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Thursday, April 30, 2015

Subtle Changes April 30, 2015

When is the appropriate time for a referral to hospice services for an Alzheimer's disease person?
When the subtle changes begin to add up to a pattern of decline.

We were blessed this week by the physician's referral and by the Hospice of the Valley's concurrence that my husband is now eligible for their services. Not only was he assessed by their nurse, he was seen by their social worker and Rabbi Susan visited with him and sang with him this week.

"He made eye contact with me, he nodded at the photo on his table, listened to my singing and then comfortably nodded off," the rabbi reported.

It is good for him to receive visitors who walk with him or play ball. Lately he has been rolling the smaller ball across the kitchen table to another resident, who thinks of my spouse as his friend. Both of them are pretty good at catching the rolling ball. Only once in a while does the staff member have to chase the ball and find where it rolled.

The mind is so complicated and this disease is so strange. Ball playing involves many skills, first and foremost, concentration, remembering what you are doing and remaining focused. You can see that he is interested nd capable of performing this task and continues for a long time to play. There is no smile on his face so we cannot be sure, but being engaged seems to make him feel good.

And of course, my husband has always liked to be active and engaged with life. He was never one to sit around doing nothing or even watch a ball game on tv, except for the World Series or the Super Bowl.

Saturday, April 25, 2015

There is Still Shame in an Alzheimer's Disease Diagnosis April 25, 2015

Many of the blogs about caregiving for dementia- diagnosed loved ones have talked about whether to tell or not. Should the care receiver know his or her diagnosis? Will it help or hinder the caregiving relationship?

It is mostly adult children of a parent with dementia who are asking this question. Of course the answer depends on the stage of the dementia, and specifically if the person has Alzheimer's disease, a more specific strain of dementia. Why? Because most dementia patients have long-term memory still available. Most dementia patients lose short term memory but their personalities don't change. The rage and anger responses are quite often limited to persons who are diagnosed with Lewy Body dementia, which often comes with Parkinson's disease, or Alzheimer's disease which messes with the person's ability to separate truth from fiction, today from a long time ago. Alzheimer's disease robs its victims of rational thought processes, so telling them anything requiring logic to understand, doesn't get through the diseased part of the brain!

There is another reason for withholding this information from persons in the Moderate Stage of Alzheimer's disease, other than the fact that they cannot process the information and cannot hold onto the information if indeed they understand it. In many social and economic and regions of our country there is still shame in the diagnosis. For example, one woman was sharing her journey caring for her grandmother. All of a sudden, her voice lowered to a whisper. "You know," she confided, "Grandma became nasty," as she wrinkled her nose.

A man who lives in the same assisted living home as my husband asked me this week, "What is wrong with him?" This man is confined to a wheelchair and my spouse walks. The man speaks and is lucid. He shares,"I talk with him. We have conversations, but I really don't understand what he is saying."

I answered, "He has Alzheimer's disease." The man lowered his voice and said, "Don't worry, I won't tell anyone."

Saturday, April 4, 2015

Happy Holidays April 4, 2015

This Spring once again, we have the holidays of both Passover and Easter on the same weekend. Both the Jews and the Christians are grateful for being rescued by an Almighty power several millennia ago.

We are blessed to live in a country where we are free to worship and to rejoice in our own fashion. The theology may be different, but the celebrations are so very similar. We get together with friends and family and we eat!

We even eat some of the same ceremonial foods-- eggs-- which symbolize for us all the rebirth, the emergence of spring, the hope for the future. We all dedicate ourselves anew by initially depriving ourselves of something of value in order to heighten our awareness of the gifts of freedom we have received.

We invite our relatives and friends to gather together in the spirit of love and fellowship, to honor tradition in ways old and new. We plan what to wear, what to bring. We shop for new clothes, we prepare menus, we clean, we cook and look forward to and thoroughly enjoy the gathering.Right?

And then why,  the next day, do we talk about each other in ways familiar, time-honored and not always very nice."Did you hear how ..?" "Did you notice that..?" 

Familiar? Why? From where does this need come to bond with one person over the perceived faults of another? And then of course we wonder--what are the others saying about us?

Let's try this year to be kind to one another- while we are with them and afterwards too. Let's try to look for the good in each other, to really be aware of our blessings of family and friends, without whom, I, for one, would be so alone and bereft.