Day T + 30 and counting...
Last Saturday Boone seemed to be getting much better. I was just about to leave to head to the farm for much needed R&R; to play in my moss garden and let the puppies run.
Dr. S came in and said someone (me) needed to be here round the clock at least over the weekend, to keep an eye on him.
I lost it. Just plain and simple, I went a little bit nuts; well maybe a more than a little bit. I was crying uncontrollably. Just having a breakdown. I could not deal with the idea of being here round the clock. Dr S said "You can sleep on that (incredibly uncomfortably hard and awkward) chair, people do it all the time." I think that's when I really lost it.
I've been an insomniac since college. It's been only since about 4 -5 years ago that the right combination of meds allowed me to sleep. I was never treated for the insomnia, I guess my doc never believed me when I said I didn't sleep, even though when I had a sleep study done, all they said was that I didn't sleep. In my old age I've developed Fibromyalgia and Restless Leg Syndrome; yes the thing all the comics like to make fun of. Let me tell you it is very painful. So I take a lovely drug cocktail that kills the pain and most wonderfully allows me to sleep. I realize this isn't about me, but I was going nuts thinking I'd be back to not sleeping. Now that I know what it's like, I really don't want to go back. I don't think my body could take it at this point. My point. Is, I suppose, is that Drs should be more aware of the caregiver's situation. Some of us are not capable of the martyrdom required for staying at the hospital twenty four hours a day.
I called Boone's brother who is a crisis counselor. He immediately recognized I was having a meltdown. He jumped in and rounded up friends so he and they could give me all day Sunday off. I slept all day. Thank you all so much.
Now it is Monday morning. One of my girlfriends, bless her heart took the graveyard shift. Since I was here Saturday morning, he has had 2 units of whole blood. His hemoglobin count was getting very low, the good news is, his white count is up to 1.2. Still no neutrophils. They gave him Benadryl to counteract any issues with the blood. We sure don't want another trip to the ICU.
Boone is still not able to sustain his O2 levels on just room air. Herein lies the problem, he is very confused and isn't sure what's going on, so he keeps pulling his O2 line off. He pulled his IV line out last night.
He is very restless and struggling to understand what's happening to him. He looks like he is in pain, but when asked, he says he isn't. I hope he gets his own cells growing soon. He's just not thriving at all.
Breakfast is here. Time to get him up, make him eat, clean him up, and fix his bed.
3 comments:
Pauline, you do what's best for Boone and when you are human, and exhausted, and you know your limit, you are not it. Yes, you need help. Many have offered and now you have a system put in place. You are still number 1. You are at your best when you can come and go. Thank you for letting everyone know. You need a clear mind and a smile on your face. Forgive yourself and do not carry the extra burdon of guilt. You are doing great, get the rest you can squeeze in so you do not falter and fall.
Thank you for thinking of us as friends who will understand the pains you are feeling.
Don't feel bad about taking care of yourself. We care about you very much. Lean on the family. Everyone is willing help. It reminds of the airplane line to put on your mask first so that you can help others. I still stay He is lucky to have such a great wife.
I am glad his number are growing. We G's just don't do meds well. Focusing on growing numbers!
Donor
This is, from all our family has experienced so far and from the accounts of others, an awfully hard ordeal on not just the patient but the ones who love him. And for the primary caregiver, who is usually the one who loves him/her the most, it's got to be killer! It sounds to me like you're fighting the good fight and hanging in there with Boone, doing what needs to be done for him and for yourself, which is vital. Hoping and praying that things will soon get measurably better.
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