Battling against Alzheimers Disease

DAISHA2I’m not sure why I want to write this blog.   I know why I don’t want to write it…it isn’t to educate or console other victims families.  I’m much more selfish than that. I want to write about what this disease is doing to my dad and my mom…and me.  About how I would much rather lose him to a disease that takes him all at once, and not a disease that just leaves his skeletal parts behind.  Somewhat operational, but not really.

It will be a personal journal for all of us, it certainly won’t be eloquent or thought-provoking. It will be raw, real and probably knowing me…full of profanityAlzheimer’s deserves nothing less.  It doesn’t deserve eloquence in its explanation of what it slowly does to somebody’s totality. It doesn’t deserve medical terms, or hopeful ramblings.  It deserves exactly what it gives…it deserves pain, hopelessness…and profanity spewed whenever necessary.

My dad was diagnosed with Alzheimer’s roughly seven years ago.  At first we didn’t really believe he had the big AD.  We preferred to call if some type of dementia.  That somehow made it more manageable and less threatening.  People have had dementia for centuries and families have been able to survive it…nothing to see here folks.  Just forgetfulness, or random acts of peculiarity.  But now we know it as a four letter word.  One I won’t use for now….

We have often used humor during the early years.  Some of my friends never quite understood how I could laugh at my dads somewhat child like behavior when my mom forbid him from having another piece of pie, or another helping of meat and potatoes. Or how he sticks his tongue out at my mom when she makes him take his daily walks.  Not only does he have Alzheimer’s, but he also suffers from Diabetes so she is truly not trying to torture the man.

In the beginning my friends couldn’t resist taking my dad from our boat at the local sandbar and giving him an extra beer or cigar thinking they were rescuing him from a tyrant for a wife.  (Not really, everybody knows my mom as one of the sweetest people they will ever meet.  It just made it more fun to rescue dad from the “tyrant.”)  After several years even they realized his disease was real and he needed consistent monitoring.

After a major surgery this summer his disease has progressed rapidly.  His motor skills are declining and he is confused more than he is not…

So…I will write as I need to.  I will write to rid myself of the guilt I feel at times for being angry that this disease is ruining my life.  Yes…my life.  I already know it has ruined my parents. It has robbed him of his golden years after years of working two and three jobs to raise his family.  It has robbed my mom of any peace of mind for the next ten or twenty years….depending on how long he must succumb to this piece of shit disease.  And it will continue to rob me of living a somewhat guilt free life for wanting to enjoy my middle years without waiting for the next phone call to tell me he has fallen again…or worse.  That he has walked outside when he wasn’t supposed to and fell in the freezing cold…

See….even as I write this I struggle with making it public knowledge that I feel sorry for myself as well as my parents. Do I really want people to know how selfish I am..or weak..or overwhelmed? I would rather people think of me as hot-headed or stubborn or even a bitch at times.

To let the world know what is happening in the dark corners of my family is not something I would ordinarily do…but these are no ordinary times for us.  So….for better or worse I am going to tell my story and it will be to purge this son-of-bitching disease from those dark corners and put it out there for the world to see.  HERE IT IS WORLD…NOTHING TO SEE HERE BUT A FAMILY THAT WILL SURVIVE  YOU.

Poem

Do Not Ask Me to Remember

Do not ask me to remember,

Don’t try to make me understand,

Let me rest and know you’re with me,

Kiss my cheek and hold my hand.

I’m confused beyond your concept,

I am sad and sick and lost.

All I know is that I need you

To be with me at all cost.

Do not lose your patience with me,

Do not scold or curse or cry.

I can’t help the way I’m acting,

Can’t be different through I try.

Just remember that I need you,

That the best of me is gone,

Please don’t fail to stand beside me,

Love me ’til my life is done.

-Author Unknown

Fight

Hi Dad,

I write to you because I know you can’t stay connected to us anymore…I write because there is still so much I want to say and if I try to do it face to face…I will falter because I will see the disconnect…and it quiets me.

But what I want to say is…Fight.  Fight the fine layer of grayness that has enveloped you…Fight the indifference…Fight the confusion…Fight for us….and you.

It feels like we have already lost so many parts of you…and I see the next phase coming…damn it….Fight.

And I will fight to stay vocal…and connected to you…even if it feels you are a million miles away…or maybe I’m the one that’s a million miles away…a safe distance from “that layer of gray” that steals all that is good in the world.

