Loving and Living Alzheimer’s

4 months and 12 days... Blogging doesn't come easy.  I have plenty to share but struggle to find the relevance to Him... his journey.  How, in such a short period of time has my world become not connected to the "us" that once was? I suppose the answer is healing.  Continuing to live and move on to the next chapter.  The chapter that will be mine to explore, nurture and develop. It is the natural way of things.  We love, we lose and we move on. One day, that twinge of guilt will subside.  We are not designed to remain in a state of sorrow and despair after tragedy strikes.  We are meant to live.  To learn from it. I've read of people in my position who simply cannot work fully through the loss, by no fault of their own. Who never find love again.  Who are so changed by their Alzheimer's journey that while they continue to live, they do so as a party of one. No judgement here.  Rebuilding after such tremendous loss is scary.  It's ha...

83 days without him. I'm beginning to travel again.  Traveling to places he loved.  Places he always wanted to go. The guilt has lessened as I purposefully take a moment to picture his face in my mind and silently ask him if he is pleased with my new path.  And, to thank him for taking such good care of me, affording me the ability to live this life. I spent a week in North Carolina with my Daughter, Son-in-Love and two glorious granddaughters (6 and 3/12).   Randy's last visit was over 2 years ago and he was on cloud 9 with his girls.  Thankfully we were able to FaceTime during the final 24 months of his life.  Because of this, his girls knew him.. remember him. In the final moments of Randy's passing, we were experiencing a rainstorm.  As he released his last breath, the rain subsided and the most extraordinary double rainbow appeared over our home.  His message that he was ok.  (FYI...the day we wed it was raining and as we arrived at the ...

He has been gone 56 days. Such a short period of time.  Feels like an eternity some days. Being his widow brings a morphed form of guilt.   Guilt because I'm living my best life... without him.  It feels like yet another betrayal.  The depths of the unfairness are almost staggering at times. But others... I'm Free. I'm doing what I want, when I want with who I want.  Not answering to anyone.  I'm changing the house, my car, myself.  I've begun a new career.  I'm a girl again.  Not his caretaker or his mother.  Simply a girl.  I've got trips planned.  Trips that he would have loved.  Trips he'll never get to take.  I've used the term "Bittersweet" on more than one occasion and each time it hits just a little bit differently. This is what he wanted.  What we talked about.  We knew I would have to build a new life after he departed.   And I am doing it!  I'm all in!  I'm the happiest I've been in...

No matter what a person goes through or how old they get, it never ceases to amaze me how many still live their lives in a high school drama holding pattern. I suppose, for some, it is easier to play the victim rather than owning their shortcomings. I've spent the last 5 years caring for my husband.  Living the beauty and tragedy of it all.  Trying to give him the best final years of his life. The last 12 months I had gone so far as to announce publicly that those who wanted to see Randy were welcome....on more than one occasion.  Our door was always open.  Even apologizing for my social withdrawal if it had made anyone feel unwelcome.   Only to learn (once again) that some people, you will never please. To learn that a few life long friends were hurt and even offended to not be given an invitation to the PRIVATE burial. (A privilege granted to those who made his last days better.) The same friends who couldn't be bothered to come and surround Randy with the lov...

 28 days.... He has been gone 28 days and I don't know how I feel.  Don't know how I  should be feeling. Widowed... Can't begin to wrap my brain around what this means, What this is,  What this says about me. I've been grieving for well over 3 years.  Grieving as the love I married drifted away and was replaced by a love requiring maternal protection. I have moments.  Moments where his absence brings me sadness.  Where his empty side of the bed provokes anger.  Where I plan for a future he never gets to see and the weight of how wrong that is almost swallows me. And I feel guilt.   Because I am eager to begin my future.  Because I am excited about what I see in front of me. Guilt because I get to pursue a happy life while he had to lose his. It is in these moments I have to remind myself how lucky  Randy and I were to have been afforded the opportunity to discuss what was coming, what he wished for... and how desperately he wanted m...

