Saturday, February 2, 2013

As time goes by

Dad, with Tracey, his Hospice Nurse

My father is now in Severe or Late-Stage Alzheimer's disease -- the last and final stage before the "end stage"  -- according to his doctor and the hospice nurse in charge of his hospice care.

On the one hand, Sis and I knew this. It would be hard *not* to know when we see the decline on a weekly basis. Dad can no longer feed himself: not only can he not remember what utensils are for, he often has trouble coordinating his hand to get the food/drink to his mouth. His appetite, always so healthy, has seen a marked decline. He can't walk unassisted, and even then he is in danger of falling. He falls...a lot.

On the other hand, it's hard to hear it confirmed because last stage is, well, last stage.

Dad could last months or years in this final phase. No one can say for certain. His decline seems fairly rapid these last few months, though, which creates an awful sense of foreboding. Every time we go to visit with him, we wonder,"How much worse will he be today?" Every time the phone rings we wonder,"Has he fallen again? Or is it something much worse?" (I was the one who got the phone call when my Mom passed away. My heart skips a beat or three every time I see by caller ID that Dad's residence is calling.)

The toll this takes on family is incredible. It's a day-to-day struggle not to be overwhelmed by grief, not to be swallowed up whole by the sense of helplessness you feel. It's a struggle to be upbeat and happy when visiting your loved one. When I leave Dad after a visit, I can tell you that the desire to sleep for hours afterwards is always present because it's such a draining experience.

Still, you go on. We feed Dad his lunch when we visit. We try to converse, but mostly these days he wants to sleep. (We spend a lot of time watching him sleep, especially now while they are still adjusting his meds for the behavior problems I mentioned in an earlier post.) We hold his hand, kiss his forehead. Tell him we are near.

Minute by minute, hour by hour, you do the best you can.

And you hope and pray that it's enough.


  1. This is so sad, because I remember him years ago as the Uncle who was so very active. I also couldn't believe your mother when they told me she had a sort of dementia, because she always remembered me. I wish they would figure out how to cure this...or keep it at bay. The first thing that comes to mind when I see this is...."what is he thinking if anything?".

  2. I happened on to your website from a post on facebook from a friend of mine in Greensburg. I am from Ligonier and my Aunt was from up on the ridge. This is timely and not an accident that I have come upon it today as my Aunt is 73 today and suffers from Alzheimers as well. I have found that it is a disease as painful to go through as cancer is. While I dont care for my Aunt on a regular basis, I do help to give my brothers family who do care for her regularly a break. When I saw the video of your dad singing, I felt happy and encouraged, because I saw his lips move and I felt he did recognize the song. I am blessed and I want you to know that I will pray for you as you struggle with the upcoming days and this disease.

    1. Pam, I'm sorry I didn't respond sooner. Thank you so much for visiting and I hope you come back often. Those of us on this journey with our loved ones are a special family.

  3. I'm so sorry to hear about this. When I saw the note about the nurse trying to get him to sing I immediately had a flashback to a pub in Alexandria and thought, "Well she needs to play The Unicorn Song for him." Blessings to all of you. Traci (Haymond) Crawford

    1. Traci, would you email me? I'd love to hear a few more details about Dad singing the Unicorn Song. :) My email is cia at briarwoodstudio dot com.

      Thanks, and it was lovely of you to comment.


    2. P.S. I just bought the Unicorn Song on iTunes for him. :)


Thank you for sharing this journey with us.