Daily Challenges

Every day I find myself face to face with new challenges.
It's been almost 6 months since my husband moved into heaven.
I miss his presence terribly. I guess the truth about our situation is that I had many years of caregiving for him that I have already missed him for many years. There was comfort in his presence. We couldn't have important conversations. Everything that needed taken care of was handled by me. Ultimately, the responsibilities were all mine, yet throughout the day I could speak to him, I could hear his voice, I could touch and feel him and I could say I loved him and he could respond.
There was security in his presence and that sounds funny since he wouldn't have been able to help me if something had happened to me. But now I second guess everything I do, like climbing the roof to clean the gutters or walking outside with the dogs in the night thinking I may come face to face with any of the country wildlife. I now think before I act, who's going to take care of me?

Some of the challenges have been hard, some have been overwhelming for the moment and some have been pleasant. Sometimes the challenges mix together.
My husband and I didn't live for tomorrow, only for the day so we never planned for our future (EPIC FAIL). That has been it's own challenge adjusting to a new lifestyle but I'm learning and it's ok.
I wanted the kids to have something special from their father so I had the diamonds removed from his rings and gave each one of the kids a diamond. It meant so much for me to be able to do that for them. Handing the rings over was a challenge and took more emotional strength than I anticipated, meaning not a full blown break down just some tears while explaining what I wanted. Why did it seem so hard when I really wanted to do that? And it brought me so much comfort and joy that they each accepted with love and appreciation. I am truly blessed.

Some challenges are overwhelming. Interrupted sleep continues to be an issue. I think that has added to the emotional melt down a few times. In particular I spent the day in bed sobbing because I just wanted my husband back but the cold hard fact is, it's hopeless that will happen. Hopeless has got to be the worst feeling ever.
I am glad that feeling passed. I hold fast to the hope I have in the Lords promises. Though some days I barely hang on. I suppose those are the times He is holding on to me.

I am grateful for His grip!

I started having enough issues I associated with the sleep problem, I started feeling anxious whenever I would get in my car to go anyplace. I wanted to go places but had this internal jitter. It was becoming frustrating. 
The sleep issue needed addressing so I visited my Dr again. I think I've seen my Dr more in the last few months than I have in the last few years. Seriously, grief can make you feel sick! Anyway, We chose a non habit forming anxiety med to take at night. Give it time to work, she said.

While there I had to update my information.
Another challenge.
Marital Status: Widow
I stared at it for a little bit before I could write it, but it is what it is.

I decided I needed to clean out and wash my car. That doesn't seem too challenging, does it?
I hadn't done it in years! But the physical wasn't the challenge.
Without doing it on purpose, everything on the passenger side made me think of my husband as I washed it off. The inside handle, the overhead grasp bar, the window. 
As I started to scrub the floor mats, I halted for a moment as I was cleaning the passenger one. My thoughts as I watched the water was, there goes another piece of my husband.

The most recent challenge took my breath away for a moment. Standing in line at a store checkout that was close to the front door, a man started walking in. I recognized the style of shirt, the jeans the partial view of his face and hair, and my heart stopped for a moment because he looked so much like my husband, he even walked with the same stride. I could only stare at him knowing it wasn't him as he walked in and past me. 
I was able to keep it together long enough to get to my car and have a cry. 

But I believe the new meds might be helping. I started back volunteering.
I noticed the inside jitter is gone.
I feel like I have some control over the random emotions.
On an occasion I've slept longer than 3 hrs! 
And once I slept for 7!! WOO HOO! I was a new woman!
Mostly though, I still wake every 1 or 2 hrs and when I do get the rare longer stretch I am ever thankful for it.
How do I think the new meds are helping the sleep issue then?
The fact I can't sleep doesn't bother me as much anymore LOL!

I'll close on something positive.

When you're grieving, not even beautiful days can feel beautiful. But then, there are the days when the day, mind and heart all get into sync and you know there will be more beautiful days to come. 
One day at a time. #comfortcoffee

This Thing Called Grief

I wander.
I walk from room to room, looking out the windows and then standing still. Not looking for anything, not looking at anything. Then I wander back to my computer where my friends and my family are.
Surrounded by photos and mementos of and from loved ones.
Memories.


I wonder.
I wonder what I will actually get accomplished today. I wonder if I've waited too long to get anything accomplished or is the attempt just a start that wont get finished. I wonder what tomorrow will bring and am I going to feel like my life is surreal for a long time or the rest of my life.


