11-28,2009
0400 Hours
Good morning to everyone,
I promised some days ago that I would try to be more diligent in reporting Dar’s progress. Little did I know that when I made that promise just how hectic things could be around here?
Since Dar’s return home Jamiesue and I have been so busy that we hardly have time to catch a breath. We have had equipment issues, beds that don’t go high enough so I have to build pedestals for the legs, a foley catheter that decides to leak so we have to have the Home Health Nurse come out and place a new one, only to return two days later cuz it appears that Dar was having “bladder spasms”. “That scared the crap out of me”.
Jamie and I have been arranging Dar’s suite to best accommodate all her new equipment. Putting this here and putting that over there, we have probably changed the front room around 16 times before we finally got it close to right. I think Jamiesue probably thinks her dad is just a little “nuts”.
Dar’s lift is in place, ready to be used when needed, in fact we have used it several times already and have found that with a little help from our friend Kerry at Carpets Galore in Oroville it will work even better. Kerry is coming over later this afternoon and he and I are going to take a section of carpet directly around Dar’s bed out and expose the natural wood floors of this house that was built in 1959, I hope the floor is in as good of shape as the two bedrooms. If so maybe just a little polishing and we will be good to go. If not Kerry suggested a section of floating laminate.
The tilt table, generously donated for use by Ryne Spitzer’s mom and dad, raised to a 30-inch height by Phil Atchison is placed and ready for use. The new 4x7 mat table, designed by me to go over the antique coffee table was built by Better Builders Inc and upholstered by Ernie’s Custom Upholstery has become Maverick’s new bed and “crows nest” for watching out the front window was delivered on Thanksgiving Day.
A typical day, if there is such a thing for me begins around 1:00 am when I arise to the first of two alarm clocks. At 1:00 I get up and reposition Dar and check her splints and make sure she is comfortable. At 4:00 am when the other alarm goes off I arise and yet again reposition Dar and check to see that she is ok. Normally 4:00 am is my usual time to get up, although for the last 11 months it seems that it can vary from 2:30 to 4:00. At 5:00 am I give Dar her first bit of nourishment, she is fed 5 times a day at 4-hour intervals. At 6:30 Jamie arrives and it is off to work for me.
Sounds fairly simple, doesn’t it. Boy, were we in for a surprise. All it takes is just one little hick-up; one little unexpected surprise and we are running around like chickens with our heads off. Jamie is responsible for many of the daily things we would normally do without a thought. Teeth brushing, hair combing, getting dressed, using the bathroom, showering and lastly getting Dar in her chair so she too can enjoy the day.
I have to say that my hat goes off to Jamiesue; she has and is the “rock” around this house. She has stepped up and taken the “role” of “caregiver” for step-mom very seriously and quite frankly is amazing.
Thanksgiving Day I have to say my daughter saw a side of her dad that to be honest sort of hit home for me. Jamie, I now know has always believed that her dad could do just about “anything”, well, I have to admit she saw her dad totally loose it and get absolutely frazzeled over something as simple as changing Dar’s britches. Yep you read correctly, changing britches.
I remember Jamie as an infant, changes britches was no big deal, a cakewalk. Well the other day changing Dar was like an elephant in a clothes closet. I could not get a handle on the process to save my life, I new the basics, I knew how it was supposed to work, but for the life of me I could not get it. It was like I had tree stumps for hands, I could not get that silly thing on, or at the least in the right place. I ended up calling Jamie in my frustration. Steadfast to a tee, Jamie got me calmed down, walked me through it, and I still could not get it right. You have to remember, here I am with Dar in a totally uncomfortable position, worried about all kinds of things and I can’t get this silly thing on right. Jamie dropped what she was doing and came over and pulled her dad out of the fire and gave me another lesson in the art of “britches”.
I guess, up till the other day, I never thought my daughter looked at me as “my dad can do anything”, made me stop and think a whole lot.
Back to our story;
Jamie works till I get home about 3:45, Monday through Friday, Nights and weekends belong to me.
The changes we have seen in Dar make all the “hiccups”, all the “monkey wrenches”, all the “opps, I was not expecting that” worth it. Dar is so happy to be home, back in her own house, those two things alone have made a world of difference in her attitude and recovery.
We have been able to find new and different ways to communicate, I am learning her sleeping habits, her awake times, her signals that she uses to communicate with us. It is a never ending, always-different journey. Never routine, never like the day before and always and I do mean always, a joy to be around.
We traveled to the doctors the other day in the new van and Dar had a great time being out. Her doctor ordered up a chest x-ray and a blood draw. We will get the x-ray this next week and Sunday Julie from Home Health will do the blood draw.
Occupational Therapy was out yesterday and worked with Dar for about an hour. Jamie and I learned some new things we can do to help Dar with her “tone’ issues in her arms. Ms. Merlin was very nice and worked with quite conversation to Darlene.
Speech Therapy comes out today just before Kerry from Carpets Galore gets here to remove the carpet. It will be exciting to see what this new therapist has to offer to the game plan.
I may try to work with Dar on the mat table at some point today and try out the new foam wedges that we got from Square Deal Mattress Factory in Chico. I remembered some of the pads and wedges that were used for Dar at Caremeridian and had them duplicated for her to use in her gym.
We did get a bit of great news the other day. I received a letter from the Calif Dept of Human Services that stated that Dar’s Medical benefits were being reinstated. You may remember that she lost those benefits when she came home because “my income and resources” were too high, and because she and I are married, she would not qualify for continuing benefits unless she stayed out of the home. Well you know how that went over in this house.
It was these Medical Benefits (Medical is required) that would have enabled us to apply for In Home Support Services that would have and ‘do” provide additional help in our home based on the needs of the “client”, in fact this program would pay for Jamie to take care of mom, it would help by paying additional assistance at night while and so I can get some rest.
Well, one of the things we are doing and applying for is a wavier that would separate Dar’s income from mine, problem is that this application could take several months to clear and there is no guarantee. In the meantime I got this letter stating that Dar’s benefits, (not payment), were being reinstated until further notice to the contrary from the State or the County. By reason of a class action law suit and Dar’s benefits were taken away Dar is now considered a “beneficiary” of that lawsuit.
What this allows us to do and we have started, is to apply for In Home Support Services” for Dar. This process too can take several weeks but the doctor can backdate it to the date of signature.
This additional help is so important to us. Right now, because of all this “crap” as I call it, Jamiesue and I are the only ones taking care of Dar. We are both tired but realize this is the choice we made for Dar to be back in her home with loved ones and her own things around her.
Even a simple thing like a “companion sitter” during the night for a few hours while I sleep could be covered by this program and such a big help to our family.
Well, now you have a little taste of what our day is like.
God has been so good to us during this ordeal, so many blessings, so many things to be thankful for, so many people helping in whatever way they can, new relationships made, new friendships. As I write I feel as if there is really nothing I have a right to complain about. I have so many blessing to be thankful for and so many good thoughts and miracles to remember.
That said, to every one of you, Darlene and I thank you from the bottom of our hearts for what you have done for her and even myself. We look forward to seeing you at the house, she wants to have visitors, she needs to see and hear her friends, she needs to make that connection with all of you and I guarantee you it will be a blessing to you. You need not fear, you need not be worried, Darlene is so acutely aware of all that goes on around her and can participate in practically everything. She is beautiful, aware, and still Darlene, come see her soon………………she would appreciate it, and love it
As we say on Facebook…………….TTFN,,,,,,,,,,,Ta Ta For Now
We love you all,
Dar/Danny/Jamiesue/Mav
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