Tag Archive | Alzheimer’s

Daddy’s Hands

handsWriting hasn’t been a priority lately.  You may have noticed.  Well, you probably didn’t notice and that’s okay/  If you’ve ever read my blog it was ,most  likely because someone you love has Alzheimer’s disease or dementia and will understand. I haven’t written because there really wasn’t much to say.  Not much has changed.

While I wasn’t writing, I have continued to grieve over the loss of my Dad.  No, he hasn’t died but he is every bit as gone as if that were true.  Dad has lost a lot of ground.  His communication is random and mostly a garbled mix of sounds that once were parts of words.  He still smiles if you act like you told him something funny and on a really good day, you can tell him who you are and he will say something like “that[‘s nice”.

I have become obsessed with Daddy’s hands.  I think of his hands often and remember the gentleness of his touch.  Sometimes late at night I flash back to better days when his strong grip on my shoulder was as close to a hug as he could muster at the time.  Mostly I remember him walking up behind my mother and scratching her back tenderly.  It was how he said “I love you” to her without words.

My Dad wore two rings; one on each hand.  He never took them off.  One, his wedding band and the other a ruby Masonic ring that was passed down through the family when he became a Mason.  Dad lost the ruby ring about a year ago and he has lost so much weight that we took his wedding band home before it too was lost.  Even without the rings, I am still obsessed with Daddy’s hands.  The hands are all that physically resemble this man who has held my heart in those hands for almost 60 years and oh how I miss him.

It’s funny how something as simple as the sight of those hands can trigger a lifetime of memories. And I find myself wondering if Alzheimer’s will one day steal those too.

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Brrrr….It’s Cold Outside

snow 1-30-03bIt’s -11 degrees outside this morning.  That’s too cold for any living creature to be outside in the elements.

As I sit here in my warm little home sipping a steaming hot cup of coffee, there is an elderly  man lost.  He has Alzheimer’s and has wandered from his home. All the local media outlets are airing his photo and asking the public to be on the lookout for him but the chances of him surviving are slim.  My heart aches for his family and I pray that someone, somewhere, saw him and took him in.  I pray he is safe and warm because this could so easily have been my Dad – before we got smart.

If you have a loved one with dementia or Alzheimer’s, please contact your local law enforcement.  Ask if they are enrolled with Project Lifesaver.  And if they are, get your loved one registered with them.  To learn more, click the link below.  If the gentleman mentioned above had been registered, he would be safely back with his family.  It could have saved his life.

Project Lifesaver: Saving Lives of At-Risk Youth and Adults

Alzheimers Guilt

Christmas came and went and so has the first month of this new year.  Dad co25014 Christmas tree at Eddie'sntinues to lose ground slowly.  His hearing has faded and his vision has gotten worse.  He sleeps more and paces less.Food no longer teases his taste buds and meals are just part of a routine. I wonder sometimes if it’s just the disease or the lack of stimulation.  Dad now refuses to participate in group activity and prefers to just be left alone. His sense of humor is still intact and he loves to laugh with both the staff and his family.  Laughter was prevalent in our family and even Alzheimer’s isn’t powerful enough to rob us of that.

There are days when I feel guilty.  Sometimes the guilt is about not wanting to visit as often.  Sometimes it’s about not taking care of him at home.  I’ve learned to live with the guilt but it still hurts sometimes.  My Dad didn’t deserve what Alzheimers has done to him but this disease simply does not discriminate.

When I started this blog, I hoped that in sharing the experience, others might be helped by knowing they weren’t the first to feel angry or sad or, afraid.  After all this time I still feel all of those things from time to time.  I cry easily over the smallest of things and am surprised when the big things don’t affect me at all.  If I’ve learned anything at all it is that I have a lot more to learn and I am expecting 2015 to be full of hard lessons.  We can’t hold this disease at bay much longer.  That much is evident.  The medications (Namenda and Aricept) gave us a bit more time with Dad and the Seroquel has helped to balance the fear and confusion that Dad must have felt as his senses lost their connection to rational thought.  Now, it feels like we’re watching a light bulb burn out slowly.  Every now and then there is a flicker of bright light and then it pales again.  Each time leaves me wondering if it is the last and I am always surprised when I catch myself hoping so.  The guilt comes in waves again,

If there is a bright light here it is that my Dad is content.  He isn’t suffering.  He doesn’t miss his family and friends but we sure miss him.

Thanksgiving is Cancelled

ThanksgivingWe’ve cancelled Thanksgiving.  Well, that’s not entirely true.  It’s more like e have postponed it.  It seems that my brother’s family is passing  around one of those early winter head colds and we don’t want to pass it to my Mom and Dad.  So, if everything goes well, our Thanksgiving will be next weekend.  We will also be celebrating Dad’s birthday at the same time.

I guess there is something positive to come out of Alzheimer’s.  Since Dad has no concept of time anymore, we can make any day special.  He will celebrate whatever we tell him we are celebrating and never doubt us.

For those of you reading this, I wish you a Thanksgiving of peace and the treasure of making one more memory.  Be grateful, if even in some small way, because Alzheimer’s has shown my family that what you have today can be gone tomorrow.  Blessings to you and yours!

Alzheimer’s and Birthdays

I haven’t written in a while.  Sometimes I just don’t want to deal with what Alzheimer[‘s has done to my Dad.  Actually, it has changed our whole family and that makes me really angry sometimes.  Today though, I just miss my Dad.  Next week he will turn 86 years old.  He won’t even know he had a birthday.  I bought him gifts though but I ask myself why I did that.  He;ll open them and declare how wonderful they are and then 86 seconds later he will be lost in that fog again.

