Interviewed by Neale Godfrey for Huffington Post

Originally appeared in HuffPo Plus Fifty -- November 20, 2013

Alzheimer's Disease is Devastating to the Entire Family

by Neale S. Godfrey

If you don't have a family member who has been stricken with Alzheimer's disease, the odds are good that you know someone or some family that has been.  Along with physical and emotional trauma, the financial burden can destroy a family. Alzheimer's disease affects one in eight older Americans, and is the sixth-leading cause of death. Over 15 million Americans provide unpaid care for a person with Alzheimer's and other dementias.  An estimated $200 billion in care was spent in 2012.  

President Obama proclaimed November 2013 to be Alzheimer's Disease Awareness Month.

Alzheimer's disease is an irreversible and progressive brain disease that slowly erodes precious memories, thinking skills, and the ability to perform simple tasks. It affects millions of Americans, including senior citizens as well as younger Americans with early-onset Alzheimer's disease. This month, we stand with everyone confronting the painful reality of an Alzheimer's diagnosis; lend our support to the families who care for them; and renew our commitment to delaying, preventing, and ultimately curing this disease....As we offer our support to Americans with Alzheimer's disease, we also recognize those who care and provide for them, sharing their loved ones' emotional, physical, and financial strains. This month, we honor their compassion, remember those we have lost, and press toward the next great scientific breakthrough.

In my circle of friends, when someone has questions about caring for a parent or loved one, suspects a family member may have the early signs of dementia, or just needs to talk with someone who has been there and can empathize, we call our friend – Christopher Lanni.  Christopher has a wealth of information amassed from his years as a stay-at-home caregiver to his aunt and mother.  He is not a healthcare professional, but he is a reservoir of real-world knowledge.  He is a writer, a blogger, public speaker, and a special person – eager to share and offer support.

In honor of Alzheimer's Disease Month, I have interviewed Christopher on a variety of topics that may offer some insight and support.

Christopher, you acknowledge that you are not a healthcare professional, are you a legal or financial professional?

• I am not a professional, I am everyman.  I like to refer to myself as the Accidental Expert. When my mother retired from her decades of teaching, I began to notice changes.  They were subtle at first – couldn't find her glasses, short-term memory loss, and easily agitated. Alzheimer's wasn't in the public dialogue back then.  My mother was diagnosed with clinical depression and “normal signs of aging.”  

The symptoms got worse as the disease progressed.  How did this impact your life and the lives of your family members?

• My mother's decline was slow at first.  We were lucky that one of her sisters had always lived with us.  Now retired, she was able to keep an eye on my mother.  I was able to continue working outside the home – for a while.  It was now obvious that my mother's condition was neither depression nor “normal.”  Finally there was a doctor who gave it a name:  Alzheimer's disease.  Facing reality was a real blow, as any hope of “getting better” was taken from us.  I got aides to help with the logistics of bathing and everyday care.  

Did health insurance or Medicare cover the costs associated with your mother's in-home care?

• No!  The expenses were increasing, and totally out of pocket.  I vowed to keep my mother at home, where she was comfortable.  The sad reality is that keeping a loved one at home is much cheaper than institutionalization, but still expensive and not covered.  At this point I gave up outside work and became a full-time caregiver.  We made a lot of financial mistakes because we were unprepared and uneducated.

Tell us about the financial burden.

• My mother owned her own home, where she lived for 40 years.  She also had a retirement pension – she was ineligible for financial assistance.  Care became more and more expensive as her condition worsened.  Aside from physically taking care of my mother, my sister and I also had to contribute financially.

The financial burden must have been terrific, but what about the emotional toll?  I know you did things that no child can imagine having to do for a parent – what makes you so special that you were able to do it?

• Thank you, but I don't consider myself special or different.  We all have challenges and most of us find the grace and strength to deal with them.  Don't be afraid to cry. In my case, I borrowed the slogan Just Do It! People speak of the sacrifice that I made with my choice to take care of my mother, but I think of all that I gained from the experience.  I found strengths and abilities that I never knew I had. I had the gift of intimate bonding time with my mother.  I have the amazing sense of accomplishment from being there from diagnosis to her final breath.  Her grace and strength taught me more about life, living, and dying than I can express.  

