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Mother’s Day and Mom’s Journey with Alzheimer’s Disease

on May 11, 2015

Mother’s Day was bittersweet for me this year.  As I stand here hundreds of miles away from my own Mom I am brought to tears.  Yes I am lucky to be my age and still have my Mother and I know that, but this weekend marks a year since my Mother lost her ability to walk, feed herself and for the most part effectively communicate.  My Mom has Alzheimer’s Disease.

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What exactly happened that weekend a year ago no one really knows.  You see my Mom had suffered from early onset for years.  At first we noticed the usual things like repeating herself and becoming confused, we eventually insisted that her doctor send her for testing.  Our fears and hers were confirmed, Mom was diagnosed with early onset in her mid 60’s.  Thru the next few years the forgetfulness progressed which led to my Dad becoming her main caretaker.  Eventually we could no longer allow her to continue to drive for her safety and the safety of others on the road.  Not soon after that she could no longer venture out alone because she could not remember simple things like her name, address or phone number.  Depression ensued and all the other trappings of this terrible disease.

As the years and the disease progressed my Mom stopped calling me by name  During my trips up North , she knew she “knew” me but never really used my name to reference me anymore.  Then 3 years ago while visiting for Christmas, my mother no longer knew who I was.  You see I am the only one of my siblings who, at this time, lives out-of-state.  I was the first child to be lost in the haze of Alzheimer’s.  The first time it becomes reality it hits you like a Mac truck, it’s heartbreaking.  You never want to think your Mother could forget who you are.  Even though I had seen it happen to my Mom with her own mother, it doesn’t make it any easier.  I was helping with organizing my parents house and getting rid of things they would no longer need, my Mom turns to my Dad and asked “Who is that?”  “That” person was me.  She still smiled at me and we were able to converse but it was more like acquaintances.

Thankfully through the progression of the disease my Dad has had help from my siblings.  They took turns between their own families and lives to help with Mom.  I also have a friend with experience caring for the elderly who was able to take Mom on a few hours a week.   I am eternally greatful to my siblings and I don’t think they will ever know just how thankful I am for all the did and continue to do.  Distance and family of my own prevent me from spending the time I wish I could up in CT

As the years have passed Mom now no longer knows my siblings, her siblings or her grandchildren.  We all realize she knows us in her heart.  I pray for her and to her through Jesus and I ask that he gives her a simple warm feeling in her heart each time I think about her.  For I know although her mind and body are weak BUT her soul and her love for Him and He for her are still alive and well within her.

Joshua 1:5  No one will be able to stand against you all the days of your life. As I was with Moses, so I will be with you; I will never leave you nor forsake you.

Fast forward to May 2014 and my Mom was now in adult day care most days during the week.  She needed help with everything from dressing to eating and everything in between.  But she could still walk (in fact she walked up to 20 hours a day, since she rarely slept, another effect of the disease), although her gait was now hunched to the side and more of a shuffle.  She could still feed herself with encouragement and reminders.  But then something went terribly wrong and my Mom lost all ability to care for herself.  An infection had consumed her body and treatment/tests at the hospital did not go as planned and we believe contributed to her downward spiral.  So last Mother’s Day myself, my Dad and all my siblings were sitting in a hospital with my Mom who was barely able to lift her head.  Frail, confused, no longer able to walk or move she lie at what very likely could have been death’s door.

Flung into a system not equipped to care for someone of her age/condition she ended up in a mental health facility.  You see she couldn’t go back home and yet there was nowhere else for her to go.  Since this facility wasn’t a “regular” hospital or nursing home we were only allowed certain hours for visitation.  We did all we could to stay on top of the staff to make sure they would at least attempt to feed her.  Like I said they were not staffed for someone in her state of health.  Heartbreaking, frustrating, devastating.

