Wednesday, December 28, 2016

talking with sister

Listening to the Man talk with his sister tonight, I am just enjoying their conversation without carrying the conversation. They don't have the easiest relationship, but the diagnosis of dementia has changed their dynamic for the better.

It's just too bad it took dementia to change it.

We never understood why she didn't call or respond to our calls after their dad passed away. We tried to connect with her, but got no response to anything.

The Man did tell me how much it hurt him, but he let it go and let her determine how things would work out.

It took 3 years for her to make any attempt at communication, and then it was a vague message on Facebook. After digging a bit, I discovered she had broken her arm and had surgery, but we weren't notified of her accident.

We talked it over and decided that the relationship reconnection was more important than the hurt or anger we might be feeling... and are glad we moved that way. No regrets at reestablishing connection.

In the last 3 years, it's still slow going on their relationship, and usually requires me to start any conversations. Or to keep a conversation going.

Tonight they have been talking for over an hour, without me in the conversation. At all. Wow!

That's new, obviously. And all due to the diagnosis of dementia.

Terminal illness will do that whole "gotta say the important things" thing.

All I really care about is that the Man is happy to talk with his sister as much as they have been doing in the last few months.

All I really care about is the Man.

...may there be mercy and a visit from his sister soon, while he still knows her... 

Sunday, December 25, 2016

joy filled heart

christmas weekend has been filled with moments of great emotion... mostly joy.

Oh, I don't mean that over-the-top-crazy thing, but that deeply felt and deeply cherished joy, that is so intimately personal, sometimes other folks don't see it for what it is.

But I know it when I feel it.

And it's felt when the Man has several great days in a row... his focus is sharper, conversation clearer and more concise, understanding shines in his eyes, and he pops out one-liner jokes right and left, engaging all in the laughter.

It's felt when I am surrounded Christmas weekend by the men I call my extra brothers. Those men who are willing to have a depth of friendship, usually reserved for siblings, that has nothing to do with sexual attraction, and everything to do with being a brother who loves.

It's felt when my godson gets off a plane, after having spent an amazing week at Disney with his mom and sister, but jumps in his car to drive over an hour to be with his dad... and us... on Christmas. When he arrives, his hug hits my heart in deep and wonderful ways.

My heart is full today, of deep joy... and I am thankful.

...may there be mercy, and great joy for you...

Thursday, December 22, 2016

no pity, just love

A few days ago, I started a post here that talked about pity... and I got stuck. Here's what I had to say at that moment:

In the last few days, I've started recognizing just how many people in our lives are feeling pity for us.

I hate pity. It's useless.

How does pity help me? Or the Man?

Pity is simply a way for someone to feel better about their lives or situations because they believe they are in better shape than me.

My answer - bullshit.

Oh, you didn't think there would be language here? Sorry to disappoint. Some words just need to be used... in a judicious manner.

....   and that's where I got stuck.

Because all I wanted was to drop F-bombs and could not get past it, and I really didn't want F-bombs on my blog.

And I was angry. Very angry.

But anger is too scary for me to manage at this time, so I stuff it down and pretend it isn't there. Eventually I will deal with the anger, but now isn't the time. Oh, don't worry, I am discussing anger issues with my counselor.

In the meantime, I'm actually focussing on recognizing the incredibly sweet moments of when the Man is able to be that guy I fell in love with... when his humor comes out to make me laugh out loud... when he remembers to take out the trash can every Tuesday night... how he wants to know if a friend has checked in, because he is concerned about the friend who is going through a divorce and wants to show he cares.

There are many more precious moments that I am holding in my heart.

And there are moments that I must stop writing and just sit holding his hand because that's what he wants to do tonight. When he wants to sit and snuggle up together, that's the best. Ever.

And none of the rest matters quite as much.

... may there be mercy and comfort in the struggle-y parts.

Thursday, December 15, 2016

lather... rinse... repeat, plus a bit more...

Today saw a repeat of the confused time for the Man... at the same time of day as yesterday, but at least a friend had suggested a potential help.