Can you give us some specific tips?

• Yes, both financial and emotional.

1. Be vigilant.  If you notice changes in a parent or loved one, get medical help early.  Now there are drugs which can delay and lessen the manifestations of the disease.
2. Be strong.  Inevitably, the child has to become the parent.  It's not easy, but you have to take the steps to insure the safety of the patient.  You will be met with resistance, but you have to take away those car keys, install safety features in the home, and get help.  I always say: “You wouldn't let your 9 year-old have the car, cook dinner and pay the bills – it's the same thing.”
3. Be prepared.  While your folks are in good health, discuss their wishes for the future.  Help them get their papers in order.  
4. Get your financial house in order.  Talk to professionals.  Establish a Living Trust. Explore the option of long-term health insurance.  Examine current insurance policies.
5. Reach out for help.  Caregivers can't do it without support from family, friends, clergy, and the medical community.  Most hospitals and end-of-life facilities have support groups.  

Thanks to Christopher for briefly sharing some of his experience and tips.  I suggest you read his blog which chronicled his care-giving along with amusing stories and favorite recipes.  As a family financial specialist, I will continue to cover different ways to keep our families healthy, wealthy, and wise.

For resources and information on living with or caring for someone with Alzheimer's disease, please visit www.Alzheimers.gov, Alzheimer's Foundation of America, and Alzheimer's Association.

GOODBYE FOR NOW & THANK YOU

UNTIL WE MEET AGAIN

IT HAS BEEN QUITE A JOURNEY 

THANK YOU FOR COMING ALONG WITH ME

I first decided to start this blog on a whim.  It was post-Christmas holidays, I had my usual seasonal blues and I had writer's block.  I thought that committing to a blog would be a good writing exercise.  My motives were completely selfish.  I knew I had a lot of caregiving experience to share but I had no idea anyone would actually find my blog - let alone read it.

On Thursday, January 9, 2010 I posted my first blog: "Please Allow Me to Introduce Myself".  I began with an introduction to me, my life and of course my dear mother Adelaide who was in late-stage Alzheimer's disease.  I would continue to write about family memories and introduce my readers to my family members. The main focus was always my caregiving experiences but I also added "Foodie Friday" weekly recipes and food stories.  To date, my foods blogs continue to have the widest readership.

From the beginning I was surprised by my growing followers.  I was thrilled when I became searchable by the big internet search engines.  I was often touched by feedback posted to my blogs and private emails I received from all over the world. It seems that my little writing exercise was reaching, touching and helping people.  

Being able to share my thoughts was predictably cathartic.  I was going through some pretty tough human situations and emotions.  Knowing that I could be of some help or comfort to others somehow made me stronger and more resolute.  I was able to look at challenges differently.  Not only was I being of some help and support to others, but I was gathering so much support from you.  In life but particularly in caregiving there is strength in knowing that you are not the only one in the world facing the everyday problems and sometimes life and death situations. 

2011 was a year of a gathering storm.  My mother's health was certainly deteriorating and there were so many up and downs and twists and turns.  My emotions were mostly at fever pitch.  There was no way I was going to admit to myself or anyone else that the end of my mother's journey was approaching. After 18 years of increasing levels of caregiving - from keeping an eye on things all the way to total and complete care - I had the amazing gift of holding Adelaide in my arms with my sister Patricia at our side, when our mother  passed away.

I had imagined scenarios of my mother's passing for many years.  I lived in fear of going into her room for our morning rituals and finding that she had died during the night.  Every time I left the house or went anywhere I worried that something would happen while I was gone.  The possibility I feared most was that my mother would pass away during a hospital visit - alone and scared.

We were spared all of those alternate endings.  Her passing was beautiful.  She was peaceful, without pain and surrounded by love.  We should all be so lucky when our time arrives.

The pain of loss was palpable.  I was sick with grief.  I was also relieved that her troubles were over.  I was also relieved that my job as caregiver was over and I felt guilty for feeling that relief. Shortly after my mother's death, my sister and I discussed how we had dreaded this for years, the time had arrived and somehow we were still standing.

Life is miraculous.  The human mind and soul have limitless abilities to heal and rebound.  I am on my new journey in my new life.  It certainly has not been an easy path but it is moving forward and it is good. 

