Vibrancy

A friend from my waaaay past commented on my recent posting that she remembered me as a “beautiful, vibrant young girl”. Well, I can’t say much for the beautiful or young anymore, but I believe myself to be still “vibrant”!  Thank you, Mary. I like that word; it means alive, exciting, animated, colorful. 

And, in fact, I still feel that same way.  There are times when those words might not be descriptive or apparent, but underneath, buried deep inside me….that same “vibrant young girl” lives and wants to flourish.

Truthfully, I still laugh hard and try to pursue things I enjoy. The pursuit is often interrupted or delayed or thwarted by my fatigue and/or obligations, but thanks be to God, I am able to recoup and try another time.  That spirit of persistence, which is God-given, allows me to pursue “life” even as I am dealing daily with a long, slow death. 

My cousin has told me that her aunt (not my aunt) – called me a “spitfire” when I was a child. My response was “me???”  I always thought I was an easy child, that I respected authority, obeyed….maybe not!  But I own that strong spirit. T has commented often through our years together about my strength – that he was attracted to that trait – sometimes it was his blessing, sometimes his bane.  I’m sure my children have wanted less strength many, many times! 

Back to my original intent – to affirm that I still find life enjoyable.  At work, I enjoy my co-workers and am often the source of laughter and humor.  I love being with and watching my grandboys. They are oblivious to the problems which are part of our lives, they just accept it……smile, laugh, play, talk about legos,  hug me….they make me laugh.  I like my kids – of course I love them, but liking them is different.  I like their intellect, their humor, their ability to love and friend others…and they keep me on my toes while they like me back.  They affirm my pursuit of life.  Times with them are the best!!

I still try to keep flowers in the front yard and weeds out! I love seeing birds in my back yard, especially the bluebirds. I love a good glass of wine, a medium rare steak, burgers, the smell of the grill fired up – and healthy food – tomato/mozzarella/basil, avocado salad, tabouli, on and on. I burn a candle almost every day – it relaxes me. My favorite scents are lavender, cranberry, fall smells, vanilla, patchouli.  I try to have a small fresh flower bouquet whenever I can. 

Learning is still fun – nursing, computer, food, wine, politics, travel and other cultures.

I would love some fabulous shoes if I could find some that fit my slender feet! 

Music is a source of pleasure to me….although I miss singing very much.  Getting with friends and family, while it isn’t often, is something I look forward to and find restorative.   

Reading takes me away from life – as it always has. T would say I was “legally dead” when I was reading. I was not to be disturbed!  And I adore travel…. something I am missing a lot, the ability to just take off to someplace different.  

College football is a passion. Honestly, in the fall, I will plan my life around football on Saturdays.  

I love God in a way I never have.  We talk all the time – why not? He sees everything, He knows – and He is always here.  And He is not confounded by my pain or worry or doubt.

Now we all know, I remain passionate about life.  I need to affirm this for myself and for those who read – that while I experience  all these human feelings and emotions I write about, there is still “Marilyn” ……she is the same person, yet not the same.  

Wear-i-ness

 

Confession : an open acknowledgment of feelings; something admitted or disclosed;

Wear – erosion, deterioration, fray, abrasion

(Fray: unravel, become ragged, become threadbare)

Weary -  the result of wear: exhausted, drained, fatigued, disillusioned;

(Frayed:  worn, ragged, tattered, unraveled)

[i wrote this a few days ago, and it is true. i will say that today has been an unusually communicative day with T....he has been able to make full sentences, to express feelings intermittently, to be a bit more conversational. no significant stresses for 24hours, and i am thankful! but what i have written is still valid and significant and descriptive of my life.]

I like words…….and their meanings. Words are how we communicate, and they can build or tear away lives, relationships, and even nations.  To my own discredit, I have not always used words to their maximum benefit.

But I am now using words which I feel will best communicate how I experience care-giving.  Above are words which probably best describe the result of care-giving and take on even more weight when the CG is “single” and when the time extends. When I saw counselors and doctors last fall, they were incredulous at how long I have been at this process.

