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.

Are you married?

I was caught up in a lighthearted and fun moment with some teenagers. Strangers to me that were filling an order for food I had made.
In the moment I responded in an over exaggerated "Mother" tone that brought smiles and laughter. One of the young men asked me, "Are you married?"
For a fraction of a moment, my whole world stopped but my brain kicked into overdrive.
I wanted to say, "Yes" after all, my head and heart are still married even if I'm not physically.
I didn't want to say "no" since I thought I would need to offer explanation and that would throw water on the moment we all seemed to be enjoying. I would be walking out of the building and I didn't want lingering  unease for the person that asked.
How do I answer?! how do I answer?!
So I did the only logical thing I could think of,
I answered with "It might just be your lucky night."
We all just belly laughed as the young person blushed.
I paid my bill and walked out.
Although the moment wasn't broken, the question lingered in my mind.
"Are you married?"
This time the question offered in the moment wasn't really an actual question.
But what about the time it will be?
How do I answer...

How do I answer?

Peaceful Moment

For the first time, in the nearly 7 weeks since my husband died, I wanted to go and do something.
Oh, sure, I have left the house for things I had to do, needed to do and was obligated to do, but this time was different. This time I had a desire to leave the house because I wanted to.
Even though there were non priority errands to care for, the mood was different in caring for them.
I enjoyed the meandering in the store even though I was picking up a few items.
I decided to stop and grab a late lunch, early supper, or as my husband and I used to call it, "old people's supper". Just sitting quietly observing the staff  and patrons.
The stress of  "hurry" was gone.
A sense of peace filled my mind.
I enjoyed the outing.

The Winds of Change

SO many changes!
Even the weather is changing.
Some changes for the better, some feel worse and I have very little to no control over any of them.
So I decided I needed a hair cut. And I did. a dramatic cut from long to very short.
That seems like a small thing but an important step in my independence and self care.
My caregiving had ended for another, now it is time to take care of me.

Changes to my life and my lifestyle couldn't be avoided so I have had to make adjustments to them. It's either that or find myself trapped in the black hole of depression that I keep scrambling to avoid.
I keep clinging to the only thing in my life that hasn't changed. My faith.

 Hebrews 13:8

Jesus Christ is the same yesterday and today and forever.

Church

It's been quite a few years since I had been able to attend the church I am a member of.
This is where many of my prayer warriors congregate.
I know where I can turn when I want someone to pray the words I can't seem to express.
Even though I know God hears my prayers, it gives me comfort that others are lifting me to Him for the comfort, peace, assurance, peace and direction I need to live according to His Word.
I have prayer warriors and I'm not afraid to use them!

So why haven't I gone back to church yet?
I have the time now.

I'm good with a few people offering me sympathies and condolences.
I fear the overwhelming show of love will leave me an emotional wreck.
Lots of times I feel strong and together at home.
I can be around 2, 3 or 4 at a time without feeling overwhelmed.
But for some reason, I'm afraid of a congregation of people I love.
And it's only natural they would want to be supportive. I would want to be if it were not me in this situation.
I have so much to learn and so far to go yet.

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. 

Purses

Some days all I can accomplish is staying in bed. The inability to go to sleep and rest has seemed to catch up with me, I'm so tired all the time but some days are worse than others. The dogs understand and snuggled up close, they provide solace for me while I sleep.

I have moments of happiness, I really do. I can find joy in things. I appreciate spending time with loved ones or running into old friends. I'm not consistently sad.
I find pleasure being able to encourage others and get fired up about things I feel passionate about.
There is progress but then there are the moments that seem to throw me to the ground unexpectedly.

Like this moment.
I like purses.
I like purses like some people like shoes.
I don't spend a lot of money on purses though. Top range is $20 and I really have to love it.
(Yes I'm going somewhere with this)
So I had to do some shopping and cut across the store in the normal hurry I have become used to when I thought, slow down. There's no rush. So I was in the purse section and stopped to look around.
I found a purse I liked, a color I didn't have, and on sale! I opened the pockets and thoroughly checked it over for size, when the reality hit me. I no longer had to buy a purse based on it's size.
I've always carried a larger one to accommodate things my husband may have needed while we were out.
Realizing this was very emotional for me.
Another small thing that seemed big.
Another change.
I bought the larger purse anyway.