I can hardly believe it but we are close to a year since Adelaide's journey ended and my journey began its new course.  I still have some private weepy moments and I will always miss my mother.  I will be forever grateful for the time I spent caring for her and learning about love, life and myself.  I will always be proud of my caregiving years and of sharing my experience through this blog.

I'm writing again.  I'm working as a social media consultant and writer.  My "block" is long gone and so I am working on a book about my caregiving time and maybe someday I'll even finish it!  

Thank you for your readership, love and inspiration.  This is probably my last post on this blog but I will be leaving this one up...for now.  I hope that other caregivers will find my old posts to be of some help.  I hope readers will continue to find my recipes and try them out on their families.  My email will remain active as I will always be available to answer questions or to listen to any caregivers out there that just need to share their stories with me.  Don't be strangers.

"The sea is dangerous and its storms terrible, but these obstacles have never been sufficient reason to remain ashore... Unlike the mediocre, intrepid spirits seek victory over those things that seem impossible... It is with an iron will that they embark on the most daring of all endeavors... to meet the shadowy future without fear and conquer the unknown."                                                                         unknown

Thank you again.  

Au revoir.

Christopher E. Lanni

I FEEL LIKE I GOT HIT BY A TRUCK

HYPERBOLE

"Extravagant exaggeration"

mirriam-webster 

Grief hurts. There is a certain pain that you feel which is unmistakable and undeniable.  The good news is that it is neither terminal nor permanent.  Very slowly the pain subsides.  The sadness and sense of loss linger but become more tolerable every day.  Every day forward brings you closer to the new "normal" and farther from your old life.  

There is never a good time to lose a loved one but there are better times.  My mother passed away about 10 days before Thanksgiving.  For years I hosted all the holidays.  It just made the most sense because it was easier for everyone to come to mom then to get her to someone else's house.

Too soon!  There was no way I could bring myself to host the feast.  I was conflicted because I was craving the old traditions but honest enough to know that there were only new traditions from now on.  It was my sister's turn to host.  Now with Adelaide gone, Patricia was the de facto matriarch of our ever-shrinking family.  I, of course, cooked.  It's what I do.  It's what I wanted to do.  I welcomed the distraction.

OK!  We made it through the first holiday without mom.  I could take a deep breath.  We're going to be OK.  Onward to Christmas.

Christmas was going to be back at my house.  Yes, I know I said we had to move forward but Christmas?  I   knew this was going to be the last Christmas in the home I had lived in for 40+ years and I wanted to savor it.  It was not going to be the way it used to be but I was going to do my best.

I guess there was some degree of denial involved in my decision.  I also think that if I weren't going to be hosting Christmas I would not have decorated which would have meant me wallowing in a spiritless house for a month and that would not have been good.

Christmas was pretty good.  Time was working its magic.  I was settling into looking at my future with more enthusiasm than fear. The balance was turning in favor of more happy days than sad ones.  The tears were getting more distanced.

METAPHOR  

"a figure of speech in which a word or phrase literally denoting one kind of object is used in place of another to suggest an analogy between them" 

mirriam-webster  

Healing is not always on a straight trajectory.  There are twists and turns and the fates are good at testing us. At any time and without warning that "truck" can make a u-turn and come back and hit us again...and it did.

I had three big holidays under my belt.  I was finding time for some fun.  I was spending more time with close friends.  I even with out with a couple of them for New Year's Eve.  I earned some time out and they graciously saw that I got it.  A little crazy fun on New Year's Eve is an easy way to put a very bad year behind you. It is always symbolic and bitter-sweet, but this year, wow.  2012 had to be better for me!  

In 2011 I had lost my niece, mother, purpose and identity.  Good riddance!  Be gone worst of worst years.

On New Year's day my beloved Golden Retriever Mickey wasn't acting quite right.  Actually he had declined since his "patient" [my mother] had died.  He was her most faithful companion and guardian.  They had an amazing bond.  Each would look for the other  and you could see the love on their faces.

On January 2, 2012, two whole days into the new and promising year I had to do the most difficult task any pet owner /care giver has to do. I had to make the only humane decision which was to send my wonderful Mickey to be with my mother. 

