What shall I do months after her death?

In the months since my beloved Margie died, I reflect on our love – the intertwining of her love for me and mine for her – as I explore dating ladies. I remember her saying to me several times, “If anything happens to me, I want you to marry again.”

As I think about my loss of Margie, I am grateful for the insights in Bass’s Ambiguous Loss and her insights into the unique grieving of caregivers for Dementia and Alzheimer afflicted loved ones.

In thinking of her love and our love, I found this in the Hebrew Scriptures Canticles or Song of Songs chapter 8:

Set me as a seal upon your heart,

   as a seal upon your arm;

for love is strong as death,

   passion fierce as the grave.

Its flashes are flashes of fire,

   a raging flame.

Many waters cannot quench love,

   neither can floods drown it.

If one offered for love

all the wealth of one’s house,

it would be utterly scorned.

As a popular song of our youth said, “Love is a many splendored thing.”

Margie was a wonderful soul mate and colleague, and do I honor her memory and presence by finding another lover who may become soul mate and colleague? Is this being faithful and loving? I must listen to both my mind and even more to my heart! What is the “far better way” for me of 1 Corinthians 13?

February 20, 2014 at 3:21 pm Leave a comment

The origin of our family password

Our son and I were reminiscing about Margie, and I shared with him how useful our family password was for her recognizing me. That word was ‘peedypie’, and I told him that I thought we had started using it because he had used it when he was learning to talk, then we used it as a family recognition word. He and I talked about that for a while when he said, “I think I said that when I was trying to say ‘please’ or maybe ‘pretty please’ but couldn’t quite say it, and it came out ‘peedypie’.”

Later as I remembered that conversation I remembered that Margie wanted our son to say please every time he asked for something. One of the children’s books she bought was The Magic Word, which, of course, was please.

Is the mystery solved? We used ‘peedypie’ for many decades as our family greeting, and it caused recognition during dementia.

December 8, 2013 at 12:53 am Leave a comment

Ambiguous Loss book helps

I want to tell all of a book that is proving very helpful in working through my grief at Margie’s death. I think it is essential reading for all who are caregivers of loved ones with dementia or Alzheimer’s. The book is by a family therapist, Pauline Boss, and is Ambiguous Loss. Her research on ambiguous loss started with the wives of airmen who were MIAs in the Vietnam war. Normally at the death of a loved one those who are close work through their grief in response to the fact that death occurred and the rituals of death. Boss found that these women had very different grieving, because of their uncertainty about their husbands; their children asked questions about their father among other constantly recurring reminders of the husband who was missing.

Boss then found that caregivers of dementia and Alzheimer loved ones face the same problems. While we know that death will come, we have ambiguous grief during the endless months of caregiving. She has many suggestions for us caregivers that are now helping me.

I recommend that caregivers read this very readable book.

September 17, 2013 at 2:15 pm Leave a comment

About death with dignity

If you have read the last few months of this blog, you are aware that I thought about “death with dignity” for the end of Margie’s life on earth. You also read of actions that Margie took that indicated her complete agreement with this decision — a decision she made and told me decades ago.

When Margie first went to Arden courts, she repeatedly said to me “I want to die” or “I want to commit suicide.” My reaction at that time was to distract her, to try to get her thinking different thoughts. I wanted her to have as positive an experience as possible in activities, given her increasingly limited capabilities due to her vascular dementia.

Consider the issues of death with dignity. The Oregon law for death with dignity, which was the first, requires three things: the person requesting death with dignity must be free of clinical depression, the person must clearly state to two physicians the desire to die, and be able to participate, such as by taking a capsule knowing what the person is doing or by refusing food. Those three elements are usually considered critical for any discussion of death with dignity by physicians, theologians, or philosophers. Excellent books for thinking about these issues are Rethinking Life and Death by Peter Singer, a philosopher, or Bishop John Shelby Spong’s Epilogue in his Eternal Life.

I struggled with this decision alone, while most major decisions in our marriage were made by both Margie and me together. As Margie’s condition deteriorated, she was less and less conscious or aware; or perhaps more accurately the breadth of her awareness narrowed. If you have read the latter part of this blog you have seen evidence of that narrowing of her awareness, until it consisted of an arched eyebrow or a smile of recognition. I would have preferred death with dignity earlier when she could clearly state her desire to die and participate in the actions, but I so enjoyed the diminishing signs of recognition and love. I yearned for any hint from my beloved. Did I delay too long?

This is life’s most difficult decision and it is a decision that more of us are going to face, because of terminal illnesses of the brain and of their very high cost emotionally and fiscally.

August 24, 2013 at 12:41 pm Leave a comment

Margie was right

Years ago one of our favorite breakfasts was Kirby Lane gingerbread pancake mix  using an iron that makes waffles in the shape of Texas with a lone star in the middle! This morning was my first time to make them in over a year, but Texas never tasted so good.

As I mixed ingredients, I remembered what I said at her internment several days ago. In the middle of the service we had a “naming” of sharing short incidents from Margaret’s life. I started by saying that we had a collegial, loving relationship; for example she was the cook — great and creative cook. Often I helped her. As she prepared things she would glance at me and say, “You’ll never be a cook; you’re a chemist, measuring everything.” And I did: 2/3 cup of milk she would have guessed in a full cup measure but I had to find the 1/3-cup and fill it twice; so Margie was right! The recipe makes enough that I froze some to pop in the toaster — good!

Mixing ingredients my neuro-muscular IBM caused me to drop things.


August 15, 2013 at 6:04 pm Leave a comment

An End and a Beginning

Just before 10:00 this morning my beloved Margaret died and, as I say in the obituary to be published in a few days, has gone to the Great Backup in the Sky to retrieve the pleasant memories of the last fifty years lost to over a dozen strokes. She was soul mate, lover, and colleague for a rich, shared life with our son and daughter. Her going was at home – quiet and peaceful with the excellent help of Interim Hospice’s Marta and Jenny. Marta asked if I’d help wash Margie as she pressed a wash cloth into my hand, so I washed the part of Margie that gave us such pleasure, while Marta washed arms and legs. The experience was profoundly meaningful and holy.

Her interment will be at Remembrance Gardens, that she selected years ago, and later a memorial service at University Methodist with choir and celebrations of her Life.

July 23, 2013 at 10:00 pm 1 comment

Coming home

Yesterday we moved Margaret from her nursing facility for the last three months, and brought her home. Since our daughter Anne helped me move her the last two times, I asked our son Paul to help. He and I packed her gear. The facility moved her in a van with wheelchair clamps. Our hospice nurse, Marta, arrived just after Paul and I led the van home. We had showers the last few hours, but as we moved Margaret inside there was no rain – thankfully. Paul was strong enough with Marta’s help to move Margaret from her wheelchair onto the hospice furnished bed. Paul unpacked the day dresses that she will be wearing and hung them conveniently. He helped a number of other ways while the hospice nurse was making her initial assessment that involved me.

We have an overnight sitter who turned her and changed her diaper as needed.

Margie slept most of yesterday afternoon and overnight, was awake for a short while and has been sleeping deeply. I often go to her bed to caress her and speak to her but with minimal response and to moisten her lips.

House cleaners cleaned the house just before Margaret came home. I think I have done all that I can to make these final days as peaceful as possible. At least she will be at home at the end of this life before she goes to “the Great Backup in the Sky” to retrieve her good memories taken by multiple strokes.

July 18, 2013 at 3:04 pm Leave a comment

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

Older Posts