Family problems and Alzheimer's

This is a topic that was completely unexpected when our dad was diagnosed.  Regrettably, it is all too common.


Several months ago, one of my dad's doctors asked me how my family was getting along.  Is everyone in agreement?  Is anyone quarreling?  Is everyone on the same page?  I told him that my siblings, and I are all on the same page, and in agreement, and fully supportive of our mom, and our dad.  He got a look of surprise on his face and said, "Well, that's great because it is really unusual for a family to get along through all of this.  Eighty percent (80%) of the patients I treat have horrible family issues because of how they perceive someone is being cared for by the caregiver.  Your family is blessed not to be one of them!"

But, we are.  We are one of them.  While it is true that my immediate family has maintained a wonderful, and very supportive relationship through this (we are closer than we have ever been!), it is not true of many in my dad's extended family.  In fact, there are some who no longer consider us family.  Sad, but true. We still love them, and consider them family, and have to choose over, and over, and over, and over again to forgive them when we hear the things they are saying about our family.

And we wonder...why?  How could our family do this to us?  How could our friends believe the things they are being told?  Why aren't they supporting us at a time when we need them the most?  We need them. They are part of our dad.  We don't want our children to lose that connection to their grandfather.

I wish someone would stand up for us.  I wish people would stop and think about the things they are being told, and then come ask us questions, so we can tell them the truth.  There are always two sides to every story.

My siblings have tried to talk to those who seem to be in disagreement with us. They have tried to address their concerns.  They have tried to explain our actions.  They have tried to explain this awful disease.  They have tried...  It was to no avail.  We will never see eye-to-eye on this.

So, what do we do now?  We put out one fire at a time.  We get angry.  We choose to forgive.  We hear more lies.  We get angry.  We choose to love...because love is a choice, not a feeling.  We choose to pray for them.  We pray for us...that we will not become bitter.  We continue to live in this nightmare, and yet, we find joy because we know we are not alone...God has not forsaken us, nor our dad.  We encourage each other.  We put our heads together, and look for a way to make dad better (always looking for that precious balance of medications!), or at least comfortable.  We try to support and encourage our mom because this is even more difficult on her than it is on us.

If you are one of the eighty percent who are dealing with family problems...I am so, so sorry.  There is enough stress with this disease, without having to deal with family problems on top of it.  I'm afraid I don't have any really good advice for you, except...pray.  Please pour your heart out to God, so you do not become bitter.  Choose to love instead of hate.  Choose to bite your tongue instead of spewing words that will not change the way they view, or treat you.  Find someone who supports you, who you trust, that can listen to you when you need to vent.

And sometimes, you have to choose to walk away.  I have family members who no longer want me to be in their family.  It hurts.  It makes me really sad.  I not only grieve the loss of my dad, but the loss of aunts, and uncles, and cousins who I love dearly.  I have had to make the choice to walk away, and be grateful for the family that I still have.  And, even though it continues to hurt, I walk in peace because God knows my heart.

The Roller Coaster called "Alzheimer's"

Come with me on a roller coaster!  Many roller coasters I remember riding with my dad as a child seemed similar.  They were something like this:

You sit in a seat, and make sure you are securely buckled.  You begin to slowly move straight ahead, and then, you begin going up a steep hill.  It's almost like you are tugging along until you get to the very top. When you finally reach the peak, there is a small bump, and then you pick up speed while going around a corner.  Then, you head straight down!  AAAAAAGGGHHH!!! You are terrified!  You hit the bottom of the hill, and find a sense of relief.  The relief is only momentary because suddenly you are speeding, speeding, SPEEDING around corners and over small hills...but you're still okay....you are just hanging on for dear life!  You feel the car pick up speed again as it brings you up, and then takes you upside down in a corkscrew.  You begin to panic.  You feel out of sorts.  You go straight again, and begin to relax a little, but then you feel the speed increasing, once again, and you are taken upside down. You feel yourself being twisted and turned, and you hope that this moment will pass quickly...because it isn't very comfortable, and it is actually quite stressful and terrifying. Finally, you begin straightening out, but you are surprised by a few quick turns, and hills, and bumps, and then you feel everything begin to slow down and you come back to where you started... there is calm, and peace.  You are relieved that it is over.

It sounds stressful, doesn't it?  This is the best description I can give when Alzheimer's becomes part of your life.  It.is.stressful.  It is a roller coaster with hills and bumps, and death-defying drops, and fear, and doubt, and unknowns...oh, the many unknowns.  This is one of those posts that won't be very encouraging.  I don't like those very much, but if we are truly going to be honest about this disease, then we would be doing others a disservice if we did not include this information.