Slam!  Bang! Crash!

Hello truck.  Welcome back grief.  

That was a blow I was not ready for.  I never felt so alone.  First I lost my job taking care of my mother and now I would no longer have my "best friend" to care for.  I did not think I was going to ever stop mourning.  All the progress I had made was nullified.

But of course I survived!  Death is part of life.  Blah...blah...blah.  The good news is that everything had been taken away from me now.  I had nothing left to lose.  I was at the bottom so life had to start looking up.

I threw myself into packing up my life into moving boxes in order to prepare my house to go up for sale.  This was not emotionally easy but necessary.  If I were truly going to move on then I had to literally move.

FACT

"the quality of being actual...an actual occurrence" 

mirriam-webster

 Some people are superstitious about saying things like "I had nothing left to lose." or "I was at the bottom so life had to start looking up."  I think they may know something profound.

We were approaching big holiday number 4, Easter.  My house was well under de-construction so we were back to gathering at my sister's.  I, once again, would be cooking.  This was a bit of a milestone holiday for my family.  While December 31, 2011 was the end of the calendar year, Easter would be the end of our family's worst symbolic year.  It had been Holy Saturday of 2011 that my niece had passed away.  Let's try putting that bad year away once and for all.

Ten days before Easter my sister and I were out for our usual and traditional Friday shopping, galavanting and bonding.  We have been doing that for years.  It's a very nice and comfortable tradition.  It was a beautiful Spring day and we had gone to the next town over to a specialty store to begin buying food supplies for the Easter dinner.  I was going to be making lasagna and I wanted fresh pasta.  

It was such a beautiful day that I decided to avoid the main roads because Friday traffic is always bad.  Instead I chose the back, country roads which wind along the reservoir system.  It was great.  There was no traffic.  Very pleasant.  

The road is a gently winding road with trees, guard rails and water along most of it.  Very scenic.  I looked pretty far ahead of us and saw this 18-wheeler heading towards us and I noted to my sister that the truck was a little over the center line.  I naturally assumed the truck driver would correct when he saw my car.  

As we got closer the truck moved farther and farther over the center line into my lane of travel.  Now, time was short and it looked like the truck was not going to correct.  I managed to get my car to a place with no guard rail and pulled as far off the roadway as I could, being mindful of water not far beyond the road.

I stepped on the brake, commanded my sister to "get down low.  Make yourself as small as you can.  He's going to hit us."  With that I threw myself to my right side and onto my sister as far as I could while still wearing my seatbelt.  Within seconds the monstrous truck, now a full five feet into my lane, crashed past smashing the side of my car until finally coming to rest at least a hundred feet past us.

I sat up.  I could not believe what had happened.  I checked on my sister and she was OK. We had a weird catharsis and both of us laughed uncontrollably.  There was nothing funny.  It was just our emotional release. Then I looked down to make sure my body parts were all where they were supposed to be.  They seemed to be.

I don't remember much of what followed.  I know I was in shock.  We were in shock.  Rescue teams quickly arrived and got my sister out of the car.  She was beaten up and shaken up and had spine and neck damage but she was standing.

Next thing I remember is being cut out of the car with the "jaws of life".  I had to be braced and lifted to the ambulance.  I was in bad shape but I was alive. 

You may have guessed that this threw me off my grief recovery plan.  I spent the first couple of weeks in tears any time I spoke with anyone. The compounding of grief is serious.  But I survived.  I am a survivor!

The first thing I half-heartedly joked in the ER was that it was "unfair that I had been worried about not having a home and now I don't even have a car.  If you're going to be homeless you at least have to have a car to live in."  We laughed.  I cried some more.  

I'm still in physical therapy and awaiting a few medical procedures.  Some days there is less pain than others but there is always pain.  I had initially lost some ability to grasp the right  words when I was speaking but that is much improved now.  I will never be the same.  But I'm alive. 

My sister refers to our miraculously being saved as "Mommy's first miracle"!  I think she might be right.  There has to have been an angel watching out for us.

I really do know what it feels like to be hit buy a truck!  Be it hyperbole, metaphor or fact, pain is debilitating.  