This morning, I put a sign inside the house, on the front door, that says "C is at work... call ###"

He called, so it works for now.  Of course he called in the middle of my counseling session, but it worked.

My counselor thought it was brilliant. And that my natural manner of interaction with the Man was great. Was glad that my counselor validates how I can keep the Man going on an ongoing basis.

Have I mentioned that I hate dementia ?

Tonight, on top of confused moments, there was a shooting 5-6 blocks from our home. Helicopters have been circling for hours over our house. An officer is down, and the shooter is still out there.

Not supposed to happen in my little town, and corner of the world. Peraying peace for those involved, and their families.

...may ther be mercy and an end soon to manhunts...

Wednesday, December 14, 2016

confused in the dark

Walking in the door about 8 minutes late tonight, the Man greets me with his jacket on and a frightened look in his eyes. I know immediately this is not a good thing,

His words don't make full sense... until I interpret enough to realize he is telling me that he fell asleep and when he woke up, he could not find me.

He was alone... with his dementia... hungry and in the dark.

In our corner of the world, it gets dark early this time of year... by 4:30 pm, it is black out. And stays that way until around 7:30 a.m.

So the dark was confusing, and he could not tell if it was morning or night. He thought morning, and knew I should be there with him in the morning. He was angry at being abandoned by an unknown someone, where he could not find me... and at the same time, he was frightened FOR me.

Oh, God in heaven, that frightened look is devastating to me.

Then the relief when he saw me come in the door.

Thankfully I was able to calm him pretty quickly, and manage his hunger with a quick dinner. Food helps so much.

We talked about the fear, the unexpected nap, and an easy solution to this issue in case it comes again.

Now I'm wrung out and ready for a rest. 

...may there be mercy and a good night sleep, not to mention no naps tomorrow...

Tuesday, December 13, 2016

achilles woes

At this moment, there are 60 working hours until vacation. And that's it for this year.

oh... yay... oh... yay!!!!

Morning will see another Traumeel injection for my Achilles issues. The first one seemed to help, and the second is supposed to show me if this is the right course for the injury. If so, we will continue with the injections for a while to get this thing healed. If not, I'm done as surgery is not an option I can pursue.

If not, I will live with pain for an indefinite period of time... long term.

surgery will require not putting my foot on the ground for about 8 weeks.

no driving
no walking
no weight at all

With the Man not driving... not possible
With our laundry stuff in the garage, down 3 steps... not possible
With me working... not possible

There are a lot of not possibles in a surgical scenario.

... may there be mercy and healing, fast healing...

Monday, December 12, 2016

loss of independence hits again

This morning, as we snuggled in bed before getting up, the Man started to fret that he has not gotten a
Christmas gift for me. It truly broke my heart in ways that his dementia has not broken me before now.

While I reminded him that we have not really exchanged a purchased gift for quite a number of years, he still fretted. I think I got him settled on this issue, but time will tell.

Normally we find something bigger that we both want together or we go do an over night trip with a really fun show or something like that. One year we picked 15 or 20 DVD movies we didn't have, bought them and watched them all during the week between Christmas and New Year's.

No matter what, it's been a really fun thing for us, taking pressure off of us to get just the right gift. Allowing us to enjoy Christmas for and with each other.

Now that the Man does not drive anymore... thank you dementia for taking that ability away so quickly... ... he is totally dependent on me or a friend to take him anywhere outside our home. Of course I'm always glad to take him places, but usually it's on my errand agenda or I've planned a lunch or dinner date on my schedule. Or I plan for his time with a friend who picks him up here to go to lunch.

It hit me hard this morning that if he wants to give me a gift, he can't do it without me taking him to get a gift for me... how does that allow for surprises... Christmas, anniversary, birthday... or simple thoughtfulness ... or the expressions of his heart...


Dementia takes so very much away. It hits each day a little more exactly how much it is taking.

and how much I hate it.

... may there be mercy and comfort when I need...

Sunday, December 11, 2016

filling the tank

The office Christmas party was really fun... and yes, the cocktail dress won the day. Nothing like feeling beautiful, and seeing the appreciative gleam in the Man's eyes, to boost a girl's confidence and make a party like that even more fun.