I have come to employ the word “weary” to describe myself;  and I believe this word is not distinctly descriptive of  my feelings, rather it expresses how most care-givers feel after any period of time on the job.  It’s beyond tired….it’s a fatigue of body and soul which cannot be remedied by sleep. It follows me throughout the day, pervasive in its effect. In fact, sometimes the waking up hour has been one of the most difficult. My eyes open or my mind alerts from sleep…and I am immediately aware that this is another day of the sameness….the same schedule, the same loneliness, the same demands. I feel tired before my feet hit the floor. Many mornings during the last year, I have prostrated myself at my bedside, flattened against it and cried out for strength, telling God I didn’t think I could do it for another day.  Sometimes, I have awakened and cried upon remembering my circumstance – before I even encounter the day physically.  Often I still awake with a feeling of general anxiety, not for any specific reason… …instead, it's as if I am going to have a surgery, or a colonoscopy, or a test I  don’t feel prepared to take.  Different from anticipation (expectancy, eagerness, hope)……VERY different

By now, if you’re reading this….either you are a fellow care-giver who can maybe identify with these feelings, or….you may have decided that I have a problem, that I must be mentally disturbed, or hysterical.  "As a matter of fact" (to quote Rick Perry J), none of these are really true.  I am just plain ol’ tuckered out inside, weary….ragged, drained and often without anticipation.  There was a book made popular back in the 80’s by a Christian pediatrician who wrote about a child’s “emotional tank” and how we as parents need to watch for when that tank was getting empty and take care to keep our child's emotinal tank full.  I assert that this concept applies to everyone.  We need our emotional tanks as full as possible to help us run smoothly and productively.

How does a person get emotionally filled? Primarily from interaction with Holy God and with another human being. God made us to live in community, to be relational -  to desire each other’s company, affirmation, to spend time with one another, to be listened to and to be heard…and to return the same.  So when that interaction is missing – for whatever reason – when isolation becomes the order of the day, when spending time with another person is the “abnorm” instead of the norm, when the TV becomes your best friend, when the person who was your closest friend is disconnected by disease, unable to dialogue or process and respond to conversation, when you are left alone most of your days– the emotional tank begins to run on empty, then on fumes….then it begins to sputter and choke.  Thus, the weariness…......

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Restoration and Refreshment vs Recrimination

 Confession: open acknowledgment of feelings; something admitted or disclosed;

There is a dilemma which caregivers face daily, and while it has been on my list of things to write about, I am doing it now at the request of a fellow caregiver.

Is it selfish to want some time alone? Some “me time”?  Time to let my batteries re-charge? To get with a friend or acquaintance?  To go shopping or to the grocery store ( or sports store) and just meander the aisles?  Or take a short trip?

I don’t think it is selfish at all. However,  as much as I often want to run out the door with the clothes on my back and just hang out by myself or go out for a women’s night or day out, or drive to Montana and work in a diner for a while, I end up feeling guilty for these feelings.

There are two scenes at play here:  first, the real need which we ALL have to be alone with ourselves occasionally to think, meditate, read, sleep, etc.,;  secondly, the need to get away from the daily grind of seeing to another person’s needs, to be with peers, to go to an event,  to sleep in, to fall asleep early, to stay out late.  God even calls us to be alone with Him, and Jesus demonstrated this often during His ministry.  But for me, and most caregivers I think, it is a near impossibility. We are bound to the people who need us and to our commitment to render that care faithfully.

So what to do?

People tell me all the time that I need to take care of myself. I know this, but my mind is usually thinking when they make this comment….how? Are you volunteering some time? Do you have a plan? Will you help me make that happen?  They are well-meaning, but I am confounded about how to make it reality. It’s my issue…..

I know I need to be away or alone, but how to do it without displeasing T or making him feel rejected is the dilemma.  How do I easily say, you are going to stay home while I ?????  I feel he has lost so much, how do I add to that loss by taking off by myself or with a friend? And how do I say to someone, could you come over here and stay for a few hours….i just need to go do something I consider fun.  It “aint” easy.

When I began, I had the medical knowledge to know this would be a challenging role.  I knew it cognitively. And as I usually do, I plunged in with both feet .  So  a habit was established that T and I were together most all the time, we did most everything together, and as he became more disabled this habit  continued but with more intensity.

As I look back, it would have been better to have begun by taking some time away occasionally – to have created a different pattern of living, one that gave me some space, that was more nurturing for me – not only for my pleasure, but as well – to replenish my  empty emotional, physical, and spiritual tanks and allow me to be a better care-giver.   I am easily dissuaded from following through with plans to get away for a day  if it becomes arduous to work out, if the weather is bad, if T is having a bad day, on and on…but, I do have a plan to be out for part of a day this week.  I need it!