LET THE GRIEVING BEGIN

It is six months after my mother shed her troubled earthbound body for what even we barely-believing hope is a better place.  It is difficult for me to write about the first seconds, minutes, hours and finally days after she drew her last breath in my arms.  Yes, it is difficult to dwell on that time but even more so because my usually excellent memory is vague.  Perhaps this is a natural defense offered by a generous brain.  It is also because I was standing still, achingly sad while the world was swirling around me.

It seemed that within minutes people began to arrive. A very dear friend was first on the scene.  She instinctively tried to console me and then quietly began making phone calls to my list of family and friends.  These were calls I was unable to make.  It was too soon.  I couldn't begin telling and retelling the news and circumstances of my mother's death.  I called my brother to give him the news.  I called the funeral director to begin arrangements.  The first thing that needed to be done was to have my mother removed from her room, her cocoon.

The house was filling with family and friends.  As I greeted each new face I cried.  Somehow my sister and I kept finding our way back to each other for hugs and tears of mutual grief and strength.  The person who had been most noticeably absent was  Niki, my mother's aide and our housemate.  She had left that morning for a new job.  I had called her to give her the sad news.  Now Niki, my mother's angel, had arrived.  She hugged my sister and me and rushed upstairs to see mom and make her presentable for the funeral director who would be arriving shortly.

Making my mother presentable may sound strange or perhaps even ghoulish but not to anyone who knew my mother.  This was a woman who would never be seen without her hair being perfect and looking perfectly presentable.  I was not going to let her leave the house for her last time any other way.  Niki instinctively knew this.

I was unprepared for the soul-cleansing wail that Niki gave when she went in to see Addie.  My mother had become a second mother to her.  They had an amazing bond. I was relieved that Niki was with mom.  This was a facade of normalcy in a time of chaos.

The busy have no time for tears.

Lord Byron

I had a couple of hours of full-blown, self-indulgent grieving but now there had to be a break because the business of death was at hand.  We three siblings had decisions and plans to make.  We left the house full of loved ones and went to the funeral home to plan.  Somehow having a job to do was comforting.  I am a project oriented person, why should this have been any different?

About a year ago, during one of my mother's hospital stays I had decided that I did not want a traditional funeral home wake for my mother.  Since we had agreed that when the time came mom should be cremated,   I wanted to have a simple gathering of friends and family at our home which would then be followed the next morning with a funeral mass at mom's church followed by burial alongside my father who had predeceased mom by 41 years.  

My brother and sister agreed with my plans and so it would be.  Instead of hours of despair and depression at the funeral home we would celebrate mom's life at home in comfort and familiar surroundings.  This would also give my sister and me yet another project to prepare the house for guests.

The formal gathering at my home was planned for two days after mom's passing.  This gave one full day not only to prepare for guests at the house but to put together the particulars for the funeral mass as well as write an obituary.  I went into full "producer" mode which was my natural default.  I knew if I stopped for too long   the grief would take over and I was scared.  I was sure that if I stopped to think about what we were busy preparing for I would crumble.  "Just keep moving.  Just keep one step ahead of the sorrow" I kept telling myself.  It was working.

My sister and I have always been close.  Although she is eleven years my senior we have been each other's strength through all the years of Adelaide's illness.  We shared a bond with each other and with our mother that no one else can ever know.  Now we were bonding even closer in mom's death.  

I HAVE NO OBJECTIONS TO CHURCHES SO LONG AS THEY DO NOT INTERFERE WITH GOD'S WORK

brooks atkinson

As I look back the time spent tending to my mother's funeral mass was the most absurd.  I tend to be a man who knows what he wants and how to make it happen.  The church seems to prefer to stand on tradition, conformity and submission.  This is a titanic clash of wills.  I have always been honest and forthright in my writing so I will admit that there has been quite a distance between me and the church of my mother and my youth for many years.  

It is really quite simple.  I see the church as"standing on tradition, conformity and submission" and it sees itself as the sole appointed and anointed direct voice of God.  I'm a producer.  My mother's farewell was to be one of the most important productions of my life.  Do not misinterpret that as meaning garish or showy or disrespectful.  I just wanted her final mass to be personal and jubilant.  She deserved that.  I would see to it.  This should have been a reasonably easy job.

