Category Archives: dying with dignity

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.


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.



Dying with Dignity and Alzheimer’s

Recently a friend of ours passed away.  She did so at home, with her husband and loved ones by her side.  She died peacefully and the way she wanted.  While she didn’t die of Alzheimer’s her death prompted me to think about the whole Dying with Dignity debate.

I truly support the idea of dying with dignity.  Upon receiving a diagnosis of a terminal illness, I feel that the victim of the disease should be the one who decides when his or her quality of life is not what they want it to be.  Having said that, what about Alzheimer’s patients?

If discussion is made (long before it’s needed) about what a person wants for their end of life, then all avenues should be discussed.  Cancer, ALS (Amyotrophic lateral sclerosis often referred to as Lou Gehrig’s Disease), Alzheimer’s, Stroke etc – they all need to be addressed for a myriad of reasons.  First and foremost because the person suffering the affliction may become incapacitated and therefore unable to make those decisions when the time comes.  Which brings me to Alzheimer’s.

Unless it is discussed at time of “probable” diagnosis of Alzheimer’s or years before, if it’s not discussed who would make the decision when is the right time to die with dignity in that patient?  There are so many stages of Alzheimer’s with each getting worse as the disease progresses.  When is a good time to end one’s life with Alzheimer’s?

An Alzheimer’s victim isn’t “sick” per say, they have a disease that will ultimately lead them to their demise, but it doesn’t cause any illness or physical pain.  There is a lot of emotional pain, though, especially in the beginning; when the victim is given the heinous diagnosis and is still cognitive enough to understand it.  The emotional pain is almost enough for anyone to want to end their life at that point…but their body is still relatively healthy.   When Alzheimer’s usually strikes, it is in the elderly who probably have a few, if not numerous, health problems.  But when it strikes someone younger, say in Gaye’s case (from my book “Bleeding Hearts”), the young body keeps living as if nothing is wrong.  It’s not until closer to the end of the disease progression that they succumb to an illness that leads to their death.

So, when stricken with Alzheimer’s, when is it an appropriate time to ask for assistance in ending the battle?  How does one help to put an end to a seemingly healthy human being who’s only plight is the dementia brought on by the Alzheimer’s?  I don’t profess to have the answer to that.  But I do know what I would want for myself.

If given a diagnosis of terminal cancer (or anything like that) I would make it clear that until I am incapacitated, I will make the decision myself.  I would determine that with my quality of life and the pain I am experiencing.  If I were to be suddenly debilitated due to an accident, stroke, etc…I trust my family will know my desires (my family have all been versed in my wants) and make sure that my death would be timely.  But I have yet to discuss with my family what to do if I were to be stricken with Alzheimer’s.

I have decided, that for me, if I am ever diagnosed with Alzheimer’s that as soon as I have forgotten who my beautiful children are by name or by face that I would be ready to leave this world.  I know that sounds a bit soon, but after witnessing what I have with my husband and his beloved, Gaye, I stand firm in my decision.  The pain of not knowing my own children hurts me so deeply as I even type the words, is enough for me to want to leave this world behind.  But my decision isn’t based entirely on my own pain, but the pain of my children.

You see, I would never want them to watch me deteriorate into some unrecognizable shell of the mother who loved them with a fierceness that is unrivaled (unless by another mother).  I would want to end the suffering that started the day the diagnosis echoed in their minds and hearts.  I would want to die with the dignity given to me the day I became their mother so it is that mom that they remember and hold in their hearts forever, not the shell who doesn’t know them.

Dying with Dignity, it’s not cut and dry.  It’s a discussion that needs to happen, with and for everyone.  I hope to help start this conversation for those who haven’t even given it a thought…especially if one is stricken with the abominable disease of Alzheimer’s.