I met her in a casual conversation as we waited for hair cuts. Her husband is ninety years old and has dementia. She realizes the day will come when she can no longer take care of him in the home. She even realizes that day actually came a few years ago but she just can't seem to decide on when to make the move. They have already arranged for an apartment in one of the nicer facilities in the city, but she feels overwhelmed by the decision and by the details. Actually she uses the details to justify not doing what she knows should be done. 

Her first detail was the antique furniture in her house. She had no way of knowing what it was worth and did not want it to just be sold to "any and everybody" as she said it. I found her a reputable appraiser who understands antiques. She was pleased, but has not called. These kinds of responses are a clue that she is not ready to face the move.

I would love to write a book called "When." When is the time to make a long term care decision? When are the loved ones needy enough to justify the move without so much guilt? After I completed a speech, a person in the audience asked "when do I make the decision?" I asked her to tell her story. She said, "I have been shaking for two weeks. I stopped shaking while you were speaking, but I know I will start again. I have total care for my mother who has Alzheimer's disease. She is getting progressively worse and the task is getting harder and harder. At what stage is it all right to make a long term care decision?" I answered her by saying, "You make the decision when you have been shaking for two weeks. There is more to the decision than just the condition of your mother. You also must consider what you can stand both emotionally and physically, what impact this is having on your family, what is this doing to your marriage?" All of these issues must enter into the decision and hopefully they will do so without adding to the guilt. This is not some test of love or strength. Care has an impact and the impact is just as important as the condition of the loved one or the stage of the dementia. 

There is no magic point that justifies the action, but I think families should agree together on some parameters. We did that with my Father. We decided to watch my mother very closely and when it became evident it was having a detrimental impact on her health that would be the time. We also decided that when my father could not lift himself up enough to allow her or the nurse to change his diaper, that would be the day. That day came, and we made the decision.

I think the decision should be made ahead of total need. If they can make the move while still mobile enough to mingle and meet new friends, they are much more likely to adjust to the new living arrangement.

To delay the decision is a gamble I don't think we should make. My wife's aunt is a good example of this gamble. She did not want to give up living in her own home, and was adamantly against living in a nursing home. We suggested to the family that they move her to an assisted living center while she was still active. They could not face such an idea and she fell and broke her hip. They have spent all the money they can on home nursing and now must face a decision. The problem is that now she is past the point of being accepted in any kind of care facility except acute care. Assisted living will not consider her at all.

I explained this to my hair cut friend. The gamble she is taking is that her husband will get beyond the retirement apartment they have arranged for and will be forced into more intensive care. She will not be able to take care of him in the apartment and they will face the cost of two arrangements and separate living. If they can make the move now, she may well be able to care for him in the apartment and do so longer. Facilities are far more likely to allow someone to continue care after they have moved in than they are willing to move someone in already needing such care. 

There is no real answer to the "When" question, but one thing is certain, delaying the decision does not make it any easier and can do much harm.