Martyrs

No matter what a person goes through or how old they get, it never ceases to amaze me how many still live their lives in a high school drama holding pattern.

I suppose, for some, it is easier to play the victim rather than owning their shortcomings.

I've spent the last 5 years caring for my husband.  Living the beauty and tragedy of it all.  Trying to give him the best final years of his life.

The last 12 months I had gone so far as to announce publicly that those who wanted to see Randy were welcome....on more than one occasion.  Our door was always open. 

Even apologizing for my social withdrawal if it had made anyone feel unwelcome.  

Only to learn (once again) that some people, you will never please.

To learn that a few life long friends were hurt and even offended to not be given an invitation to the PRIVATE burial. (A privilege granted to those who made his last days better.)

The same friends who couldn't be bothered to come and surround Randy with the love and friendship he so desperately wanted.  Even for a moment.  

Who denied him this need for a year or longer.

Who chose not to attend his celebration of life, which was open to all, because their feelings were hurt.

Who decided to make the death of my spouse... their "friend"... all about them.

I find this to be laughable, mind blowing, insulting and frankly pathetic.

I also have learned that this is a common occurrence that caregivers experience after their loved one has passed.

So much unwarranted advice, discouraging comments and judgement.

Judgement as to what we should have done, how we should have done it and how wrong we were when making decisions for our loved one's care.

Judgement when making decisions for our own survival and mental health.

Judgement from those who eventually acted as if we never existed.  

Until, of course, it's over.  Then, suddenly, they are the victim, as if owed a courtesy they themselves could never bestow.

Then, judgement about how we made them feel.

I'm not sure why grown adults choose to behave this way. Choose to pass judgement on others when they have no clue what an excruciatingly painful journey this is.  Who couldn't be bothered to participate.

Fun fact:  41% of caretakers die from stress before their loved one pass and have a 63% mortality rate compared to non-caregivers.

We can do better than this as people.  We need to do better than this as friends.  We are better than this as humans.

Some simply choose martyrdom because it lessens the guilt.

I refuse to apologize any further to anyone for the decisions I've made, my less than graceful moments or the feelings that have been hurt along the way.

I was doing my best navigating an uncharted course and I had one priority... him.

Early Onset Alzheimer's is a rapidly growing epidemic.  The numbers are staggering.  The awareness is lacking.  The support is largely nonexistent.

Caretaker's do not need your "wisdom".  

We need your support.  A gentle pat on the shoulder.  An ear to listen.  Sometimes the ability to sit in silence with us while we absorb the weight of our world.

While this particular post began born of anger at the arrogance of others, it has evolved into something much more.

I am heartbroken.  

For my loss, of course,  but also for those who are still on this path.  Still facing the cruel words of family and friends.  Still navigating this road with no support or resources.  Trying to hang on to their sanity while fighting financial agencies, uneducated medical professionals and maintaining their own physical health.

Screaming for help and some sort of relief.

So, we, as caregivers, have no need or use for the martyr's.    We have nothing to offer you.  We have no desire to soothe your self inflicted wounds.

We will fight like warriors for those we love and those who love us back!

As for me, I've learned to let go.  To sever ties.  To be proud of what I have accomplished.

I will never be a martyr because I've chosen to focus on trying to make a difference. 

To be a better person.

A better friend.

A better human.

While I no longer travel the Alzheimer's road, I hope to continue to fight and advocate for all of the things I needed and never received.  I hope to be part of changing Alzheimer's awareness.

I hope to find a way.

Cheers💜