I pray.
I pray for sleep, but it doesn't come.
I pray for some peace, but I still feel slightly numb. Maybe that is the peace I need?
I pray for direction for my life, but I can't see it. I'm still searching and asking and waiting.
I pray for a purpose I can't find.

My mind wanders to happier moments. It's like it's put up a barrier to try and prevent me from remembering anything negative. Even though I do remember the difficult times with my husband, they are easily swept away. I wonder if it will always be like that. I'm not exactly sure how I feel about that perception. It makes missing him harder to accept.

Sometimes I wonder if I'm just alive, but I'm not living.
I'm just wandering through the motions praying for some resolve.

Pale Thin Line

I've been trying to forge out a life for myself. One that is absent of my husband and it hasn't been easy.
But I am trying .

I even attended the church I am a member of, for the first time in 8 years!  I was prepared for sobbing, actually I was afraid of sobbing. I didn't want to do that and my fear of it kept me away. I had to remain in control of my emotions before I could make that move. I'm not in control of my emotions though but I went anyway at the invitation of a friend. HA HA I was invited to my home church!  Much of my fear of going was unmet and the service and reunion with the people of my heart went well and almost tearless.

My imagination had the better part of me, as it did when I attended a wedding of a sweet young woman I have known almost her entire life. Weddings can be emotional and I wanted to be there. I also wanted to feel like I wouldn't fall apart, so I took a friend. Her husband had passed away last year and I asked her to be my plus one. I feared the sobbing. But the wedding was beautiful, the reception was fun and I even turned to my friend and said, "Hey, now we are eligible to catch the bouquet!" The entire event was wonderful and my fears were unmet.

I'm trying so hard not to fall into a state of major depression that it took the gentle encouragement of my "God sent sister" to show me that I am so busy trying to see the signs of the BIG drop off to the depression pit, I'm not noticing the earth moving under my feet.
Grief doesn't come with a book or a step by step instruction sheet. Everyone goes through it differently and at their own pace. She pointed out things I had relayed to her, I don't sleep well, I eat just to eat and have gained 20 lbs since my husband went into the hosp in Jan, I cry for no particular reason. I'm kind of lost without a solid purpose.
These things sound like grief but after hearing these words echoed by my friend, I also realize these could be signs of creeping depression. That line can be so thin and barely noticeable. So I visited my Dr today and, cue the tears, asked for an ounce of prevention in an anti depressant until I can get out of this circle of symptoms. She agreed with me.
I KNOW what I need to do, Think about what I put in my mouth, move my body, sleep regular hours, stay hydrated. I just need a jump start to move in that direction consecutively.  Once my mind is functioning properly, everything else will/should fall into place. So, I asked for a short term plan. Now short term does not mean 2 weeks. So my short term can be anywhere from 6 months to 2 years, My Dr and I will keep up with how I'm doing and I can depend on my friend to honestly tell me what differences if any she notices. I have a plan. I think it's a good one.

Who Am I?

I'm struggling to find my own identity.
For so many years it was entwined with my husband and children.
My children are adults now and although I am still officially Mom, it's more of an honorary title.
The chords that held me with my children were untied as they became adults and moved into their own lives with spouses and children.
The bond that held me and my husband together was torn away. My identity entwined with him is now gone. I am no longer Mrs. but it goes deeper than that it feels like, Am I still honorary 'mother" to my husbands children? Am I still the grandma to my husbands grandchildren? Are my sister in laws and brother in law still my family? My head and heart still say, yes I am, they all still say yes I am.
My life joined to my husband became one flesh, now I feel wounded without him.

I'm trying to let the wound heal though.
I have found a wonderful volunteering opportunity with Habitat for Humanity that has been good for my heart and mind.

I come and go as I please, although I still find myself watching the "time to get home" I eat when and what I want, mostly what is not really good for me. I sleep when I want,and the only one that complains about me not going to bed is my dog.

I'm learning to budget carefully and I'm adjusting to the life style changes.
I attend grief recovery.
I try new things, some by choice some by circumstance.

I'm trying to forge out a life for myself that will no longer include my husband and it's painful.
I still have bad moments that catch me off guard and can even send me to my bed sobbing.

Sometimes I forget he isn't here anymore and I try to shop for food or clothing for him. Then I am  snapped back to reality before I finalize any transactions and replace what I am holding at that moment.
Some times I wait for him to come home, or call out to me.
I get melancholy.