4AM on the eve of the day we will put Randy to rest next to his Mother. I am still in shock that we are here. That he is gone from our lives.   From this world. It is so wrong. In the span of 6 days, we went from believing we had 12 months, to a couple of weeks, to a few hours. Did we say goodbye enough?  Did he feel the love that surrounded him as he left this world? I pray his Mother's face was the first beautiful sight he saw as he entered those pearly gates. While these things plague my mind, I am grateful that his passing was peaceful. Randy never felt pain or physical illness.  He was happy and playful in the days leading up to his final journey home. He was spared what would have been the most excruciating part of this disease, only spending 6 days of his beautiful life in a hospital bed. He was a truly amazing man.  Kind and loving.  No one who ever met him didn't fall in love with his zest for life and that exuberant smile. I am better for knowing and l...

Randy left this earth peacefully yesterday, March 29th, 2023 surrounded by love. I'm plagued with anger that the life of someone so wonderful ended so tragically.  And for nothing. He deserved so much more than this life afforded him. 5 years of tears, sorrow, joy and memories on his Alzheimer's journey.  5 years of being solely responsible for this person.  5 years of truly believing that no one else was capable of taking care of this man in the manner he deserved. Allowing his body to be removed from his home.. from my care... was one of the most difficult surrenders I have ever endured. Letting go is hard. But it can also be the most beautiful thing. I was blessed to have been able to fulfill his wish to remain home.   Blessed to have been cheek to cheek with this man when his last breath left his body.  To feel the very last beat of his heart on my fingertips. Blessed to have spent the last 19 years of his beautiful life with him. Honored to know that we wil...

Hospital bed arrived Friday.  I cried. Discontinued all current meds and transitioned to comfort care meds only.  I cried. He refused food and water all day Saturday.  Minimal ingestion yesterday and today. He has to be moved every 2 hours, around the clock, going forward, to avoid bedsores. How are we here already?  He ate a full meal, on his own, just 4 days ago. I'm torn between hoping that this is truly how easily his suffering will end.  In disbelief that he will not have to endure all of the pain and trials that most patients face. Yet grieving that his life is coming to and end.  That, after all he has overcome in his life, he is being robbed of all the things he planned for his future.  The unfairness of it all. April 24th will be 5 years exactly, that we have traveled this road.  I have reflected on all the tough moments.  The ones that made me doubt my ability to see this through.  To keep my promise. I've come to realize that ...

Yesterday he woke happy and playful.  Giggling and dancing.  Truly in a beautifully blissful place. The morning and afternoon were effortless.  While not the Randy we all know, a version I was blessed to witness. Evening was an entirely different story.   My heart is so heavy with the transition of things.  Unfair and brutal.  Cruelty to a degree I've never seen.  Surprising because I think I've endured the worst .  Grief because I know I have not yet felt the depth of despair that is coming. Bitterness is all I feel when I watch him suffer, unable to ease his pain. He truly feared me today.  Not in the usual sense.  Not as if I was his tormentor.  More that he was not sure I provided safety and security. He was afraid of our home.  Afraid to enter his bedroom.  Afraid of the "people" his broken mind was seeing in his haven. His eyes were dark and daunting.  Roaming the hallway and kitchen.. stopping to stare into doo...

I wish I knew what goes through his mind.  All the endless hours of staring blankly into space and the shuffled pacing through the house. What is he searching for?  Where is he trying to go? I pray he has a goal or destination in mind.  To think he doesn't know, saddens me.  How terrifying that must be.  To merely exist with no known purpose. What a blessing it is that I still have the ability to make him feel safe.  It is so reminiscent of motherhood.  Soothing away the bad dreams or vanquishing the monsters under the bed. Randy is still mobile and able to get in and out of bed, with assistance.  For this reason, he stills sleeps in our bed. He is normally disoriented when he wakes, which is frequent throughout the night. Each time he wakes, he reaches for me in a panic.  I hold his hand and tell him he is ok and he settles and drifts back to peaceful slumber. It is a powerful thing to possess the ability to ease someone's pain, if only for ...

