Tag Archives: foundation

The Conversation of Alzheimer’s and Being Selfish

Regardless of who in your life has Alzheimer’s, once you hear of the probable diagnosis – your attitude towards the disease changes.  We all know it’s a horrible and devastating disease.  When we hear of a friend, colleague’s or even an acquaintance’s family member who has it, we are sympathetic and express our heart felt sadness and concern.  But when it’s someone who is close to us and/or our family member, it strikes a different chord.

Being a nurse, I realize that this is true for just about any devastating disease.  But when we first hear, “Alzheimer’s”, our thoughts, more often than not, go to a fear that the loved one will, at some point, not recognize any of their loved ones including themselves.  With that thought, one might think that our fears are selfish.

While the thought of not knowing my children (if stricken with Alzheimer’s) strikes a fear so deep in me that I can’t put it into words, I think I find some comfort in the thought that I would soon be incognizant to the world around me and find solace in knowing I’d be lost in the world that one goes to when stricken with the disease.  But the thought that I could be face to face with my own  mother (if she were to ever be stricken with Alzheimer’s), for example, and not be able to see and feel the connection of  mother and child, is a pain that I wouldn’t be able to hide from.  It’s a pain that I couldn’t escape and that is terrifying to me – as I am sure for most people at that thought.  So to feel one’s own fears when it’s someone else’s disease makes you wonder if it is a selfish thought.

The definition of selfish, according to Merriam-Webster:  having or showing concern only for yourself and not for the needs or feelings of other people.  Then the answer, in my opinion is – no.  I don’t believe that one is to feel that they are selfish when wrestling with their own fears at having lost their identity in the eyes of their loved one.  Because, although we are worried about the day when our loved one can’t identify us, we are genuinely worried for them as well.  Therefore, the feeling of guilt (which arises from feeling that one might be selfish) should be allayed in knowing that we all have needs during a time of devastation, no matter who the actual victim is…because we are all victims when Alzheimer’s strikes.

As long as we are walking the road with a victim of Alzheimer’s, we too will suffer.  And that’s ok to talk about.  It’s ok to have needs of our own.  It’s ok to ask for support.  It’s ok to think of yourself and your own feelings when your heart is breaking.  But more importantly its ok to have the discussion(s) now.  Now when no one around you is sick.

Give your colleagues, friends, and/or family the “o.k.” to feel whatever they may feel if you are ever incapacitated with any illness.  Ask for the same from them.  The conversations need to be done, well in advance of receiving any diagnosis so as to make it easier for the ones who are, often, denied their own grief because they aren’t the one actually battling the disease.

Because when it comes to a disease like Alzheimer’s, we are all in the battle.  We all play a role and we all hurt.

Hugs,

Tami

Clarifying “Bleeding Hearts”…

When a family is stricken with Alzheimer’s, there are tears, broken dreams and broken hearts.  My book’s title, “Bleeding Hearts” refers to the pain that is endured with the diagnosis.  But it also refers to one of the favorite flowers of the Alzheimer’s patient in my story.

My book is the story of the painful journey we traveled with a family member who had early onset Alzheimer’s.  In re-reading the book (one last time before it goes to press) I’ve realized how many people were eventually affected by this single person with the disease.  Multiply that by the millions of people around the world who have to suffer such a journey and if only a few could read this book, perhaps it could help some others get through their struggle.

There are no magic books or magic words to help someone in such a struggle.  But comfort might be found in reading the way others deal with similar obstacles.  Magic doesn’t exist, at least I don’t know of any, so we all move through our lives the best we know how and hope that at the very least, we’ve learned from it and at the other end of the spectrum, that we’ve helped someone else learn.

Additionally my hopes, with this book, are that a foundation would be set up in Gaye’s (the person who had Alzheimer’s in the book) name to help give support to the family members of the one who has Alzheimer’s.  For the truth of the matter is, the person diagnosed with Alzheimer’s is the patient/victim.  But it’s not long before the victim is living in a silent world without knowledge of who they or the ones around them are anymore, so their pain has, somewhat, ended for them.  So you see, in my opinion it’s the families of the victims who suffer the most.  They are the ones who have to painfully witness the deterioration of the mind, spirit and, eventually, the body of their  loved one.  They are the ones who have bleeding hearts.

Until next time,

                 Hugs,

                           Tami  🙂