Tuesday, April 17, 2012


45 years…that’s almost a lifetime. It’s all of MY adult life. I was only 20 the day I said “I do” on April 15, 1967. I could not even imagine 45 years ahead. As years went by, and we passed 25, then 30 and 35 years….I could glimpse ahead at a 45th Anniversary. 50 felt impossible!  Quite honestly, I have wondered if the next big anniversary, 50th, will even occur – given the situation.  So that made for a little extra  pressure for me to want this one to be recognized and marked significantly.

And now, 45 has just passed. The day was barely marked, and that bothered me. I knew that if we were both well, we would have taken a trip to celebrate having been kept together for all this time.  T never failed to buy a card, a gift, and at least do dinner until these last few years.  Recently, we have gone to Knoxville to enjoy the dogwoods and have dinner in the city where we married, but this year that was not possible.  I have come to wish these kinds of occasions pass quickly to avoid lingering, wistful  feelings overwhelming me.

But being the determined woman I am, and so the day did not go by without some notice, I bought an orchid for the house. We both enjoy the exquisite beauty, and the blooms often last for weeks.  I also picked up some Freesia stems for the kitchen table. The evening before the 15th, I grilled steaks and made a little dinner complete with wine and candles.  The dinner was marred only by an interruption for extended bathroom duty.  There was wasn’t much conversation, but I have grown familiar with that, even if I don’t like it.  Amazing that a person can become “familiar” with such losses and begin not to even notice their absence. A part of the “new normal” as I call it.  And I didn’t sit there with my Sudoku book I hand!

On the 15th itself, we stayed in. T did not feel well in the morning, so I put out some plants in the front yard while he rested.  In the evening, we did go out for a simple dinner with our daughter, Stephanie. It was great to have someone to talk with over dinner, and we really tried to include T in the discussion.  I’m not even sure he remembered it was our anniversary until the evening.  He had tried his best to communicate to me some of his feelings earlier in the day. I got from it that he is thinking about his past life, his “old friends”, his family. He misses them.  It reminded me that often, even when there is no “talk”, there are thoughts which just cannot be expressed verbally except through great effort. So my gift to him was to simply sit down for an hour or more and try to listen and elicit his buried and unexpressed thoughts.

Really, I cannot complain, but I have to acknowledge that I like to mark significant occasions in a significant way. I like celebrations.  So once I came to grips with what “was”, then I had to minimize my inner expectations so they could coincide with reality and afford me peace and contentment on my 45th wedding anniversary. Noting that there are still many blessings from God, and that many have been robbed of these years by tragedies and loss, brings a clearer perspective to my spirit as I reflect on the day just past. Now I think I will make a cup of tea and ready my pillow for my head.

Friday, April 13, 2012

No Sentences

Today I had planned to tidy up the house, finish some business/banking in my office upstairs, and maybe work in the yard a little bit. I had hoped to drive to Fresh Market to pick up a some flowers for our anniversary.

I didn’t get into the yard for a moment, didn’t get the house tidy-ing completed, and didn’t get the office work done. Not to mention missing Fresh Market. Found myself distracted by T’s distraction all day.

He seemed really “down” this morning, not interested in anything at all, unsettled. We talked a bit about it when I tried to probe what was going on. And when I do probe, his ability to answer me, to put his thoughts into sentences – is hampered. I try to fill in sentences, thoughts…but often, I have no idea what he is trying to talk about, so I don’t know how to help him communicate.

By mid-afternoon, I stopped everything to try and dig a littler deeper into his mood, his thoughts. I learned he is worried, anxious, maybe afraid….and the only thing he could convey as a reason is that he is worried about getting worse.  I tried to imagine how he feels, but I couldn’t.

What could I say? I tried to assure him the best I could that God would take care of us both….and just to listen even though nothing was being said. I’m sure his inability to convey his thoughts verbally is frustrating to him, and I know it frustrates me.  I can see him searching for the right word, to connect the words into a sentence

So I made coffee, we had a snack…I put on music I thought he would enjoy…but he was still unsettled.  Every time I would think he might stay put for a while, he would head in a different direction.  “Like a hen on a hot rock” as my mother used to say.

There have been days like this before, and I am sure there will be more. But it surely takes a lot of energy to bolster someone else’s mood, care for them, do the jobs I need to do, and try to figure out the things not being communicated verbally.  I just want to escape, to shut myself in my room…but of course, I cannot. I tried to make myself available, to sit down and watch TV with him, to talk….but nothing seemed to matter or make a difference.   That trying and not succeeding alone is itself an energy-sapper. So then my mood drops, and I find myself feeling really low, wishing for a break, wishing this was not my life. Literally, I must talk to myself and pray out loud to avoid becoming so down that I am paralyzed and unable to do anything. 