Unfortunately, this morning on the way to church, a minor conversation disturbed me greatly. I've been thinking on it all day.

We typically leave a few minutes early when heading to church. In case the rain lets up enough to fill my gas tank at Costco. Today it was a good day to fill up, and we stopped to do so.

I got out of the car to fill it up, nodded to the attendant who was standing there, and put my card into the pump. The attendant looks at me, ducks down for a second to glance inside the car at the Man, and says, "why are you getting out of the car to pump gas?"

The judgment against my husband was clear... and hurt deeply.

I managed to reply graciously. I said, "my husband is disabled."

From the attendant, "I can accept that."

Everything in me wanted to lash out at this man that he had no right to judge my husband... that he knows nothing of our circumstances... that his acceptance doesn't mean squat to me...

...that the Man can't remember how the gas pump works because he has dementia and my heart is breaking because of that thoughtless comment.

There were a lot of things I could have lashed out at the attendant this morning, including some words that I would have been embarrassed to use just a few minutes later at church. (sinner... human... thanking God for forgiveness!)

I'm grateful that God held my tongue for me and gave me the grace to respond gently instead of with some of what was in my head. That as I got back in my car, I smiled at the attendant and wished him a good day.

There is also a larger level of thankful that the Man didn't hear any of it.

Right now is the hardest part of the dementia for the Man. The part where he knows exactly what is happening to him. That he forgets way too much. That he can't do multi-step tasks like driving... or filling the gas tank.

But he wants to. Oh, mercyandgrace, but he wants to do those things that he has always done for me like filling my gas tank.

Usually, I tell him that it's too cold outside for him to do it, and that I'm having a hot flash... to save his pride because he wants to pump gas for me, so badly, but is demoralized each time he forgets the process. Since the Man gets so very cold and very quickly, he accepts this and we go about our business.

But the judgment from others who do not have any clue is hard to accept.

At times it is a bitter pill, especially when I know the Man's heart is to be my protector and a provider. I remember the days when he was the strong one for me. Now I have to be all that, and more, for both of us.

I know that a random comment from a stranger shouldn't bother me so much... but that judgment sits heavy on my heart this evening. My emotions get the best of me at times, and apparently this is one of them.

...may there be mercy and God's graciousness ...

Saturday, December 10, 2016

lazy thoughts over coffee

Again... sleep is glorious!

And 2 nights of real sleep is enough to make me feel much more like myself. We're being lazy over Saturday morning coffee, and I'm taking a mental note of my depression level. Lifted, thank God!

So far this morning, we have had a time of just snuggling in bed, chatting about the day and then managed to finally get up at 8. Felt pretty decadent to me, as our usual get up time is 5:30. Since there is a late evening planned, the gift of sleeping in is a good thing.

Tonight is my office Christmas party. This one is a pretty big deal. It's the first time ever that all 5 offices will celebrate together, and the entire board of directors is also joining us. We've always had separate parties, but this year they are trying to help change the "our office/your office" mentality and move to a more unified staff. I'm hoping they can pull it off, as I really like the folks from other offices that I know. It will be good to get to know some of the others.

Hardest thing about this party is that old vanity issue of what to wear. I've gained a lot of weight over the last 18 months. Not much fits or fits well. Vanity, I know. While they are "suggesting" business or business casual attire, the place where the party will be held is pretty nice. To me, that says cocktail dress. Especially with the board of directors being there.

But it's cold outside!

How cold it is, not to mention rainy, tells me to be smart and wear slacks with a dressy top and my really sexy boots.

But I love the idea of getting to wear one of my lovely cocktail dresses, as very little happens here that allow for dressy stuff like this.

Both the dresses I have that still fit and look good on me are sleeveless. Figuring out how to keep myself warm enough will be the issue of the day. I think I've got a dressy wrap still that will work. Deciding which shoes will work with a cocktail dress is a whole 'nother issue. Both really look fabulous with my high heeled rhinestone sandals, but that ain't happenin' in this weather!

