BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
Well, it's rant 'n' rave time again. Have had a series of wake-up calls, and have finally realized that denial is not a good coping mechanism for long. Especially with ALS.
My "I can manage" mentality came to a screeching halt about 3 weeks ago, my last trip to the ER, when my LightWriter (which is almost kaput anyway ... I'm waiting on a grant for a new one) died. They kept me for 2 days, and ... despite written doctor's orders that I be tube fed every 4 hours, and despite the six pack of Ensure delivered to my bedside table ... I was not fed during the entire stay.
My vain attempts to convince the nurses that I needed to communicate (using one hand as a "pad" and the other hand "writing") and despite my frantic pointing at the Ensure when someone wandered in to take vitals or mop the floor, I could not get across to anyone my situation. I buzzed the nurses 30 times in one half-hour period, and they responded twice ... each time asking if I needed help. Each time I responded "Gaaaa" which is the limit of my vocabulary, and they clicked off. By the time my caregiver rescued me Saturday afternoon, EL and low-blood sugar had set in, and I was sobbing uncontrollably. I'll cut it short there.
Second wake-up call: I finally realized that not only cannot I manage myself, I am in no condition to manage my husband's care. Both his Parkinson's and his dementia are progressing, we cannot communicate, except laboriously through the broken LightWriter, which requires me to write only enough for the little screen, hand it to him, let him read it and decipher it and hand it back. I have trouble lifting the damn thing (1.5 pounds) as is, and this wears me out. Otherwise, it is getting him into a wheelchair and into the den for the DynaVox, which is equally hard for him to understand.
Third wake-up call: The situation with my first caregiver (Nurse Ratchet in her meaner moods) was intolerable, and I felt it could descend into abuse. Since I'm 5'1" and she is 5'10" and about 250 lbs, it would prove to be an unequal struggle if it ever came to that. I had planned to renovate the house for handicapped and have her move in, but decided it was too dicey. The last few days were so ugly, I thank God we never got that far along and she is gone. It was sooooooooooo scary letting her go, as she knew the household inside out, but sometimes you just have to take that leap of faith in your Higher Power.
I can't dress myself, bathe myself, open the refrigerator door half the time (that suction/vacuum thing), unlatch the microwave door, or lift my arms, and my days of feeding myself are almost at an end. My hands are like claws ... can't even put lotion on my face. Managing the three new p/t caregivers, teaching them all the routines for both of us via LightWriter is totally exhausting, basically having to supervise and interact with them constantly, is wearing me out. I was measured for my power chair this week, and hope to have the paperwork complete before MDA cuts off funding. I tried to read a favorite book this week, and couldn't lift a hard-cover book!
Hence: we're selling the house and moving to an assisted living/dementia care/ nursing facility. Stu of Guardian Angels is helping locate a facility (Bless him ! But don't quote me. :lol
I hated the thought of leaving my books and other things behind, but checked out Kindels. (sp?) 10 ounces, and I can download a lot of my favorites for free, many others for 99 cents. I'll be getting an Ipod TEXT with a voice program so I can carry it with me everywhere ... small enuf for a hospital bed. I'm ready for a big bonfire to leave it all behind and get myself and my husband well taken care of at last. I have carried this sucker as far as I can alone.
My husband cries everytime I mention moving to a facility, and that just kills me, but you can't argue with ALS. It is what it is.
And what a relief! There will be lots of tears (my neuro has upped the dose of my EL meds, and just in time), but I think I'm in touch with the reality of ALS now. You just can't go it alone ... for long!
This is long enough, it's off my chest. Thanks anyone who made it through this!
My "I can manage" mentality came to a screeching halt about 3 weeks ago, my last trip to the ER, when my LightWriter (which is almost kaput anyway ... I'm waiting on a grant for a new one) died. They kept me for 2 days, and ... despite written doctor's orders that I be tube fed every 4 hours, and despite the six pack of Ensure delivered to my bedside table ... I was not fed during the entire stay.
My vain attempts to convince the nurses that I needed to communicate (using one hand as a "pad" and the other hand "writing") and despite my frantic pointing at the Ensure when someone wandered in to take vitals or mop the floor, I could not get across to anyone my situation. I buzzed the nurses 30 times in one half-hour period, and they responded twice ... each time asking if I needed help. Each time I responded "Gaaaa" which is the limit of my vocabulary, and they clicked off. By the time my caregiver rescued me Saturday afternoon, EL and low-blood sugar had set in, and I was sobbing uncontrollably. I'll cut it short there.
Second wake-up call: I finally realized that not only cannot I manage myself, I am in no condition to manage my husband's care. Both his Parkinson's and his dementia are progressing, we cannot communicate, except laboriously through the broken LightWriter, which requires me to write only enough for the little screen, hand it to him, let him read it and decipher it and hand it back. I have trouble lifting the damn thing (1.5 pounds) as is, and this wears me out. Otherwise, it is getting him into a wheelchair and into the den for the DynaVox, which is equally hard for him to understand.
Third wake-up call: The situation with my first caregiver (Nurse Ratchet in her meaner moods) was intolerable, and I felt it could descend into abuse. Since I'm 5'1" and she is 5'10" and about 250 lbs, it would prove to be an unequal struggle if it ever came to that. I had planned to renovate the house for handicapped and have her move in, but decided it was too dicey. The last few days were so ugly, I thank God we never got that far along and she is gone. It was sooooooooooo scary letting her go, as she knew the household inside out, but sometimes you just have to take that leap of faith in your Higher Power.
I can't dress myself, bathe myself, open the refrigerator door half the time (that suction/vacuum thing), unlatch the microwave door, or lift my arms, and my days of feeding myself are almost at an end. My hands are like claws ... can't even put lotion on my face. Managing the three new p/t caregivers, teaching them all the routines for both of us via LightWriter is totally exhausting, basically having to supervise and interact with them constantly, is wearing me out. I was measured for my power chair this week, and hope to have the paperwork complete before MDA cuts off funding. I tried to read a favorite book this week, and couldn't lift a hard-cover book!
Hence: we're selling the house and moving to an assisted living/dementia care/ nursing facility. Stu of Guardian Angels is helping locate a facility (Bless him ! But don't quote me. :lol

My husband cries everytime I mention moving to a facility, and that just kills me, but you can't argue with ALS. It is what it is.
And what a relief! There will be lots of tears (my neuro has upped the dose of my EL meds, and just in time), but I think I'm in touch with the reality of ALS now. You just can't go it alone ... for long!
This is long enough, it's off my chest. Thanks anyone who made it through this!