Living Rare

In recent months I had been in the habit of printing out my blog entries and mailing them from Japan to New Jersey for my Dad to read.  I don’t think I will print this one out.  Because it’s all about him.

Two months ago he was diagnosed (gulp.  that term feels so sterile) with significant dementia.  It shocked us all.  We knew it was occasional.  We hadn’t realized the extent of it all.  The medical staff told us that his background as a teacher meant that he is able to hide this well — he is still so good at conversing and interacting that you may not realize the extent of the disease…

My sisters warned me that it would be very hard to see him when I came back two weeks ago.  It was.  It is.

Our family had planned to go away to the Pennsylvania mountains for a week upon our family’s return to the east coast.  His health had continued to deteriorate and my stepmother Mickey was over her head in caring for him, even with some medical aides coming in.  We decided that we would still have him come with us, but Mickey would stay back and get a much-needed break.

So you need to know my Dad – with or without significant dementia.  At 86 years of age, he still cares so much about people. He wanted to know updates about our life in Japan – in particular the Nozomi Project. Are we still making a profit?  What did we do with the 20% profit that we gave away?  He is SO PROUD and so interested in where his kids are investing our lives.   He always asks how each of our kids  are doing in their Japanese schools.  He’s never been great with little kids, but his predisposition to love people in general has meant that he has found his own fun ways to show love to his little grandkids. Ian had fun doing “card tricks” for my Dad — who tried hard to act like it was a bucket of fun.

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Bill Plumb has read the New York Times or the Wall Street Journal every day for most of his adult life – brought one with him last week. He can still talk politics like nobody’s business.  My sister Hannah later admitted that he was the clear winner in their long lunch debate about Obama.

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One night we were all sitting around and the truth came out about my little prank that day on my sister… we had placed a photo lifted from one of those “ugliest babies dot com” websites and put it on her Facebook site that she had left open and unattended on my computer. Hours and hours later, we showed it to her and we all could not stop laughing.  My Dad’s body was nearly in heaves as he saw the photo and I think he loved watching us laugh as much as we loved watching him.

But he had his less-than-lucid times.  At one point he looked at me and asked if I had any sisters and brothers.  I turned my head and pretended I didn’t hear him because I couldn’t answer.  He could quickly become disoriented.  We took turns sleeping on the floor outside of his door because most middle-of-the-night bathroom trips didn’t end well;  he would get confused and forget what he was doing.  He has a hard time maneuvering.  The combination of very swollen feet and ankles – causing difficulties walking —  and incontinence makes his life fairly miserable, night and day.  Twice he fell down – we were thankful that there were no broken bones but it was just so so scary.

Dignity.  I thought about that word a lot.  And indignity.  This man who marched and served with pride in the Korean War…. who has mentored more young men then I can count…  who visited nursing homes and cared for widows long before it was cool to volunteer….  Student Body President!… he had magic green thumbs when it came to growing pole limas and boxwoods (aargh!  I hate the past-tenseness of this!)…. who moved his young family to the unknowns of Rhodesia because he wanted Africans to have a better life, and help them find Life. He still knows more names of flowers and trees than anyone I know.  But his daughters now are doing things that are, pure, and simple, undignifying.  (If that’s not a word, it should be).

One of the tasks of our time away was to pray through the different options of next steps for Dad.  His wife had been asking my sisters to find new living options for him as it was clear that he needs more constant care.  My sister Beth has his power of attorney and has been researching his finances;  she had consulted Mickey for her hopes for him.  We spent several hours praying and talking through every possible option with these in mind.  There were a lot of tears around the table.  Who ever wants to put a beloved parent into a senior home like this?  It is such a heavy, sad decision.

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On our way out of town we went out of way to pilgrimage as a family …to the Pocono property that our family had owned for many, many years.  My parents had built from scratch a home at the top of the stream;  this land was where we had spent most every family vacation that I can recall after our return from Africa.  We had to take a 40 minute detour to get there, at one point even moving a detour sign to drive around it!  — I am sure all three of the brother-in-laws were mumbling under their breath but went along with us anyway.  And we finally drove our vehicles down the still-rutted wooded long driveway into the property.  We pulled into the top of the hill and saw the charming cabin that my parents had built fifty years ago.  It has different wood siding and two more dormer windows and is adorable – we were all so sad that they had sold it all those years ago!

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And we thought for sure this would make my Dad so very happy — to again walk a bit on this familiar sod that filled all of our senses with a multitude of memories…to see the charming dream house that he and his bride had built oh so long ago.

But it didn’t.  Strangely, all he wanted was to see the waterfalls that were down the road.  We had to ask the brother-in-laws for just one more indulgence — pretty please?? — and we drove down the way to the big open field.  We remembered walking through this meadow to get to that place of beauty…. but the land here was now populated with threatening “No Trespassing” signs.  And we knew we could never get our Dad with his walker or wheelchair through that meadow and the woods that would eventually lead to the falls.  So with sadness we said goodbye to our land and continued home to New Jersey.  We know Dad was just not happy.  He mumbled to my sister Allison, “I’m going to have my friend Ollie bring me back — HE will let me hike to the waterfall!”  (We told Ollie the next day.  He asked, “Could we get a mule to take him in?  The National Guard?  Tell a tv show that it’s his last wish and they would help?”  We now know why my Dad wants to ask Ollie!).