I want you to sit at the kitchen table with us…even when you would rather retreat to the basement…again.  I want you to pet the dog…you love dogs…you just don’t remember.  I want you to enjoy walking again…even if it’s just around the yard. I want you to laugh…I want you to Fight with the passion you had for decades debating all things “Democrat.”

There is a song I love called “You can let go now Daddy.”  But you can’t let go…not yet…I still need you here…ask me your questions…hide in your basement…stick your tongue out…have your accidents…but hang on…and Fight.

 

Mom

Hi Mom, I saw you today…for the first time in a long time I really looked at YOU.  And you look tired…and stressed…and your knees are acting up again and you can barely make it up the stairs…and now I feel guilty as hell.  It’s always about Dad…how is he doing…was it a good day or a bad day?  I’ve watched Dad closely…I haven’t watched you at all.

The reality is I haven’t “wanted” to see you…not really.  Because if I really see you then I see the inevitable…that it’s all getting harder…that you won’t be able to do this forever….that we need to make some decisions soon. And that means we can no longer just check in and test the waters…that it can’t just be about picking up for Doctor’s appointments…or the weekend trips to the lake.

I’m sorry I have avoided your struggles…if I didn’t see…I didn’t have to accept another parent is succumbing to this disease…just in a different way…but much worse…because you know what is coming…and Dad does not….you know the sacrifice…Dad does not…you are exhausted…Dad is just existing.

I wish I could say I am ready…but I am not.

What I miss about him.

finalcard74I shouldn’t have done it….sometimes nostalgia is good…to be able to look at the past.  But not today…today it hurts.  I came across some old video tapes of family gatherings…the way things used to be…I saw my recently deceased Grandparents…some old friends that have passed on…and Dad.

What I miss about you

  • I miss how tall you stood…with your shoulders back.
  • I miss your smile…how it used to mean something…now it seems to be a nervous reflex or…just empty.
  • I miss how you held your cigarette in one hand…and a drink in the other. I know…not politically correct…but those were the times…and it was called being a man’s man.
  • I miss how you slow danced with Mom…the way you held your hand up…and the way her hand fit perfectly. Now she takes your hand and guides you. And that’s ok too.
  • I miss your laugh…your deep laugh. I want you to laugh that way again…not for me…I just want you to feel that laugh again.
  • I miss how you carved the turkey.  Nothing deep about that…I just miss how easily you did it…and how much you truly enjoyed it.  That…I miss.
  • I miss how damn strong you were…in every sense of the word.

You were the like the great Mighty Oak growing up…Strong…Mighty…Stubborn…never bending and never waivering…didn’t matter what it was…politics…religion…child rearing…didn’t matter…Mom was the Willow…easy going…choosing her battles…she could be swayed…not because she didn’t have an opinion…she just never sweated the small stuff.  Now The Mighty Oak has weathered…and the Willow…because she is still sturdy as she bends…and sustains the storm of old age…protects The Mighty Oak.

And that’s ok Dad…

Signs

Signs…they are everywhere at my parents home.  When you walk in you will see a sign taped on the door…

“Jer – do not go outside.”

Walk to the bathroom and you will see another taped to the top of the toilet lid

“Jer – sit down when you pee.”

Walk to the basement and on the TV Receiver you will see another one.

 “Jer – DO NOT TOUCH THE BUTTONS.”  That one is capitalized because Mom has a really hard time fixing the remote when he touches the buttons.

Walk to the refrigerator and you will see

“Jer – do not eat your lunch until 12:00″

Walk to the phone and you will see

“Jer – do not answer the phone”. This one is for when Mom is gone. Because he won’t remember who called so she would rather they leave a message.  This one might seem trivial…but the phone is Mom’s lifeline…it’s her connection to “all things normal” don’t mess with her lifeline.

Someday he will no longer be able to read the signs. So I know I’m still one of the lucky ones.  Things are still manageable. If you want to call repeating yourself hundreds of times a day and communicating with your husband (or Father) of 50 plus years like a 6-year-old manageable.  We are great at denial…we don’t allow ourselves to go to that place…you know the place…it’s when you allow the future to seep in…and you get a glimpse of his final days…or months…when you silently barter with GOD…Please GOD…give me the signs…I’ll take them…give me the repetition of repeating myself…But please don’t give me this.  That’s where we hover…like Alzheimer’s Purgatory.  You know something worse is coming…but you don’t know when.

