3rd Year and Final Blog Post

Saturday, Feb 11 2017 my husband has resided in heaven for 3 years.
3 years! There are still days when it feels like the other day and days when it feels like such a long time ago.
I'm adjusting, adapting, accepting. You would think by now I would be through but there are still situations that occur that I need to adjust to. Changes in my life I need to adapt to and changes I must accept. Thus is life and this is mine.
Some days I want to scream "You left me behind"
Some days I smile at the thought of my husband.
I can't think of a day that goes by he doesn't pass through my mind.
Tears aren't sitting behind my eyes although I can still get caught off guard and fight them back.
It's progress.
I make plans, I'm active in caregiver support and Lewy Body Dementia support. I co authored a caregiving book. I've traveled. I enjoy my job, I love the time I get to spend with my family.
I stay busy on purpose, sometimes too busy but with the help and guidance of the Lord I'll find a balance.
I'm doing ok.
So, in the words of an old Gospel Hymn

"I don't know about tomorrow

I just live for day to day
I don't borrow from the sunshine
For it's skies may turn to gray

I don't worry o'er the future
For I know what Jesus said
And today I'll walk beside Him
For He knows what lies ahead

Many things about tomorrow
I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand" - Ira Stanphill

Breathe, step forward, repeat

The seasons changed from Summer to fall.
The fall changed to winter even though the temperatures haven't realized the time of year it is.
The time changed, the weather changed, the leaves changed and fell.

The holidays are in full swing and almost over with now. This year I decided I needed to do something, anything more than I have been in the past few years, especially last year. Last year was the first without my husband. Had it not been for writing it down I probably couldn't tell you what I did last year.
The year came and went at break neck speed for the longest time.
I read something that was the greatest description. Sleepwalking. The first year I was sleepwalking but functioning. The second year I'm still sleepwalking but waking periodically

When that happens I stop and think to myself, Is this really my life?
The answer is always, yes.

So as the changes still come, I am learning a new normal. Something I had to learn to do as a caregiver, a new normal, often.
I am embracing the moments I can spend with my family. I am letting go of self doubt and I'm embracing the job I love and the new friends and co workers my heart has made.

I prayerfully prepared for the worst of emotions as the big things happened, Thanksgiving, Anniversary, Christmas. The emotional worst didn't happen but the emotional minors did. I still get caught off guard by the little things sometimes. A friend warning me about social media "widow trolls" asked me if I had changed my relationship status from married to widow yet. No, I can't bring myself to do it. A little word but it has a huge impact on my emotional well being. My heart is still married. I miss my husband, maybe I always will. Still taking one day at a time some days.

18 months

It's not as consistently close as it used to be but I still see it. Out of the corner of my eye I keep watch on it.
"Stay busy and it wont bother you", I tell myself. That's true to some degree.
Sometimes I have to dodge it. I know it will sting so I drop everything and run around a corner to hide from it. My heart racing and breath heavy but I try to keep those in check. I close my eyes, take a breath and step out to carry on with the day.

It's been 18 months since my husband moved into his eternal home.
A year and one half.
I still feel like I need to fight to get through some days. Mostly the all alone days.
They are getting better though.
I'm not wallowing around in the grief, it just feels like a little black cloud that comes out of nowhere and I can't outrun or hide from for very long before it rains on me.

This is not my first experience in dealing with death. My mother died, my grandparents have all died, friends and loved ones have died.
This, this is so different in many ways.
One of the oddest is the change in relationship with others. This is going to sound funny so bear with me.

I LOVE the job I have, the people I work with, the people I associate with! I'm happy, healthy, ok ok I have some improvement that can be made but don't we all? I'm emotionally stable. I'm truly doing well overall and fighting grief is all part of the process. In other words, I'm normal. Stop laughing now.

For a little while I wasn't sure though. 
I was experiencing something I couldn't quite put my finger on. I finally asked other remaining spouses if they had the same thing and the answer has been YES. So, here it is.

At first there was a detachment to all others. It felt like I was all alone in a very crowded room. Then I connected to a core group of family but it felt like everyone else was far away. In making progress it started to feel like I was getting closer to others but there was a wall between us. Eventually the wall thinned and came down. Yet now, even though I can  appreciate and enjoy others, I have this odd sensation that we are still separated by plastic wrap. That's the best I can explain it. I can reach out and touch and interact but still not making complete contact with everyone. It's a very odd sensation and I hope it wont last a long time. I miss...me.

