Just 5 months ago I was living and working independently in our house in Mechanicsburg, walking with a cane, shopping, eating regular meals, taking care of all of my personal needs, driving, running up and down stairs many times a day, carrying heavy boxes, and working out on the treadmill.
Everything changed drastically after my surgery on 3/3 and my illness has progressed very rapidly since then. The doctors warned me that in some percentage off ALS patients thus happens. Whether it was the anesthesia or the recovery period when I was inactive, it seems to have happened.
Today I need help for everything and can do nothing for myself. My caregivers have to help me in and out of bed and to reposition in bed, dressing and undressing, going to the bathroom, eating, drinking, getting to my feet from a seated position, showering, mouth care, medications, walking, and picking anything up.
For several months Jean and Kim were my caregivers but we quickly realized we needed more help. We connected with Home Instead and had a young lady start 2 mornings to help me get up, shower, and do my laundry and help with other needs, cleaning my bathroom and performing other light housekeeping tasks.
We started our 12 week elimination period for long term care eleven weeks ago, and are getting ready to start our final week of paying out of pocket for my aides. We now have 2 aides Stacie and Catherine, who are here 28 hours during the weekday and 2 hours each weeknight. Hopefully we will have 40 hours of weekday coverage soon in addition to the 2. Hours weekday nights.
The 2 hours at night has been very helpful to Kim so she can get to bed an hour earlier so she can get more sleep and is less stressed. The help during the day frees up Jean to walk Liam, run errands and go to lunch with friends instead of being house bound worrying about me.
It has been very humbling to give up my independence and become totally dependent on others for every aspect of my existEnce! Last week we went to the DMV to turn in my drivers license and we now need to sell my car.
My legs, arms and hands continue to get weaker. We heard this week that my power wheelchair was approved by insurance but without all of the features that were requested. They are contacting MDA and the ALS Association to determine if they will contribute, otherwise we will have to pay several thousand dollars out of pocket. We will get a Hoyer lift this week to get me off the floor when I fall and to help with transfers when I am no longer strong enough to assist.
The power lift chair has helped a lot to get to my feet to use my rollator walker, but I am more wobbly than ever, slowing down and taking smaller steps. I had a bad fall last week when I lost my balance in the dining room and fell backward from a full standing position. My head hit so hard that my glasses cut my nose and then flew 4 feet in the air. We had to call Kelly to come over to help Kim lift me off the floor.
We also heard from Social Security this week that my application for Social Security Disability Insurance was approved with payments starting in October and Medicare kicking in at the same time.
Through it all we remain as upbeat as possible, connecting as often as possible with family and friends, and trying to fill my hours of sitting with emailing, reading, updating my blog, sorting through boxes (with help), and watching Netflix.
I miss you Jim.
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