The last four days have been busy, tiring, and frustrating. Our caregiver A had to take a few days off, leaving me to be the only caregiver for the Big He. The Little He is here and there is help for household things but the hands on care of the Big He is done by me.
Many, many ALS caregivers go it alone and God Bless them because it can be overwhelming at times to be THE person responsible for careing for a loved one. Especially when things don’t run smoothly. For example, the Big He can no longer stand or walk on his own. We use a ceiling mounted lift to get him from the bed to the bathroom. The lift went out just before caregiver A was to be gone for two and half days. So moving him would now need to be with a portable hoyer lift. We have one as a backup which I am so glad we had. The first day alone, the battery went dead just as I had the Big He in mid lift off the bed. In my head I was thinking, holy crap..WTH do I do now. Out loud I reminded The Big He how much he loved me. I was able to get him lowered, charge the battery just enough to accomplish our needs and get him settled back in bed. Now, just so you know, to get him out of bed I had to pull all pillows off the bed, pull off foot board, position the bed so I could roll him side to side to get the sling under him, disconnect his feeding tube, change him over to a portable ventilator, disconnect the suction line and get it moved to the bathroom in case we needed it, get the bathroom prepared, line the Hoyer up and then hook him up and start the transfer. When things are done, the whole routine is done again but backwards. Start to finish, it took almost an hour from the time the first pillow came off the bed to the last pillow situated for his comfort. In between there were little stressors like the battery issue, getting his hose hung up and needing to go grab the cough assist. He blew me a kiss once he was settled back in bed and in a moment my world was calm and all was good.
It takes just a moment for something to jerk us back to what is important. It takes just a moment for us to remember why we do what we do.
Yesterday the Big He asked me to push the twin bed I now sleep in next to his hospital bed. It’s not a simple thing mainly because we need access to both sides of his hospital bed but I did it anyway. We went to sleep last night together in our pretend king size bed. All day I have been moving the bed apart and back together as I care for him. This evening he kept pointing to his hand for me to hold. So I pulled my pillow close to his and held his hand. In a moment, the stress melted away as we held hands and my heart remembered this feeling. Snuggled close, holding hands and just being together. I am so incredibly blessed to have met the Big He and spend my life with him. I know what we have is truly special…and in this moment I thank God for my life. As hard as this season of it is, I have my husband and I will take every moment I can get.
All my love,