And so we have returned back to NJ.  We are in the throes of decision making, prayerfully trying to make wise  and important decisions with his wife about what will likely be my father’s last earthly home.  Our hearts are heavy.  We have told him he will be moving;  he gets it, but he doesn’t.  And in a few weeks I will need to say another goodbye.  We don’t know what this one will mean.  Heavy, heavy hearts.

Years ago I read a wonderful little book (the Fragile Curtain) by Karen Mains that impacted me greatly.  Long before I became an overseas dweller working with displaced people or had to deal with an aging parent, I was fascinated by her travels and how she tied in her refugee work with the gradual death of her father.  I am re-reading it now, and it has such beautiful bittersweet meaning.

It is true. My fragile curtain has been torn. The world is not well. I am not safe. I know that I, and the ones I love, are only a breath, an exhalation away from not being. The bittersweet beauty of knowing this makes living rare.

My dad’s life … and each of our lives… are only a breath away from not being.  This is what makes each day rare.  And moments of laughing over an ugly baby picture on Facebook so insanely wonderful.  And an 86 year old’s first selfie so great:

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Maybe we should work on getting that mule.

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17 thoughts on “Living Rare

  1. Praying for you during these days of aging parents. I can really relate. I will return to CA by myself next week to visit my parents who are both living in nursing care now. My mom has Alzheimer’s and my dad can barely walk and has fallen many times. It is “bitter-sweet” to see them. The “goodbye” is always the hardest. Praying for you Sue!

  2. Sue,Thanks so much for sharing your beautiful/awful struggle with your dad. I have always said I DREAD that time when my parents are at that stage and I cannot be there for them…or have to make those gut wrenching decisions (I am in Minn and they are in Mich). Not nearly as far away as you have it. I cried and got goose bumps reading your blog this am. Praying for you and your decision making. You are a great writer. Cylinda Ring Date: Wed, 6 Aug 2014 05:18:07 +0000 To: cylindaring@hotmail.com

  3. Thank you for sharing this and for being real. I’m praying for you, your sisters, your dad’s wife, and the rest of your family.

  4. My heart and prayers are with you. My siblings and I are at the same place with my 92 year old mother. Sigh. I wondered why we had not heard from you. Carol A. Brown

  5. Sue, know that I am lifting you, your sisters, your Dad, and your family up in my prayers. I remember those days with Mom and it was so hard to see her like that. The little glimpses of her old self I hold on to as they are so precious to me now that they are gone. Praying that you allow God to guide your decisions with him as it is hard to do. A good book to read, though it deals more with Alzheimer’s than dementia, is “Still Alice”. I had it recommended to me by a friend who is a nurse in a transplant center. Blessings to you and your family during this tough time.

  6. Thanks for sharing so honestly about our family and dad. So strange that you mention “The Fragile Curtain” as I was just telling Beth a story from it on the way to the airport. I don’t think I had thought of it before that in many years.

  7. Sue – My heart is heavy as I read your post. You and your family will be in my prayers as you journey together. Did you post which book by Karen Mains you were mentioning? I’d love to read it. God bless you…Liz

  8. Sue: So incredibly sorry to hear of what you and your family are currently facing, related, as always, in your forthright, soulful way. You are ever in our prayers, but please do let me know if there is anything more concrete I can help with in any way.

  9. Dear Sue,
    How beautifully and lovingly you’ve painted the picture in exquisite writing and sharing the depths of your and your sisters’/husbands’ hearts !!! I’ve appreciated and thank Our Heavenly Father for my years with my beloved husband, Hummy and my beloved cousin, Billy. God has used your Daddy and your precious mother {Dottie} in so many ways to reach others for Our Lord Jesus. Each day i’m looking forward to our super reunion in Heaven !!!

    With much love and prayer for all,
    A C

  10. Read this entry with tears in my eyes. It reminded of my last journey with my parents. May the Lord envelop you and your family with His love and grace! Praying for you!
    Birgit

  11. Dear Sue,
    How beautifully and lovingly you’ve painted the picture in exquisite writing and sharing the depths of your and your sisters’/husbands’ hearts !!! I’ve appreciated and thank Our Heavenly Father for my years with my beloved husband, Hummy and my beloved cousin, Billy. God has used your Daddy and your precious mother {Dottie} in so many ways to reach others for our Lord Jesus. Each day i’m looking forward to our super reunion in Heaven !!!

    With much love and prayer for all,
    A C

  12. Thank you so much for sharing a window on the life of the Plumbs. This is hard news, but joyous as well, to see you all facing the messy love together. I remember Bill’s boxwoods and a few times, when I first moved to Philly around 1990, when we went with him to pick up the “garbage fruit” to be sorted and delivered someplace where it was needed. Whenever Ollie arranges for the mule, I hope to see a photo of that! God bless Bill Plumb and his daughters.

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