Casualties of Disease and/or Death

A dear friend of ours lost his wife, also our dear friend, last year.  She battled cancer, bravely, but ultimately lost the battle.  She left behind, a relatively young, husband and young son.  Her husband, I will call David (not his real name) was by her side every step of the way.  He worked, took care of the home, their son and supported her with love and comforted her in every way he possibly could.

I’d visit often, bringing foods rich in antioxidants and/or known cancer killing ingredients and to give my love and support in any way needed.  It was on these visits I would see the love and support David gave so selflessly in his movements and in his eyes.  But I saw something else…a very worn out and broken man, another victim or casualty of the disease.

David would never have thought of himself as a casualty of the situation.  But I did and still do.  Yes, he is not the one who’s health was under attack by the despicable disease.  But he felt helpless when he couldn’t help her with her pain, so he felt pain of a broken and powerless heart.  He took care of her in ways no one wants to be faced with, physically, emotionally and with love.  And while he wasn’t facing the possible end of his life, he was having to face the fear that he might (there was still hope that she would win the fight)  be losing his wife, partner and best friend.  How could he not be another casualty?  Being a victim and/or casualty doesn’t just apply to the one with the disease, but these labels, in my opinion, should be used for all involved.  While the one fighting the disease, in this case ended up passing away.  David died a different death.  The death of the family and life he had built up until that point.

I write this in the hopes that perhaps when people look at the spouse, partner, caregiver, family, etc of a person with a terminal illness, that they can see that they too have suffered.  That the person with the illness is not the only casualty.  That there are others who have suffered and who, at the end of the day, need to be commended for their efforts and love.  But most importantly they need to be supported by their community, friends and family.  In spite of old ideas and/or beliefs, the other casualties of illness, need to be allowed to grieve and/or make decisions for themselves that they feel are right…without judgement.

 

An Empty House

While I know that hundreds, if not thousands, of new “probable” diagnoses of “Early Onset Alzheimer’s” are given to families all around the world, it still knocks me down to my knees when I hear of another case.

Recently, a friend of mine (thinking I could offer some comforting words) introduced me to a friend of  his (via the internet) saying that his wife has some form of dementia, in all likelihood, Alzheimer’s.  She’s only 58 years old.  He, George (not his real name), gave me a brief history of what his wife has been through the last few months.  Depression, erratic behavior and forgetfulness to name a few.  All terms my husband is so familiar with.  His late wife, Gaye, exhibited all these behaviors before her heinous diagnosis.

Some of the words I had for George, besides sorrow, were that Gaye had the same symptoms.  That it took a neurologist and a battery of tests to give them a clear picture of the cause of her issues.  George then assured me that his wife is now undergoing an array of tests to determine the cause of her symptoms.  Being in the  medical field himself, he is painfully aware of what the diagnosis will, more than likely, be.

I shared with him that while I know the true victim is the Alzheimer’s patient, that I feel Alzheimer’s takes many victims.  That while his wife is suffering now, it wouldn’t be long before she slips away into a world we don’t truly understand.  But a world, as the medical field assures us, where she is unaware.  Being unaware of one’s surroundings can be a blessing when you are 58 and subjected to living in a locked down facility away from family and friends until your untimely death.  While she becomes unaware, he, George, would not be.

I then told George that he was the next victim in line of the nefarious disease that was taking over his wife, and left it at that.  I didn’t have the heart to spell it all out for him.  I couldn’t tell him of the heart break he will experience every time she forgets who he is.  Of the decisions he will have to make for her care, decisions that no one wants to make for their loved ones.  Decisions that, hopefully, he and his wife have discussed long before now.  That even if he has children who support his decisions, that they are some of the most emotionally charged decisions he could ever make…and he will feel alone.

