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.
Showing posts with label grief. Show all posts
Showing posts with label grief. Show all posts
Tuesday, July 15, 2014
Friday, July 11, 2014
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!
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!
Monday, June 16, 2014
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.
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.
Wednesday, June 11, 2014
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.
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.
Friday, April 25, 2014
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.
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.
Saturday, April 19, 2014
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.
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.
Thursday, April 10, 2014
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.
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.
Tuesday, April 8, 2014
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,
Friday, March 21, 2014
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.
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.
Friday, March 14, 2014
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.
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.
Thursday, March 13, 2014
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.
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.
When I said, “My foot is slipping,” your unfailing love, Lord, supported me.
Tuesday, March 11, 2014
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
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
Wednesday, February 12, 2014
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.
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.
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