Losing contact?

The last few days Margie has shown very little response when she is awake. Sometimes when I caress her face in a way she has enjoyed for years, now she moves my hand away. These last few days I think she has shown few signs of recognition. Why is she responding to me this way? Am I entering a new chapter in care-giving that will be without the personal interaction we have had?

I printed out the words of several of her favorite songs of yesteryears so I can sing them to her, which she seems to like. For the future will this replace interacting?

Relating

Margie was half alert, seemed partly in another world, eyes half open, but responded to my talking and caresses. She did not nod as I said ‘my beloved’ and her names — nickname and other names — then when I said ‘my beloved wife’ she nodded, yes. I repeated occasionally, and she nodded yes to wife but not names. In the midst she reached up with one hand to touch my face.

Songs she enjoyed!

Browsing Christmas music in iTunes, I found a guitar Quartet playing carols in a playful way. I downloaded several to my iPad and played them for Margie this afternoon. For many of them she tapped the rhythm with her hands, fingers, or nodding her head. I will play them again to help her have a merrier Christmas.

Margie getting adventurous

Two days ago Margie fell or rolled out of her bed, and discovered by staff right away, and they put her back into bed, examining her for bruises or breaks. They found no problems, but every 15 min. for the rest of the day checked her vital signs for any indication of any problem. I got there just minutes after they had put her back in bed. I called her hospice nurse and described what had happened. She checked her later and phoned me to report what she checked, and that Margie seemed fine. Today Margie was awake, and talked! Sortof. When I said loving words, a couple of time she clearly said, ‘uh-huh!’ Responded in other non-verbal ways as she often does.

Kenotic love and a news report

Couple of days ago Margie was in her chair and awake. We interacted with touch, caresses, the talk in her eyes and facial expressions, and she reached to caress my face, and laughed! Yesterday and today asleep (in bed) so slight smiles, eyebrow or finger moves. Just read Cynthia Bourgeault on Mary Magdalene where she writes about kenotic love, which is what I think Margie and I shared. Kenotic is from kenosis, emptied, of Phil 2.7. A journalism grad student interviewed me and others to write a warm account plus info on Alzheimer at http://reportingtexas.com/alzheimers-cases-continue-to-rise-in-the-u-s/ .

A tight grip to hold me

Yesterday Margie spent most of our time gripping my right hand with her right hand very tightly. Her right arm is largely immobile because of a stroke years ago, but today her grip was unusually tight. And she did not want to let me go. She enjoyed my caressing her with my other hand, but kept her right hand grip tight.

When parents use child’s full name…

I told our daughter how Margie nods and smiles when I call her Margie or my wife, but sometimes shakes her head when I call her Margaret Anne. Our daughter reminded me that the hospice nurse had shown me that she still remembers early childhood incidents, then said since most parents use the child’s full name only when chastising, maybe when I say Margaret Anne it reminds her of her reaction to such incidents. Interesting thought. Since that is so common, maybe I will not say her full name. Let’s not have negative distant memories.

Anniversary of Hospice

Margie has been in hospice care for 3 years, and is now beginning her 4th year. The average stay in hospice care in America is 2 months. Many of our friends have talked about how healthy Margie was due to exercise and eating the healthiest foods. There is a container in the kitchen that she used for a covered dish long ago, and her handwriting on the top is, heart healthy. Her hospice nurse and I have talked about her German tenacity being partly responsible for her very slow decline. I can see the decline very slightly some months, more so others. She still recognizes me, and I understand her eyes and touch are expressing her love.

Losing her self?

When I spend time with Margie, I often repeat lines that she has enjoyed. One of these is, my beloved Margaret Anne, that almost always causes her to smile in deep satisfaction, her eyes often warm. Yesterday a couple of times that I said it she shook her head slowly to say, no; no? What does this mean? Is this further loss due to dementia and Alzheimer? Or feeling unhappy with this existence? I will watch for how she reacts in the future. Is this further decline or loss of consciousness or new awareness or identity?

Showing affection a new way

This morning while visiting Margie she did something she has not done in a long while. She reached up with her one good arm and hand to pull my face down touching hers, and she had a look of intentionality or purposefulness in her eyes and face. She held my face next to hers for a few seconds before relaxing her arm and hand. She repeated this 3 or 4 times. I was surprised and very pleased. I felt warmly loved and wanted.
Recently, Pat Robertson made a statement about Alzheimer caregivers that showed he has no clue, and no compassion. However, the report in the New York Times quoted a couple of authorities, one of whom used the word void to express the feeling and experience of a caregiver. That is an excellent description of how I feel and have felt–a large void in my heart and soul and self.