**lengthy blog My mother aptly chose the topic and title for this one.  Disclaimer..she is also responsible for my ability to find humor in the oddest of places. For some unknown reason, Randy fights Mom when she tries to administer his medication.  Whether it be verbal refusal or locking his jaw and pursing his lips, he usually renders her defeated. He has recently become unable to swallow his pills, requiring them to be crushed and mixed into liquids.  Even in this form, he makes her work for success.   Last night, as I was out for a bit, Mom was on med duty.  After 4 attempts to ensure the entire liquid dosage was taken, she gave up, figuring he'd ingested "just enough".  He was manageable and agreeable. Shortly thereafter, and much to Randy's delight, a pizza delivery arrived.  Our roomie accepted the delivery after confirming with the delivery driver, that I had ordered it.   I had not.  He had not.  Texts and phone calls later, it ...

Yesterday he forgot how to eat.   I think of myself as well versed in regards to what is coming in the next 18 months.  I've read the textbook behaviors and struggles that are part of the normal decline. Yet, when they happen, the shock and grief are overwhelming.  Maybe this is true in all of life's journeys when the ending is already known and I've just never paid attention. Per normal Monday routine, Randy spends the afternoon with Julio (best knickname!).  Lunch and as much activity as he can tolerate, which is minimal. It was a good afternoon and I am told he ate well, with a bit of assistance.  One outing per week is generally it for him, as it wears him out.  He was happy and sound asleep by 7pm. He woke around 7am yesterday morning, took his meds and drank a couple sips of coffee.  Back to sleep almost immediately.  He woke again at 10:30am and everything was off.   Unable to speak words, just grunts in reply to my questions.  Gl...

Every week.  New behaviors.  Med changes.  The wheel just keeps turning and turning and..... Each day is a blend of calm, hostility, humor and confusion. His daily disobedience lasts for a few hours.  Name calling, refusal to cooperate with hygiene and mundane daily activities.  Lots of "No's" and attempted aggression.  Thankfully, he no longer has the physical strength to be a harm to others. While I get the push back, ugly comments and mad faces, he is able to switch gears in the blink of an eye.  On shower days, no matter his temperament before his home health aide arrives, he is instantly accommodating. He now either sleeps the entire day and night away or he fights sleep completely.  I'm reminded of being a new mother and the advice of "sleep when they sleep".  (Impossible, BTW).  It's as if he knows I'm trying to rest and is hell bent on thwarting my plans.   FYI, our entire history together he has never once been able to let ...

It's as if a switch has been flipped.  Hospice began and within days he has become more anxious.  More afraid to be away from me for even a moment.  Pacing, wandering cluelessly through the house. The moment I get him settled and tucked in, he's up and needing to get to some unknown place.  Needing to complete a task that eludes him. He also now fights sleep.  He is the worst in the evenings. Sleeping 5 or 6 hours per night, where it used to be 12.  I'm exhausted.  He's exhausted.  We both wear the dark circles of fatigue.  However, I fear he suffers far more than I. His nurses have been wonderful and attentive.  Every struggle he experiences, they adjust his meds.  Their dedication to finding the right balance to calm him brings me peace. Hospice workers are the only professionals who give it to me straight, with compassion.  They give me gentle clarity around what is happening and what to expect.  In the frequent moments...

I am struggling with my anger toward God.  What possible plan could He have for him?  For me?  There cannot possibly be a Divine reason for this. Realizing that I may never understand makes it even worse. Home with him full time now.  Pushed through his Palliative Care assessment.  As of today, he is officially on Hospice. Granted help with general hygiene and nursing services 5 days per week.  Supplies being delivered.  End of life meds, although a tad premature, provided. Trying to digest my shock and relief.  We are here.  I'm scared and angry.  Sad and praying for Godspeed.  (Ironic, I know). In spite of being in the midst of this new hell, Randy is exhibiting a new emotional behavior... Joy. The joy of music. We've all heard how therapeutic music can be but to witness the effect on my gentle giant is astonishing. We are in the bowels (literally) of the part of this disease that most fear more than anything else yet, he sings. C...