I'm ok even when it doesn't feel like it.

It's been over a year since my husband passed on to his eternal home in Heaven and escaped lewy body dementia.
I'm doing well, I attended grief recovery.
I have interests, I have friends.
I'm carving out a new life for me.
I volunteer so I can help someone else, I work.
Life keeps moving forward, I'm moving with it.
My heart is still married.
The days are softer, I can speak of my husband without tears escaping. 
I can laugh and remember fondly and remember the truth about our life and how hard it could be at times. 
I didn't place him on a pedestal.
I'm doing the things I would have wanted had I been the one that passed first. 
I'm not lonely, I just don't like being alone for a lot of things.
Yes, I'm doing well but even in that, I occasionally have a day when I feel overwhelmed by his absence and I missed him so very much.
It's normal and it's going to happen again I am pretty sure.

Holidays, Anniversaries and We, Oh My

Holidays, Anniversaries and We, Oh My

I knew they were coming. You can't stop them from arriving so I prepared myself for them. I prayed for peace and strength of heart. I think, to some degree I braced myself for the emotional upheaval by putting up a wall of emotional distance, I chose to do something very different for Thanksgiving. The day turned out to be really good.

I got through it.

2 days later was my anniversary, or , would have been my 33^rd anniversary. I spent the day not rehashing the bad but appreciating how my life was changed for the better when I met my husband.

I then gifted myself with a bedroom makeover project. It's time for a bedroom for me. I had already removed all of hospital equipment. I knew the floor needed new carpet. It was a major idea but I started stripping wallpaper that day.

I got through it.

It was a few days later when I was knee deep into my project that emotional wall came down and I had a melt down. Part feeling a little overwhelmed by my decision, part feeling like I was removing my husband from the intimate part of our house.

I prayed for peace, because it hurt.

Christmas was coming. My mind went through all of the traditions I normally carried out but had scaled back when my husband became so ill. 

Was I going to do those again? 

Could I even do them? 

It's not that I hated Christmas, I love Christmas but I wasn't ready for the activity that required so much emotional involvement. 

I kept recalling that the last Dec seemed to be the drop off the cliff for my husband. I wasn't trying to think about it, it just kept creeping in. Again, I placed that wall of distance up and just wished Christmas would quietly slip by without the big production.

I stayed busy with work and that helped.

I thought about sending Christmas cards, but I never did. The cards received were eventually opened and appreciated but they too were set down in a pile. It was truly a struggle for my heart every time I checked the mailbox and got a card. The worst was when a card arrived addressed to both me and my husband, from a friend, whom knew.

I kept things very simple and quiet. A small table top tree was displayed so I didn't appear to be a scrooge and I made one small batch of cookies on Christmas day at the request of my son. I put the tree on the table a couple of days before , it still had one ornament from last year. Plugging it in was the best it got. It was Jesus birthday anyway so I didn't feel bad for basically concentrating on that and asking Him to carry me through these difficult days and nights.

I enjoyed the happy times with my children and grandsons

I got through it.

New Years Day always had traditions too. I didn't normally care for them but they were important to my husband so every year I cooked his New years tradition.

My FaceBook status: Black eyed peas and hog jowl cooking. Some traditions are hard to break even if you don't necessarily like them and now they make you cry.

I got through it.

January came with it's own issues. The previous Jan was a struggle for my husband and his eventual admission to the hospital and subsequent Hospice inpatient stay. The tears seemed to flow on their own. No purposeful lingering or reflections about the year before. As if my mind did as it chose. I accepted it as it came and acknowledged the thoughts. I also reminded myself it was normal and I was ok and would be ok.

I found myself still involved in my bedroom project. It seemed like it was taking forever. I also made one other decision to get myself out of the money crunch so I could do a few things for myself, like my bedroom redo. I had my satellite turned off.

I don't miss it.