Some days are really good though. And progress is felt. I finally got words and motion to sync up and go together.
I still advocate for LewyBody dementia. Until it's gone or I am I always will. Oh! and my blog, thieflewybodydementia.com , won an on line award for being a top 25 dementia blog. WOOT!

My husband would have been very pleased.

I've been absent from the blog and caregiver world. I tend to get overwhelmed with others caregiving grief on the large scale I was participating in but I still try one on one and I'm managing to process that more intimate type of support. Maybe my path through caregiving has turned into a trail for now. I don't know. I'm still finding out what I like and what my identity is. It's not an easy process.

Today I made oatmeal

I thought I had rounded a corner of sorts.
Spoke with Habitat for Humanity and I'm looking forward to being involved in something constructive and less self. I even made a huge leap in self control when a day with errands that could have been emotionally breaking ended just tired.
Those errands included a visit to the funeral home to order my husbands V.A. plaque.
A final filing of the guardianship I had to file yearly, this one included his death certificate.
And the visit for information on volunteering. During that visit I told someone I needed to find a purpose for myself since my husband died. I didn't even choke up when I said it. That seemed huge to me.

Yes, it seemed that things might just be melding into a new normal.

This morning, I made a bowl of oatmeal.
As I stirred it, the whole world seemed to collapse and my tears fell with it.
UGH!
This grief roller coaster is as hard as the lewy body one.
I just want to ride the kiddy train now.

Do I have a purpose anymore?

This last week I've had more emotional days than I would have liked.
The numb is almost gone.
The slow motion is better, I still need to get motion and sound to sync up.
It's all coming together. I hope.

NOBODY over analyze the following

I now feel as though I have a better understanding as why when one spouse dies, the other does shortly thereafter.
For almost my entire married life I was blessed to be a stay at home wife and mother.
I worked when the going got tough and the tough had to get going and stopped when my husband had things financially stable for us, and at his insisted request.
He always liked the fact I was home.
Most of the time I liked it too as it left me available for our children and my husband.
Almost all of my activities were those my children or husband were involved in.
Other than the Ladies Church class there were few things I did separate from my family.

Now my children are grown, married with their own lives. My purpose was fulfilled in their care, guidance and social development.
Now that my husband is gone, my purpose as his wife has been fulfilled as his lover, helpmate, sparring partner and more recently caregiver. 

So now what?
I've not been driven by anything towards anything.
I'm feeling empty and adrift.
My days are occupied and I appreciate that.
Yet I've pondered what the next steps are.
I've prayed for guidance and direction.
I don't want to live the rest of my life just going through the motions.
I'm tired and I'll be glad when my time here on this earth is over so I can just go "home".
I'm not looking to make that happen any sooner than it is supposed to so take a breath.

I hear and read, "Take care of yourself. It's time for you". Heck, I've even said it to others and to myself.
"Find something you enjoy" I just don't know what that is yet.
"Don't make any big decisions for at least a year." Good advise, now if I could just feel confident to make a few small ones.
"Don't forget to eat" I WISH that was a problem :/
I realize this is the process but my oh my how much effort it takes to even breathe some days.
So I need to find a way to wiggle out from under the weight of this grief, even a little.

And, I may have found my wiggle room.
I don't want to stay home taking care of the yard and the house all the time.
I want to be able to do something for someone else.
So I think I'm going to check into volunteering for Habitat for Humanity.
I enjoy working with tools and being able to bang on things in a productive manner seems like a good thing.
Maybe I can hammer out some purpose.

Revolving Door of Grief

Over the last few days I've been experiencing some anxiety.
I also have this very odd sensation that my husband will just walk in the door.
So it feels like, I'm waiting for his return.

Yes, I do have a lot of things going on and I'm trying to keep them prioritized into, rational and irrational, justified and unjustified, necessary and unnecessary.
I'm trying to continue to find where it is I belong in this new life. Everything feels so hard. I struggle with concentration yet and I'm still locked in the inability to sync words and actions. Is this what A.D.D. feels like? Bless those that have that, if it is.

I think the worst for me is the "self" bubble. I have a difficult time not thinking about me and my pain, physical and emotional. I'm either disconnected to others or so empathetic that I feel their pain and anguish.

All of this is getting a little better though, just progressing slowly.

