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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Hospice

“I Love You”

30 Friday Nov 2012

Posted by Ann Napoletan in Eason House, HomeReach, Hospice, Mom, Ruminations, Support system

≈ 4 Comments

Three little words that mean so very much. Mom was mostly peaceful today. She wanted to walk quite a bit early this afternoon, so we walked, but she was clearly exhausted and could barely hold her eyes open. She had a piece of toast, two Ensures, ice cream, and some grapes. Once she finally settled down in her favorite chair, she was full of kisses and a very clear “I love you.” Amazing how that phrase becomes more and more precious with every day. I’m not sure how many more times I’ll hear it, but I’ll treasure each one.

I’m glad this day is over. We met with Bonnie, an absolutely wonderful, compassionate, genuine nurse from OhioHealth’s HomeReach Hospice. The way she approached my mom was night and day from the way the nurse from Heartland came at her. In fact, she was able to take her blood pressure, pulse, listen to her lungs and heart all without Mom making a peep.

So, the admission process is complete and the team assigned to my mom will be out on Monday. I feel as good as possible in a sh*tty situation. I am 100% confident in the decision to bring hospice on board at this time, and I think HomeReach is the right choice. Bonnie called me back a few hours after our meeting to update me on her discussion with Dr. Mestemaker, and I feel like we have a plan in place. Should things get worse, we can call at any time over the weekend and they will send someone out. Kobacker House – on a temporary basis until meds are worked out – is also an option, but I have made it clear that I will only consider that if we have no other alternative. I want her to stay put where she is comfortable and surrounded by people who know and love her.

It was an emotional day… an emotional week, actually, and the first part of next week will likely be the same as we meet individually with members of our HomeReach team (social worker, chaplain, etc.). After that, I imagine we will fall into a routine of sorts, but we’ll know we have another layer of support anytime we need it.

Jess and I are both absolutely overwhelmed by the love and support we’ve received throughout this ordeal and particularly this week. Texts, emails, FB messages, and calls, all of which are more helpful than anyone can imagine. Just knowing people are praying for us and sending so many positive thoughts is helping to lift us up and give us strength when we need it the most. We truly can’t say thank you enough.

Our Eason House family continues to be incredible, and there are no words to describe the blessing they are. They’ve been there every step of the way, caring for my mom as if she was their own mother or grandmother, always there when we need them, and right alongside us with tears of their own. Such a rare and special group of people…

photo(5)

Tim sat with mom for awhile. We were shocked when he mentioned the little watusi dance they used to do and she actually started doing it in the chair!

Tim sat with mom for awhile. We were shocked when he mentioned the little watusi dance they used to do and she actually started doing it in the chair!

This is what pure unconditional love looks like...

This is what beautiful, pure unconditional love looks like…

photo(4)

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Another day…

29 Thursday Nov 2012

Posted by Ann Napoletan in Celebrities, HomeReach, Hospice, Mom

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…and not a great one. It started out beautifully, for the first ten minutes I was there. The rest of the day, however, not so much.

When I came in, Mom sat up in the chair, clearly responding to my entrance. She smiled and held out her hand to me. I went over and kissed her, and she kissed me back. It was the kind of moment you want to remember forever – so very sweet.

Unfortunately, things went downhill from there. Fussing, yelling, crying. Absolute torture to watch and I’m sure even more torturous for her to experience. It was sometime this afternoon when I realized we could not continue this. It just isn’t fair to prolong her suffering if there is something that can be done to calm her. I called HomeReach Hospice and they are coming to admit her tomorrow. Such a difficult decision, but I just don’t think we have a choice. Simply put, not doing anything would be cruel at this point. Now the goal will be to keep her comfortable and at Eason House where she is truly at home.

Today was the first time I’ve heard her call out for her mother, but there was no mistaking it. She called “my mother” four different times throughout the course of the day. Oh how I wish I knew who and what she is seeing, hearing, and thinking. Her struggle is obvious, and this was one of those days where I couldn’t do a damn thing to soothe her. Not.a.single.thing. Without a doubt, the most helpless feeling in the world.

This does provide reassurance that bringing hospice in now is the right thing to do, but somehow that doesn’t make it any easier. Despite the fact that I’ve been saying goodbye to her for eight years, I am not even close to accepting the reality of her actually being gone. It sounds crazy, but I really didn’t realize how difficult this would be. It’s not as though we haven’t known it was coming… but the idea of not being able to go sit with her, hold her hand, and hear her say, “I love you” is quite truthfully something I just can’t think about without crying.

The airing of Colleen Marshall‘s annual documentary “Journey Through Alzheimer’s” was tonight, and this year it was particularly poignant – I’m not sure if it was the stories that she told or just the emotionally raw state I’m in. Each segment will be up on the web tomorrow, and I’ll post the links. It really is something everyone should see…

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Soul Searching and Turning Points

28 Wednesday Nov 2012

Posted by Ann Napoletan in Blogging, Caregivers.com, Hospice, Mom, Ruminations

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clockRevelations from the past 48 hours:

  • I am 100% certain that we have done everything we can do, and it’s finally time to let my amazing mama rest her weary body and mind. Love her so much.
  • I have the best daughter in the world. This experience has solidified our bond more than I knew possible.
  • The love my mom’s caregivers have for her is beyond words. I don’t think there’s been a dry eye in that house over the past couple of days.
  • I’m stronger than I think I am, but sometimes being strong means allowing myself to fall apart with no apologies and without beating myself up.
  • Just when I think I’ve cried until I can cry no more, I realize I was wrong.
  • Support and compassion from friends will help get you through the roughest of days.
  • No matter what’s going on in your life, if you step back for a minute, you’re bound to see incredible blessings, even among the clouds and gray skies.
  • In the grand scheme of things, most of the things we worry and stress over are incredibly trivial.
  • I am more committed than ever to educating people about this f*cking disease. Advocating for those who can’t advocate for themselves will forever be a critical part of my life.

In today’s Caregivers piece, I am sharing some of the thoughts that have brought me to this point. You can read it here: A Caregiver’s Soul Searching Journey.

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