It’s all compartmentalized nice and tidy. Our “new normal” works until we see some of their friends out and about…and I see how simple and easy it is for them to go to dinner or shopping and a nice walk.  I see how easy it is to carry on a conversation with my dad’s friends about football…or the good old days.  It’s what retired people should be doing….not making signs and taping them everywhere because you are so tired of repeating yourself…and you understand you can’t watch him every minute of everyday…but it’s “not time” yet. It’s not time to go that “place.”

So for now we will continue to make light of the signs…it’s what we do…

While he still knows who I am

finalcard106So I came across this video and of course…it resonated.

My dad and I are a lot alike. We both love Notre Dame football…we both have a tendency to yell a lot when they are losing…we are both passionate debaters…ok we both love to argue our points. (Let me rephrase…he “used” to love these things)

So when I heard this song it made me wonder why I don’t say those words to him more often…”I love you.”  It’s true we never really grew up voicing our affections to one another, however, when friends came over for dinner and witnessed one of our lively family debates about important things…such as politics, or sports, or favorite TV shows, they would often tell us afterwards how entertaining it was.

But saying those words never came easily…and they still don’t to me.  I don’t know why…both of my grandparents died this year a week apart. They had been married for 70 + years and we always knew they would die together. We were fortunate to be there when each of them went…family members held their hands and told them how much they loved them…except me…I stood back…and lightly touched the blanket that covered their legs…and silently said good-bye.

So now I have the chance to say those words while Dad can still understand them…but I haven’t yet. Logically I think because I am there physically…it should show him how much I care.  But I know I should…they just seem to get stuck…combative words are easy…emotional words…not so much.

So I will work on them…and in the meantime I will continue to do the little things…and the big things to show my commitment and my love…and someday…

Lost

Sometimes I watch him…and wonder what he’s thinking. Or if he is thinking anything at all.  His eyes appear empty at times….or maybe it’s just sadness.  On occasion Dad will ask incessantly to go on a boat ride, and when we finally do he appears lost.  He becomes more obsessed about where we are going…or when we are going to eat (a recurring theme).  But sometimes he just looks sad…like he knows he is missing out on something but he’s not sure what it is.  Sometimes as quickly as we leave the dock he decides he wants to go back.

It’s a game of let’s entertain Dad…instead of interacting with Dad. Don’t get me wrong…we can still somewhat carry on a conversation…just keep it simple and about food.

I don’t know why I’m blogging about this…it really shouldn’t be a big deal…it’s nothing monumental or enlightening…maybe I’m the lost one…

A glimpse of Dad…a fleeting glimpse

It was crazy…and it was fleeting…but it gave me a moment of hope…and nostalgia.

It was another weekend at the lake and Dad was in one of his loops. (That’s what we call endless questions about the same subject…over and over again)  When all of a sudden my husband Dennis asked if he wanted to play some cards.

“I don’t know.” Said Dad

“Do you know how to play Gin Rummy?”

“I don’t know.”

And then Mom said  “Jerry, yes…you know how to play Gin Rummy, play with Dennis.”

So Dennis grabbed some cards and they sat down to play…and they DID play.  All of a sudden it was like getting a glimpse of Pre-AD Dad.  He was focused and relaxed and deliberate. There were no shaking hands…no confusion…just Dad playing to win…and he did win….more than once.  I kept watching…afraid that it was just a fluke, or maybe I was imagining his transformation…but I wasn’t…they played several games and Dad remained focused the entire time.  It wasn’t “entirely” like the old days…Dad had been known to steal the deal or conspire with his Euchre partner during bathroom breaks.  We once played a game of Pictionary with another family at a pool party. The teams were divided into the dads, the moms, and the kids. When it was time for “the dads” team to play they won easily each time.  At first, we weren’t paying much attention to what they were drawing since each team had their own little pad to draw on…and besides we were pre-occupied with the pool party.  But we eventually became suspicious since they were winning every single time.  After examining their drawing pad it was discovered that they were simply just spelling the word on paper…and that’s why they were winning so easily. Ok some people might not think cheating is funny….but I guess you had to be there.  There was enough of the old dad to bring those memories flooding back…and it felt good.

But it was fleeting…eventually he did grow tired of the card games…and the questions began again…and the lost look…and in another fleeting moment he was gone.

But I’ll take that fleeting moment…and I’ll take it for what it is…or was…A glimpse of Dad.

An old father, a son, and a sparrow

It has been several years since I last posted on this blog. I have my mental battles…like if I don’t talk about it, it might get better. Or Dad isn’t as bad as many Alzheimer‘s patients so I should just be thankful.

