In the last 72 hours I’ve had about 8 hours sleep. Last night I didn’t sleep at all. Krista and Kelly stayed with her for several hours yesterday so I could sleep but, even with earplugs I had a hard time relaxing enough to really sleep although just lying on the bed felt good. I think I’m over tired. The last three nights have been hell. Last night was the worst so far. Every thirty minutes or so she either wanted to sit up or lay down, both of which are near impossible because she is so weak, a few times she wanted to sit in the chair which is even more difficult. It requires a lot of pushing and pulling on my part to get her in a comfortable position. Every hour or so, she asked for something to help her breath. She had morphine and lorazepam non-stop. I tried to alternate them when she would let me. She gets VERY adamant about what she wants and does not want to take!
She hasn’t had anything to eat since yesterday morning. I can’t even get her to drink a little Ensure mixed with milk. She does drink some water, but not much. Her breathing is much more labored and the breaths are shorter. If I were guessing, I’d say we have maybe one week or so left. In reality as much as I hate to see her go, I’d really like it to come sooner than later. It is so hard to watch her gasping for air. The only time she doesn’t panic and gasp is when she is totally drugged up.
We had a new nurse yesterday. Our other one, Rachel, has started to only work on weekends so she can finish her master’s degree and she was WONDERFUL! I felt the new one didn’t really listen to our concerns or try to help us come up with a new plan. I also felt she hadn’t looked at Carol’s records to see what sort of cancer she has or what she is currently taking. She kept asking questions that she wouldn’t be asking had she read the records. I plan to call Hospice when Janine the bather gets here and ask to talk to another nurse and also to find out options for assistance. I would really like to get a night nurse. Carol will most likely hate it but Kelly, Krista and I can’t do it alone any longer. Carol is so very weak that it is hard for me to move her, to change her, etc.
My emotions are on edge and I feel nauseous because I am so tired. I called Dave this morning and asked him to come here as soon as he could and to plan on staying indefinitely. He is making arrangements but it looks like it will be the end of the month. I wish this was the weekend of Kathryn’s visit simply so I could have a break and maybe sleep. Krista has to work from 10 to 10 today. Kelly left about 15 minutes ago to head to St. Helens which is usually a long day for him. When he gets back he needs to pick up Ashlin so he probably won’t be home until late as well. Stacey will be gone all day, too. I am afraid to sleep when Carol sleeps because she keeps sitting up on the edge of the bed and she is so weak that she nearly falls over. This is the grim picture of my day. My hope and prayer is I will have the strength to survive it.
Last night as I was helping her reposition for about the 20th time she said “we needed to have a brother” and then she chuckled. She still has a sense of humor which helps, especially when she is beginning to get so testy and I’m so tired. Something else she said to me last night was “I have daddy’s legs.” I guess I looked puzzled because she then said “my legs look just like daddy’s did when I took care of him before he died” and then she laughed. It was a strange thought. Although she has lost weight, she certainly is not as thin and frail looking as daddy was.
No one told me how hard it is to help someone die. You hear “they went peacefully” or “the whole family was with them” or “it was so sudden.” You never hear about the trauma of watching someone being disoriented or talking to people who aren’t there or talking about events that aren’t happening. You never hear about how someone gasps for air or cries. It is always sugar coated! There is little or no discussion of the pain you experience or the frustration of not being able to do anything. Why do we spend hours and hours discussing birth, which is a part of life, but only whisper about death which is also a part of life? We discuss the death of pets or other animals very easily and naturally but not the death of a human.
Making a transition from our earthly self to our next self is not easy. We spend a lot of time between the two worlds. Depending on your spiritual belief this can be joyous or very sad. It appears to be a bit scary as well simply because one does not know exactly what will happen next. Not knowing tends to cause fear.
What I have discovered as I help my sister with this journey is that the sadness comes from the things we will never be able to do again and the people we will never see again. We, the living, can’t talk to, touch, or enjoy activities with that person ever again. This is what makes us sad and causes us to grieve. We are grieving those things we can never do again and those things we might have been able to do: talk, hug, travel, make things, cook, going out to eat or to the movies, just enjoying time spent with them.
We need to learn to savor these last moments even though they are difficult. Enjoy giving those last touches and those last words. Enjoy the laughter about events and activities that have happened in the past and laugh about the events which are about to happen. Find the joy in the sadness. Laugh about silly things such as what to do with the ashes if one is cremated or what sort of celebration of life we will have after the death or even how they will come back and haunt you if you don’t do what they want done! (a story for another day)
As death gets closer, we, those that are the caregivers, become more and more frustrated and feel more and more helpless. Hospice gave us a little book with information in it about signs to look for in the month, weeks, and days before someone dies. They are not necessarily true for all people but apparently for most. They are:
1. Less talking to those present
2. Confusion about day, month, year, time
4. Wanting to be touched – pats on the hand; rubbing the legs, feet or arms, etc.
5. Wanting to tell the caregivers something but not being able to do it
7. Staring into space
8. Glassy eyes
9. Talking to people that are not there (at least you don’t see them!)
10. Being too hot or being too cold
11. Changes in skin tone
12. Losing control of bladder and bowels
These are just some of the changes they say will happen. This causes such inner sadness and pain for those watching their loved ones go through it. We need try to put those feelings aside for a bit and be able to help that person make the transition from life to death. We need to assure them that it is going to be OK and that we are going to be OK. We help women as they give birth. Death is no different. It is a struggle just like giving birth is a struggle. It is not easy for us to enter into this world and it is not always easy to help someone bring a life into this world. Death is much the same. It is a struggle and it takes time. It is not easy to help someone leave this world.
I have cried buckets of tears, buckets and buckets of tears. They are tears of sadness because I won’t be able to play with, travel with and enjoy life with someone I love dearly ever again! Now, I need to turn my focus on the memories of those times we shared and enjoyed in the past remembering the good and maybe even the bad and the ugly. This thing called death is not easy!