February came. And with it the realization that our, my 15 yr old dog had a tumor. I had to put Lady, aka Elvis because my husband couldn't remember her name, down on Feb 9^th. Then the 11^th marked the one year anniversary of my husband's heavenly birthday. I chose to work that day and I realized my emotions were sitting right behind my eyes so I stayed in my office catching up on paperwork most of the day with the blessing of my boss. She just let me do what I felt I needed to get through the day. Her support has been a true blessing. I took a long lunch with my daughter and son in law. I spoke, text or received a text from each of the other kids. I have a very supportive family. I love them all so much. We lean on one another and build each other up.

The kids and I decided to have a commemorative gathering but we couldn't all get together on that particular day so we chose the weekend. Sat was in the 70s! What a beautiful day! BUT, we had already set aside picked Sun afternoon. The weather took a turn and it was 31 degrees, and windy. Due to the cold, some of the family couldn't attend but those of us that could, bundled up. We wrote notes and attached them to balloons. They were supposed to sail off into the sky. Umm yeah, things didn't go exactly as planned. Many of the balloons got tangled in a tree. Thanks wind.

  But I will say, the tree was pretty.

Afterward, we went out to eat.

We got through it.

Our daughter said it beautifully: “This last year has been a stinging year of "firsts" without Dad. First birthdays, first holidays, first everything. Tomorrow is our last first because tomorrow is the first anniversary of Dad's passing. And while we miss him like crazy, I take comfort in knowing his year was profoundly better than it would have been had he been with us still. His first time to be completely healed, first time seeing Jesus, first opportunity to worship in God's physical presence. What a sad year it's been here on earth, but what an amazing year for him it must have been. Tomorrow I will not mourn, but instead I will celebrate because this last year was Dad's best year, by far.”

So one year is passed. Some days it still feels like yesterday. Some days it feels like a lifetime.

I'm moving forward, one day at a time still. I make plans, I have have fun. I laugh, I still cry, not as much. I finally finished my bedroom project with the help of my daughter and son in law. I'm making a life for me and I can talk about my husband with fewer tears of sorrow. My biggest thing I realize is that I still refer to “us” “we” “our”. I wonder how long that will continue? However long it takes, I know one thing.

I'll get through it.

Milestones

I think I reached a milestone of sorts the other day.
Another "click" moment if you will.
Alone time has not been easy for me. The silence is very difficult but with lots of prayer, I am learning to adjust and be okay with it. Since I started working / volunteering, I've kept myself busy so I don't have to face too much alone time, but the inevitable happens on days off and I am plunged into the silence. I work in the yard and in the house as it needs. The silence looms like a heavy cloud.
I finally passed through some deep feelings and I no longer go to my bed with a heavy heart and cry, I no longer fall apart where I stand, tears don't come every day for some reason another.
What I do have are moments when I feel like I'm going to cry, busy or not. I don't have those moments every day, mainly when I am alone do they sneak up and sit behind my eyes ready to roll. I blink them back.
But I noticed this last day I was alone, I didn't have the urge to cry at all. And that was a huge thing. I realized it while I was snuggling into bed and reflecting on the day.

I debated if I wanted to share this encounter because I know we all grieve differently but it made a huge impact on me.
I met a woman one day, her face reflected that she was obviously distressed and sad. I asked if she was okay. She replied that she was having a hard time with things since her husband died and being a widow was so hard. For a moment I thought she was going to cry. I thought I was going to cry. I told her my husband had died too so I understood a little of how she was feeling. We shared a little between each other and I wished her well as she walked away. Her grief was so obvious and it hurt my heart to see. I don't remember if I prayed for her but I sure hope I did.
I encountered her again a few weeks later. Same disposition, same woe, same distress in her face and appearance. I recognized her grief. I have had that extent too. Again, I asked her if she was okay and again, she relayed the same story. I didn't remember if I asked her how long her husband had been gone the first time, I assumed recently based on her level of grief. I remember asking this time. Her answer, 8 years. 8 years! I was stunned and afraid and felt guilty.
I was stunned by the length of time she was feeling this level of grief.
I was (am) afraid that I would get stuck in my own grief and not move through it like that. I can't imagine feeling like that for such a long time. I can't imagine feeling like I do right now for such a long time and that is where...
my guilt fell into place, She was grieving that deep after 8 yrs, It's only been 8 months and I don't even feel that intense any longer.
It doesn't mean I don't love my husband, just that I know I need to move forward to have a life without him. He will never come back but will always remain a huge part of my life for the rest of my life. His death was like a physical tearing away and it hurt (s) but there is healing and I embrace that. I pray for it actually.