I try, just not too hard, to stay in the caregiver loop and I want to stay in the Lewy Body one as well, I just find myself annoyed in general and as of today angry at my husband.
I've been reading articles relating to dementia and caregiver comments as well as things from others that have lewy body.
I read how they are still fighting their disease by exercise or actively involved in therapy. Traveling as much as they can, willingly participating in activities as their minds and bodies allow.
And I'm jealous that they do.
I'm angry that my husband wouldn't even try.
I'm angry with myself for being angry.

That's today though.

Tomorrow will probably be some other off the wall emotion.
I'll just need to get these tears over and done with first.

The Horn Blast of Grief

My husband bought this very loud horn once. He found it at a flea market and he and a friend each purchased one. Why did they want a loud horn? They were grown up boys. They liked honking it when people least expected it just to scare or startle them. Then they would cackle in heaps of laughter at their antics.
I myself have been the recipient of that horn blast on numerous occasions.
I knew it was in the house, I even knew where it was. There were times I caught the sneaky look in my husbands eye as his gaze was fixed on it's location or I would catch him in the act of retrieving it. Even after I said don't honk that thing at me, as soon as I turned my back to him, he still did it anyway. Sometimes I would jump even though I knew it was coming. But his most fun was catching me off guard and blasting me causing me to yelp! That usually happened when I was busy in another part of the house or outside and did not see or hear him come home.

I know, you probably think, the girl is lost to grief.

Well, no, not really. That crazy horn makes me think of grief though.

You see, like the horn, I know grief exists.
I know that there will be times I will need to be prepared for it to hit me.
All of the BIG things, holidays, celebrations, family gatherings.
I can cover my ears and wait for the honk , power through it and move on.

Then there are the small triggers, unexpected mail, a song on the radio, smells, tastes, sights, stillness.
I may not know it's coming but I understand why when it does. Many times I can't hold back the tears. I just go with the moment, have a good cry and move on.

But oh, those silent moments when grief hits you. No warning, no trigger, just BAM!
That's when I YELP the loudest. When I feel the worst. That is when I think maybe I have lost it.
That is when I feel most distressed and confused. I have no idea what I'm crying for, I'm just crying or sobbing.
My faith tells me it won't last forever. I just need time.

Ecclesiastes 3:1,2,4

1 There is a time for everything, and a season for every activity under heaven: 2 a time to be born and a time to die,... 4 a time to weep and a time to laugh, a time to mourn and a time to dance,

The Mourning...and the Mourning After

All but one day, I feel like I'm on auto pilot.
I can tell it's wearing off though.
Reality is chipping away at the active defense I've put up.
Some days, I would like nothing more than to collapse into a puddle of tears or scream to the top of my lungs until I couldn't make any more noise and can barely breathe.
I hurt, physically besides emotionally but I can't pin point what hurts.

For an unknown reason, I had a very emotionally difficult day yesterday. Nothing significant happened to cause it, they just happen.  It's not the first time, I'm sure it wont be the last but I trudged through to the end and everyone survived it.
This morning, I finished my coffee, walked in to the bathroom to get dressed for the day and realized. I never changed out of my clothes from the day before! I was still fully dressed even to my socks! Must have been tougher on me than I thought. 

Now here's the odd part, when my husband left me before we knew he had dementia, I felt the same way.
My feelings are exactly the same with the exception that, I'm not angry at him.
This time I'm not fueled from the hurt, embarrassment and suffering he caused, seeking to inflict misery on him.
This time I don't feel rejected or worthless.
This time I don't feel shunned or ashamed.
This time there is no hope of him returning to me, ever.

I feel hollow/numb/ with an outward layer of emotion.
Like a newly painted box.
From the outside you see it's a box.
One would wonder what treasures it might hold inside.
But when you look inside, there's appears to be nothing there.
And upon touching it, you notice the paint hasn't dried yet.

I miss so much the reconciliation we were making before it was cut off by Lewy Body Dementia.
I miss his presence, even all the "Honey" he gave me.
I miss the dreams we never got a chance to start.
I miss giggling at the confusion that made us both laugh.
I miss him shuffling over to my bed for a kiss goodnight.
I miss his shiny hazel blue eyes.

I miss him and what should have been.
This time as well as the last.

Good Night, Honey. I Love You

I still say these words audibly every night.
The dog must think I'm talking to him. He snuggles in close.

My tears fall.

At times, I find myself missing my husband for all the things we didn't have.
For a  few years, due to his Lewy Body dementia, we didn't even sleep in the same bed. He didn't always know who I was and much of the time didn't trust or like me. I soldiered on with his care and my love for him. The trenches of caregiving are not an easy place to be a lot of times.
Knowing my husband is no longer suffering, should make his absence feel "easier" for lack of a better word. But it's doesn't.