Oddly enough……even as I write this, I can feel the little guilt monster rearing it’s ugly head to point a gnarly finger at me. Should I be ashamed of wanting to escape occasionally?  As I said, my mind knows there is no shame in this very human need, but my emotions dare to chastise me when I begin to explore or put into motion time for myself.

There is more to be said, but I think my ambivalence is evident. It is a bit of a war going on inside my person, and I suspect, within other caregivers as they wrestle to find time for restoration and refreshment.  Dare I encourage others to do a better job at what I find difficult?  Dare I challenge those who are friends or acquaintances of caregivers to help them achieve this much-needed time, to offer to tend to the disabled, to pay for assistance, to go with them or meet them for lunch or dinner?

Hebrews 10:24” ….let us consider how we may spur one another on toward love and good deeds.”

Aloneness

Confession: an open acknowledgment of feelings; something admitted or disclosed;

I have felt a certain “writer’s block” for the past few days, and here’s the reason:  I became afraid that if I am honest, someone will be offended  - which is silly. The whole reason for writing is to be honest, and let the “chips fall where they may”. So, I am re-committed to writing and to being honest.   If no one reads, I will have still have done it for myself.

Recently, I have been reflecting on the aloneness which I have experienced.  It began at the beginning.  Like it was yesterday, I remember being in a lay-pastors’ meeting at our church; T and I were part of that group of leaders.  It had not been long since we received the early diagnosis, and T shared it in this meeting as a prayer request.  As I remember, silence fell on the room. An uncomfortable silence.  I was dying inside with fear, worry, and needing to talk…tears always just about to spill.  The meeting continued, had dessert or something like that…. and went home.  Again as I remember (and my memory is pretty sharp), only two people came to us afterward and said anything.  We were left to ourselves….to crawl back in our car and drive home with the same burden, the same fears and concerns, ……alone.  In most groups of this kind if someone announces an illness or serious diagnosis (or maybe not so serious), people would maybe have a special prayer, anoint w/oil, lay hands on….commit to pray, ……something.   It was astounding to me that there was not a more compassionate and immediate response.   Couldn’t they feel and see that this was an adult man who was making himself vulnerable to them, that he was in this admission – asking for affirmation and support and love? Maybe they didn’t know what to say or how to respond, but in the role of lay pastor, don’t you need to be able to step in the chaos of another person’s life n order to minister to them?  Good people, out of touch with our hurting souls.

After a while, maybe 2 ½ years, I just could not do church anymore. My feeling was that I would not go back until I could be authentic. I was crushed by the weight of my daily life and the outlook for the future (which I am now living).  I’m sure people meant well when they would come by and ask how I was doing, but when I was honest, the discomfort was so apparent with most people, that I just began to fake it.  Most would say something like….thinking about you!  Things going ok? Smile…pat me on the arm, and head out to lunch with friends or family.  I don’t think this response was just a particular congregation; it seemed to happen with all our circle of acquaintances/friends for the most part.  I felt I needed to say I was doing fine,  to let people off the hook and allow them to return to the comfort of their own circumstances instead of entering (with me) into my circumstance which was painful and strange, even to me.

I always wondered why some male friend of T did not desire to enter into this walk with him, to listen to his fears or concerns, to learn how he was managing his faith walk, to hold this man’s hand as he walked into the future not knowing what in the world might happen, to befriend him in a significant way as he wrestled with all the loss – the loss of profession, identity, income, control, self-image – the loss of future plans.  I mean, Tuesdays with Morrie had been such a big hit on the book circuit….why not Wednesdays (or any day) with T??  A way to journal for this man and the world how it might feel to be facing his diagnosis and all that it implied.  T had always been the consummate doctor – he made house calls, he saw people for free, he called in prescriptions for patients and family when they would call at home or meet him in the hall at church.  He did physicals on immigrants.  He was never too busy to be bothered with those who needed him. There were a few men who took T to lunch when I was working, the most faithful being Buck Rambo. T loved his time with Buck. Finally, it became a risk for them to continue to take him out for lunch and get him back home safely.(to be cont'd)

A Good Week

Last week  was a good week. What does that mean? Well, it means there were not any bad bathroom crises; there was one small fall which did not cause any injury, T** was a little more conversational, no days in which “confusion reigned supreme” as I say….meaning it did not dominate the day.  I was able to get T**’s eyebrows trimmed, Stephanie cut his toenails (that daughter of mine has the spiritual gift of mercy), the prescriptions were delivered on time and were correct, we actually went out for a few hours with a friend, I was able to leave T** in the car to do some errands, there were no crises of household nature, T**slept well each night.  I did not get in any exercise, but I did get the oil changed in one car, I got the filters washed for the heating system,  bought groceries after work Tuesday pm, got my computer bought – major decision, paid some bills, finished the tax info for the CPA, worked 27 hours, and lost an hour by springing forward. I’m tired just thinking about it.  Always something to be done – little to no down time. "ON" 24/7 literally – that is my life. That is a good week. 