I have a wonderful friend who is a gifted singer.  When she came to visit me she would always go to my mother's room and sing for her.  These shared moments were some of the highlights of my mom's years of illness.  To me, the connection of souls through God's gift of song is a religious experience I am proud to have been witness to.  It went without saying that I wanted dear Linda to sing at the funeral.  

Linda gracefully accepted my request and we agreed upon a couple of traditional songs.  My brother-in-law is also a talented musician and singer and he was also going to sing a very special song for my mother.  I also had a couple of minor requests of the church, one being that I forbad the playing of the church organ. I just do not like the way this particular pipe organ sounds and to me it is forced melancholy.  

  I conveyed my plans to the funeral director who immediately said that there "might be some problem with the church" and then added "you know you have to pay the organist and the regular funeral singer even if you don't use them."  This immediately brought to mind the Broadway musicians' union dictating how many orchestra musicians a show was required to employ.  I expressed my disdain at the church having "a problem" and that I didn't care who we had to pay.  I would rather pay the organist not to play than to play. I also requested that my brother-in-law's cousin give one of the readings at the mass.  "A woman?" the funeral director exclaimed.  "Yes that 'woman' happens to be a nun".

Later in the day when I was on my fourth phone call from either the priest or the "musical director of the church" I was forced to play my producer's trump card.  I calmly informed the priest that I had not expected to spend the day after my mother died producing her funeral and negotiating with the church.  I also explained quite simply that since my mother had been cremated I felt no urgency to follow through with her funeral mass in his church.  "Although my mother was uniquely devoted to your parish I do not feel the same bond.  I am perfectly willing to postpone her funeral while I find a more welcoming congregation of some other more 'Christian' faith".  

The priest acquiesced but asked that the nun present credentials before the service?!  

Day two was finally over.  My friends were taking turns staying with me, wonderfully concerned friends were afraid to leave me alone.  I welcomed the company.  I was somehow functioning but the pain of grief was profound.  I had twenty years to prepare for my mother's death but I do not know how one actually accomplishes that.  In one breath I had lost my mother, my best friend, my mentor, my job, my identity, my raison d'etre and soon my home.  My world could never possibly be the same again. Sometimes a little self-pity is justified.

There are few human emotions as warm, comforting, and enveloping as self-pity. And nothing is more corrosive and destructive. There is only one answer; turn away from it and move on.

dr. megan reik

That evening is when I discovered something new and odd and awful.  I discovered that the shower was the most painful place to be.  From that night and for the next couple of weeks I could not stand in the shower without breaking down and sobbing.  It was the only place I was truly alone.  I was alone with my sorrow and my pain and it was easy to let all of my emotions out even after I had learned to mostly tuck them away in front of people.  

The evening of the "open house" was here and friends and family were arriving.  It was amazing.  People showed up that I hadn't seen since I was in high school.  Teachers that my mother taught with thirty years ago and that had taught me were in my living room.  It was a full house.  It was a house filled with love and tears and laughter.  We shared Adelaide stories.  Old friends reunited.  I met some of my sister's friends who I had only heard stories about for many years.  So many people approached me to tell me what a wonderful job I had done taking care of my mother for all these years.  I was actually embarrassed.

Frequently throughout the evening my sister and I would find one another to express how happy we were that we had decided to honor mom in this most natural of ways, borrowed from the Jewish tradition of shiva and made just a little Italian.  I kept repeating that "mommy would have loved this".  She would have.  Adelaide loved nothing more that to have friends and family filling our home with love.

The day of the funeral arrived.  Another of my friends came to house sit.  She tried hard to convince me to take a tranquilizer that I had for just such a time but declined. I decided that I wanted to experience the day to its' fullest.  Another of my friends chided me that I was a "typical writer" for that.  [I love my friends]

The funeral service began with the organist playing the processional hymn on the organ.  The first couple of notes bellowed from the pipes and my brother-in-law sprang to his feet in fear that I was going to cause a scene and "bring down the curtain".  He grabbed the funeral director who bolted up the the organ loft pretty swiftly for a dignified gentleman.  The organ was silenced for the remainder of the service.  Linda sang like Beverly Sills and Maria Callas had taken her over.  The priest gave a wonderfully personal eulogy capturing the very essence of my mother.  Sister, having presented her credentials, read a lovely verse.  Brother-in-law performed his song which brought me easily to tears. Then in a final act of love, the elder monsignor who had been a very close friend of my parents stood and gave a second eulogy and spoke beautifully of both of my parents.