In some ways I feel like the purse, from the outside you would never know it was empty and void.
But on the inside, I still have that hollow feeling.
Still waiting for the Lord to fill me.

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

Flip Flop

I'm so tired of the emotional flip flop,
One minute, I'm okay.
The next, No I'm not.
I'm tired of crying at inconvenient times.
Lets get this stuff scheduled so I can deal and move forward.
The only time I'm certain tears will come is at night.
The dark is always hard.

The Finality of it All

Storing items, discarding things and donating others.
Empty draws, counter space, and clothing rod.
I'm finding myself face to face with the finality of it all.
Not that I've been in denial of the death of my husband, I know he is gone, it's just,
I started getting waves of,
He's gone,
he's really gone,
forever.

I am so glad that grief comes in spurts for me to deal with. This is hard enough as it is in small doses.
Tears are the only thing that seem not come in small doses when they come and they haven't finished.

To Sleep or Not To Sleep

Sleep. I don't seem to have a problem sleeping. I'm always tired it seems.
The problem I do seem to be experiencing is my bedroom.
"I don't wanna go to bed!"
I'm having a difficult time going to my room to sleep.
It's as though I must force myself to go in there unless I'm so exhausted I can barely keep my eyes open any longer.
In the pitch dark I find myself not wanting to turn on the light for fear of disturbing...no one. I turn on the light.

There are also times I MAKE myself go to my room. But I wind up turning on the TV to watch a DVRd show. In my mind can hear my husband ask me, "Are any of our singing shows on?"

The dogs tuck me in , each one picks a side of me and lies close.
I lay there and before I drift off, I say, "Goodnight, Honey. I love you" but only the silence responds.
At times I am overwhelmed by the finality of it all.
I cry myself to sleep.

Sleep comes, but rest does not.
I toss and turn all night.
By morning the bed covers are in total disarray. My hair matches.
Gone seem to be the nights of peaceful sleep.
I dream. Most of the time I don't remember about what.
Sometimes I dream about my husband.
He doesn't have Lewy Body Dementia in my dreams, but he always needs my help for something.

Crazy Grief

Grief, and it doesn't always mean crying, is the craziest thing!! 
I made myself some lunch and FULLY expected my husband to walk in the house. Thing is, he hasn't..err... he hadn't been able to leave and go anywhere without me for YEARS! 
Feeling caught me by surprise. 
Might need a candy fix for it;-)

Mush Brain

It's just 3 weeks since my husband died.
3 weeks where every day has felt like an eternity yet they have come and gone so quickly according to the calendar.
The slow motion continues, the "mush brain" is becoming annoying.
I can't concentrate for long but I can tell it is improving. Progress.
Some times I feel like I'm watching a show where the picture and words are out of sync.
Sometimes I'm doing something that feels like the motion and emotion are too.
I can still only do one thing at a time before emotional exhaustion takes over.
I've been told to stay busy, to take it slow, get out and do something, go somewhere, sleep, eat.
My head feels like a pin ball machine with the concerned advise of others and how others have managed but my mind has a wall up and chooses to do it's own thing.
Whatever the moment requires, that's what I do.
Apparently the moments all include food though. I seem to have no issues with that.

Prayers and Rainbows

Spending lots of time in prayer while I was chopping out the ice on the driveway when I took a break for a minute.

In the distance I could see clearing blue skies. Above me was still overcast but thinning out yet much of the sun's glare was blocked.
I turned my face in it's direction to catch some warmth and watched as it became brighter, thanking the Lord for the warmed day, the health to chop, the shovel I had, the warm boots and gloves.

I prayed for family and friends going through difficult times. We all need some peace.
I noticed the trail from an aircraft seemed to cross through the sun and then, I saw it, a very faint rainbow around the sun!