Not much has changed since I last wrote.  Dad has a bit more trouble eating and they have changed his diet a bit to prevent choking.  He’s become more resistant to being groomed and he is pretty content to lay on a sofa in the day room and be left alone.  My visits get shorter each week because he just isn’t interested in conversation.

It seems like we’ve been stuck in this time warp for a long time.  It’s funny but I can’t even remember how long it’s been since we got the diagnosis.  I think maybe seven or eight years.  However long it’s been, it’s been too long.  With all the recent news about Death With Dignity, I am certainly wondering why more states haven’t passed the legislation.

I’m a bit down today so I’ll keep it short.  This doesn’t happen as often as it once did.  We learn to cope, don’t we?  I think it’s the birthday that has brought me here so it won’t last.  It’s just that today I miss my Dad and I wish he knew it.

Learning to Lie

The doorway between truth and lies.

The doorway between truth and lies.

Alzheimers disease continues to dominate our lives.  I’m rarely the daughter anymore.  I’m really just someone who seems familiar.  Dad continues to lose ground.  He isn’t as steady on his feet now and his sentences sometimes end up a garbled mess of non-words.  In spite of it, he still loves to laugh and if I meet him in his world, he’s pretty happy.

 

I still have to make myself visit him and then feel guilty for feeling that way.  My brother has found the balance and he sees Dad weekly and takes him out for a short ride.  That works for him and is less depressing than sitting in the memory care unit with so many others just like Dad, or worse. Those visits give us a glimpse of the future and none of us want to go.  .

 

I guess our biggest struggle has been in trying to help Mom learn to cope with Dad’s disease.  At her age, it’s just hard for her to accept that he can’t get well.  Her time with him is frustrating for her since she still thinks she can ask enough questions to draw him back into her reality.  I cannot imagine how she must feel when the man she has loved for 64 years doesn’t recognize her and, can’t remember the milestones they’ve celebrated together.

 

Mom visits 3-5 times a week but the visits are growing shorter in length.  She seems satisfied once she sees that Dad is clean and as okay as we can hope for.  The problem comes when it’s time for her to leave.  For weeks on end she left Dad with tears streaming down her face.  She would prepare to leave and tell Dad she would see him tomorrow.  Even now he is sharp enough to know (for a minute anyway) that he doesn’t want her to leave.  And, he’s not shy about saying he doesn’t like them living in two different places.  It tears my Mom’s heart into shreds.

 

My brother and I have learned that it’s easier for all concerned if you just tell a lie.  It’s easy to tell Dad we’re going to the bathroom or to get a soda, and then just vanish.  Before we can get to our car, he has forgotten we were there.  He didn’t know us anyway so he can’t be mad at us.  Mom has a hard time learning to lie to the man she’s been completely honest with for 64 years.  But, yesterday was a monumental day.  Mom called me and said that when she prepared to leave Dad, she told him she was going to get her hair done.  He let her go without a fuss.  That, is progress.

 

Today, I think it’s safe to say that Mom is learning to lie.  Isn’t that a sad commentary on what Alzheimer’s disease does to families?  Hardly a day goes by that I don’t think about the hard decisions we’ve made and how it must have felt for my Mom.  She not only lost her husband to a horrible disease but she also lost the home and all the reminders of their life together there.  Yes, I think of her a lot these days.  I wrote about it once and I think it’s time to do it again.

 

So that’s it for now.  We’re doing okay.  If you’re facing the future with Alzheimer’s, you’ll be okay too.  I promise.  You’ll learn to be strong and you will learn to lie.  It’s easier that way.  So, my wish for you – that you will lie only when necessary and that all your lies will be harmless.  It’s an art.

 

Five Things Care-givers Need to Survive lzheimer’s Disease

When a loved one has Alzheimer’s disease, life demands change.  Can you guess who has to change?  Yeah, it’s you, the care-giver.   The person with Alzheimer’s will constantly change but will have no control over the changes.  If you’re going to survive with your brain intact, you have to make the changes.

I’ve learned that there are five things a care-giver simply has to develop for themselves.

Courage.  It’s probably the most important asset of all.  With the future so uncertain you have to believe that you are going to be okay.  Remember that others have paved the way for you and are there to hold your hand.  Be brave!

Patience:  You’ll find that it takes your loved one longer to do everything. And, you can’t rush them.  It takes them longer to eat, longer to tell a story, longer to get dressed, and even longer to brush their teeth.   Try to rush them and you’ll pay the price.  They will take even longer or stop trying all together.  Slow down.  Take a deep breath.  And…wait for them!

A Place of Refuge:  We all need a place where we feel safe.  We need somewhere that shields and protects us from the pain of watching a loved one slowly lose their mental and physical ability to return love.  The work of a care-giver is exhausting.  Give yourself permission to retreat.  Take a break.  Renew!

Faith:  No matter what you think, in order to deal with the highs and lows of Alzheimer’s disease, you have to believe in something bigger than yourself.    You need a place you can turn to where you can lay it all down and walk away knowing that what will be, will be, and in the end, it will be alright.  Believe it!

A Sense of Humor:  As Alzheimer’s disease progresses, those little moments of joy become more and more random.  It’s so easy to get caught in the trap of worrying that each change is the beginning of the end.  What a waste of precious time.  Remember always that your loved one has retreated into a world all their own.  They can be happy there, if you let them.  Stop trying to test their memory.  Don’t try to force them back into your world.  It can’t be done.  Be bright.  Be happy.  Reassure them and laugh easily.  These are the days you will remember.  Make them happy!

 

No one will tell you it’s easy.  It’s not.  But here we are.  It hasn’t killed us yet.  If it doesn’t kill us, it will only make us stronger.  We will live to see another day and if we’re lucky, we will live long enough for science to find a successful treatment or, even a cure.  Be brave, be patient, take refuge and renew.  Have faith, and laugh when you can.