The funeral was beautiful.  It was tear-filled but it was a joyous celebration of my mother's exemplary life. I was proud of myself for this most important "production".  I am so thankful for having such talented and generous friends.

 Six months have passed.  Most of the tears have stopped, at least the public ones.  Most of the time I remember Adelaide as a healthy vibrant woman now.  My friends continue to surround me and watch out for me.  My sister will forever be my rock and my inspiration.

FAIT ACCOMPLI

FALL IS NOT MY SEASON

Yes, I love the rich colors of the foliage. My birthday is even in Fall.  The first hint of chill in the air combining with the shortening of the days is always sure to trigger the blues for me.  I am one of the many who suffers from "seasonal affective disorder".  In a good year I begin to hibernate.  I take on projects to distract me. I listen to my favorite music, watch my favorite movies and cook my favorite foods. Sometimes these efforts even work.

2011 was the Fall of a lifetime.  There was no little trick to beat the blues.  This was the season in which the gods challenged my very being and nearly won.  

Late in September my mother was hospitalized again.  This was another bout with pneumonia and at 91 a bout with pneumonia can always be the last one. This was another of those episodes where the doctors warned us to expect the worst.  We have had so many of those that I began to accept them as part of the ritual.  Mom didn't seem so ill this time.  At least she was comfortable and responded quickly to medication. I was even able to relax a little because my mother's private aide spent nights in the hospital alongside mom.

Amazing Adelaide made it through and back home.  Mom's aide, Niki even convinced me to take a couple of nights away from home so I could relax.  This was in everyone's best interest.  At home I would just hover and Niki didn't need that.  The weather was beautiful and I spent my couple of "bonus days" on the New Jersey shore. This really was a great idea.  I regained some strength which I was certainly going to  be needing.

Mom was recovering very slowly this go 'round.  She had lost her appetite and was sleeping more than before.  I, of course, was worrying because that was what I did well.  

As if Fall isn't difficult enough for me, Mother Nature decided to let it all out and delivered the now famous Halloween blizzard of 2011!  Snow in October is not only unwanted but it is wrong.  Trees with leaves do not accept the weight of huge amounts of snow willingly and they did not.

As the snow began to pile up the trees began to fall.  This was as frightening an experience as I had experienced to that point.  Trees were falling on my house.  The snow was blowing in gale force winds.  Niki was beginning to panic.  My ancient dog Mickey wanted to go out an play but that wasn't going to happen. 

I was worried [I told you that was my job] that we would lose power if not the roof so earlier in the day I had checked the generator and made sure it was at the ready.  Niki and I had also loaded all the firewood I had on hand into the garage so we could have some extra heat and ambience.  Right on schedule, about four hours into the storm the power did indeed go out.

Luckily I had the generator up and running in minutes!  I was never a Boy Scout but I'm still good at being prepared.  Niki and I made sure to run cables to Mom's room to keep her electric bed functioning and heat going for her.  We had some lights for us and a nice fire roaring.  We were scared but comfy enough.  

That comfort lasted about three hours until the generator failed.  No matter how I tried I could not get it restarted.  Time for the back-up plan.  Lift mom off her electric bed and air mattress and put lots of padding under her.  Get the flashlights and lanterns.  Put quilts on mom and get the portable propane heater [indoor safe] which I had bought years earlier to "be prepared" for some other possible disaster.

Niki stayed with mom.  I slept in the fireplace room.  We made it through the night.  The snow had stopped. The trees stopped falling.  Neighbors came to my rescue and got the generator working.  It's a good thing they were able to help because we were without power for five days!

11  15  11  15  11

Adelaide never fully rebounded from her hospital stay.  This time it was different.  She was not the same.  She was not smiling.  She was not eating much.  Mid-November on a Thursday afternoon my sister was visiting and trying to feed mom lunch as she had so lovingly for so many years.  Mom just was not doing well.  My sister and I were both worrying.  Niki was obviously lying about her concern for mom's condition in order not to alarm us.  I knew better.  