I even took my sunglasses off to be sure it just wasn't a sunglasses vision.
I had to block the sun from my eyes by now. but the rainbow ring was still there growing fainter by the second. I put my sunglasses back on and watched as it disappeared.
I have never seen a rainbow ring before! It was beautiful and very peaceful.

Home Alone

The home heating unit reached it's comfort level in the house and shut off.
I noticed the sound when it happened and I felt plunged into a deafening silence for a little while.
No noise, no sleep breathing, no rattling bed bars, no candy wrappers, no bathroom doors or conversations with nobody I could see. No "Honey".
Nothing.

And the silence was overwhelming.

Birthday

Happy Birthday, Bobby.
Party at Jesus house.

Psalm 118:24

This is the day the Lord has made;

We will rejoice and be glad in it.

Closets

I already cleaned out his closet.
Some of my husbands clothing will be turned into small keepsakes for our grandchildren.
The rest will go to a worthy cause we have always supported with our donations.
I held every piece close. Even the shirts he barely wore.
I cried into some of them, some I was glad to be rid of, some even found their way into the trash.
Pants, shoes, socks, t shirts, underclothes, hats.
I found pieces of paper and business cards that didn't amount to much. Campaign cards, phone numbers he had jotted down. Lots of car accessory places . He did have a passion for buying and selling. We always joked that he would even sell us if the price was right. And depending on the day the price could fluctuate ;-)
Memories. Tears. Smiles

I can still only do so much before I'm exhausted to tears.

Food has not been an issue. I'm having no trouble remembering to eat.
My choices for myself aren't that great. I rummage through the food closet looking for cereal, soup or snacks. I move the vegetables and find a couple of cans of turnip greens. I burst into tears.
I immensely dislike turnip greens but my husband liked them as much as I dislike them.
Stupid turnip greens, you made me cry but I can't throw you away.

So many things will be different now. So many things are different now. Even my grocery list will change to remove the things my husband alone liked.
Stupid grocery list.
I wonder if I will still price check those items.

Every day is something new

Busy

Had what felt like a busy day away from home.
It's amazing to me how much emotional energy it takes to leave the house and do anything.
My errands were fairly simple.
I made a stop at the funeral home to get my husbands flag, neatly folded and placed in a protective case.
(I had a moment, once inside the car)
I need to find a nice wooden box for it.
He was entitled to a headstone, a bronze plaque or a medallion. Since he chose to be cremated I selected the medallion to affix to a final cremation urn. I just haven't found the one I want yet.

A trip to Social Security went as I was told to expect but learning that I would not be able to get benefits  from my husband until I turned 60 was still hard to hear.
(I had a moment inside the car)

I enjoyed lunch with a precious friend who ministers to my heart. We shared laughter, tears and prayer. 

Not a lot of things but enough to make me feel completely exhausted.

Psalm 119:28

My soul is weary with sorrow; strengthen me according to your word.

 

Grief Group

I attended a grief group yesterday.
It was nice, intimate and non threatening.
I only needed one tissue.

I am hoping that through this I can not only help myself remain whole through this grief process but also help another. I seriously fear getting stuck in the grief and not getting out. Bitter and angry are 2 emotions that do not suit me.
I am also hoping I can feel filled again.
Right now, I feel empty.  I can't quite put my finger on it to describe yet. I don't feel depressed, been there done that not wanting to return, I have moments of happy and sad but I'm just empty, still looking for a purpose.
I've prayed that if this is how God wants me, than I am His to fill.
Until then I'm walking hollow and displaced.

I had a moment in conversing with someone when I started to say, "my husband" and for a microsecond I wondered, do I get to still say he is my husband?
I did say it, my heart and mind are still married. My memories are too.
Yet in that microsecond a wave of emotion plowed me over.
Where do I even fit in anymore?
UGH I hate being caught off guard!

Some Days Are Going to be Like That

Since my husband didn't want any kind of public service, we had a family gathering on Sunday. It was nice to be together.

Yesterday was a struggle, no that sounds too easy, fight. Yesterday was a fight emotionally so the dogs and I spent most of the day in bed.
crying
It ended that way too.
I cried myself to sleep.

