I have procrastinated and avoided blogging for well over a month now. But it's time I have to give an update. On Wednesday night of last week (June 22) I had to call 911 to come and take my grandmother to the ER. By the time the EMTs arrived her heart rate was 24 BPM. We could have lost her that night. She flat-lined at the hospital and they kept her alive for a while on an electric current. It was the most horrible thing I have ever had to watch. Electric shock after electric shock just keeping her heart beating. If it wasn't for that current she would be gone. It hurt her. She was yelling in pain to make them stop. But instead she was given morphine. Within an hour doctors put a temporary pacemaker in to see if it would work. For many reasons we had decided that we didn't want them to insert a regular pace-maker and we ordered a Do Not Resuscitate document.
Ironically, Grandma never had to use the temporary pacemaker. They removed the device last Saturday and noted that her heart had never used it while it was in her body. They had it set to activate if her heart rate dropped below 62 BPM and it never did. The cardiologist informed us that her heart has complete blockage and it would most likely be a matter of days until it stopped working. None of us, nurses and doctors included, can understand how her heart is still working.
On Sunday we got my Grandma admitted to McCall Hospice House of Greenville. It is sad and yet it is a relief. Hospice is a place people go to die "comfortably". They try to keep Grandma as comfortable as possible while letting her body go, no longer keeping her on all of the medications that have helped keep her body going for so long. My Aunt Rita arrived from Minnesota on Monday afternoon and has been living in the hospice room with Grandma all week. My mom is there with her all day, too, but then goes home at night. I have been there most days for a few hours at a time, but I skipped Wednesday and Friday.
On Tuesday I sat on her bed with her and she played with me for a while. We made little monkey faces at each other and did this little thing where we go dead-still for a moment and then say "Rawr!" or "Boo!" and pretend to scare each other. As I write it, it sounds like a cruel thing to play with a heart patient! But I swear, it was cute and it made her laugh (and she started it!). We held hands and hugged and then she went to sleep. When she wakes up she gets very fidgetty and the nurses end up giving her "something to calm her down". Sometimes it works and sometimes it doesn't. They've said that when people are at the very end there is very little you can do to make them sleep if they don't want to. They can give morphine to the point where one more mcg would kill them and they still won't sleep sometimes.
Grandma is eating very little and is now mostly sleeping. I'm not sure how much longer she has. As I said, we are not sure how her heart is still working. She has so many reasons to let go, and yet she still hangs on. She can barely see, barely hear, has dementia, is crippled to the point where she could only walk a few steps with the walker (not at all the last couple weeks). At home she was having seizure-like episodes for about two months. We saw a neurologist who prescribed seizure medicine, but now the doctors say the "seizures" weren't real seizures but were related to her heart and having too low of blood-pressure most likely due to her high blood-pressure medication.
I cared for my Grandma at home for one-week shy of three months. It has been an amazing experience and an emotional roller coaster. This past week has given me some much needed time to myself. And I feel so guilty for feeling relief at not having to "deal with her" on a 24-7 basis. Saying it that way sounds cold, I know, but that is how I came to feel. The last month she was really beyond the kind of care I could comfortably give her at home. That is easier to see in hindsight, because it's so easy to question yourself and the situation when you're in the middle of it. Am I just having a bad day? Is she just having a bad day? It became a struggle for both of us. Almost everything I did to "help" her actually physically hurt her. I had so many moments of reflection where I just felt guilty and lost for not being able to do a better job. She would just want to stay in bed and sleep but I would get her up and shower her and fix her hair and get her dressed and make her meals, only to have her have those heart-seizures from the over-exertion of activity and yell at me for hurting her and have her cry when I begged her to eat something. Then at night she would be up all night yelling and screaming for me to come to her every 15 to 30 minutes. It would make me so cranky. So, so cranky.
People always complain about nursing home care. The patients always look unkempt, and the nurses drug them "so that they (the nurses) don't have to do anything else". I honestly don't know what else they could do for a lot of the people. I experienced how hard it is to please someone who has gotten to where my Grandma is now. Anyway, after weeks of not writing, there are lots of thoughts and emotions trying to pour out of me, but now I want to get over to the hospice house and see Grandma. I miss her.
It's funny that despite all of the hard and trying moments I had with her, all she had to do was smile or laugh or look at me and say something sweet and grandmotherly and I would melt and it would make everything okay for a little bit longer. I felt that the other day when she played with me on her hospice bed. I am not sure if we'll ever get another "connection". If we do, I will feel blessed for sure, but mainly now, I want her to get to stop suffering.