Counting Blessings

Through the holidays I have had the opportunity to reflect on the many blessings of my life and extended family.  Thirty plus people ranging from 96 years old to 4 months old share holiday celebrations in one form or another.  One stroke survivor who, at this point in her recovery, you would never know had ever had a stroke.  Ditto one cancer survivor who had a double mastectomy, chemo and radiation.  A beautiful bald new mom who miraculously has no indicators of the metastatic breast cancer that challenged the final weeks of her pregnancy.  Her healthy chubby-cheeked son and his 4 year old and 2 year old cousins were the delight of this holiday.  A mom, her mobility increasingly limited by MS, allowed her teenage son to carry her in piggy-back style.  The matriarch, my momma, is profoundly hearing impaired but happily gave directions from her “throne” – everything from “the doughnuts must be cut in half” to “put the ham buns on the Santa platter, NOT the elf platter”.  Lots of talking and laughing and noisy toys.  Too much food. 

I am also deeply aware that these people and traditions I treasure are ever-changing and only here for a brief moment of eternity.  I remember my nieces, nephew and great-nephews when they were born -- and those "children" are adults or near adults.  I miss the patriarch, my daddy, who died 4 years ago.  I miss the younger woman my mother once was who decorated her home and cooked from Thanksgiving to CHRISTmas for her neighbors and family.  I miss my healthy husband who would play with the toddlers and participate in the after-gifts basketball games. 

And I am blessed.  Blessed to have stored up the memories of love and joy that give me comfort in this season of change and loss.  Blessed to have a family that adjusts to whatever challenges come our way.  Blessed to have a family who rallies together when one is suffering.  Blessed to have a family that embraces new additions and grieves losses together.  

Silently Screaming

"Speaking slowly and in a low, calm voice is usually always best…..After you’ve asked a question, be still and give them time to answer.  Waiting 15 seconds for a response may seem like a lifetime – try it out and you’ll see.  But processing time may require that you don’t rush them and wait it out.  Patience is absolutely required." (from Dementia SOS)

Ooooookaaaay.  I got it.  Stay calm.  Be patient (long-suffering without anger!).  Wait it out.  Simple….  Straightforward….  HOW IN THE WORLD DO I DO THIS DAY IN AND DAY OUT???  Not well, I tell you.  Not well at all.

I have been silently screaming my way through the week.  First a soccer game where he abandons his walker, trips on the stairs and is indignant when I insist that he use a ramp.  Next the PT/OT assessment where the OT remarks what a great memory he has and how well he seems to be doing.  In fact, so well that she doesn't have anything to really offer him.  She encourages him to stay active and be helpful around the house.  The new neurologist remarks that my husband is walking quite well and has good muscle tone and balance.  In response to my question about his safety judgment, the doc asks me if I think my husband would know to call 911 in an emergency.  That's the doc's test of his safety judgment?  Are you kidding me???  

According to my husband everyone is making mountains out of molehills and he should be given complete freedom and independence to enjoy his "retirement".  He'd like to get going on his bucket list -- Hawaii, Alaska, train trip across Canada, see the Northern Lights.  

Whoa.  Retirement?!  He was being disciplined by his employer BEFORE his back surgery and the subsequent complications.  He wasn't doing his job.  He wasn't completing tasks.  They found him sleeping at his desk.  He was playing games on his work computer.  His coworkers had been protecting him for at least a year.  They were working around him.  The same has been going on at home.  No participation.  We have been working around him.  He didn't retire.  He QUIT…. on his family and his job and his life.  

Is it dementia?  At this point I really don't know.

So I keep my voice low and calm.  I ask questions and wait for answers.  I sit but not really still -- my foot is shaking while I wait.  And I silently scream.

Faces of Love

I love getting together with my big family.  Every gathering is a bridge to both the past and the future.  Grammy at 96 years old can't hear very well, or walk very fast, but has held every baby born in this family for the past 70+ years.  The siblings, who have fought, laughed, cried, united, pulled away and united again, know the rhythm of true lifetime relationships.  The cousins, old to young, married, single, students, children, workers -- and yet all share certain visible characteristics of this family.  Quick smiles, expressive eyes, lots of affection.  There are stories from past gatherings, stories being made and many stories yet to come.  And every story joins us to our younger selves.

I looked around a table last night and saw amazing faces of love that were united, not by blood, but by choice.  Bridges to the past when all, including my husband, were young, strong, athletic.  Back then none had grey hair or fat bellies or diseases.  Back then the future was bright.  Dreams were big.  Responsibilities were small.  Around the table I saw men and women whose roads diverged in pursuit of their dreams.  All have battle scars of real life.  All have medals of honor for the courage they have to keep going.  All came back together to celebrate my husband's birthday and to love him through his failing health.  And all offer their love and support to me.

I am richly blessed.

Grace and mercy

Did you know that a person with dementia can't remember how to move their body so straightening themselves in a chair is puzzling?

Did you know that a person with dementia can't remember what utensil to use so they choose one, even if it's their fingers, and use it for everything?

Did you know that a person with dementia perceives themselves as healthy and whole and so they attempt to do "normal" things that they are no longer capable of doing -- drive a car, walk without a walker, take a shower?

24 hours at home and my husband has demanded car keys, credit cards, ATM card.  He has broken a cup trying to get up from a chair without his walker while holding a cup of coffee.  He has rooted through my desk even after being asked to not "mess up my system".  He has walked out of the house without saying what he was doing.  Thankfully he only went to the mailbox but then that's an issue because I had to go hunting for what he did with the mail.  He tried to get on the internet to check our accounts, bills, etc.  So far no logic or explanation satisfies him.

