Changes

10 days ago, I moved my husband into a memory-care facility.

That was a difficult day.

How does one tell a spouse of 45 years they will no longer be living in their home, rather they will be living with strangers?  I had talked with T about this change and tried to explain why it was necessary at this time.  But I never knew if he REALLY comprehended or remembered that a change was coming. I think not.

My emotions were not trustworthy during those days.  The feelings I had ranged from guilt to impending relief, more guilt for anticipating relief, to fear, sorrow, thanksgiving, anxiety, hope.

 I think the children and I mourned in the days leading up to the move.  And maybe still. I didn’t want to have to make that decision, but I honestly felt it would be better overall for our family – individually and corporately.  I felt God had provided this opportunity, and to turn my back on God’s provision would be wrong. So we forged ahead…..and so far I'm glad for the decision. 

T is well-cared for and respected.  We can visit whenever we want; I have enjoyed a little more independence, although I miss him. Something feels like it’s missing – and there is something missing – the presence of my long-time friend.  I realize that some of what I enjoy about being at home is also enjoyed through his eyes – so without him there, the enjoyment is somewhat diminished.

Frankly, I still experience a gamut of emotion each day. I wonder how he’s doing. I wonder what he’s thinking. I’m restless unless I am occupied.

I have known that it will take months for me to figure out who I am now that I am not a full-time caregiver as I have been for the past 6 years.  I pray T will enjoy his surroundings and be benefited by this move.  He deserves the best – if anyone does. 

Looking Back Again

While I was wearing my blanket of angst and being made aware that life was changing drastically, I was also attending a Beth Moore bible study, “Breaking Free”.  I made myself do the study, attend the meeting…..and I began to hear a repeated theme in her teaching. Beth spoke often of God’s unfailing love for us. For some reason, this description of God’s love rang differently to me than other words to describe His love. I heard God saying that no matter what happened, His love for me had not and would not “fail”. His love would be certain and reliable, not erratic like my life  - which felt so very uncertain.

At one point in the early months, I actually did a search of this term “unfailing love” in God’s Word. I wrote out every verse I could find, with the reference, – to burn it into my mind and spirit.  Almost daily, I was tempted to believe that God didn’t love me – I knew he loved me in the largest sense, that He sent Jesus to die for my sin and to give me eternal life, I had staked my life on this belief. But because things were so out of control, happening at such a fast pace and yet so slowly, I would find myself thinking that God wasn’t seeing me, that He didn’t care about these times. 

I know God was so patient with me during this period – which lasted a long time – and was not shocked by my questions, my faithlessness, my fear. But I knew this was not how it was supposed to be…….someplace inside me, I knew this was the devil’s temptation for me to “curse God and die” as was suggested to Job. 

There were many, many times when I would feel so emotionally, spiritually, and physically weakened that I would say out loud to God – “I refuse to believe You don’t love me,,,,,You say you love me with an UNFAILING love”…I would rebuke the enemy in Jesus’ name and continue to repeat the Truth of His unfailing love – to affirm this both to God and to myself. I already knew that satan often comes to us and distorts God’s truth, he tries to get us to believe a lie, to try another way. 

I would read those verses I had written out over and over again – or visit those same verses marked in my Bible to imprint the precious, life-giving words into my mind and heart.

God never abandoned me. He never left me, He didn’t allow me to flounder for too long without sending someone or some event to comfort me, to assure me of His care. I remember one Saturday morning when I was feeling so alone – I asked God to just show me that He knew I was there, to let me know I was not forgotten – a few minutes later, Rachella Bohannon called just to check in. I saw God’s provision, and I told her she was used by God that day to let me know He heard my heart’s cry to Him.

For anyone who might read this and be tempted to wonder how or why this situation can cause so much anxiety, worry, fear, sadness – I can only say that maybe you have to walk in these shoes for a while to feel the rocks under your feet, to know how closely you walk to the precipice, to feel the emotional sweat drip down your face, to hope for a turn in the road which will take you down a different path which you know is not likely to appear.

  (to be cont’d)

ANNIVERSARY

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 45^th Anniversary. 50 felt impossible!  Quite honestly, I have wondered if the next big anniversary, 50^th, 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 15^th, 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 15^th 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 45^th 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.

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

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. 

Some Things I Miss

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”

22.Conversation

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.