... and I do know how ridiculous this blog post about may vanity and what to wear is,  as there are so many bigger and more important issues out there. But here we are today, and it's my lazy thoughts over Saturday morning coffee...

And at this point, I'd best go start my day so that I can figure out what we both will wear. Soothe the Man's fears about forgetting his words during the party when he doesn't know everyone, and enjoy this day.

...may there be mercy and joy today in celebrations...

Friday, December 09, 2016

random Friday thoughts...

Sleep is glorious. Don't ever take it for granted.

Sleep last  night... glorious. I do not take it for granted and pray it happens again tonight. :-)

Amusing moment of the week: the elderly lady who called our office today, upset because her granddaughter had not left her the bottoms of her long underwear and she was cold. She wanted us to call her son to make the granddaughter bring them.

Proud of our receptionist who is kind enough that she called the son. She is a kind soul, and I was reminded that I should be that kind.

Our office Christmas party is tomorrow night. It will be late evening for us, and the Man doesn't do as well later in the evening, but we are going. Should be fun, and am hoping he does well despite the nighttime difficulties of cognition.

In the realm of ridiculous.... I'm still struggling with what I'm going to wear to the party Ugh. That whole gained weight and nothing fits thing happening here. Did go shopping during lunch today. Found a couple tops that might work with dressy pants. And maybe I'll just wear that great cocktail dress I have if it isn't too cold.

And... the Man needs me to be on routine and bedtime was about 30 minutes ago... so blog posts will probably end abruptly, without fully finished thoughts. But getting something out is good. Dementia changes everything.

... may there be mercy in the random, and something to wear to a party for my vanity...

Thursday, December 08, 2016

random thoughts on sleep and depression

This evening, we are waiting for snow.  The fireplace is going. We've got the house warm and cozy, and in a few minutes I'll make us some hot chocolate. It's a pretty picture, isn't it.

The flip side of this coin is that my long term, and unfortunate companion, depression, is making noise in my world, too.

Oh, I know full well that it's from being so very tired right now. It's hard to fight when I can't get the one thing that will bring me back up quicker than anything.

We discovered years ago that the first line of defense against depression for me is guarding my sleep. Lack of sleep is also the first sign that depression is creeping up on me. We work hard to ensure rest for me, changing our process every time that it seems the process is not working anymore.

Side ramble... the Man just decided he has been neglecting a friend, so we talked through making a call to chat. Listening to his conversation and watching the happy in his face is heartwarming to me.

Ok, back to reality and all that...

Over the years, we've figured out some great ways to ensure sleep for me. My doctor has been a big part of the process, and as a team, we got a pretty good level of sleep for me. And then dementia...

I'm learning how sleep issues hit for the Man, as dementia makes it hard for the brain to process the dreams. They become too confusing, and thus too frightening. Then the process of separating the dream from reality ... and managing the process of waking up. There is no quick wake up now for him.

Between both our issues, there just hasn't been any rest for me, and so the downward spiral begins.

And the fight begins, too. The fight to keep my mood from getting too down. The fight to hide how down I am from the Man as any stress exacerbates his symptoms. The fight to continue to hide it all from everyone at work, who actually have no idea that I have battled depression for so very long, or at all.

The fight to actually enjoy this Christmas season... and then each day after.

Part of my battle tactic is my return to writing here. After the last couple days of writing, rusty as it may be, I was reminded how the process of writing thoughts like this helps me in great ways. I like writing and everything about this ...

And the Man needs me, so I sign off with a lot hanging and unfinished thoughts... but that's life.

...may there be mercy and sleep... please God, let there be sleep tonight...

Wednesday, December 07, 2016

commodity of sleep

Mercy on my day started as a prayer for sleep.

Sleep is a hard won commodity around this house. Between the issues of 2 sleep disorders for me, and the issues of dementia and medication nightmares combined with sleep apnea for the Man... well, suffice it to say again, it's a hard won commodity here to have a good night of sleep.

Last night was not a good night of sleep, dangit.

Being a childless couple, without any family in the local area, all caregiving falls to me. In my research of local resources for caregivers, there are a lot of them available... but anything overnight at this point will fall to me.


