A LONG, LONG WAY FROM HOME

A LONG, LONG WAY FROM HOME


This was probably 1942 right after my mom and dad had gotten married. Dad enlisted in the Navy and mom went to work on a army base in Brooklyn, N.Y. This was over seventy years ago . Unfortunately dad passed away 18 years ago and mom has no recollection of any of this.

Today my mom is not sure where her home is. When she is having a hard day she repeats many times that she wants to go home,and it is always the home that belonged to her parents. It never is the place she shared with my father, and it never is the home where she raised my brother and me.

I remember the first time after she already had Alzheimer's, that when we returned to her home after being out most of the day, she was surprised that she even lived there. I was alittle in shock, since it had been her home for the last twenty something years. A home that she told me that she never wanted to leave.

My brother and I have finally made a decision that our mom must go into a nursing home. A decision that breaks my heart as it would any child who had to do this to their parent. Yet nursing homes are all filled to capacity with others' loved ones.

 Since I believe Florida will be best for her, I will continue to be a long distant caregiver for mom.  Another decision that unsettles me greatly. Yet as a long distant caregiver who speaks to my mother each and everyday, I am filled with deep emotions like any other caregiver ,no matter how close or far they might be.

I now coordinate her care with her caregivers on a daily basis and  I am in constant communication anytime an emergency seems to happen. I help plan her daily activities, her health care issues, as well as stimulating my mom by spelling, singing or simply laughing.

Am I not a caregiver? The answer is yes, just that I am a long distant caregiver. It can bother me when another caregiver  thinks I  may not understand because of the distance. Let me explain. I too see my mom disappearing. I also speak to her each day and go through the feelings of not being able to see her everyday or once a week. I too am a daughter with a mom who does not know who her grandson is, nor my husband of 33 years. There are moments when she is confused about who I am, giving me the title of being "her good friend."

After I see my mom for 3-7 days in a row she has no memory that I was with her, and questions when I will be coming to visit. I too understand how horrific this disease is. It is part of my life every single moment of every single day. It does not matter how far away I may live. it is still part of my life. I cannot escape any of this, nor do I want to. I am happy when she is having a good day and troubled when she is not.

The love and commitment I have for her cannot be measured . I will love and cherish everyday of her life, even if she and I are a long ,long way from home.

 

#1 on Amazon's Best Seller list in Memoirs week of June 4th, 2013

My Mom My Hero is for the special people in our lives. A story of love and relationships. Available on Amazon & Kindle worldwide.

http://www.amazon.com/Mom-Hero-Alzheimers--daughters-bittersweet/dp/0615773982/ref=sr_1_6?s=books&ie=UTF8&qid=1363625113&sr=1-6&keywords=my+mom+my+hero

 

 

 

CALM BEFORE THE STORM

CALM BEFORE THE STORM

Mom had been doing so wonderful up until the other day when another Urinary Tract Infection(UTI) occurred. Except for her getting these frequent infections and having Alzheimer's ,and macular degeneration, she is relatively in good health.

Regardless, this was a very enjoyable week that I was able to share with her. We spent much time on the phone serenading each other with songs and spelling words, from cheerful, to beautiful, to encyclopedia.

 Mom was sharp and received from me an A plus for her efforts. She sounded out several words that she was able to spell correctly. Encyclopedia was not one of them. She took her time as she approached each syllable, for this word was certainly a challenging one . I delighted in how well she seemed to be doing.

She then chimed in with, "I heard you called to speak to me." "Yes mom, I called because you brighten my day." At this moment  she had clarity and was able to understand and follow along with my conversation. Not all days are like this ,yet when I come across one, I celebrate as if the most beautiful fireworks are filling up the sky .

The following day mom was so happy and was speaking about almost everything under the sun. She was funny, and continuously shared with me," that if you have your health then that is all that matters."  I am so amazed how she will always recall these words, either right before she has a UTI,  or directly after she bounces back from one. On this day she was not rushing me off the phone, as she continued to recite different rhymes that she was making up. She was quite funny and she sounded  proud of herself .

 Her thinking process was sharp. After at least twenty minutes of speaking mom interrupted herself and said to me "what is your name?" I answered softly "Lisa" as she then asked me "what is your last name?" I responded using my maiden name which of course is the same as hers. Her answer was,"Oh, that's good." Her next statement was,"do not be so formal and you can come and visit me whenever you want." It's times like this that being a long distant caregiver is so very difficult.

