I shared at the care givers support group that I was concerned about what I would do when I no longer had the hours from Muir Palliative Care. I felt a little bad about complaining, because I know that others in the group have a much harder burden, and some have to pay for home care without any financial support.

The next day, I got a call from Anne Aronov, the gerontologist who directs the support group. She is always so reassuring. She told me that Miklos is entitled to as much as forty hours a week from the JFCS fund. We currently don’t need that much help, but it is good to know that it will be available when we do. I have added an extra day.

I have the freedom I need to take care of most of my monthly activities and appointments and still have time to meet with friends, go shopping, and find a quiet place to write. It is a blessing, indeed. I am pleased that Miklos is so fond of his care giver. I think he looks forward to her visits because with her, he has a ready audience for his silly humor. I hear them laughing together. I am grateful that he can still be safe on his own for short periods of time.

Sometime in the next year, I will also have 64 hours of care through Muir Palliative Care. If my daughter is willing to work remotely from our house for a few days and stay overnight with her dad, I will able to take my grandchildren on promised trips to Europe and Japan. Even as Miklos declines, I can still have a semblance of normal life.

So many of the others in the support group are virtually prisoners in their homes. It is such an exhausting way to live. As our loved ones decline and in many ways become strangers to us, it is hard not to feel frustrated, and even angry.

One of the women in the group whose husband has died recently said that she is grieving still, but grieving for the man het once was. My experience is that grief for who he once was is ongoing.