Before his diagnosis, he had issues I can now look back at and say were a result of his lewy body. Those issues resulted in him leaving me and being gone for 18 months. The odd thing about the feelings then and now, his absence still feels the same, I'm just not mad at him this time.
Where there was anger towards him and yet, still that small chance of hope for a reconciliation that did come, it has now been replaced with feelings of being hollow and the stark knowledge of "he can never, ever, EVER, come back".
You would think I would know what to expect, how to handle the next thing.
But I don't, I still hurt deeply inside and spend a lot of time praying for peace and guidance for my ever changing life. 

Bird Houses and Feeders

My husbands confinement to our bedroom by choice and circumstance left me scrambling for things to do to bring him some enjoyment.
I eventually purchased a bird feeder for him to watch and had a birdhouse made for him.
He really enjoyed the birds, we even had the pleasure of a visit from a rainbow bird!
We had never seen one before so it was really a treat and even more so with it's return the last couple of years.
Since taking the hospital bed down I realized there was no reason to keep the feeders and house where they were located since I would not be able to enjoy them from my location.

So, I moved them,

and their relocation,
moved me to tears.

More changes.
More moments to get through.

The Daily Climb

I actually think too much about getting sucked into depression.
As of today I feel like I can confidently say I am not suffering with depression, I see a flick of light at the end of the tunnel, I have hope and I believe that the days will be better, I still have wants and dreams and ideas.
My future, although uncertain, doesn't feel bleak.
I am however sad, sad very deeply. I miss my husband, even though he was cranky and cantankerous and demanding and spoiled. He also had a sweet side I try to think of the most.
Because of him I wanted to be a better me, at times, in spite of him, I wanted to be a better me.
I still do for those same reasons.

My concerns for depression rise when I see and read other caregiving stories or comments about the passing of loved ones. not recently but months and even years ago. Now, I know there is NO time table on grief so that's not what I'm saying.
They seem stuck in a loop of coulda-shoulda that weighs them down with guilt like carrying a bag with heavy rocks.
This climb over the mountain is hard enough we don't need to be carrying any bags, let alone ones filled with guilt rocks, our own or anyone else's.  I want both hands free to grasp something I can cling to when I feel like I'm slipping down the slope of sadness. I need those that can show me the foot holds, take my hand, encourage me to take a breath, have a good cry when I need it, allow me to regroup when I struggle and I think I can't walk any more. I need those that will then stand me back up to continue the climb with me, be it beside me,
before me with a hand up or
behind me with support.

Yes, we all have our own feelings of coulda-shoulda. I think those are natural feelings for anyone at any part of our lives. Yet, in turn I want to be an encourager and not a rock adder.

I shared this with others a few days ago,

"If there was one thing I could go back and do different as a caregiver to my husband, on a good day or even a so so day, I would have taken a video of me telling him I love him and hope that he would respond with I love you, back.
Hind sight for me.
Seems like all I did was video the moments when things were bad so I could show the Drs his Lewy Body behaviors."

One coulda-shoulda comment left me with the feeling the responder had too many rocks in her bag. I wanted to remove some.

My reply:
"I wish I had done things differently too, been nicer, more patient, stopped asking questions I knew he would struggle to answer, helped more, helped less etc etc, but I could do that to myself all day every day and it would not have changed to outcome at all.

I did the best I could with what I knew, learned and had. I think I did a good job of it too considering all the ups and downs of lewy.

I'm moving forward, albeit slowly, but still moving towards being a whole person, proud that I made the effort. I educated, I cared physically and emotionally, most of all I loved my husband.

If a stranger told me I had let my husband down because I didn't do one more thing differently or try one more thing, I would probably punch them square in the nose. Nor am I about to self talk myself into guilt or depression. My thought was an observation, not a (self) chastisement. Maybe someone will use it to their benefit and God bless them for doing it.

You deserve a better trip into happiness in your life. The guilt train wont take you there.

 Psalm 94:18

When I said, “My foot is slipping,” your unfailing love, Lord, supported me.

1 month

1 month
the calendar verifys this.
How can it be a month already?
Some days if feels like it happened yesterday, sometimes even today.
Sometimes it feels like a lifetime has passed.
And sometimes, it doesn't feel like it even happened.
I'm still watching the clock to rush home, or waiting for the "Honey" or counting the plates to serve supper.

#death, #grief , #mourning