Category Archives: Dementia

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

Shining the Light-Repost

In writing my book, “Bleeding Hearts”, I hoped to shed light and possibly start the conversation on the sensitive subject of a spouse “moving on” when his or her loved one is stricken with a debilitating disease such as Alzheimer’s.  While I understand that not everyone has the same ideas or feelings on the subject, I feel strongly that no one should judge anyone else for following their heart in search of taking care of their own needs while attending to their partner’s needs.

While I have said (and will continue to say) that I believe that the ultimate victim of a disease like Alzheimer’s, is the victim who carries the diagnosis themselves.  I pose the question: What about the “other” victim(s)?  What about the spouses and/or partners of the diagnosed patient?

Along side their partner, they too suffered through the horrific diagnosis.  Having dreams of their future with their loved one, shattered as well.  After the heinous diagnosis, they are faced with grim conversations of decisions that they will, ultimately, have to face.  While the disease takes hold of their loved one, the partner is made to feel a myriad of emotions like fear, sadness, etc. while their loved one slowly slips away, into a world of their own.  Once the Alzheimer’s victim is lost to the world of silence, the partner is then shut out.  They are left to live on making decisions that no one should ever have to make for another and witnessing the continued assault of the disease…alone.

When I came into Eric’s life (we met on a dating service), his wife had been “gone” for quite some time.  She was in hospice with the diagnosis of “early onset Alzheimer’s” and was only showing few glimpses of recollection to anyone or anything.  His eyes were sad and mournful…soulful and deeply hurt.  I could feel his loneliness before he said anything about his beloved wife, Gaye.  And once he told me the despairing story I could understand why, almost immediately, he presented this way to me.

Eric was encouraged by his family, in particular his beautiful daughter, to move on and find someone to be happy with.  While he entertained the thought, he didn’t feel ready.  It was when he was ready that we met.  Our relationship blossomed and I quickly realized that I would have a major role in the story of him and his wife; a woman whom I had never met, but came to love because of him and his love for her.  But because Eric chose to “move on”, all the while continuing to respect and love Gaye, he was once again faced with distress because not everyone agreed with his decision.  Shame was then added to his myriad of emotions.  Why should he, or anyone, be denied comfort during such a time?

Being able to be a source of comfort to him, in these darkest of days, providing love and support -leads me to think of a song by one of my favorite country bands Sugarland, “Shine the Light”…  “And when your worries, they won’t let you sleep and rob you of your days.   And you’ve looked in all directions but you still can’t find your way.  Or when you just need someone to remind you that it’s all gonna be okay…I will shine the light.”  For it is in those darkest days that the spouse/partner of an Alzheimer’s victim needs to be reminded that there is and can be light at the end of their painfully dark days.  And that  they should be left to do so, without shame and/or judgment.

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  🙂