Hoping tomorrow will be a more cheerful day or that something will work out so I can get a way for a few days sometime soon. Praying about that.  Jehovah Jireh – God knows

Friday, April 6, 2012

Looking Back 1

Lately, I’ve been thinking about the beginning of this journey.  When I go back, it gives more perspective to where I am now.

In the beginning,  (and when I say “in the beginning” I mean several weeks to months) I teetered on the edge of disbelief alternating with facing stark reality.  I knew the implications both short and long term, and I didn’t want to accept the possibility;  yet something in me felt I had to “do something”, to intervene, to fix it. Angry, depressed, sad, paralyzed  - these are a few of the words to describe how I felt. 

Some days, I could barely stir myself from the pillow; other days I was focused on trying to figure out how to sell the house, how to get a job, how to keep our healthcare – trying to get a handle on how we would manage financially and prepare for an uncertain future.  Everything seemed up in the air – and those earthly things I had depended on for security – spouse, health, job – were no longer stable; things had changed in a moment it seemed. And I knew deep inside me a burden unlike anything I had previously experienced.  I often could not pray anything more than “why” and “help me”.

God seemed very silent, but maybe I just couldn’t hear because I drowned out His voice with my own cries for deliverance.  Frankly, I was often very angry with God, even though I knew that I was utterly dependent on Him.  Thankfully, He is a God who understands the human condition and is willing to extend His great mercy until we can fall on our faces in recognition of His love. 

Our children were in their worlds trying to come to grips with what I’m sure felt unreal and impossible.  How could something so potentially devastating be true for their father? How could this intelligent and loving man be destined to live out his days losing his reality? 

We attempted to share the situation with family and friends, from time to time. 
I didn’t feel  anyone really “got it – and in fact, I think few, if any,  did get it. Maybe they thought his memory was already gone, or the mental picture of the future was too grim.  I felt a wall between myself and others .  At the time, I wanted someone to allow me to express my feelings without possibly judging my lack of faith and without brushing the diagnosis off casually in an attempt to make me and them feel better.  I suspect I wore my angst like a blanket, and probably not a very attractive blanket. 

Thursday, April 5, 2012

Some Things I Miss


1.     Tom
2.    The ability to make spontaneous choices
3.    Regular trips to Ukraine
4.    The chance to take other mission trips
5.    Singing/choir – a lot
6.    Bible Study
7.    Movies
8.    Time alone
9.    Travel
10. Lunches or dinners w/friends
11.  Friends
12. The opportunity to go to a show/ballgame
13. Entertaining
14. Shopping
15. Having a husband who can “be present”
16. Companionship
17. Time to exercise
18. Being a leader
19. Feeling relevant and having choices
20.Being included
21. Experiencing the “golden years”
23.Feeling carefree
24.Having someone to help make decisions – shared responsibilities
25.Feeling feminine
26.Falling asleep on a road trip

Maybe all of these are not because I have become a full-time caregiver, but most of them are a result of this life-altering situation.
There is no order of importance, simply listed as they come to mind.


Sometimes I wonder if I’m “losing it”. Losing my edge, my ability to interact, to relate, to see outsie my world? Am I becoming myopic? Am I becoming one-dimensional? Am I boring? Am I relevant? Am I old? Have I lost my identity?

Living with a person afflicted with dementia causes one to exist on a precipice emotionally/mentally. I am drawn into his world of “good days and bad days”….or good moments/bad moments.  A world which gets smaller and smaller as days go by.  I may wake up and unconsciously expect recognition, recall, or rationality; instead I usually find the polar opposite, poor recognition of surroundings, little recall of the previous day or how to get dressed, requiring coaching and instruction to accomplish the morning bathroom routine or to get into the kitchen for breakfast. It’s nothing for the walk from bedroom to kitchen to take 10 – 15 minutes.

Because dementia causes a gradual decline in status, only temporarily improved by medication, there are slippery slopes alternating with plateaus.  About the time I find myself having adjusted to the current plateau, another “slide” begins, and I must rethink my life, change routines, expect less and do ever more. 

I have learned to anticipate –, potential falls, bathroom stops, hunger, a hearing-aid battery going dead, needed items – often offering words which cannot be recalled. I have immersed myself in giving life to another and submitting  - however unwillingly at times - to the dementia and all it's implications.

How much is not being able to talk with someone a factor in feeling sane? The doctor talked about T’s inability to hear before we got his hearing aid and described that hearing loss as “sensory deprivation”. Can significant lack of conversation cause or be type of sensory deprivation?  

Of course, this is not all my "wondering". But all I have time to talk about for now.