Mondays with Mom: Setbacks


We have enjoyed a most unusual pattern with Mom’s dementia over the last six months. In October, I wasn’t sure she was going to make it to December since she had become so lost. She was hardly eating or participating in life. I don’t know how the turn-around started, but it began and continued until about two weeks ago.

It was so fun to have her back for a bit. Dad really enjoyed the reprieve. She was doing so well that she graduated from Hospice! She was eating and able to go to the dining room for lunch and to watch the birds. When my sister, Carla, was here a few weeks ago, Mom was bright-eyed and bushy-tailed and they had a very good visit. It was wonderful to hear them talk and laugh and sing.

The setbacks started again last week. After weeks of being alert and aware, she started being more confused. She began sleeping much of the day and was restless during the night. Last Friday night, she would have climbed out of the bed without the side rails in place. She had pushed all the covers onto the floor and was trying to sit up when I heard her and went in to check on her.

Because of her nighttime agitation, we started a very small dose of a sedative to help her sleep. We’ve been in this vicious cycle before. Although the dose is as little as possible, it still affects her enough to cause more memory issues. She wakes up very confused and feeling sick. She often doesn’t recognize her caregivers, except for Dad. She calls out loudly for her brother, Bean, during the night. It breaks my heart for us to be going through this again.

One of the only consistent things about dementia is that there will be setbacks. Most of the time it feels like one step forward, two steps back. Amazingly, in the last few months, we had one step forward … and another step forward … and even another.

While this has certainly been a lovely reprieve, the loss of her again feels especially cruel. We are going through difficult passages that were hard enough the first time, but to go through them twice feels so much more difficult. The sorrow comes in waves, bigger this time than last. Some days, I wonder if I will capsize. The exhaustion is deep and I wonder how much longer we can continue.

On the other hand, we made it though it before, so I know we can again. We have fabulous caregivers and Dad continues to be in great health. There’s a hymn I’m holding on to this week called “God Leads Us Along.” Here’s a beautiful recording. I hope it will encourage you as it’s encouraging me.

In shady, green pastures, so rich and so sweet,
God leads His dear children along;
Where the water’s cool flow bathes the weary one’s feet,
God leads His dear children along.

Some through the waters, some through the flood,
Some through the fire, but all through the blood;
Some through great sorrow, but God gives a song,
In the night season and all the day long.

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