Goodbye to Lindy April 25, 2014

We all met Lindy when he accompanied his wife last year to our support group meetings. We knew him as quiet, intelligent, knowledgeable, sweet and unassuming. He lived at home with his devoted wife until he was unable to care for himself and she was no longer physically capable of caring for him. He finally was able to live in a brand-new assisted living facility where his wife joined him every evening for dinner in the well-appointed chef-run dining room.

Finally because the family was not able to support his placement without financial assistnce from the state. His children were not able to assist financially  but also not helpful in getting this accomplished.

We members of the Alzheimer's support groups I lead or belong to in Arizona have many members who live in second marriages which have been happily in existence for two or three decades after one or both spouses retired. Arizona is of course one of  the most popular retirement destinations and many people marry again after their first beloved partners die and most marry partners who have been bereaved themselves or divorced.

The families I have been privileged to meet really appreciate their good fortune in finding second spouses with whom they are compatible and in living comfortably in warm winters without the strains of professional life or child-rearing. They make new friends, pursue hobbies, volunteer their time in many organizations until --booom- one of them begins to change due to incipient dementia, cognitive impairment and Parkinson's disease or Alzheimer's disease is diagnosed. 

Most of the couples I have met merely shift the responsibilites slowly from the affected person to the more cognitively healthy one, although many of them have physical lmitations themselves. They don't often share their burdens with their own children who live in another state and rarely confide in the affected spouse's children. It is only  when the children arrive for a holiday visit that they begin to sense something is amiss. Some children return home and do nothing until the next visit; some offer helpful suggestions, increase the number of visits and participate in the decision-making. Others less so.

The burden and the stress of caregiving for a beloved spouse weighs heavily on the caregiver. Nancy Reagan called it The Long Goodbye.  It is so helpfu to have adult children and grandchildren support the caregiver to make the affected person's life as meaningful and as safe as possible.

The Visiting Wife is Here April 17, 2014

Just as new parents and grandparents tell all who will listen of the ingenious feats of their newest family members, we caregivers of Alzheimer's diseased spouses and parents reduce the tension in our lives and in our support meetings by recounting the antics of our loved ones. For example when my Mom had Alzheimer's disease and was in the middle stage of the disease she no longer could hostess or prepare food for herself or others, but when she greeted vistors she always continued to ask "Can I get you anything?" I tell this story as well as the fact that Mom could play the piano "get music out of that" which is what she would say anytime she saw a piano.Then she would sit at the piano and play parts of classical pieces she recalled until three months before she died.

My husband has been in out of home placement due to his agitation, aggression and violent behavior for three years now. I visit daily and my son visits at least once each week when I am in town and more frequently if I am away. We did not know for a while whether my husband recognizes us still, as his speech is less intelligible all the time and he no longer calls us by name. He hold his arms out for a hug whenever anyone comes to visit him or the other residents who have been at the home with him for a

significant period of time.His speech is usually clear only when he needs something such as food or assistance in the bathroom. This in itself is amazing. He sounds just like his pre-Alzheimer's disease self when he is demanding. Sometimes he asks for a banana or an apple, milk or coffee specifically. Mostly he says "I'm hungry."

With me he directs me to walk, to "get up" if I sit. "Let's get out of here" is still a favorite refrain but when we do leave the premises his wish is to return quickly to the comfort of his familiar surroundings."Let's go back" he will state clearly. Sometimes he is annoyed with the leaves that have fallen on the path or the sidewalk or with the temperature. "It's too hot," he will say or "I'm cold."

He is quite anxious lately and seems to need to walk all the time except whe he naps.

So we were really amazed this week, when Steve entered the unit, saw my husband walking, greeted him and said "Look who I brought with me." My husband turned, saw me, turned back to Steve and said, "The visiting wife is here." So now I have the validation I have been seeking for several months. Inside his head and his heart, sometimes, my husband still knows who I am and that knowledge makes it all worthwhile and lifts my spirits.

Clearing the Fog April 9, 2014

When I get sidetracked it is often difficult to return to routines I find fulfilling and helpful. Thus, when my husband became ill last month, I stopped writing--including this blog-- even though he has since fully recovered and is requiring less of my time visitng and worrying.

When there is a difficult problem I need to solve, I seem to get lost in a fog with only the problem and its subsequent decisions and behaviors taking up all of my energy; the rest of my days seem to go by on automatic pilot even after the crisis has past, usually until someone calls me on my neglect.

It is so helpful to me when a friend phones and says "I've missed you at the gym. Are you all right?"

This time it was a friend from NY who phoned and asked why I had not written a blog entry since March 18th. It is time to awaken to the beauty of the Arizona Spring - April when the cactus bloom and the desert is alive with color!

I attended an Alzheimer's Association Support Group Facilitator's Training session yeaterday about the need for healthy as well as symptomatic folks to volunteer for clinical trials at the Alzheimer's Institutes. The speaker stated it was due to the thousands of volunteers that an antivirus was found to treat HIV-AIDS. We need to find a cure for Alzheimer's disease! It is so difficult to watch the fog around my husband deepen which locks him far from us who love him.

Clearing the fog is sometimes as simple as cleaning our eyeglasses and seeing the world more directly. Sometimes it is confronting an issue that seems too difficult to tackle; facing it head-on, asking for help will often clear my head so I can deal with whatever I have been avoiding.

And now preparing for the holiday will give me the lift I need. Passover and Easter are times of rebirth, revitalization, of reconnectiion with friends and family. It is time in April to remember the six million who perished under the tyranny of Nazism and it is also the time to celebrate life, to appreciate the blessings we have and to purposely enjoy the relationships old and new we have made, to invite others to share in the bounty of the spring fruits and vegetables and to share ideas and companionship.

Happy Passover and Happy Easter.