Monday, April 5, 2010

Catching Up

The past week has been busy so I thought I would catch-up. The above pictures were taken at the Education Conference back on March 11th.
This past Thursday I had a nice dinner out with a new friend - Donna. We met in Washington during the Alzheimer's Summit. She lives locally, but her parents live in Florida. Her dad has Alzheimer's and they just recently placed him in a nursing home. Her sister and brother do not bother with them at all, which seems to be a common theme for this disease. We talked instead of eating, so therefor, I came home hoarse and with a doggy bag. She has much of the same passion as I do in bringing this disease to light and I can see her being a worthy partner in this cause.
Friday, Brandon spent to day at his friend's house helping him fix his boat. Apparently, if Brandon and his other friends help him fix it up and they learn how to work it, they will be able to go out on it. I'm not so quick to let Brandon go out on a boat without any experience with 3-4 of his 16/17 year old friends. When I picked him up at 10:30 pm, he and his friends were burning their undershirts - Courtney made me laugh when she said that all her and her friends do is watch movies when they get together.
Friday night, Courtney and I went to the "Rock Stations of the Cross", for the third year in a row, something I hope to make a tradition. Each and every year I am brought to tears. Our church acts out all the stations and (which I admit I was not familiar with) and "humanizes" Jesus. When he falls for the first time, you see him fall and drop the heavy cross - the church is silent. It's extremely emotional.
Saturday, Courtney and I went to NYC to see Promises, Promises starring Sean Hayes and Kristin Chenowith. Courtney gets GREAT discounts with her school ID and she has been taking full advantage. The show was funny and I never realized all the famous songs that came from it. The weather was beautiful, which was a plus as we walked around New York.
Easter Sunday we were blessed to have an aide with us until 3:30. It allowed me time to help straighten up and eat dinner before Mike got up from his nap. The weather was beautiful again, and I actually got to sit outside for 1/2 hour by myself. Ah.........
Today I am still fighting to get respite for Mike. I am VERY close to just giving up, but I really don't want to. I WANT to go away and fight for what we are entitled to. I was recommeneded to one facility that works with the Alzheimer's Association and they told me that they MUST pre-arrange when a patient stays for respite. Courtney is also having issues re-arranging her finals that week, so I'm getting discouraged. I know my sister and her family read my blog, so to them I will say, "I'm still coming, it's just that at THIS MOMENT, I am very frustrated and not sure HOW I will get there."
As a caregiver I am CONSTANTLY being told that I "need to get away", "need to relax" in order to be a better caregiver. When we see doctors and social workers, they are always asking me what I am doing for myself. How then, when I want to do something for myself, I can't???? Please, does anyone else underdstand the idiocy here?


karen said...

I am trying to get respite too. Have been for 3 weeks. I will be crazy by the time I get it. Lord help us all. :)

Karen said...

Is your mom on Hospice also? What are they telling YOU? They have not denied that Mike's entitled, they just keep telling me that I can't plan ahead. Good luck and let me know what happens.

Anonymous said...

Did you try & ask if they would come to your house & stay with Mike.Are you entitled to that?