I stayed as long as I could up in CT, and when I returned to my own family the plan was to have her put into the first available bed at an Alzheimer’s equipped nursing facility .  That was a Saturday morning.  By Sunday I was on the phone with my family and they were talking Hospice care.  Mom had now stopped eating and drinking all together.  She was put on hydration IV and things were not looking good at all.  Only by the grace of God only did she start to take liquids on her own a few days later.  Soon after God also opened up a bed a Nursing Facility very close to my Dad’s house.  My Mom has lived there ever since.  The facility, though small has been an absolute blessing to my family.  Close to my Dad, with no “set” visiting hours my Dad and family can visit any time, any day.

My Dad is there twice a day everyday.  He loves her as much today as he ever has, probably even more.  He feeds Mom lunch and dinner.  With his help she eats like a champ and has recently gone for 95 lbs to 106!  This is a huge victory for her.  My Dad has also become a friend to all those who reside in the facility.  He knows each resident by name, how each likes their coffee and can often be seen serving others other than my Mother.  I am so proud to call him my Dad for his heart is big and his ego small.  He is doing the work of God each time he steps foot in that nursing facility, for all those he comes into contact with.  He can often be seen chatting with the residents and their families.  The nurses love him to pieces.

As for Mom She still smiles when she sees him and sometimes even calls him by name.  They were able to spend their 50th wedding anniversary together last summer at surrounded by the entire family.  We have been able to take her out of the facility for every major holiday so far.  She will never regain her ability to walk or take care of herself on her own again and that is the reality of the situation, she seems happy, and is well cared for..

 

I am lucky to still have her and that she is doing as well as she can.  There are definitely times that I have to stop being selfish about the situation and how I feel.  Although I still struggle with the “Why” of this situation I must remind myself that everything happens for a reason.  God’s got this, He is trying to show us all something, and we need to be open to learn and grow.  He will reveal his plan to us all someday and it WILL make perfect sense.

Deuteronomy 32:4 He is the Rock, his works are perfect, and all his ways are just. A faithful God who does no wrong, upright and just is he.

 

So what can we do?  Open your heart to the less fortunate, serve others first, fight for a cause.  And always, always do what is right in the eyes of God.  As a runner I use Charity Miles to raise funds for Alzheimer’s Association, I have participated in the Walk to End Alzheimer’s and hope to continue to do so.  Not just for Mom, not just for me, but for all those affected by Alzheimer’s.

Happy Mother’s Day Mom, I love you!

 

 


11 Responses to “Mother’s Day and Mom’s Journey with Alzheimer’s Disease”

  1. Oh Darlena! This post just broke my heart. I know how hard it must of been for you to write. I pray for your mother every day and thought of both of you yesterday. I cannot even imagine what you and your family are going through, but thank you for sharing this tough journey with us. We live away from my parents too and they are in relatively good health but it kills me to be so far. Not sure how I would handle it if they were not well. You are so strong and it sounds like you have a wonderful father and siblings. I already know you have a great husband and kids. Our prayers are with you always. God Bless.

  2. What a testimony! Thank you for sharing, my heart aches for you.

  3. Theresa says:

    I can’t imagine what you and your family are going through. I know, however, that things happen for a reason whether we choose to believe that or not. I’m sure that later in life, your this reason will become clear to you. God bless you. I shall keep your mother in my prayers.

  4. Claudia says:

    What a beautiful and lovely tribute to both of your parents. Thank you for sharing! Keep trusting Him.

  5. norma brown says:

    Beautiful article that has touched my heart shared by your sibling – Tina who is a dear friend of mine as we work for the same company. She shared this article with me because my mom is in a very similar situation and therefore, I can relate to EVERYTHING you wrote. My mom is in hospice care in a private facility in MD close to my only sibling – my sister while I reside in CT. Thank you for this article….

  6. […] many of you may know my mother was diagnosed with early onset a few years back.  To read more about our journey click here.  Alzheimer’s changed my parents and my family’s world.  As devastating and […]

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