So I went an entire day without wanting to cry and it was like a relief. I don't expect every day to be like that but at least I know they are possible.

The next day, while working, a coworker and I were retrieving items from an outside storage area and stocking them. It was overcast with a threat of rain and a little dreary and cool. We were carrying the items on a furniture trolly into the store . After we it loaded, we got a running start with it to go up the slope toward the main building. On the way back down I had a "free spirit" moment and sat on the trolly. I tried to encourage my co worker to ride with me but she declined. Although, she did offer to give me a push, and she did. We were laughing and squealing like school girls when the trolly headed for the side of the storage building. And for a moment, after such a long time I thought, "It feels good to be alive"

Cornbread and Buttermilk

I've been staying busy, a good busy.

I feel abundantly blessed with a job that fills my desire to help others and give back.

I meet the most interesting and precious people. I meet some cantankerous ones too but they are few and far between.

I feel like I'm doing well. I'm sleeping quite well and I no longer need my antidepressant or anxiety meds.

I am glad they were available to help me cross that deep part of the river of tears.

I'm finding joy, I laugh, hard sometimes. I cherish whatever time I get with those I love. I make plans, not far off but still make them. I look forward to things. I'm learning to navigate this new life void of my husband. It isn't always easy but it's getting easier and I'm doing it.

I've had a few observations about me.

1. I'm looking at men. Hold on now, it's not what you think! I realized, I'm looking for my husband. Anything that reminds me of him, walk, talk, clothing, hair. Odd as it sounds.
2. The change in the weather makes some days more difficult. Rain, cold I find myself missing my husband more.
3. Once our children grew up, married and their family extended I decided I wouldn't put a lot of undue stress on them by insisting we have family Thanksgiving Dinner. In fact, any time I get to spend with my family is considered Thanksgiving to me yet I find myself anxious about the upcoming Holiday. I guess, even though we never did much, at least Hubby and I were together. I am looking into perhaps serving at a local church dinner or nursing home.
4. I was sharing the fact with someone that, my husband had died. Later in the conversation that person referred to me as widow. My brain exploded and it screamed “You shut your mouth!” but outwardly, I only nodded in agreement

And, I still have those caught off guard moments.

Today I talked with the sweetest older couple.

The gentleman was telling about dating his wife -then girlfriend -61 years ago. They had a difference in height so he would stand a step or 2 below her to give her a kiss goodnight after returning her to her front porch and her waiting father.

The lady beamed and added, “that was before we had air conditioner”

The gentleman continued by saying that her father was waiting at the window and if an attempt to have more than one kiss was made, the father would have a coughing fit. We all laughed really hard.

It was obvious they were still deeply in love.

She said they had been blessed with a wonderful marriage, children, grandchildren and great grandchildren as well as good health. I loved hearing their story. He chirped in and said, “You know what keeps me healthy? Cornbread and buttermilk”

That's when I felt it, tears were welling and there was no stopping it. I had to excuse myself and go to another room for a little while to compose myself.

You see, my husband loved cornbread and buttermilk.

It's always the little things.

Running Away From Home

My Sister in Law and her grand daughter (my great niece) have had their own grief to deal with. My sister in law's daughter (niece's mom) passed away a year ago. 

Over the years my sister in law has said goodbye to a sister, her only son, her mother, her husband, her only daughter and now her brother; my husband.

My sister in law buries herself in “home” work, inside and outside constantly to deal with her grief. I tease her that the family took bets on how we would find her on her final day. I picked, Riding the lawnmower slumped over going around and around a tree ;-)

I understand why she wants to stay so busy, she doesn't have to think about anything but the tasks at hand. To me, she seems very isolated from others. To her, she likes the solitude. Different personalities.

She and her grand daughter had planned a vacation and in their kindness, invited me. At first I said no for financial reasons, but the invite was all inclusive with the use of my car and shared driving. I changed my mind and said YES! 

My Favorite stop, The Arches

I was ever grateful for their kindness. 

