Caring for Maggie is generally more work than one person can handle alone. There are moments it really takes two, but generally, it is about 1.5. That puts tremendous limitations on us and particularly on me.
We have a nurse in the house two shifts a day but I am always close by. If I do leave the house, it is between scheduled treatments and generally only for an hour or so. If I have to be somewhere for an extended period, I plan it when my husband is home to do the backup work for the nurse. It was easier before the boys moved away to college, because they could help the nurse if the need arose, but now they are gone and we have to make do.
Once in a great while we do actually go out together and leave the nurse alone with Maggie. We never leave town and we always have the car so we can be home pretty quickly if something comes up. We leave the phone number of our neighbor, another nurse, and hope for the best. I know there are those reading this saying, “take time for yourselves” and all that. However, unless you are living here, you have no idea what we are dealing with. This works for us. Not perfectly, but it works. The level of care needed places limitations on us, but it also comes with rewards.
As a result of these limitations, we have a daughter who is extremely spoiled. On the rare occasion that we do go out, she lets us know that she does not approve. And if the nurses change shift and we are not home, watch out! Saturday night was one of those nights and I had to deal with Maggie’s teenage attitude Sunday morning.
We were invited to a dinner/birthday party for Peter, an old friend of Steve’s. We haven’t seen these folks in several years because they moved far away. The party was in the home of another of Peter’s friends. It was in Marin County, across the Golden Gate Bridge at least 40 minutes away. That meant we could not get home quickly in an emergency. Steve’s brother and his family were visiting for the weekend and they could step in to help if need be. Therefore, we went and had a nice time.
The afternoon nurse worked from 3PM to 11Pm. The party started at 4:30, but that was a little early for us. We helped get Maggie situated for the evening and left around 5, arriving at 5:45 or so. We stayed until after 11 and arrived back home just before midnight. Maggie was asleep and the night nurse was on duty. She arrived at 11 and stays until 7AM. I went to bed because I have the next shift.
We did not get much sleep that night because the raccoons returned about 2:45AM. I heard the dog and knew immediately something was in the basement. I woke Steve and he and his brother worked for 45 minutes to get three raccoons out of the basement. Steve armed himself with a ski pole and a stick while his brother chose a broom and a mop from the weapon cache. I got a camera, but that wasn’t met with as much enthusiasm as I hoped. Maggie slept through the whole thing, but I kept checking in because the noise was incredible. We returned to bed at 3:30, but the excitement prevented sleep. I still had to get up to let the nurse go home.
At 7AM I was up and getting the rest of the night’s report from the nurse. Maggie was glaring at me. The nurse said Maggie had been awake for a while and had refused to smile. This is unusual for Maggie who smiles almost all the time. I told the nurse Maggie was mad at me. Maggie brought her hand up to her mouth, her sign for ”yes.” I said, “She’s mad because a new nurse came and I still wasn’t home.” Maggie signed yes again and her lower lip began to quiver. I asked her if I came back, and she signed yes, but was really fighting tears. I said, “Don’t I always come back” She gave a slow, sort of tentative sign for yes. I said, “SO what’s the problem?” Maggie tried to keep the pout, but her eyes were sparkling. She then gave up and grinned from ear to ear. The nurse was amazed. I was not. Maggie has been doing this for a long time.
She is spoiled rotten. She expects us to stay within those limited confines that her care mandates. She misses us, and particularly me, when we are gone. She does love her mother, and that is reward enough.