Ok.
So I made an appointment with Jean Small, RN, director of the Williams Adult Day Center where Rick attends. She has worked with Alzheimer’s patients for many years and has seen what works and what doesn’t. She told us, Tamara and I, that with some patients, being on Aricept and Namenda too long can cause agitation. Well, Rick has been on Aricept for 3 years and Namenda for 1.5 years. I immediately called Dr. Pearce to ask him about it. He gave us his permission to taper Rick off both of these medicines. He gave Rick a prescription for Risperdal, an antipsychotic, to help with mood swings.
It took a couple of weeks to taper him off the Alzheimer’s drugs, but when off of them the severe agitation stopped. He still got anxious and we had to use Xanax 3-4 times a day. It did help but usually took 30 min to take affect. He still had times every day, thinking that he had done something wrong and was going to be “locked up” for it. He tried to apologize for things he had done, etc. He just didn’t seem happy.
I decided to try the Risperdal this week. Started him on it Tuesday morning. I have seen a marked difference in him. He has not needed the Xanax now at all. Of course it has only been 4 days. But Sabrina, RN at the center said he hasn’t needed any there either. She has not seen any of the legs jumping up and down or his hand shaking so badly that he can’t eat. So I think it is working. We will continue to watch his reactions.
I have applied to the VA for help with respite care. I have to be gone in September for my job and then in November for a cruise. I have just heard that he has been accepted but they will only do one of the times because they can only provide care once in 90 days. Plus we will have a copay of $97/day. That is pretty high. So the social worker that I have been working with looked up some of the assisted living facilities closer to home for us to check out. He said sometimes they are less expensive that the VA copay. So I guess we will start looking for that. I was not too happy about having to take him all the way to Salisbury, an hour away, anyway.
We are trying to get VA assistance for the cost of assisted living. Our income is too high and I’m not sure we will qualify for anything. But if we could get Rick’s Early Onset Alzheimer’s Disease related to his time in Viet Nam, we might be able to get some help. I have asked Dr. Pearce to see if he can find some data that might help with that. We will see what he comes up with.
I know that my God has provided for our needs so far, so I expect Him to continue to do just that. When it is time to get Rick into assisted living, I’m sure the finances will be there.
We have a great big wonderful God!
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