Alzheimer's is very much like a roller coaster.  You are going through life, and then it seems that you are in something of an uphill battle.  You see your loved one forget things, and misplace things, and display odd behaviors.  It can get frustrating when you can't understand why an adult can't complete a simple task. When I sat with my dad and a doctor, and the doctor asked my dad to draw the face of a clock, I could not believe my dad's response.  He drew a few scribbles and that was it.  I knew if he couldn't do such a simple task, there were far more difficult things he could not do either.  It was heartbreaking to watch him struggle.

Perhaps that first bump, when you reach the top of the hill, is the confirmed diagnosis of Alzheimer's.  You sail along around a curve, and things don't seem too bad, and then the massive hill is before you, and you find yourself free-falling, and it feels very much out of control.  That out-of-control, downward fall is sickness. For my dad, it was a Urinary Tract Infection in July of 2013.  Illness, any kind of illness, can bring a downward turn so fast that you can hardly catch your breath, and you feel lost and confused.  You might catch a small reprieve, but then this nasty disease hits another part of the brain and you end up in a corkscrew that sends you spinning, and grasping to find out what is wrong, and how to help this person that you see changing before your very eyes.  You continue to gather your wits about you, but you continue to be caught off-guard by twists and turns and bumps, and hills, and when you think you are managing those things, you are off spiraling upside down again.  This time, you wonder if you will ever be able to relax again, but the turns become fewer, your loved one becomes less-abled, you continue to hit a few more bumps, and then things begin to straighten out and you ride on to the end of the line.  You say goodbye.  You are glad it is over, for now there is peace. You would do it all over again if it meant that you were able to spend time with that person who has just had the ride of his life.  Still, you wish you could have chosen another ride.  One with less twists, and turns, and ups, and downs, and pain.  It is done.  You cannot go back.  You don't wish to do it again.  You must move on.

We are still experiencing many twists and turns with my dad.  I know they will become fewer at some point. Every time my mom calls (I talk to her almost daily), I feel myself tense up because I don't know what news she will have of my dad for that day.  There are many ups and downs.  It is very difficult.  Just when we think his doctor's have found a good balance of his medications, something else happens and we are back to the drawing board.  Each patient is different.  The ride may not be so rough for some.  Regardless, it's always a ride that no one would choose.  Some day this ride will be over.  We will continue to look back at the twists and turns.  Somehow...we will move on.  In the end, God's grace is sufficient...this disease just causes us to hold on to Him for dear life.

God is still good...always.

Thoughts on the Diagnosis--Cameron's story

Today's post is by another grandchild.  Cameron is Dana's second child.  He is thirteen, and in seventh grade.  He recently chose to write an informative paper for school about Alzheimer's Disease. Cameron did an excellent job with his research for the paper, but sadly, he has the life experience, as well.  This was his assignment, left uncorrected.  We wanted to post it exactly as he wrote it.

My grandpa has Alzheimer's. Does someone in your family have it? It's a really scary and dangerous disease. Three important things about Alzheimer's are what it is, how it works, and what it feels like to have family with it. After this you will be fully informed.

            As said above, you might wonder what Alzheimer's Disease is. It's a "progressive degenerative disease that attacks the brain's nerve cells." This results in memory loss and loss in language skills. This disease can change your behavior and in general, the way you act. Your brain hardly works, as if it's numb.

            How Alzheimer's works isn't simple at all, there are seven stages to it. First the person looks and acts fine. Second the person notices his/her slow memory problems, third all the other people notice this person's changes. A doctor will interview and diagnose the person with Alzheimer's. The victim will need help with day to day activities. Several things happen in stage 6, memory worsens, personality changes, person needs help with small things like eating. Stage seven the person loses almost all of their abilities, they can hardly carry on a conversation. These are the seven biggest steps.

            After all these big steps and facts here's how this feels for my family. This disease is sad, my grandpa told my mom she wasn't his daughter. The Alzheimer's Disease hurts the victim's family just as much as it does them. Really all you can do with Alzheimer's is accept it, deal with it, and remember the good times you had with the person who has it.

            So here's three solid paragraphs on Alzheimer's Disease. How it works, what it is, and how it feels to have a family member with it. It's hard for the family members, not just the victim. But, you have to accept it, sure to get your tears out. But Alzheimer's has no cure.