In these earlier stages of dementia, this is pretty normal. Nights where he gets up frequently to use the bathroom, followed by nightmares that are only eased by me speaking softly and holding him close, then leg cramps, ending with a struggle for both of us to get out of bed when it's time to get up.

One night isn't too bad, anyone can get by on a less than stellar night of sleep for a day. It's the days on end that are harder... at this point we are 9 days into a string of bad nights.

Tonight while I'm writing, I'm also chatting with the Man... and I just made the mistake of mentioning the wrong thing... stuff my doctor said today about options for my injured achilles tendon... which may just keep him awake again tonight.

I'm already praying that sleep will happen quickly after I sign off here. The lack of sleep is hitting both of us kind hard.

... may there be mercy and real sleep, for several nights.

Tuesday, December 06, 2016

beginning again, beginning again

It's 29 degrees outside, with the threat of snow this week. The fireplace runs much of the time, and we snuggle on the sofa together in front of it after dinner, chatting easily. The Man rolls his eyes at me when I am silly.  There are a few Christmas decorations up, with a few more to come out of hiding. It's a quiet evening in our home.

So much has happened since November 2014 when I last posted... where to even begin, no idea, but a little at a time will suffice. Probably doesn't matter as folks will have given up on me coming back to this blog, but I will try again to have a level of consistency.

Yeah, so much has happened indeed. Both 2015 and 2016 were tough years for us. 2017 has potential to be more of the same... but don't ever believe that I will give up! There is still a bit of joy in each day and I eagerly watch for that small bit of sweetness to savor.

2015 saw me with major injuries, twice. Both times I managed to catch a foot on uneven sidewalk while out running. Both times I broke the fall with my face. (kids, don't try this at home...) Two broken noses, two broken pair of glasses, two concussions... 30 days apart.

First fall saw 9 stitches in my chin, where I split the skin all the way to bone. Really not fun to hear the doc in the Urgent Care saying, "oh, I see bone!" (yikes!!!)  The landing also cracked 2 ribs and messed up my jaw so badly they had to recheck 3 times over 3 weeks to see if it was broken. Thankfully it wasn't.

Second fall saw 5 stitches above my left eyebrow, with some permanent damage to the orbital nerve that still results in some killer headaches at times. The black eyes, both, were spectacular. The cast on my wrist, not fun. The fear of going back out to run... daunting.  Eventually I got over that fear.

So the first half of 2015 was spent recovering and healing. It was lonely and hard, and at the same time, there were some amazing folks God brought, who rallied round to keep me going.  Second half of 2015 was spent trying to regain my equilibrium, but really more battling depression. Eventually I began to come back to myself.

This year has been harder, as I watched a big decline in the Man's health. He became more physically frail, and could not remember how to do most normal things. Sparing all the details of this year, the long story short is that on August 3rd, 2016, we got an official diagnosis of dementia... most likely Alzheimer's.

wow... dementia... Alzheimer's... and he's only 66... dear God in heaven, how do we cope with this?

Yes, I saw it coming. But so much in me hoped that it would eventually turn out to be depression. With my history, we know how to manage depression. One can survive and live for a long time with depression.

Dementia is terminal.

Oh, I know many folks live with dementia for years. And he could. It just seems to move a bit fast already. And others are noticing that quickness.

I've loved this man for 30 years... I'm not done with him yet. Not by a long shot.

For now, I'm thankful that I've been doing my research. Finding resources that will help me as his only caregiver, and still allow me to be his wife. Determining that the medications are a very good fit for him and that he gets very good benefit from them, which allows him to be in better shape for a bit longer.  Learning how to cope with his losses of independence and ability. Loving him no matter what.

Because that's the most important part about all of this. Love.

Yes, at times, caregiving is hard. Loving him is never hard.

And that's my focus each day. To love the Man with all I am, making each day the best it can be for him.

So much more to say, but he needs me now. We have a routine and that part is critical for him to do well.

Love someone well today. It's important.

...may there be mercy and love each day...