Relationships and personality changes

Sunday will be our 62nd anniversary that was 50 years of wonderful life together before the strokes or Vascular Dementia began having profound effects for the last dozen years.

I am part of a group of Methodist men who meet for breakfast once a week and we talked today about dementia. Several of them told of people they knew – family members or friends – whose  personalities changed negatively due to dementia. As I listened, I was thinking change in personality is such a common part of dementia and Alzheimer. But Margaret’s personality has not changed through these dozen years; does this reflect our open, frank, and loving relationship? I think when either of us had negative feelings about the other we frankly shared them and worked on them. I was with her when she confronted people and told them in no uncertain terms (as she would often describe it) how the cow ate the cabbage! I was told of her being harsh with staff and fellow residents at the assisted living where she could talk and walk. I don’t remember her telling me how the cow ate the cabbage, but I’ll bet she did.

Earlier blog postings describe her  recognizing me until recently through facial expressions, hands, arms that suggest that until the last months she had a positive relationship with me, and not the negative changes so many report. Thanks Sophia God!


July 5, 2013 at 5:21 pm Leave a comment

The Soul in the Machine

The Soul in the Machine was a popular book decades ago. Those words come back to me the last few weeks as I look at Margie. Just a few months ago she was alert and responding to what I said and did. Now is the time I have dreaded for years: little recognition and response.

As I look at her and say and do things that used to cause responses from her, that book title keeps coming to mind. Not that Margie is in any sense a machine but rather her heart and soul apparently disappearing within. And yet as I look at her, maybe she is becoming a machine of minimal actions to keep barely alive – breathing and heart at work.

June 29, 2013 at 12:17 pm 1 comment

Going, going

The last few months Margie has not recognized me at first. I can say our family password that used to cause instant recognition even when Margie was asleep, but now she makes no response. I can sit beside her whether she’s lying down or in her wheelchair and repeat my words of affection and caress her face, arms, hair, but there is no response sometimes for 15 or 20 minutes. Finally, she may look at me and have a slight smile or nod slowly, and her eyes brighten.

I have long dreaded this stage of her dementia, and this increases my loneliness. Friends are wonderful but Margie and I had a profound relationship that now is going.

Meanwhile, I have gone to visit her at mealtime and been invited to feed her — sometimes in the privacy of her room, so she does not eat as her doctor ordered. Her hospice nurse was right; she is at a baby stage so a spoon touching her mouth causes her to eat. So, the more I can feed her the better for her.

June 17, 2013 at 4:13 pm Leave a comment

Message in caressing my face twice

Today when I visited Margie in her nursing home room just before lunch I wanted to talk to her about refusing food, following her doctor’s suggestion. After caressing and expressing my love for her, I asked her to remember my mother when she was in a nursing home had refused food by closing her mouth.

I explained that if she did as my mother had done this horrible illness would end sooner. After a moment she reached up slowly with her good hand and caressed my face. I talked some more about closing her mouth to help end this sickness, and again she reached up and caressed my face.

I was surprised since this was her first time to reach out to touch my face in many months. I read her actions as saying, yes I want this to end.

Five hours later at supper I said to her to remember my mother and she refused the next bites that the aide offered.

I felt that Margie was expressing her own strong feelings, using what is left of her brain after so many strokes.

May 31, 2013 at 2:50 am Leave a comment

What is “life-support”?

Frustration: Margie delegated me in her health care power of attorney to make decisions about her life. I asked a lawyer-friend to explain the difference between Margie depending on a life-support machine that she authorized me to have unplugged to end her life, and that she is “plugged in” to a life support machine – her meals. Everyone agrees that if she stops eating, in a few weeks this sad life will end with no pain. I asked my friend if her meals are a life support machine, and he punted. That we could unplug a machine but cannot stop feeding her is a tribute to the wisdom of conservative religion and our legislature!

I love Margie, respect her, and appreciate her as strongly as ever. She barely recognizes me, and communicates through her eyes and touch, and responds to my touch. Remembering the rich tapestry of our relationship for more than half a century is both painful and joyous. She is a ghost of those memories!

When as a pastor I was asked to help families decide about unplugging life support, they loved and respected their family member connected to life support.

So, I am frustrated in my deepest heart.

May 22, 2013 at 12:32 pm Leave a comment

Bleak outlook ahead

I have so many memories of Margaret and our relationship. I remember her inscription in a book she gave me, “To my John who hears God’s trombones before they are played.”

I have so many, many memories of us in so many different settings – at home, in our churches, on vacations in the Rockies camping – but to think that her side of these shared memories have been destroyed by over a dozen strokes! I have thought a few times of seeing if I can get a photo of one of her many brain scans and frame it. But what would I think when I looked at it? I suspect  incredibly sad.

My hopes for bringing her nursing home care to a quiet ending have been destroyed. The state of Texas intervened through adult protective services to say we cannot do what we plan. One reaction is that this is clearly a violation of the first amendment’s establishment clause: the Catholic and fundamentalist belief that there must be no interference in “normal” dying is state law – establishment of that theology that I know is wrong and evil. If she could talk and remember as she did a few years ago to express her feelings we would bring this to a quiet end. I am deeply sad that this existence must continue probably for a long time, since Margaret’s health apart from her brain is robust. She ate well and exercised and suffers as a result!

May 9, 2013 at 2:38 pm Leave a comment

The care she is receiving

At every meal an aide brings a plate like those of other residents, and the aide offers to feed her. The director of nursing said that sometimes she takes a few bites sometimes many bytes and sometimes closes her lips to say no food, while other times after a few bites she closes her mouth to indicate no more. With so much of her memory gone, I wonder if she remembers how she and I watched my mother do the same thing after she was placed in a nursing facility and for most meals clamped her mouth shut to prevent being fed.

Some days she has been alert and responsive and we have communicated, while other times she has remained asleep. All of this is about how it’s been for the last several months.

The director of nursing assured me that she is placed in her wheelchair daily and wheeled out among other patients even though she may not interact with them. In only one visit did I find her outside her room in her wheelchair.

I feel that how things are going now is better for her than it was in earlier care situations where food was, I think, being forced. She was released by Odyssey hospice because she gained weight and showed too little decline, which may be the result of what I consider forced feeding. With a person so deep in dementia it is so hard to know what is happening. I wish we could have just a little conversation instead of reading her feelings in her eyes and expression and hands.

May 4, 2013 at 2:39 am Leave a comment

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