God's Faithfulness

 Confession: an open acknowledgement of feelings; something admitted or disclosed.

3/9/12

Today, I was looking back through some of my journaling over the last 5 years. I notice that I go for long  periods not writing anything, and often my writings are when I am feeling especially “down” or depressed about things. But there was a theme which ran through it all, even the evident despair….and that theme was trust in God.

Back at the beginning, God drew me to Isaiah 54: “…..For your husband is your Maker – His name is Yahweh of Hosts – and the Holy One of Israel is your Redeemer…..” (Is 54: 4-8)

I have claimed that scripture often;  I have also cried out to God that He was not honoring those Words at a particular juncture. What is most important, however, is that He has been faithful to me. He has provided for my needs, sometimes at the last minute, but He has not allowed me to linger in the pit of despair. 

When T**’s illness first began, I was sure we had to sell the house, I was worried about finances, I had not worked myself in 5 years…so I began looking for a cheaper home to buy. I remember going to lunch with some friends after church to calypso café, and I ordered the very cheapest thing on the menu, a salad for $1.50 and water.  I had been very involved in Ukraine for the past 8 years and could see it passing out of my life.

Because we had always “tithed”…[for anyone who might read this and not be familiar with that term, it means 10%  given to Christian work, in the church or in another area of Christian ministry],  I continued to give 10% of our gross income (before tax) to Christian work.  I never did find the perfect place, even though I put our home on the market for a few months, and we are still in our home, and it is paid for. I have continued to tithe our income (and more). I have continued with Ukraine ministry until now when leaving Tom is probably not possible.

Back to 2005, I threw out my pitiful resume on the internet, and lo and behold, I received a call from an American Healthways recruiter about a job. I almost laughed….i don’t think I was serious about a job, but I followed through and made an application and interviewed.  They offered me a job! I didn’t want it and turned it down. I needed more time and asked to be contacted if another class started.  Too much was happening too fast.  So, quite soon actually, I got another call that a class was starting June 20. Now all this began at the end of March  - T**’s symptoms, I mean.  So this time, I accepted the offer.  I am still in this job after almost 7 years. I admit I cried every day on the way to work for a while….6 wks of training, and I did not want to be there at all.  However, my God was, in His mercy, providing for me.  

When this began, we were a part of a church fellowship.  That fell away after a while as well, when we could no longer be involved as before.  But I have learned that my relationship with Jesus and Father God are not dependent on the church or other people; it is between me and God/Jesus….and actually, it has become stronger during these years.  When it comes down to the nitty gritty, and it is only you and Holy God….is it enough? My answer is this:   YES!! It is purer without the church to dilute it. I am not against church at all. I miss being part of a local fellowship and all the things that go with that participation, and in my 65 years, this is the first time I have not been part of such a fellowship.  But, God is not confined to the church, and His Spirit is available at all times to the brokenhearted and poor in spirit ….really to anyone of His children….so that I trust Him, not others, for my needs. 

Here is what I have concluded….our culture, and maybe most cultures, are wired to “rescue” and offer immediate support.  If someone dies, is in an accident, has a serious diagnosis….think of it, everyone rushes in…with food, prayers, cards, offers to help, etc.,….we can minister to our fellow-christians in the “short-term” or the sprint…..but the marathon…..is a very different matter entirely.  I say we “expect people to die or get well” so we can move on with our lives and not be needed for the long-term. HOWEVER, there are those of us who, not by our own choice, find ourselves involved in and running a MARATHON!  We don’t know if we are at mile 4 or mile 24……we just keep running, and running, and running,……and there is no one to cheer us on or be there to run with us. They drop out early….our culture, Christian and non-christian, is wired to run the sprint with others, not the marathon.  

I remember a lovely gentleman in our previous church, Hobson Byars, whose wife had Alzheimer’s.  I would see them at church and never ever have any idea of what he might have gone through to get her there.  I never offered to help, I had no idea that I should do anything or that he had needs I could possibly meet.