The following day I could tell mom was not heading in the right direction.  I told Patricia that I thought mom was tired of fighting.  Neither of us wanted to believe it because we had played this scenario so many times before.  I could feel that mom was not the same.  Over the next couple of days I felt mom was slipping away. Niki continued her charade but we all knew.

On Monday mom was a little better.  She ate a little lunch for Patricia.  She even smiled a little.  Oddly enough when Patricia was leaving and kissed mom and said she would see her the following day, Adelaide managed to get out a quiet but unmistakable "goodbye" in return.  

That evening mom was doing worse.  I could not sit still.  I hovered and worried.  Mom's eyes appeared to be sunken in and she was awake but not with us.  

Tuesday was Niki's birthday.  She had gotten mom taken care of but had to leave the house for a new job that she had just gotten.  I heard her chatting away with mom as we all did. I could hear "it's my birthday.  Don't you want to smile for me?"  Niki said mom seemed a little better and then left.

Mom did seem a little better.  She was certainly more alert.  She ate for me and that was a wonderful sign!  Way to go Adelaide!  

About an hour later I could hear mom coughing a little so I rushed to check on her.  She was obviously in distress.  I raised her oxygen level and put her on her side.  I stayed with her while I called 911 and then my sister.  I told my sister what was going on and she said she would meet me at the hospital.  I told her not to go to the hospital but to come home instead.  I knew Adelaide was not going to be going to the hospital.  

The paramedics arrived followed by my sister.  I was holding my mother while they were assessing her. Her breathing was very shallow. This was that moment that no one can ever be prepared for.  THE decision.  The DREADED decision.  They asked if I wanted them to intubate her. 

In that briefest of moments I kissed my mother who was still in my arms and said goodbye.  I told her I knew it was time and how brave she had always been and how much I loved her. I called my sister into the room and told her it was time.  Then I gave my answer to the paramedics and invoked the DNR.

 11:15 [am] November 15, 2011

It was over. Our beautiful mother was gone.  She slipped quietly to the other side while I held her and with Patricia at our side.  In an instant our lives would never be the same.  She was at peace.  It was beautiful.  We were devastated.

I am still so proud of myself for having seen to her caregiving all the way to the most fitting end. All those dress rehearsals.  All those emergency room trips.  All that worrying.  All that dread.  In the end she was as home where she belonged and where she would have wanted to be.  

I recall that the first thing I was able to say to my sister was that now we were orphans.  I am sure that sounds peculiar to those of you who are fortunate to still have one or both parents but I am equally as sure that anyone without parents will understand.  I lost my father when I was 10 and my mom when I was 52 but regardless of my age the sorrow is immeasurable.

No one ever told me that grief felt so like fear. 

c.s.lewis

Au revoir mon doux.

Ti terrò nel mio cuore per sempre.

Vestibulum ut res docuit.

A NEW BEGINNING

AT FIRST:  THANK YOU

In the last blog I wrote I promised to return to my good habits and diligent posts.  That was a promise which I swiftly broke.  As often happens to caregivers, the universe had a profound alternate plan.  

Thank you for your patience. Thank you for your loyalty.  Thank you for your empathy, sympathy and outpouring of well-wishes. I cannot find the words to express how deeply touched I have been by so many of my readers during this most difficult time in my life.

I'M BACK!

During these past few months since my mother's passing I have spent time thinking about the future of this blog. I wanted to return but I was unsure how to proceed. I am no longer a "stay at home caregiver" but I still have much to share.  

My friends and readers have urged me to dive back into my writing.  I am going to give it a try.  They are, of course, right. As I get back into writing again I plan to share my experiences at the end of our long battle with Alzheimer's. It would not be right to leave out the last chapters of Adelaide's Journey. I also want to share my current odyssey through grief and my struggle to rebuild my life which had been in limbo for so many years.  I hope you will come along with me.

"Mourning is not forgetting... It is an undoing. Every minute tie has to be untied and something permanent and valuable recovered and assimilated from the dust. The end is gain, of course. Blessed are they that mourn, for theyshall be made strong, in fact. But the process is like all other human births, painful and long and dangerous."

margery allingham 1956 

IN MEMORIAM