Over the last two and a half months we have been without an evening caregiver. It is exhausting to physically provide all of the care Lauren needs during that shift, while still performing all the other duties that make up my life. Let me give you an example of what I mean. My husband and I were providing all of Lauren's care between 3PM and 8AM. Here is a typical day:
Lauren arrives home at 3PM from her day activities. She needs to be toileted, her orthotics and shoes put on, and then she goes into her stander for an hour. You have to stay in view of her and be attentive to her requests (complaining noises) for TV channel changes, different music, dropped turtle (you'll meet Mr. Turtle sometime on this journey), etc.
Then at 4pm she comes out of her stander and into a recliner where she watches TV or listens to music. She stays there until 6pm. during that time you, again, need to respond to her requests, and spend some time being companionable on and off or she gets lonely. Prepare her lunch for the next day and her dinner for tonight (Lauren doesn't chew - all foods need to be mashed or pureed) and prepare dinner for George and I.
At 6pm Lauren needs to be fed, we eat afterward, and clean up.
It's now about 7:15 and Lauren needs to be toileted and to have a shower. After the shower I do range-of-motion exercises with her and return to the recliner.
Now at about 8:15 we watch some TV together for about a half-hour before its time for Lauren's snack. Back into the wheelchair she goes, has snack, and then needs to be toileted again.
At about 9:15 she's probably watching something like American Idol or Dancing with the Stars and is happy and still full of energy as she goes to bed at 10:30pm. Luckily, she quickly falls asleep.
At 11:30pm Lauren has a seizure and is shaky and unsettled until she finally falls back to sleep about 1am.
At 5am Lauren has another seizure and doesn't fall back to sleep until 7am.
I then have to get her up at 7:30am because she needs to have breakfast so that she can take ten pills of two different medications for seizures.
Now the seizures have wiped her out and she will sleep on and off till around 3 or 4 o'clock, so today's schedule is wiped and we're into whatever Plan B may be for today.
During that seventeen hour period I did eighteen transfers and got 4 hours of sleep. George is here to help when he is home. George is in his seventies and looks great for his age, but he does not have the strength or energy he once had, still works full time, and has back problems. He has often been called on to be the primary caregiver because I was dealing with ever increasing migraines lasting seven to ten days. Now, I, too, have back problems -a chronic herniated disc - from years of lifting and carrying Lauren.
George mentioned last night that we are a "life support system" for a 24-year-old. And, he's right. Our lives are devoted to Lauren and have been for 24 years. We have rarely taken a vacation, especially as Lauren got older and larger. We have lost friends who stopped calling when we could seldom go out. Our extended family stopped participating in providing care as Lauren grew. Our lives revolve around Lauren's needs and Lauren's care. Now that George is in his seventies, we desperately want to do at least some of the things we have set aside for so many years - before he gets any older. But, we cannot do those things unless Lauren's care is stable. We need caregivers who are interested in making a long-term, serious commitment -professionals. That is the type of caregiver required in order to provide a young woman with Lauren's level and complexity of disability with a stable and safe life. I hope with this most recent hire that we will have achieved stability. How long it will last? For all our sakes, please let it be a long time.