 Calls for Palliative Care assessments have been made.  Applications for IHSS have been filed. Documents and files are being compiled. Randy has opened the door to stage 7.  The final stages of his journey. It's astonishing it's only been 5 short (and long) years to this place.   However, he is the happiest I've seen him in years. I'm struggling (once again) with this transition, fretting and willing myself to handle situations I could never have fathomed. All while he is in a wonderful place in his mind. What an interesting place for God to bestow a Blessing. Randy is giggly and all smiles.  Playful and ever the prankster.  He is interactive and silly. Softening the blow of the now daily occurrences of his failing mind and body. He joins in on our sarcastic banter, although gibberish in speech , but we know he's lucid in the moment.  Whatever comment he is trying to make, it's clear he is spot on. Laughing with him is the best. He'll gesture inappropr...

Friday was his 56th birthday.  It held little significance for him overall, however he was jovial.  I even got a dance out of him when I sang him his birthday song. The morning went smoothly.  He watched TV while I prepared a Turkey dinner for a us and couple of friends.  I really felt it was going to be peaceful day. Until it wasn't... While I will spare you the gory details, I was not prepared for the state in which I had found him. He entered the kitchen distressed and trying to alert us he had made a mess.  It takes took only seconds to determine what had happened.  He was so confused but there was a part of him that understood he needed assistance. Got him showered, floors cleaned and settled back into bed. And then I had an epic meltdown. When he was diagnosed, there were two things he was afraid of.  One was being bedridden, the other...this. Why today?  This was supposed to be his day.  My heart broke a little bit more.  My soul ...

I work from home.  Each morning, while I am occupied at my desk, Randy will often get up just to open and close the bedroom door.  Over and over, for long periods of time. Once that activity has run its course, he will quietly walk down the hallway, stopping just short of me being able to see him.  Almost as if he is hiding.  There he will stand, silently.  Until I acknowledge him or until he decides to return to the bedroom. Upon his return to the bedroom, he will either go back to sleep or sit on the edge of the bed, staring at the wall. This cycle repeats for hours. And it stresses me out! I worry that he's distressed or confused or scared or any other troublesome state that my mind can conjure.  When I can take no more, I brace myself and go to him.  Only to discover, he's fine.  Bonus is, he's happy to see me. My brain goes into Mommy mode and the nurture instinct tells me he needs to be coddled and fixed.  He must be struggling. Frettin...

"Everything happens for a reason" "What doesn't kill you makes you stronger" "God only gives us what we can handle" Why..... I have never questioned my higher power more, in my life!  I have experienced tremendous loss but, this!  Dear God!   I've lived through suicide, cancer (multiple times) and mental illness.  My brothers are gone.  My father and my uncle (beloved father figure) are both gone.  No grandparents.   They were taken.  I grieve from time to time but the pain lessens.  I have made peace with these losses. I suppose, one day after he is physically gone, I will find my peace with Randy's death. However, watching someone leave you slowly, day by day, over the span of years, is far more excruciating than sudden loss, in my opinion. Grief comes and goes, like the ebb of the ocean.  While it subsides for moments, it returns like the crashing waves.  Some days, I can dive a little deeper and come out the other side, unscathe...

I blog about all he is suffering.  All we are enduring at the hands of this awful disease.  What we have lost and what he will never get to do.  I blog because I want the journey to be documented.  To help others on this path know they are not alone.  To answer questions for those who genuinely want to know how Randy is doing but are reluctant to ask, out of respect. What I haven't done is document who he was.  His story.  What he was before he became a patient. He was kind.  He was sweet.  He was silly and passionate and brave. He was popular in high school, with a smile that could kill and beautiful blonde tresses.  Played football, swam a little and loved life. There was a period where he was a victim of his own poor decisions and self pity... until he wasn't.  At his lowest point, he decided to save himself.   He joined the program, followed the steps and found God.  He rebuilt relationships and reclaimed his life. ...