Saturday, January 30, 2016

LIFE OF A LONG DISTANCE CAREGIVER

LIFE OF A LONG DISTANCE CAREGIVER

I remember, several years ago "defending" myself from a few caregivers who thought that I should not say I was mom's caregiver, since I lived so far away. Their tone was less than complimentary accusing me of not physically caring for my mother each day. Their voices stated how could I speak about being mom's caregiver, what could I possibly know. They had the burden of living with their parent and taking care of them with what seemed to be a shift of twenty four hours a day.

At first I felt hurt. How could they think that the pain of seeing a parent disappear was any different than what they were feeling? I wondered if I was any less of a daughter to my mother because I did not live near her. Did I not feel the same amount of pain or maybe more? What difference did it make? I was and am my mother's daughter, and that will never change no matter how many miles or oceans separate us.

My heart breaks, my eyes fill and swell with tears the same as theirs. My feelings of affection are as deep and I tremble every time my mom forgets my name.

I do have great compassion for them and I could feel and share their pain! Yes I did not live with my mother so maybe my long distance care giving was easier, yet I too, had the agony of hearing and seeing my mother disappear in front of my very eyes. One moment she knew me, and then while still on the same phone call she had no idea who I was or who she was speaking to.

I spoke to mom's caregivers every single day to hear all about mom's conditions. Sometimes mom had a moment of clarity and at other times she was going by ambulance to the emergency room after the aides found her bruised or with a UTI (urinary tract infection) which had mom hallucinating. I heard about how mom loved to listen to the CD'S that I made of her favorite show tunes. I questioned what she ate, if she took her vitamins and what were the plans for the day.

There were times when I was so frightened and hurt since I was not able to just jump in my car and rush to take care of her. Once, when she was in the hospital in rehab I spoke to the physical therapist who told me that my mother was not following instructions. My answer was "how could mom possibly remember what you just said since she has Alzheimer's." Hearing the response "oh I didn't know she had dementia" was upsetting since hospitals are not required to list the disease on the patients chart.

I once received a phone call from the First Response that mom's neighbors reported her "just sitting" outside her apartment on the curb. Her caregiver left for the day and because of confusion mom went to sit outside to wait for her. You would think that one of her neighbors would have just brought her back into her home. Maybe they were frightened or afraid of "catching" Alzheimer's. After all these years of knowing her how could they now just shun her like this?

So with deep thought my question is, am I any less of a daughter than the others since I am a long distance caregiver? Or do I feel less pain or love my mother any less? Thankfully for me I do have the answer.  My love for her is as deep as the bottom of the sea and as vivid and bright as all the stars that light up the universe. She is my mother and I am always her daughter.



MY MOM MY HERO book is dedicated to the people we love. 
Available on Amazon & Kindle & Audio




7 comments:

  1. Replies
    1. That's all that any of us can ever do. Always, Lisa

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  2. The last two sentences say it all! I hope you have had a wonderful visit with your mother. Hugs, Barb

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  3. Yes, w
    e do what we can. My mother has vascular dementia and is in hospice care. I lived with her for four years and then she went to a retirement/care facility for two years. Now, she is in a board and care and mostly bedridden.
    My heart is breaking. I guess this is what it would feel like to have a kid with incurable cancer. You want to, but you just can't fix it.
    Thanks for sharing.
    Annie Cholakian
    La Qinta, California

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    1. Annie you really have touched my heart and I know that the two of understand all to well about this horrific disease. You and your mom are in my heart & prayers. Lisa

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  4. Dear Lisa
    What a thoughtful entry, it made me stop and really think before I sent this response back to you. I can see both sides of this question. first of all we do not know what had just happened in these peoples lives such as whether they were cleaning up after a bathroom accident or being hit by a cane and yes this would make them say such hurtful comments not being mean but just being tired and really wanting someone to know what they are going through. This disease is not easy for any family member whether they are living in the situation or not in the same city. To call someone a long distance caregiver is probably not the correct way to describe it because whether we are in the same room or not we are all caregivers of a person we love with all our heart, It is not any easier on you when your Mom forgets your name when you are on the phone then it was for me sitting beside her. In some ways I would say that it was probably harder for you because you would feel guilt that maybe if you were closer she would have remembered longer and that must be so painful for the caregiver that lives away. I want you to know that you give more time to your Mom then a lot of caregivers that live in the same city. When Mom was in the hospital I watched people never get visitors and I know that you are active in her care. Don't ever question whether you are a caregiver because you are very much a caregiver and are affected by the progression of this disease just like someone who lives with the person. I hope you had a wonderful time in Florida with your Mom because I know how important that time is to you. Tomorrow it will be 2 years that my Mom died and I miss her more today then before. Remember your love is deeper then the sea and brighter then the stars and she loves you the same way. Big Hug Carol

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    1. Carol I so love hearing all the love that you have felt for your mom. I can only imagine how much you miss her. Thank you for all your kind words and support. Hugs, Lisa

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