I didn’t dare tell him of what disease will do to him.  That, at some point, he will go home to an empty house, day after day, once his wife is in a locked facility.  That while he will visit her, he will always return to a lonely and empty house.  The house that they once filled with their love.  A house that no longer sings of his wife, but only of her absence.  That he will facing this loneliness and emotionally charged decisions all alone.

That’s where my book comes in.  I wrote “Bleeding Hearts” to let others know that the time spent in the shadow of Alzheimer’s, as it ravages a loved one’s body, doesn’t have to be spent alone.  It’s controversial, I know.  But having lived it with my husband; loving him through the most difficult time in his life, loving his children the best way I could, and even loving his wife, whom I never knew before I met my husband, is something I feel blessed to have been a part of, every day of my life.  And because of my experience its my opinion that no one should have to spend that time alone if they don’t want to.

Knowing how I helped my husband showed me how I could help millions shed the shame of taking on a new partner, during their loved one’s illness.  No one, in my opinion, should have to face such a  difficult time or have to make life decisions alone.  And no one, no one, should ever have to go home to a lonely house, if they so choose.

 

 

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

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.

Hugs,

Tami

Dealing with End of Life Moments

Once a loved one is preparing to depart this world; family, friends, and  the spouse and/or partner experience an endless multitude of emotions.  Some of which may or may not be appreciated by onlookers.  One of these such emotions is the feeling of wanting the end to come expeditiously.

The “roller coaster” of events that leads up to the end, puts everyone in a position of exhaustion.  As the loved one lingers, friends and family members may withdraw after saying their goodbyes.  Their intention is to be of support to the spouse or partner and to the loved one as well, but as so often can happen, the lingering death becomes too much, so they retreat.  I believe that the intention is not to leave anyone without support or care, but to conserve themselves.  I have, on so many occasions, heard the complaint of the spouse or partner that phone calls and/or visits from others were becoming increasingly diminished.  When its not imperative for a person to be present daily, choosing not to be present is often the case.  It’s not to say that this is wrong.  I can imagine that if a spouse or partner were free of personal obligation and love, that they too would chose to be elsewhere as well.

For when the spouse or partner has the daily task of caring for, comforting and loving their loved one, they do so at the detriment of themselves.  And rightfully so because one definition of loving someone in a relationship, is selflessness.

The selflessness of day in and day out being at their loved one side.  Making sure that their physical comfort and pain needs are attended to.  That perhaps, long overdue words are spoken.  And that final arrangements are discussed as well as end of life decisions.  With so much needing to be taken care of, its no wonder exhaustion sets in.  This selflessness is the exemplification of a loving relationship; so it embraced when we love someone.  But it’s when exhaustion begins to weaken ones resolve that thoughts of wanting the end to come sooner rather than later, begin to invade ones thoughts.

Hoping for the death of a loved one to come sooner adds guilt to the plethora of emotions at this time.  I’ve heard this, more than once, from the spouse or partner keeping the bedside vigil.  They ask when it will all be over, or why can’t the loved one just let go?  While it may sound harsh, unloving and seem not to be consistent with being selfless, its a fact that some don’t want to discuss.  The truth of the matter is, the partner/spouse is exhausted; mentally, physically, and/or emotionally exhausted.

They have witnessed the pain and struggle of their loved one and want for them to be free of their plight, but they too need to be free of their plight as well.  They wish no harm or ill will towards their loved one.  But their need to have normalcy without minute to minute emotional pain gives out to the need to keep the loved one physically here.  Therefore, they wish for the end.

I am a strong believer in the phrase, “everyone deals with death differently”.  While I am sure there are many people who never feel this way about their loved one when nearing the end, my experience is contrary to that.  And therefore, I believe that the hope for the expeditious end is neither wrong nor should shame be associated with it.  It’s a true emotion of grief.  And we all should be left to grieve in our own way.

We don’t ever want our loved ones to leave us, but death is a fact of life.  When we are faced with it, either our own or our loved one(s), we do what we have to do.  But more importantly, we feel what we have to feel.

Hugs,

Tami