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Festival of Lights



I haven't blogged in a while. Most of my updates have been in the form of a post because they deal with a specific issue that I would like feedback on.


I am still awaiting Bruce's input on the Baclofen Pump. In the meantime all his Botox has worn off. The new Insurance will not pay for Botox. Bruce no longer goes to PT and OT. I am saving that money if needed for the Baclofen Pump therapy, if he chooses to go that way. Funny, his Lifeguard noticed the bruise on his arm from the poor IV stick and when she questioned him, he gave her an entire explanation of the trial and the pump with absolutely no input from me. I was so proud of him and at least know that he understands this procedure completely. Thanksgiving was so so. He was fully involved in the prep but on Thanksgiving Day could have cared less. I am back to work and dealing with the subtle changes that are occurring. And Christmas was put on my back burner.


New Haven does a wonderful Festival of Lights at a park right on LI Sound every year. You drive through it, minor admission fee that all goes to Goodwill. The displays are all sponsored by local businesses. It is a wonder! I took Bruce last year and he loved it.


He is tired by 4 pm and I have spoken about how he refuses to work with his caregivers when I work the evenings. He wants dinner and bed. Well today I told him were were going to the Festival of Lights at 4:15 pm. He could not wait. North Haven, our town, did our town green tree lighting at 4:45 pm, which we went to, then over to the Festival of Lights, as wonderful as it was last year and then spent an hour just driving around the neighborhood looking at all the displays on our neighbors' homes. Came home, dinner and then bed.


I always worked Christmas Eve and Day and every year for the past 15, Bruce would pick me up at work on Christmas Eve and we would drive around looking at the lights, then home, dinner, tree lit, holiday music and early bed, since I had to get up at 5 am. I am just trying to remind him of his favorite holiday season of the year.


We saw a lot of people still putting up their decorations-men on ladders at dusk with no one watching them kind of scares me, and we had a few laughs about that. I said I knew it was early and we could certainly go for more drives as the season progresses. Also Bruce lost his Mother on Christmas Eve and the week before his previous relationship of 11 years came to a bust, so he has mixed feelings.


I am willing to decorate and put a tree up, but as I said to him, it is a lot of work for me if he doesn't care. I explained that it was OK if he couldn't share in the holiday spirit but I did need to know if that was the case. House parties are out as he can no longer negotiate steps, but our true and precious memories are just here at home with family, friends or neighbors and that we can still do.


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Bruce is like William. For the caregivers he just wants to sleep or watch TV. Now, if I am around we are running around for hours. He will go and go and go. I just do not understand why he has no energy with the caretakers. They get the easy shift. We did go to the Christmas concert at church tonight. William kept calling me from 2PM on...he was so excited about the concert. i got home at 6:15. Just made it to the concert. William had to use the restroom a little before it ended. I said that we should just head out before the crowd since we were all ready in the lobby. Then i drove by a subway and picked up dinner. I was starved.






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I wish Larry would be more like Bruce in that he enjoys looking at lights and going out. He will go if I ask but is not really interested in anything. I'm happy he wants to go to this party Saturday but I hear we are getting rain changing to snow. It is also very cold here now. One of our favorite things use to be getting Chinese takeout but we had not done that since the stroke. He agreed since he knew I was hungry for it but he really didn't enjoy the food. He has become so picky! Anyway, I enjoyed it and I think I have a right to do/have things I like as well.


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For his spasticity has his OT,PT or doctor told you that exercising spastic muscles is probably the best way to actually stop the spasticity? If you want research articles email me and I will send them to you. Sometimes we have to take on the task of educating our medical staff.

Dean :bouncing_off_wall:

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