How did you get through your hardest days of caregiving? Share your story.

[agoyer]

@LeeW97739 So glad you are here Lee!!!

[LeeW97739]

Amy and you have been walking the walk forever and I am in so much admiration for you and all you do.  Your advice and wisdom has helped so many of us.  thank you for reading.....

[LeeW97739]

This is such a common story and i love you for sharing it.  None of this is easy and i think the most important thing is that you are such a good son and did all that you could do.  Im sorry you experienced those losses in such short timeframes to one another.  And it certainly helps to have a community-- and music-- both of which i know you have!  

[agoyer]

@AARPTeri  One of the most difficult caregiving days for me was when my Mom fell and fractured her spine in two places and had to have surgery or she would never walk again. The doctor was clear it was a very risky surgery, but Mom chose to have it. I sat in her hospital room alone waiting for her while she had surgery for 7 hrs. It was the loneliest 7 hrs of my life! But you know what helped me the most? My Facebook and other online friends. Feeling that support from so many people even from a distance really helped me get through it. I felt supported, even though I was indeed alone in that room.  

So from that I learned to always reach out. That there is nothing wrong with asking for support! Most of us are happy and willing to give support when we know the need is there. 

My Mom got through the surgery but got C Diff in the hospital as well as a-fib, then had a heart attack, congestive heart failure, pneumonia, sepsis and more. She was amazing and it was a marathon. SO many sleepless nights and trying to help her in the hospital (I stayed with her 24/7 for 40 days in hospital before she went to rehab and learned to walk again). 

So - seek and accept support - it only makes you a better caregiver!

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

[ek8251]

Hi Lee,  

Erik Kihss from Silver Bay here.....I know you can certainly relate to this and my experience with my mother's dementia was mercifully not as prolonged as yours was with your dad, but it was trying.  I first became aware of my mother's failing memory when we had a house fire in Feb. 2001 and I found out that she let the insurance lapse in December. There we were without insurance and in danger of being homeless.  I had only started teaching  for the DOE in '98 and could only borrow a few thousand from my pension.  In desparation I contacted my dad's old editor at the NY Times, Arthur Gelb who started a fund-raiser and got us 37,000 from editors, former colleagues and young reporters who knew my dad only by reputation.  It was a Godsend and we were able to make the place liveable, but by no means restored.  

The next episodes were when my mother drove the car into the local supermarket window.  Fortunately no one was hurt.  She did this a second time with my sister in the car while backing out of the driveway into a neighbor's car and then into another neighbor's wall in a yard where children play.  Again there were no injuries, but I said we are not getting the car repaired and I took away her keys.  This made her very angry.  I was taking away her independence.  

I got a professional to come in and test her for Alzheimer's and she couldn't name the president and other ordinarily easy questions. As the disease progressed and on days when she got upset, she would say to my sister "Where's Erik?" even though I was standing right there.  My uncle, her brother called me to tell me that he was changing his will and taking her out of it and leaving his estate to me to take care of.

Anyway, to make a long story short, she died peacefully in her sleep on May 4 at age 83, (two weeks after her brother died),  while she still knew who I was.  At the same time, my sister who was diabetic and had a mass attached to her spleen died 5 days later.

I think sharing your experience with your readers could be very helpful to all those going through this kind of nightmare.

All the best to you and Bob,

Erik

[AARPTeri]

There are some days that just a lot harder to deal with than others as a caregiver!  Tell us how you get through one of those tough days!