Monday August 25
25 August 08 - 14:06
While Jim is sleeping - lucky him! - I will take a few minutes to update you.
Jimmy left on Sunday morning. Was it only yesterday? It feels like several days ago. As the time for him to go home approached, I began to get a bit blue & down & began to question if I could really do all this by myself. I must admit I am still asking myself this question.
I believe I have a caregiver, temporary, who will start tomorrow, hopefully. But a caregiver is only here during the day for about 15 to 18 hours a week. The rest of the time I am alone caring for Jim. I know I have friends who will come & help when I call, but I cannot call everytime he needs to turn or be pulled up in the bed or straightened out. These are the things that are so hard for me physically. I am having pretty severe muscle spasms in my back, from using atrophied muscles along my spine that are resisting me. I can hardly get out of bed in the ... (more)
Tuesday August 19
19 August 08 - 09:28
Wanted to let you all know that on Sunday Jim stayed up in his chair for 7 hours! He wheeled himself, using his chin , from his room, to the kitchen, outside to the back porch, and into the front room. It was so normal to have him around as we went about our day. He even went outside with Jimmy to watch the monsoon & feel the winds blowing on him. What a blessing for him & for me, to just have him "around".
On Monday we had some bowel issues & he was not able to get up at all, but today Jimmy & I plan to get him up early & give him a shower. We do this outside for now. Some of you know we have an enclosed outside shower that we have used for several years as long as the temperature is above 55 or so and there is not a strong wind. Jim won't fit inside the shower, but we use the area just outside it where he is semi-private. When Jim is eligible for Long Term Care we will have the bathroom converted to a walk-in shower ... (more)
Friday August 15
15 August 08 - 15:09
Sorry I have not updated sooner, but I thought if I told you what our day is like, you may understand.
Jim does not consistently sleep well. He usually gets me up around 1 to 2 am to turn. Then he really tries to let me get some sleep, but I usually hear him over the monitor & am up by 4:30 or 5.
I turn him , I cook his breakfast, check his sugar, feed him and give him all his morning medications. He is eating pretty good, but continues to have swallowing issues. He will tell you he swallows fine, but he has to turn his head to the right to swallow. I am assuming this is because the surgery was on the right side of his throat above his adam's apple level. This seems pretty high to me. If you consider the doctor had to push or pull everything aside to get to his spinal cord, it is easy to understand why his throat is traumatized. I hope & pray in time this will settle down & he will swallow normally. ... (more)
Sunday August 10
10 August 08 - 19:55
Jim made it home safely on Thursday evening about 5pm. There was a bit of a problem, getting him over the front door threshold, but with all of us pushing & pulling, we got hime inside. He just wanted to wheel around wherever he could & look at things - into his room, out the back door, around the kitchen. He was very complimentary about his room and really thought a good choice was made for the floor. Later, while laying in bed, he said the shelf - this is a a shelf 9 to 10 feet off the floor that has scores of decorative & nostalgic items on it - looked great, and somebody did a real nioce good on cleaning it. As this is something he looks at all the time from his bed, it was especially thoughtful to take down each item, dust & clean and return.
We had used a particular type of sling for the hoyer at the hospital, but the two we have are not the same. You might think it doesn't matter, but it does . ... (more)
Thursday August 7 Home Today
07 August 08 - 12:13
Jim comes home this afternoon. What a day! The room is beautiful - the floor looks great, everything is spic & span, the bed is in place, the mattress is blowing, the hoyer is in place, the ramps are all done, bookshelves & art objects going back together, and it should be finished by the time Jim gets here. Thanks to Stacy Connor & Kyle for building the ramps.
I decided to have a professional transport company bring Jim home. There were issues with Therapy & Jim's safety in an unknown vehicle, so to ease my mind, I decided ,with Jim's approval, to have a company bring him. The van I bought - for a very good price - needs to be outfitted for Jim's particular chair - tie downs, locks, etc. The van is being checked over right now mechanically by Miles friend & when I get it back I will have someone either stay with Jim so I can take the van & chair in to the Handicap company or I will let someone else take in down. ... (more)
Tuesday August 5
05 August 08 - 09:17
Let me tell you what the Lord has done!
If you remember, there was a gentleman, Mr. Widger, who was trying to help me find the things Jim needs, and this would have been free of charge, but after a bit, I did not hear from him again. Then last week I went & chose several articles, including the bed, lift, mattress, tray table etc & was prepared to pay out of pocket for them. Yesterday, this gentleman called out of the blue and said he was still working on Jim's needs. He said he had a Hoyer Lift for sure. The lift I had looked at - which had to be modified - was $300. I went to his home & the lift he has is practically new & in perfect shape. He is still looking for a suction machine that might be in his warehouse. He also put me in touch with the man who donated the lift who also is trying to sell the van he had bought for his wife. As I am driving back home, A.S. ... (more)
Saturday Aug 2 Coming Home
02 August 08 - 09:10
Yesterday, with no forewarning, our insurance company told the hospital they would no longer pay for Jim to be at Rehab. Can you even imagine this? The hospital was shocked & I was furious. It seems the previous Medical Director has had a stroke & the new acting (?) director, in California, said "No more." When I spoke with the Case Manager at the hospital I told her to ask them if they were supposed to put him out on the street. To me this is unconscionable ! What did they expect us to do? I explained to her we could not pay out of pocket for Jim to stay there and our home is not ready for him yet. We were still of the impression we had until the 14th of August, two more weeks. I am not for certain, but it seems the hospital is going to absorb the cost and he will come home Thursday. I am seriously considering contacting the AZ Republic or one of the News Stations about this.
I had already made arrangements to see some equipment ... (more)
URGENT PRAYER NEEDS!
01 August 08 - 16:18
Our insurance has stated that they will no longer pay for medical rehab beyond todays date. I'm meeting with the case manager this afternoon, please pray.
Thank you in advance for your prayers, Marilyn
