Tag Archives: respite

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

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

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  🙂

Judge not…

I’ve always lived by the biblical teaching of, “judge not, lest ye be judged”, but it was never more clear to me what that meant than when I traveled this journey.

From the moment I walked into the nursing home for the first time, to meet Eric’s (my husband) wife (Gaye), there were stares, prying eyes and judgments made without a single word being spoken.  The attitudes of the staff (of the nursing home) quickly changed from cheerful and happy while speaking to Eric, to condescending and cold when they  realized I was with him.

All they saw was a young-ish (I look young for my age so I’m sure it appeared I was even younger than the 10 year difference between Eric and I) girl with a man who was still married to a woman suffering from Alzheimer’s.  What they didn’t see was that Eric was smiling and looking forward to each day since he met me as opposed to living in a world of loneliness and grief.

They had no idea that his children were the ones who wanted him to “move on” and find companionship and that his own daughter set up his profile on Match.com.  They had no clue of the endless nights Eric sat in his home (the home Gaye desperately wanted because she fell in love with it) alone with no other companion other than his dogs…night after night.  Faced with pictures, clothes, innumerable items still in the house that all belonged to Gaye, all as constant reminders of what she was reduced to and how unfair it all was.  The staff had it in their minds that they knew what he was doing, he was abandoning his wife.

Oh contraire!  Eric had been a dutiful husband.  Took care of Gaye, at home, for as long as possible.  When it became impossible and she had to be put into a nursing home, he spent night after night with her until she felt comfortable enough so that he could leave her there.  In the beginning, Eric visited Gaye daily and brought the staff doughnuts every weekend.  His visits only wained because of the heart ache of having to witness his wife’s deteriorating health.

The staff’s treatment and/or judgment of my role in all this was that I was the “other woman”.  Although I had never met Gaye before this nursing home visit, I was put into their (Eric, Gaye and the rest of the family) lives as someone far more significant than the “other woman”.  Being a registered nurse, I was there to aid in sharing information with Eric and his family about medical treatments as they became faced with them.  I was there to help brighten Eric’s life and in turn brighten his children and grandchildren’s lives because they knew that he was, finally, going to be ok.

The greatest gift I could ever receive from sharing my journey, in the form of my book, is that people become less judgmental of families in similar situations.  That we all truly think about walking in one another’s shoes before we pass judgment.

Until next time..

Hugs,

Tami  🙂

Controversial to say the least…

My book, “Bleeding Hearts” (to be published 01/2015) is about the journey I took with my, now husband, who’s wife (at the time of our meeting) was in a nursing home suffering from Early Onset Alzheimer’s.

My position in his life was controversial; although not to his family who supported his effort to find support and companionship during this despairing time, it was controversial to others looking from the outside in.  But controversial or not, it was the journey I felt I was destined to travel.  What I learned could be a blessing  to Alzheimer’s patients (in the early stages of the disease), their spouse/partner, family members and any person supporting any of the people involved.

Since my experience, I’ve learned of other people in the same situation as we were in.  And because society deems it wrong, there is a huge amount of shame that goes with the role I played in my husband’s life at the time his wife was still living.  For this reason, I wrote a book of my memoirs during this time.

I am no author, but I am a story teller.  I put my story to paper and had the manuscript professionally edited with the praises of the editor/author (published many times over) that this was a story that needed telling to rid the world of the pain and shame in situations like this.

With this blog, I hope to open dialog for those who are in or are facing this most difficult time.  To give support and aid in ending the shame felt by all those involved.

until next time…hugs

           Tami