A few years ago, the very first time mom wanted to know who I was shocked and upset me . Yet now I have learned just to enjoy what she says and play along with her. It makes her happy and I also feel  moments of joy.

I spoke to her caregiver and warned her that I thought mom might be having another episode of a UTI. I have realized that whenever mom is so talkative and descriptive about "life" the infection shows up. It's almost like knowing there is a storm on the horizon.

Sure enough the following morning Trudy her caregiver, explained how she found mom. Her clothes were all removed from her draws, a standing lamp was lying broken on her living room floor,which  truly frightened me. That morning and for the rest of the day, mom only wanted to sleep. She was probably up most of the night as her adrenaline was pumping, and she wandered around her home moving things all over. For the next several nights mom's caregiver will surely be staying over.

All of this represents for me the calm before the storm. It still amazes me how an infection can cause her to hallucinate.  I wonder why she  has these impulses to act out and empty her closest and draws. Only if she could share this part of her world with us, would I ever be able to understand any of this.

Each day I still collect her scrumptious kisses that she so generously sends me through the phone. Kisses that I seal in my heart and keep in my pocket. This way my mom can always remain close to me.

My book My Mom My Hero is dedicated to the  special people in all our lives. A story of love and relationships. Available on Amazon & Kindle worldwide. Made Amazon's Best Seller List.

http://www.amazon.com/Mom-Hero-Alzheimers--daughters-bittersweet/dp/0615773982/ref=sr_1_6?s=books&ie=UTF8&qid=1363625113&sr=1-6&keywords=my+mom+my+hero

DRIFTING AWAY

 For the last eight years my brother has been watching over our mom in a different way then I can. They live in the same area of Florida ,while I live in her home town of New York. After returning from a recent vacation, I knew that there were some uncomfortable, unsettling decisions that would soon need to be answered about our mom. I had tried to avoid thinking about any of this before my trip to Italy. I was of course, unsuccessful.

We had spoken about some different options before I left. All of them seemed to be that mom would need to go on medicaid and be moved into a nursing home. A decision that left me feeling upset, as my stomach tightened with knots.

Mom had been sounding great since I have returned, and I was well aware that she had two very "good" weeks. "Good", as in no urinary tract infections that alway seem to cause her excruciating back pains and hallucinations. These symptoms never disappear until an antibiotic quicks in. Funny, how I foolishly sound as if I am now a pro, in the world of UTI's and Alzheimer's.

 I realize that seeing her in person, will confirm all the simple things she can no longer do. The everyday tasks of brushing her teeth, combing her hair ,or even knowing to change her clothes has no meaning to her. Day is night and night is day. There is no sense of time. Actually, this has been going on for several years, and in some ways she has miraculously been "holding"on.

I am thankful for this and not one day goes by when I take any of this for granted. Yet in between mom's "good" days, I am aware that I hear less laughter and aliveness in her voice.

Does mom have any idea what is going on? Just yesterday, when she was handed the phone from her caregiver, I questioned how she was doing. Her response was both interesting and strange. Mom answered that she was doing okay, yet she went on to explain that for the last several days she was not feeling so well. She described that she rested and is now doing better.

My brother shared with me that she is getting frail and has trouble walking herself to her bathroom. Her caregivers say that this is not necessary so, yet that I should prepare myself for my visit with her. They explained that she is not the same as the last time I saw her.


I told to my brother that I felt that I could not be part of the decisions regarding mom and a nursing home. I found it all to upsetting and that I was willing to relinquish and surrender to whatever he thought was best. Momentarily he responded ,"okay".

As for now this decision, although I feel ill when I think about it, has left me feeling that I will be able to cope in a better way. All of my strengths that I have been so proud of, are now hiding as if I were a frightened young child, as mom continues to drift away.

I only want to brighten her days and not be filled with feelings of guilt. I want to be cheerful with her each day, as I cherish the days that we can still share. I love as we sing some tunes and she makes up the verses of words she no longer knows . I love our spelling games which she still can amazingly do, and I continue to try and hear the sounds of laughter that we once frequently shared.

My mom today know matter what world she lives in fills my heart with deep love . She will always be my hero. Hopefully one day there will be a cure from this devastating disease. A disease that destroys families and removes ones life forever.

My book My Mom My Hero is for the special people in our lives. A story of love and relationships. Available on Amazon & Kindle worldwide.

http://www.amazon.com/Mom-Hero-Alzheimers--daughters-bittersweet/dp/0615773982/ref=sr_1_6?s=books&ie=UTF8&qid=1363625113&sr=1-6&keywords=my+mom+my+hero