Ok. May I be honest? I don't know why I am writing this for all the world to see but surely I am not the only one who is experiencing grief and loss.
Here's what I wrote my children today.
"Met with hospice today and the facility nurse (before they came). Interesting how the head of the unit and he see things so differently.
ANYWAY….the hospice doctor came today along with the hospice nurse. I guess it brought about the reality of the situation again.
It was obvious, by their compassion, that this time..it's the real deal. They asked…"is there anything that you need?" (as if there is no turning back now.) I've never had a doctor ask that before.
Anyway, we talked about how daddy has had a little rally…started eating, saying a few words, etc. In fact, when our favorite aide took him back to the unit, I kissed him goodbye and said, "I love you." "He kissed me, and said, "i love you". We were shocked considering he's hardly said anything cohesive in years.
The hospice nurse said the UPS and DOWNS are not uncommon but, by the way that Jerry needed to be pulled up (out of the seat), she felt this could very well mean it's the beginning of the end. Soon he will not be able to get up at all. The fact that he started eating again and that he spoke…could be the UP before the DOWN.
I am so happy that Hospice has been called in again. This doesn't exactly mean Daddy is leaving us tomorrow…but it's just another confirmation that he is not going to last "forever".
The hospice nurse explained how she has seen Alzheimer patients go quickly or linger for a long time. There is never any rhyme or reason.
Our biggest concern is falling. He is still mobile and is at a big risk of serious injury. According to law, it is illegal to use restraint even if to protect the patient. EVEN if the patient falls and cracks their head wide open….a safety belt is illegal according to government regulation. We talked about calling 911, falling in the middle of the night, how he would have to be stitched up, etc. I'm praying that this won't happen. There have been recent occasions where we could barely keep him upright while walking. With his height, the momentum of his leaning forward will surely take him forward to the ground. Yet it is unrealistic to think someone will be with him every waking minute. The doctor…he just shook his head…..as if to say….."it very well could happen…get prepared". We talked about feeding, diapers at night, organ donation, grief counseling …you name it. THANK GOD>>>JERRY HAS NO IDEA WHAT IS HAPPENING!!! That's a blessing."
So, how do you cope when you have to tell your children these things? Much less, how do you cope when these things are told to you?
For me...each time it's different. Most of the time, on the 45 minute drive home, I am comatose. I can't listen to music. I can't talk on the phone. I am completely in a glazed eyed "zone". I need time to process. Process my thoughts and my feelings. Then, when I get home I react. My reactions are so varied. Sometimes I cry. Sometimes I call out to God! Many times, I pour a glass (or two) of wine and throw gobs of paint on a canvas, sometimes I tear off on a bike and then, sometimes, I soak in a warm tub filled with baby oil. Crazy! But, FOR SURE, I do NOT talk to anyone. Idle chatter does NOT work for me...and I do not want to regurgitate the story over and over no matter how well meaning the friend is. That's ok, isn't it? Surely, a friend would understand, wouldn't they?