I needed away from here. 

I needed a change of scenery, 

I needed some company. 

We spent 9 days traveling to places I had never been, West to the Mountains.
Our first stop was Pikes Peak. I'll just say, if you have never been there GO but take in the elevation gradually . We took a one day drive, and hit it the next morning. It took me 5 days to recover from the elevation changes in my body! It was still a great time and we had a lot of fun and shared a LOT of laughs. Love them!

My sleep issues remained the same, something I was concerned about and they didn't change much, other than a straight 5 hrs one night. WOO HOO!!

I am ever grateful to my sister in law and niece for their reciprocated love and support.

I wondered if I was still considered family. Silly thought , I know, but I truly wondered if the death of my husband had severed that tie to them. This is the part that you can add, some family doesn't have to be by blood, they are by choice. I choose them as they choose me.

Then we came home.

That's when the silence started to suffocate me.

It was everywhere. Getting worse by the day. I would play the radio for the company but it wasn't helping. I was still volunteering but I had to come home. I was still having sleep issues. I thought I may have been going mad. I tried to stay positive but I couldn't shake the deafening silence!

So, I ran away from home. I made arrangements for my dogs and family to see if I could be a couch and refrigerator bum. Threw some clothes, a brush and a toothbrush in a suitcase, (I had no idea what I packed) and drove to Florida!

That's when it happened.

While I was there I had some sort of sleep breakthrough.

I started sleeping all night. 8 uninterrupted hrs or more! I was amazed but ever so grateful for the blessing of sleep!

I had some other sort of breakthrough but I couldn't quite put my finger on it, until I came home.

I spent 16 days in the company of loved ones I hadn't seen in years, just being. I even bought a bathing suit. I haven't owned one in years!! It was glorious!

Then I came home.

And you know what? My sleep is still improved.

I feel mentally better somehow, well enough I actually was able to stop taking my anti depressant and anxiety meds with no issues.

You're probably thinking I forgot my husband. Nope! I still remember him. My thoughts are more on the better times and less on my sadness without him. 

My heart pain is softening. I still have moments but I know they will pass and I will be ok and stronger for them. Long forgotten memories of random things enter my mind and I smile. Reminders of fun times and sweet moments cover my heart from the piercing pangs of grief.

I'll share some of my FB status with you.

1) Observation - 

The road through grief recovery can be long, bumpy, tiresome, filled with unexpected detours, flash flooding or rock slides and construction delays.
Yet sometimes, something new and beautiful just around the corner. Keep your eyes open for the beauty and your heart open to the peace. ‪#‎comfortcoffee‬ 

2) Laughter is good for you -

Volunteering at the Habitat store, I was helping a gentleman with an item. He started telling me how he had plans for a remodel to keep him off of his wife's bad list. We joked about the list and marriage in general. He told me how long he had been married. I replied he must like it to stay. He said she was wife #3 and I laughed. I told him I was wife #4 for my husband and it took him that many times to get it perfect. The guy looked at me and said "perfect, huh?" I emphatically said "Absolutely, He wouldn't dispute it! Of course he passed away in Feb so he can't dispute it, so I can say it any way I want." The man busted out laughing and told me I had it all figured out.
Well of course I do ROFLOL!!!

3) **This one is Kathy Humor you were warned you either get it or you don't. Look away if you are over sensitive. -
Funeral Home called, they were placing (Hubby's) Veterans Memorial Plaque. I met them there to inter the remains that wouldn't go in his urn. Shovel in the back, cremains in the front. Passed a police officer. I wasn't speeding but he pulled over behind me and followed for a while even making a turn I did.
I actually thought about speeding up so he would pull me over and ask me where I was going. I would have looked over my glasses and answered, "to bury a body"

4) Blessings -

I've struggled with a purpose for my life since (Hubby) passed away. I truly understand how the remaining spouse can feel so lost that giving up would be easier than the moment by moment walk through recovery. I questioned God if there was a need for me anymore and I even ran away for a couple of weeks to escape the maddening silence. Yet with the help of much prayer and unwavering support from family and friends (yes I'm talking about you) I can say I see hope again. I see a future for me and even though it is one absent from (Hubby) it is the path the Lord has for me. That path was evident when I was asked to take the position as Volunteer Coordinator for Habitat for Humanity. I admit I stared in disbelief at the offer. I am truly blessed.
How much the Father loves his children and gives them good gifts! ‪#‎childoftheKing‬

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.