With this diagnosis being so prevalent now, the Church needs to begin to look at how it can minister effectively to people with this diagnosis and who are caring for loved-ones with this kind of illness. We cannot  “go ahead and die or get well”….we just keep running….and panting…and needing a cool drink of water…..or a small rest…..and we keep running….and praying to God that we don’t run out of steam before the end.

God has been faithful; He is everything to me. He is mother, father, friend, husband……I trust Him much more than when I had an easy life. He is good, He is love, He is my strength day by day, even when I am so weak I can barely lift my feet to touch the floor….His mercies are new every morning. 

this is rambling, and may need re-addressing at some point. ...i don't know!

Whew!

3/5/12 Confession: an open acknowledgement of feelings; something admitted or disclosed

T**  hardly slept Thursday night, so he was plastered to the bed Friday morning. When he finally did wake up, he was feeling ill, could barely get to the bathroom, and had to be moved from his bedroom in the wheelchair. I rarely use it inside the house, but I could not communicate with him on what he needed to do, and even if he could have understood, I don’t think he could have walked.

There were big tornado warnings, so I cleared the closet under the stairs and made him a pallet in there.  Because of his confusion, I’m not sure he understood why he was in the closet, nor was he able to position himself in anyway which would have kept him safe or allowed me to comfortably get myself in there when the warnings hit. 

In the middle of all this, because of his stomach upset, I had to move him quickly to the bathroom in the wheelchair. Because we were hurrying, his hand got caught in the chair…and he was not able to communicate it to me for a little bit, so his hand got mashed with a little cut on his finger. Then I had to get him to stand to get his hand out of the wheelchair.  Even as I write, I can see and feel  the absurdly comical nature of this situation. I was trying to get his feet on the foot rests and get him to the bathroom before a bad accident, and he was in pain and stuck and I could not understand. I felt really badly, but still rushed getting on to the toilet as quickly as possible – once his hand was freed.  I won’t say a lot more, but let it be enough for anyone reading to know that I keep gloves, wipes, toilet paper, paper towels, 409 and pine sol nearby, and I think I used each of those! This one of those times when the hysterical laughter mentioned earlier might have bubbled up.

We hit the “3^rd time’s the charm” that day in bathroom drama.  This was the first day in a long time that I almost cried. I don’t cry anymore – I can’t. I think I would feel better if I could experience that face-wetting, nose-running, can’t-catch-your breath, soul-cleansing  weeping.  But, even though the cry is in me someplace, it won’t materialize anymore. Maybe it’s the medicine….

By the end of the day,  I was physically and emotionally  exhausted. I could barely think or put one foot in front of the other.  I didn’t even want to think.  As soon as I could, I crawled in bed – knowing I would be at work by 8am on the next day. I had not made it to the grocery.

On Saturday, I began to feel ill myself.  Being the devoted worker I am, I stayed the day, (until 6:30pm) then picked up T**, and got home with chills, nausea, and fever. I had caught the bug myself.   Sunday, I didn’t want to call Steph – I knew they needed family time –  So, I spent the day in bed, getting up only to make something for T** to eat or drink.  This is when his kind nature is still such a blessing. While I slept and groaned with my own discomfort, he did not complain, just watched TV lying on the other side of the bed.  I guess this is what 45 years together lends a couple.

Difficult Day

3/1/12  Confession: an open aknowledgement of feelings; something admitted or disclosed

Today was one of the more difficult days recently. And it lasted all day. Often, things will start off badly, then improve through the day. Or there will be moments which are extremely challenging.

T** awoke early as usual, and was up by 7:15 for breakfast.  I asked him if he wanted eggs for breakfast.  His response was a halting “cut in chunks” or something like that. I tried to clarify “the kind you beat up or the kind with the yellow runny”.  Finally we figured out, scrambled was the choice. After breakfast, he was going to be showered. But when he stood up, he started leaning towards me, looking at me, but not seeing me. It was like he couldn’t hear me either. This has happened before, usually when his blood pressure drops.  So, I finally got him down on the floor and lying down – where he stayed for about an hour.  No need put all details in, but eventually he was showered.  The shaving was a chore, even with the electric razor. At least, he didn’t confuse the toothpaste with the shaving cream like last week.  Often, like today - I shave him myself to be sure he gets a nice close shave. 

