Category Archives: guilt

Changing a culture?

There are exciting happenings here in Germany!  The German people are embracing my book and some are even calling it “ground breaking”!  I have had friends, neighbors  and my husband’s colleagues, who have read the book, tell me how it has affected them.  Not just the sadness and triumph of the story but the honesty of events and feelings that I wrote about and how it has made them think differently about the situation.

While the German culture is very warm and personable once you get to know them, they can seem a bit standoffish, because of their reserved nature/culture.  Which leads me to share the praises that I am hearing from them.  I have been told of feelings of inspiration, being moved and/or being invigorated by my willingness to expose my inner most feelings during the time in which the book portrays which led them to start the conversation of letting people “move on” when the need arises.   And they can do so without shame or fear of judgment.

It was one of my book’s enthusiasts who then gave me the name of a gentleman, Werner Pies, who, before he retired, would endorse and promote works by artists and/or writers in the area and told me to call him.  Mr. Pies and I spoke briefly on the phone and after hearing what the book was about, he asked that I bring a copy of it so that he may read it.  We then made arrangements to meet that following Saturday.

We, my husband and I, met Mr. Pies and the moment I saw him I felt at ease with him.  He was a distinguished looking man who had a jovial heart and an apparent (by the collection all over his home) love for art.   During our meeting he then told me he would read the book and discuss it with some contacts he had in town.  One of the contacts was with the local high school.

He explained that by high school, the students would have had several years of English and they were always looking for interesting books to read in English, especially if they could have a reading and question and answer from and with the author!  I was excited at the prospect.  I know a high school may seem like a strange platform to want to have my book promoted, but I look at it as one of the best opportunities to engage and begin the conversation that I feel my book is trying to arouse.

If young adults can read and experience what I was for Eric and his family, perhaps they will, and can, embrace the idea of a support partner for anyone during their difficult journey with their sick and dying loved one.  If people begin talking about it, the subject may lose it’s “taboo” and be less of a sensitive or controversial subject -which is the main reason for me writing the book in the first place.

I’ll keep you posted as to the outcome of my meeting with Mr. Pies and his “contacts”.  Keep your thumbs in!*

Hugs,

Tami  🙂

*Germans tuck their thumb in under their fingers just as Americans cross their fingers.

What the “other woman” can be…

As the “other woman”, in my book “Bleeding Hearts”, I attempt to give the reader a perspective on how the other woman (or man) could be of support for the spouse of someone with a debilitating disease like Alzheimer’s. So that others can see how an outsider can be of great support during such a time.

As a society some are often so quick to judge what is right and what is wrong with a persons actions in such a case.  Attempting to open conversation by writing the book, I put myself in just such a position of being judged right alongside the spouse.  The looks and stares I received from the staff of the nursing home were difficult to bare.  The discussions among some of my colleagues and some acquaintances were equally, if not more arduous to hear.  I believe I am able to grasp where those emotions came from; the sympathy for the Alzheimer’s patient herself.  And while I understand the compassion, one has to realize that my role was out of compassion for Gaye (the Alzheimer’s victim in my book) as well as for her husband and family so it didn’t matter to me what anyone said or felt.  I see my role as a blessing, one that has enriched my life forever.

When I took on the role of “the other woman” for Eric, it was, in the beginning, out of the love I had for him.  I was falling in love with a man in this situation and I didn’t let it scare me.  I knew what I could be for him and his family, if they would let me.  I knew that I could love them and try to comfort their pain.  I could give them “light at the end of the tunnel”, especially for Eric.  And it was during this process I fell in love with his beautiful wife Gaye as well.

My role led me on a journey of unconditionally loving someone I had never met.  Gaye and I never met until one day in the nursing home, well after she had lost all her memory.  But because she was Eric’s wife and mother of his children, how could I not love her?  And because I did, I made it a priority to keep the memory of the “real” Gaye alive, because this was one of the most important parts of my position.

When I moved in with Eric, I put up family pictures of Eric and Gaye, their children and grandchildren  – all over the house.   To remind everyone, including myself, that Gaye was not to be forgotten.  I made sure her prized Christmas decorations were displayed, year after year, so that her love of Santa statues would be seen, as well as, felt by everyone.  I visited her often in the nursing home, to give her updates on the family so she would not be excluded.    I took her gifts on special days.  And at Christmas I brought her a poinsettia and sang Christmas songs to her, all the while holding her hands and stroking her hair. I did all of these things out of love.  The love I had for Eric, his family and for Gaye.

And as for Eric?  I gave him joy.  He was able to feel joy again after having nothing but sadness and depressed days for such a very long time.  I helped him remember Gaye as she was before her illness.  I reminded him, often, to hold on to the memories he had made with her before her illness.  While I couldn’t erase the pain, I could certainly help him realize he was still alive and to embrace life again.  Something his daughter has thanked me for so many times.

So when anyone judges me or Eric, they have no idea of the whole story.  The story of what I was doing for him, his family, Gaye and/or for myself.  They only looked from the outside, refusing to believe that there was a reason for me to be there…for everyone.  To love them, offer them hope of a brighter future, to help them keep Gaye’s memory alive.  And if all of that meant I had to bear the title of “the other woman”, then so be it.  It is a title I accept with grace.  For I know what I was to everyone and I would do it again if I had to.

Hugs,

Tami  🙂

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