Sensory Overload

Feeling a little better I accepted an invitation to do a little errand running with my daughter and her husband. I haven't been out of the house for very much. The weather is changing for the better and a light sweater was comfortable enough.
It still feels odd to just walk out the door without making sure things and people are in place. The ride was another emotion. When I drive I have to concentrate on my surroundings and stay alert for safety, when another drives I can just look out at the scenery. A melancholy ride even though I participated in chit chat and light and fun conversation.
We weren't gone long to mix among the masses when I began to feel very, very tired. I had to concentrate so hard on what I was doing and saying. I think I may have gone into sensory overload and I was even having a difficult time talking in sentences that made sense. It was enough to frustrate me at one time. Of course my daughter and I joked that maybe I was having a stroke but I ran through what I remembered about the FAST check for a stroke

F ace - My face wasn't drooped and my smile raised equally on both sides and I was able to stick out my tongue at her.
A rms - I was able to raise both arms above my head without weakness or numbness but I did hit the headliner in the car
S peech - I was able to communicate all my words clearly
T ime - had I had any of the above issues it would have been time to call for help

No, I'm pretty confident that my crazy word finding and slow reactions and extreme exhaustion were all part of my sensory overload and with time it will go away.

Not Lost

When someone dies, especially a loved one, I try not to say the word lost.
Lost makes me feel like the death was somehow my fault, I lost someone.
It also makes me feel like I can find them again.

My husband is not lost, My belief in Christ gives me faith that my husband resides in Heaven with the Lord. If I know where he is, how can he be lost?

No, I try not to say lost.
Pass away sounds better, sounds gentle, sounds peaceful yet still sad.
But lately, I've been using the word died.

I've had contact with a few of the outside world that didn't know about my husband.
So I had to inform them that he died.
Died sounds so harsh and final.
I've been having to practice saying the word to myself.
I've had to say it so the shock of it doesn't hurt.
Lost feels guilty, passed away sounds polite, died is final. Final.
I need to say died so I don't get stuck in the guilt or the politeness.
I think I may not be able to move forward if I get stuck there.
I worry about how I will respond when people ask. I need to know I will be ok when they do and I can give a straight forward answer without falling apart. I need to control how I react.
So I practice saying, out loud, "My husband died."
I can practice it without crying. I am making progress.

"How are you doing?",  is another one I work on.
"One day at a time"
"One moment at a time"
"I'm doing well"

In one morning in less than 5 minutes, all my efforts were tested and I failed miserably.
Tomorrow is another day.

I'm right here

Half asleep ,
half awake,
I heard my husband say "Kathy, where you at?"
I answered, "I'm right here"
and I woke myself up.
My tears aren't lost.

I even had a moment in the driveway as I was retrieving the trash can. No waiting for an aide to come and sit, not hurry to get it and get back before I was needed. I cried and I cried out for the Lord to listen to my heart because lately I don't even know what I need to pray for and sometimes even how. I thanked Him for loving me through it all.
I brought the trash can to the house.

Press on

I'm still not sick. I haven't been sick for 4 days now. (rolls eyes)
I'm glad I'm not sick, otherwise I wouldn't be able to function at all.
I'm still taking OTC meds. Yesterday I told my daughter I felt like a zombie.

I'm having a difficult time sorting out the (non) illness and the grief.

I managed a shower yesterday and I found myself just standing in the bathroom. I just stood there long enough to be completely dry and hair half dried.  My mind clicking away in prayer, thoughts, memories. Fast and furious but I never moved. Somehow I finally snapped out of it.

When I told my daughter about it she said I should place the box of meds on the counter. I told her I would with a note and the passwords to all of my stuff. We decided to make the passwords in riddles, I suggested words with friends. It feels good to smile.

The emptiness continues.
 Oddly I realized I never cried yesterday. Maybe I'm out of tears, maybe my meds have stolen them. Maybe I'm too tired. I am very tired, but I press on.