Later, we had our late morning “coke”….as in coca cola! J  About this time, he seemed to think we had people in the house and was very concerned about it. I assured him it was only the two of us.  After his lunch and a nap, we were preparing to leave for an early dinner with Don and Carol Speight.  Whenever we have plans, I usually tell T** at the last minute b/c he gets very concerned about the details.  The same was true today….he was very worried we would not be there when we should be. 

We made it, and during dinner, he barely spoke. This is not unusual either, now.  He seemed to listen to the conversation, but is unable to join in. We had bought a birthday card for Don whose b’day was today. T** signed the card, but I had to tell him what to write….and spell happy birthday for him - one letter at a time.  This is sad. He is a very intelligent man who always took great pains to spell correctly and use correct grammar.  When we got home, things were still not “there”….he could not follow the simplest direction when getting ready for bed.  I had to repeat things over and over and end up dressing him. Finally, he was in bed by 8pm. I felt relief….that I could have some uninterrupted time….and guilty for feeling relief.  That is one of the constant “rubs” ….i desperately need time alone, but I feel guilty if I do something without him, even go to my room and do facebook or read.  We have recently increased his medication, but it is not working.  Significant. Times are changing again. We are not on a plateau….we seem to be on a more slippery slope.  I have no tears anymore;  sometimes  I am torn between tears and some kind of hysterical laughter.  

2nd Post

Confession: 

Sometimes, I can hardly do Facebook.  Of course, no one makes me do it, but I often find that what I perceive as others’ normalcy only serves to increase my feelings of how abnormal my life seems. So, I often have to just turn away and take a deep breath to avoid longings which cannot be realized and which, if take root, would lead to envy and bitterness. Those same feelings can occur when I see couples in a restaurant, when I see tickets available for an event I would like to attend,

My life has a “new normal” and involves reducing expectations, looking at life through a different scope, and a constant awareness of things I can be thankful for.

I’m still working 30 hours each week, and while it can be stressful, I actually excel in this job and it is my only outlet for interacting with other people and for feeling like a “person”. Maybe it’s hard for anyone to grasp why or how I would NOT feel like a person, but after 7 years of care-giving and submitting myself to that role – that is how it feels sometimes. For sure, my feminine person is buried deep within my person. I hardly think about what I put on, rarely shop or buy clothes, don’t have anyplace to go which requires “dressing up” or looking special. 

Lest I depress any reader, let me move on for a bit to more positive realities. I am thankful for many things. Maybe I will just list those:

My home – that we have been able to stay there, keep the house fairly well-maintained and paid for.

My children – they are a constant source of support even while they grapple with the loss of their father….and let me diverge here for a moment….in all reality, they have lost their father and I have lost my husband.  For Tom was the ultimate father in terms of unconditional love and support for both Paul and Stephanie. His love is still there, but that precious interaction they used to share…and looked forward to…has been almost taken away. I can see in his eyes, and sometimes he is able to express, that he just adores them still, but they miss the dad they knew and have had to adjust to their father as he is. 

At another time, I will talk about my own loss of my husband and friend.

Getting Started

Confession: an open acknowledgment of feelings; something admitted or disclosed. 

A bit of context for this blog ~ 

7 years ago, Tom began to experience problems with memory.  It was attributed to “fatigue” , and he stopped  working  as usual – no more ER, no long shifts, no nights. Within 7 months, he had retired completely on disability – we had sought a diagnosis and finally were given “Mild Cognitive Impairment”, a precursor to worsening dementia.  From the beginning, I began to take over management of our lives , including all finances, car maintainence, home maintainece, etc., in order to keep things going and to avoid more stress for Tom. I also took a job working 30 hours each week. Over these 7 years, Tom has continued to decline even with medication. He developed symptoms of Parkinson’s along with the progressive dementia and has finally been diagnosed with Diffuse Lewy Body disease.  It continues to be a challenge every day and a journey which has required many changes in order to keep life going. This blog is an attempt  to relate some idea of what this life is like, to create a place for me to express myself and  hopefully to continue to grow.  I never want to diminish Tom or say things which are disrespectful, but if I am to be honest and anyone is to know about this kind of life – I will  avoid “sugar-coating” the situation.  7 years is a long time to live this way, and I feel the need to put some thoughts and observations in concrete. I don’t want sympathy or pity. I never mean to shed a negative light on anyone, but again…if I am to be honest and transparent, I may “step in it” or step on toes from time to time.  I hope someone may learn better how to “friend” those in our situation. I may go back to some previous journaling from time to time. Whether anyone read or not,  this is my forum for confessing...to openly acknowledge my feelings and thoughts.