Friday, April 8, 2011

Hospice care & Troll beads...

So today the Home Health Care Aide came to help me with Dad.  It's definitely nice to have someone around with me during the day.  John, the HCA, assisted me with getting Dad into and giving him a shower (a feat that has become next to impossible with just one person and Dad).  1st shower in a week, which makes me feel awful that he's been without, but how?!  So, after the shower, Dad was completely worn out and we put him in bed (remember, he can't FEEL his legs let alone move them, so the poundage of dead weight is incredible).  He looked a lot better but was exhausted from the whole ordeal.  Was it just a week ago that I and Anne were able to do this on our own?  How?  Oh man...

Then visitors.  Which, though I know in a way they keep Dad going, are exhausting even for me and I think hard for Dad to see because people are seeing him.  Now.  Reality.  I sat down for a minute and the Hospice nurse, Julie showed up to assess Dad during her first visit.  He asked repeatedly if he "could go off of Hospice" if he got better. Of course he can.  BUT he probably shouldn't with his rate of deterioration.  He's unable to get out of bed without tons of help.  AND, Dr. Rothstein, HIS FRIEND, was the one that recommended him to Hospice.  Good.  I think he was in the state of mind that I had called Hospice because I "think he's more critical than he is."  Unfortunately, I've just been reading the obvious signs and am with him so often, I know this is bad.  (For those of you who don't know, I did go through a year of nursing school and was a CNA at The Lindley Inn, an assisted living home locally).  I've seen this sort of thing before whether Dad wants to admit it or not. 

AND, now, for my selfishness...Thank you to all who have sent Dad cards, flowers, etc.  AND thank you so much for those of you who have thought about and sent ME kind words cards and gift certificates!  I'm not being strong to win an award.  I'm being strong because THAT'S what I OWE this man.  I (ME) owe this man more than I could ever put in words and for that I can only repay him this much.  LOVE is what makes me wake up and go to his house every day.  NOT faith, not guilt, not responsibility.  He deserves the best treatment he can have, and, even with the HCA's and Nurses, the best treatment he can have is from family. 

I went today when I left Dad's and bought myself a "Troll" bracelet and some beads/charms.  I bought a couple of glass beads for filler, but have a smiling charm, 'forget-me-not', tranformation, and the monkeys: Hear, see and speak no evil.  Those were my initial important choices for me.  For Dad.  It's by no means full, but I'm filling it with strength.  Something tangible to hang on to.  My form of rosary. 

Find yours and know that you are loved.

Lili/Mother/Daughter/Wife/Business Owner


  1. My mom was an invalid for one bazillion years and my dad had this very cool gizmo sling thing for getting her into her wheelchair, etc. He would roll her onto a tarp (for lack of a better word) and then it scooped her up! And, he maneuvered it until she was in her wheelchair. I think its called a Hoya lift - just looked it up - its Hoyer Lift (my dad is from Boston, so he said "hoya"). Maybe something you could use?

  2. Lil, glad you brought hospice in, they are so helpful. If Dad's too tired for the shower, have them give him a sponge bath. My nana got them daily and really enjoyed it without having to get pooped. And, god willing, if he can "go off hospice," he will. My nana was almost taken off after six months, but that's normal, b/c so many people see a bump in good health from all the extra care, but then they deteriorate again. In PA at least, they give the family this great book about what to expect and what the person might be feeling, etc. and I found it very comforting and helpful. Let me know if you didn't get one and I can send it to you. Miss you and am thinking about you constantly.