He is already losing his posture, again, as he is inattentive to his body.  He reminds me of a young baby who has neither the self-awareness nor the body control to sit themselves up, roll over, or move from an awkward position.  He slumps forward with his head down as he walks and thus runs into things.  Reminding him or prompting him brings either a VERY long delay in response or anger.  At the same time he resists continued physical therapy because he "doesn't need it", imagines they are "just ripping us off until insurance runs out", or even that they know we have savings and are scamming us for our money!

The caregiver who has been with us 2 days is great!  What a God-send!  My husband doesn't like her because he thinks she is "watching his every move" and is trying to catch him doing things "wrong".  He has no insight into the care he needs.

So here's what I have learned in 24 hours.

• My husband is a rambunctious toddler in a BIG body.
• Serve foods that can be eaten ONE way -- all finger food, or all fork food, or all spoon food!
• Lock up everything I don't want him to get in to!
• Learn to shrug and say "oh well" or "I'm sorry you're unhappy" rather than try to explain everything.
• Don't remind him to use the walker, to ask for help, or to fix his posture.  Just get up and bring him the walker, help him, or modify his posture with my touch.  Reminding him isn't going to make him remember.  He is in the Land of Unlearning.
• Quit trying to get him to understand and agree with my decisions.  Adopt a matter-of-fact attitude and tone of voice.

I am asking God for grace and mercy and a servant heart.  I will bring Him the little bit I have and ask Him to do again what he has done so many times before -- multiply it to be more than enough.

Yea, though I walk through the valley of the shadow of death, I will fear no evil.

Today sucked.  The weather outside was gorgeous -- clear blue sky, cool temperature, light breeze.  Inside, not so much.  Stormy, dark, hopeless.

My husband's company terminated his employment.  We have health insurance until 10/31 and then we will have to Cobra.  Now mind you, his employer knows what is going on, knows he's had surgery, lost his mind, went to rehab, back to hospital with an infection, back to rehab, now in skilled nursing for more rehab.  They know I am trying to get doctors to complete the paperwork that will allow him to retire from his job under the disability provision.  But some executive decided that money is more important than our family.  I'm sure it is about getting him off the insurance because they aren't paying him any salary -- he's out of leave and out of "donated leave".

I'm trying to keep my own business going, keep my kids' routines as normal as possible, take over managing all the bills, make safety changes to the house so my husband can come home and now this???!!!  I'm watching money fly out of my house and my peace right behind it.  And now I will need to join millions fighting with the healthcare.gov website to research health insurance options.  Great.

I know I am not promised an easy life.  But I do want a break.  This is my "valley of the shadow of death".  And I am afraid.  I desperately need my God to reveal Himself today.  I need a break in the clouds.

Seasons change

It's autumn.  I look at the canopy above me and see incredible color -- vibrant red, golden yellow, fiery orange.  On the ground the leaves are a beautiful contrast to the still green grass.  And the light play…wow.  The dappled ground has the ever shifting mosaic of light and shadow.  It's really beautiful.  At the same time I realize that all this color is because the tree is shutting down in preparation for winter.  And the thinning of the leaves allows greater light play.

Today it is the same with my husband.  His body and brain are shutting down in preparation for the winter of his life.  Here too is the shifting mosaic of light and shadow.  A strong voice here.  A look of utter bewilderment there.  Concern about bills now.  Later dropping food everywhere like a toddler.  Talking about his beloved St. Louis Cardinals with a friend.  Having lunch with me and not uttering a word.  In the light there are glimpses of my husband -- fiery, golden, vibrant.  In the shadow everything is muted, faded, a remnant of what once was.

I am sad.  Sad for him.  Sad for me.  Sad for our children.  I'm thankful for the spring and summer we shared.  I am thankful for the beauty of the autumn that can take my breath away even as I see the winter coming.

Oh Toto, we're not in Kansas anymore....

My world has forever changed.  He can NEVER be left alone.  He can't EVER drive again.  He can't EVER be trusted with money, or decisions, or our future.  He has become an unpredictable young adolescent -- good judgment some days and a temperamental toddler on others.  

He looks like my husband sometimes.  Beautiful blue eyes.  He even sounds like him sometimes -- funny, charming.  But mostly he looks and behaves like a 95 year old man.  IF he shaves, he misses huge areas.  He has ear and nose hair sticking out and doesn't care.  He repeats himself.  He has lost most manners.  His interests are focused on pornography, sex, and gambling even though these all have negative consequences for our marriage and family.

I'm starting this blog to help me navigate this new chapter of my life.  While I have been living with my husband's Parkinson's Disease for 15 years, in the past 3-5 years he has slowly become a stranger.  Recently he was diagnosed with REM Sleep Behavior Disorder and Dementia with Lewy Bodies.  My perspective on the past several years has shifted.  My anger has subsided.  He wasn't the asshole I thought he was.  The dementia was creeping in and beginning to cast shadows where there had once been light.  He is lost.

So I am married without a husband.  I'm learning to be "single" again and taking on all the responsibilities of a household and family.  I know I am not the only person dealing with this.  Hopefully this blog will bring together a community who are all Living in the Shadowlands.

I know the Lord is always with me. I will not be shaken, for he is right beside me. No wonder my heart is glad, and I rejoice. My body rests in safety. Psalms 16:8