But it’s getting worse…not by leaps and bounds…but enough.  He’s much more childlike…and makes faces when he doesn’t want to do something. His gait is slow…and unsteady.  His hands tremble sometimes. He asks the same questions over and over and over again.

Not long ago Mom had told him to brush his teeth, and instead of going to the bathroom he went to the utility room and stayed in there for several minutes. Mom finally checked on him and asked him what he was doing. He stated he was looking for his toothbrush. She reminded him that his toothbrush was in the bathroom and not the utility room…and then slightly scolded him.  He hung his head and said “I’m not much good anymore…why don’t you just get rid of me?”  When Mom first told me the story my first instinct was to get angry and ask why she scolded him. But I already knew why…it’s because we have all been angered at times…and frustrated…and she deals with it every day.  It seems so simple…just answer his questions…no need to get exasperated or angry…just answer his question like he is asking for the first time…because in his mind…IT IS the first time.

We were told in the beginning that an Alzheimer’s patient will revert back to childlike behavior, and it could not have been a better description.  It’s like dealing with a child in a man’s body.  And we seem to be more tolerant of a child asking endless questions because they are just discovering their world and we want to be a part of it…but the world is also new to Dad everyday. He can look at the same sunrise everyday on the lake and ask the same questions dozens of times…”What lake are we on?” “What are we going to do today?” “Where are all the boats?” “What day is this?” “Did we already eat?”

So my mission is this…treat Dad like the child he has become…make his world new and exciting…answer his questions like they are coming from a child…because they are…but most importantly…remember him for the Dad he always was.

Dinner with Dad

The other night my son, husband and I headed over to my parents house for dinner. My son hadn’t been home in awhile and wanted to see the grandparents.  And besides….my mom is a really good cook…and I am not.

I was anxious to get his opinion of how he thought Dad was doing.

It started off really well.  We arrived and Mom had made a really big roast with mashed potato‘s, gravy and a big gigantic salad for me. Dad “emerged” from the basement and appeared to be engaged and somewhat talkative. He asked how my son was doing and it actually resembled normal conversation.  So far so good…

We all sat down to dinner and as expected it was really good.  The only small downside was trying to keep Dad from eating too much. At one point he tried taking some food from my mom’s plate. (This is somewhat customary now) After several more scoldings from her, everybody rose from the table and the guys went downstairs to watch basketball while my mom and I cleaned the kitchen.  Still…so far so good.

Afterwards, my mom and I went upstairs to her “Avon outlet” and I proceeded to pick out some of the items I needed.  And no…she is not a Avon Rep, she just buys a crapload of it from her own Avon Lady. (Note to self…consider becoming an Avon rep and make lots of money from Mom)

When we came back downstairs we noticed Dad was sitting by himself in the living room while the guys were still downstairs watching the game.  I continued down to the basement and Mom tried convincing Dad into coming downstairs and joining the rest of the family.  Evidently, he didn’t want to because she came down to the basement without him.

So…now things aren’t quite so normal.  We continued watching the games while switching over to “Million dollar listings” during the commercial breaks.  After awhile, Dad did come back downstairs but didn’t want to engage in any conversation.  We are a very talkative family and sometimes it is hard getting your two cents in, but he appeared completely dis-interested.  I’m not sure if disinterested is the right word…more like “lost.” I know at times like these I should try harder to engage him, but for some reason I tend to back off and ignore what is happening…or should I say not happening.  Yes…at times it is much easier to pretend things are normal.

The only time Dad responded to any of the conversation for the rest of the day was when I was telling a story about my friend Dick.  When I tell stories about Dick I usually have to talk in Dick’s dialect because it makes the story much funnier.  Dick has a distinctive dialect and it always makes people laugh….and yes…I do it very well.  So…anyway I was telling my Dick story and Dad actually laughed.  Not a loud laugh (I haven’t heard that in a long time) but a broad smile and chuckle.  What can I say…it made me happy.

After leaving my parents house, I asked my son how he thought the day went. He thought it went well.

“Really? You didn’t think it was strange that Grandpa sat upstairs by himself and wasn’t very talkative?” I said

“Well…yeah…I guess that was weird.”

So…what is my moral of the story today?  I don’t know that I have one, other than we all seem to have a different perspective of what the “new normal” is.  To my son..it was a normal day for Grandpa.  For me…it was just gentle and small reminder of what is coming.