I Just Need Sleep

Today my husband has been gone for 5 months.
I at least stopped counting the days and some times I even have to recall the date to know how long it's been. Today had been a difficult day though.
Some days it feels like yesterday when I was holding his hand and his body stopped.
Some days it feels like he has been gone for a very long time.

I'm still working on keeping depression away. It feels like actual work though.
My meds have done one thing thing well. They have made those random crying outbursts stop. I am so very grateful for that. I still have my moments when I am struck by a thought or a "trigger" of some type. I also have my days when I just go back to bed and lie there clutching my pillow and being comforted by my dogs.
The night time crying has ended for the majority of the time. Again, I am glad. I know that crying is supposed to be good for you but all it does for me is give me a headache and make me feel worse.
I struggle with sleep. In the last 5 months I've had 3 days of 3 straight hours of sleep. Other than that I wake every hour or 2. My lack of rest is beginning to take a toll on me I fear as I'm having some other side issues that feel out of my character.

As my husband's 24/7 caregiver all I wanted was a few moments for myself. Maybe to go run some unhurried errands or have some "me" time. I would have even enjoyed just a walk around my block. Now that I have the time, I wont leave my house unless I just have or need to. June was a rough month, mentally, physically and monetarily. Perhaps staying at home developed a habit of some sort, but I just don't want to leave. I feel social awkward and I feel it in large areas when I begin to feel anxious. Am I still under the internal "time clock" to hurry home?

I started wogging again. It's a cross between a run and a jog. I'm not fast, I do more walking than running but I make the effort every day or every other day. I do it in my driveway, the same place4 I did before. My circle drive is 1/10th mile around so I use it as my track. I feel secure staying close to home instead of going around the block. Something I wanted to do in the past and would have if I had the opportunity.

I  have a ton of outside things I need to care for but some of the things I would do in the past without any thought are now a concern. I would have had no issue getting on my roof to blow off limbs or leaves. Now I wonder, would anyone know if I fell or became injured? Or even if I got sick?
 Even though my husband would not have been able to get me help if it had happened while he was alive, there was some type of security in his presence. Now I don't feel that and I think about everything before I do it. 

I wander in the house. Like my husband used to do, just go from room to room, not looking for anything in particular. Just wandering. It would be better if I actually did some housework along the way.

I feel like these are all sleep related issues. I tried changing the time I take my med thinking that would help, I take melatonin thinking that would help. Soft instrumental music, TV, going to bed late, getting up early going to bed early, hot baths. (oh FYI) I tried a epsom salts bath and all it succeeded in doing was making me sweat for 2 hrs afterward. Still no rest. I really don't want to see my Dr again about it as I don't really want to take any sleeping meds that I fear will become a habit. Something needs to give though.

I attend grief recovery twice a month. One of the ladies present said it was possible my sleep issue was due to the constant years of "on alert" for my husband. Now that he is gone my subconscious is still listening for him. She may be right.
I also took part in an #aftercare chat on twitter. I read that one former caregiver said it took her a year to get back on a regular sleep pattern. Oh I sure hope not, for me.

One good thing has happened, I changed my eating habits started wogging and have lost some of the 20 pounds I put on. That's a positive :)  

Also, a precious friend sent me a box of fun, smiles and love along with some other useful relaxation things that might help me sleep. She's awesome!

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.

Leave a message after the beep

Today I changed the greeting on the answering machine.
It was harder to do than I thought.

Something Just Like It But Different

I'm feeling the shifting weight of this grief.
Some things feel a little easier to get through, face and do.
Some things feel like they are new and harder.

I've had to make changes to the lifestyle I had become accustomed to. Those particular changes were not difficult to make. Things, I can do without.

I'm making adjustments in my life by getting involved in volunteering so I don't feel like I'm trapped at home only doing things for myself. I believe I will enjoy this new venture.
Coming home to an empty house at an odd time is difficult though.

What I am grateful for is that I don't have to sort through it all at once. It comes in segments.

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.