Royal seating

I woke up sick on Monday. Great, just what I needed.
Horse, growly deep voice, a deep cough, pressure on my neck and chest, generally feeling yucky. I chose to make a Dr appt, just to kick it before it got worse, besides, as a full time caregiver, finding time to go to the Dr was not a top priority for myself. Now I have all the time there is.
Couldn't get in so I had to wait until yesterday, still feeling bad, still coughing, still hard to breath, I made my way in, waited, finally saw someone and I was given the once over after the initial questions, one which was "Do you have any feelings of depression?" to which I replied through tears, "No"
I don't think they believed me.

After my exam I was declared illness free.
illness free?
I guess I am pretend sick?
I hope I get a pretend bill!
I chose to treat it with OTC multi symptom cold meds.

There are small changes that need to be cared for in the home. One of those is the removal of the handicapped toilet seat we have had for a few years.
When we originally got it, it was difficult to adjust to. My toes were the only things that touched the floor when I sat down. After my husband fell and broke the toilet a few weeks back, I had to replace it. The new one is just ever so slightly higher, so then my toes barely touched the floor when I sat down.
Yesterday I removed the seat and replaced it with a regular one.
Doing so was emotional for me. Afterward I had the voice of Howie Mandel's Bobby going through my head "It's my potty and I'll cry if I want to."
Yeah, I know
Now I have to adjust to the lower seat and panic sets in every time I sit.

name calling

As I was drifting off to sleep, I heard my husband call my name last night.

I keep purposely smelling everything in the bedroom. Pillows, blankets, his clothes.
Why do I think I will be comforted by it?
I am completely focused on the moments he was kind, outwardly happy or sleeping peacefully. It's as if my brain doesn't want to remember how much he suffered with his Lewy Body dementia in full swing.
Maybe it's a guard  around my heart.
He is so much better off unchained from the lewy monster and I am left to start over with my feelings and thoughts. I don't have any regrets, just empty wandering. I wanted so much to keep him home but the reality was he was beyond a level of care I was able to provide. In having him hospitalized, I was able to concentrate on just loving him. I still concentrate on just loving him.

Day 6

The emptiness is overwhelming.

The struggle of knowing what to do or where to go next is just that, a struggle.
I feel as though I've been in a massive whirlpool going around and around all the while holding my husband and then it suddenly, finally stopped. Not only is my husband not in my grips, I'm still dizzy and struggling to catch my breath. Where is the shore?

My prayers for direction continue and the answers are all, wait.
So I will.

The prayers for peace continue, I can tell these are answered with yes. I truly do feel a peace. The peace doesn't take away from my sorrow. It makes it more bearable. I wonder how people without hope ever survive.
Another way I can tell the answers have been yes, I woke with some sort of bronchial illness. I couldn't get anyone from the Drs on the phone so I decided to just go into town, see if they were open and make a stop for meds at the local store. They were open and appointment scheduled for tomorrow! WOW not next week! AND I didn't have any overwhelming thoughts of kicking or punching anything. Those feelings have me a little confused but I'm pretty sure they will subside.
I hope.

Sun Feb 16 small steps

I can barely function today. My eyes feel like lead.
The slow motion continues.
I know it's only been 5 days but, 5 days! Seems like yesterday, yet almost a week has slipped away. When does the slow motion feeling stop while the world whizzes by?

Realized I don't need to sort the eating utensils. I have 2 different styles and he didn't like one of them so I kept the forks separate. I started to sort them anyway but made the small step of change by not doing it.

Got through that

A year of firsts are always hard. Might as well jump in the deep end, so Valentines Day was a good place to start. You always think the BIG events would be hard, but reality for me is the small things are most difficult.

The moon was big bright and beautiful last night. I love the moon. It comes up right at the end of my driveway.  When we built our house I started telling people that my husband loved me so much he gave me the moon. I used to ask him to come look at it with me. Lots of times he did, but not always. I stepped outside in the cold to watch the big red circle rise. As I stood there I was overwhelmed by it's beauty and burst into prayerful tears.

A nightly ritual with an almost 3 yr old grandson had me praying to keep my heart guarded. I began dreading nite nite kisses before it was even close to time.
 Psalm 4:1 Answer me when I call to you,
    my righteous God.
Give me relief from my distress;    have mercy on me and hear my prayer.
Fortunately he came, offered kisses and never said anything else as he went to bed. 
Another blessing.

I'm tired but making myself go to bed is difficult. I actually sleep, when I finally do. The dogs keep me tucked in, one on each side of me in close contact. I knew I shouldn't have but I got up anyway and brought the box of cremains to the bed and laid them on my husbands side. I'll try not to do that again, it's not a good thing emotionally but I needed to do it, at least once.

Valentines

The funeral home called yesterday afternoon and said that my husbands cremains were ready. That was faster than I expected. His certificates were also ready, that was a surprise. My son accompanied me to the funeral home, the other kids all volunteered to go too, the sons volunteering was more of a statement. I was fine with that.
It's valentines day. Ashes and certificates are a far cry from candy and flowers.
I feel like I have no direction and someone needs to point the way for me.
Slowly the direction comes, just when I need it and not overwhelmingly. A letter from the Social Security office informed me to make an appointment. The said bring my marriage certificate. It was an emotional retrieval. At least it's a step forward.

There are so many things to take care of around the house, I don't know where to start. I managed to throw away a pair of old house shoes that belonged to my husband without incident but after that I was paralyzed to do anything else.
I wish cleaning was part of my grief.
I guess I could do one thing a day until the process becomes easier. I'll have to start with what I can do and it seems like my husbands candy drawer is as good place as any to start.

News Paper and Sunshine

Thurs Feb 13- Went searching for a paper today. Decided I wanted 6. Poked my money in the machine and opened it to find only 5 available, including the one in the window. Only 5. I pulled them all out then paid for them one by one opening and closing the door after the correct change was inserted each time. I did this in case the door jammed or the change jammed. I wondered how much trouble I could get into for throwing the box across the parking lot. I never had to find out. God has been so good to me.

The recent ice storm we had broke a tree top and it was lying across the driveway. It needed cut so I went out to clean it up. It felt good to get outside in the sunshine and blue skies. No time restrictions or concerns. That made me cry when I thought about it.
I'm working, walking, thinking in slow motion. Sometimes I think I'm breathing in slow motion too.
I still have a sense of peace but it feels like it's in the bottom of a very deep box. I'm very tired.

Obituary

I had to take care of some final things at the funeral home, one of those the obituary notice.
Knowing what the final outcome was for us anyway, I actually wrote it a long time ago leaving the blanks to be filled in. I knew having to do it during a time of grief would feel almost impossible. I'm glad I had the forethought to do that.
The newspaper charges by the word. They give you 50 words for free. I'm a package of M&Ms, they gave me one.

Bobby Conard Lowrey

Feb 11, 2014

That was that.
Over, finished, the end.
After kissing my husband several times, I walked out of the room on a very cold day. The funeral director handed me a booklet for remembrances. It was white.
Someone taped a picture of a dove on the room door.
Outside the room was the bed with the baby blue body cover on it. I ran my hand over it as I passed by. It was soft.
Accompanied by my youngest daughter we walked through double doors into an empty lobby to the parking lot. I stopped to find my car keys and put on my coat. I threw the book across the room.
I started my trip home and got stopped at a red light. I had a moment of pure pain that resulted in screaming.
For a moment I couldn't depress the accelerator and I wanted so badly for the guy behind me to honk at me. I wanted to get out of my car and kick his. I was hurting and I wanted someone else to hurt too. But it didn't happen, I drove home.
I prayed for the peace I had been experiencing to continue.
The radio was on.
I made 2 stops. A family friend I promised to keep contacted and the post office. Mail hadn't been checked in over 2 weeks.
I finished the journey home.
Overcast, grey, cold, ice storms earlier in the week, threats of snow lingering about, dreary, yet as I rounded a curve to top the final hill, in the distance was a clearing of clouds and bright blue skies. Peace.
The day came to an end. I needed a shower but part of me still smelled like my husband. I wouldn't wash it off. I cried myself to sleep once I hit the bed but I slept.