I started writing a blog entry yesterday morning, but Dad and I needed to get going. Grandma had a heart catheter done yesterday morning. I was on the phone with her nurse who said they expected her to be back in her room by 12:30-1:00. Dad and I had an appointment with a social worker and her doctor at 2 to talk about Grandma’s condition and to where she’d go after her release, so we figured we’d get to the hospital around 1, since Grandma would probably want to sleep after the procedure.
My Aunt, who shares a home with my Dad now, has known Grandma many years through my Mom and Dad and loves her as a very dear friend. My Aunt is very emotional and tends to rule herself with those emotions. She was stunned that we weren’t planning on camping out at the hospital while Grandma was in getting the procedure done and was chastising us and feigning feeling sick with worry. I decided to drop what I was doing and head out for two reasons. One was not worry about Grandma during this procedure. It had been described to me and while all hospital procedures have an element of risk, this was one for which the doctors did not have a concern and if we were there before Grandma was taken in, it would have only added to Grandma’s stress and made the doctor’s job more difficult. The two reasons were my Aunt and my Dad. The first rule of being a caregiver or for having the responsibilities associated with a loved ones care is to make sure you take care of yourself. Dad knew we shouldn’t be there until after Grandma was out of the procedure with the doctor and was getting a little flustered. I was getting a little irritated, but I was more worried about Dad blowing a fuse or my Aunt worrying herself into a tizzy, or both. I needed to be there for Grandma and had no intention of them both needing my care too! So, Dad and I went for an early lunch before our planed time to see Grandma. That got Dad out of the house and my Aunt calmed because we’d left.
I am all about keeping things in a peaceful balance if it’s in my power to facilitate it, especially when facing challenge. In fact, six years ago, a couple months after Mom died, when Grandma took me to sign the papers assuming Mom’s legal responsibilities for her care decisions and her affairs, we had a long talk. “I need to know that you’ll think with your brain first and your feelings later if you ever have to think for me.” She was clear and explicit about what she wanted with her care, her financial affairs, funeral arrangements and will and was passing the responsibility on to me. After losing my Great-Grandmother the year before, Grandma was very clear about several things she wanted done to keep the stress for her loved ones to a minimal. Being the person entrusted with that has its own set of additional emotions to deal with. It includes making the decisions Grandma said she wanted, even if I don’t agree and more so, regardless of anyone else’s opinion. That may make me seem cold and detached at the time, but trust me, my car’s steering wheel has already seen plenty of the tears that the “emotions second” has created!
Yesterday, when we got in, Grandma was uncomfortably lying on her back. Until the catheter was removed, she couldn’t bend her knee and needed to lay flat on her back. She wasn’t nuts about that! In a letter to my cousin earlier today I mentioned that I was a bit embarrassed because she remembered my name and consistently has, even when she hasn’t remembered others. She asked about my brother, as she usually does, but she didn’t say anything about my husband yesterday. Her mind wandered to a place where she comment, “I wish Dave wouldn’t play with that boy,” in a worried tone. Dave and I shared a little chuckle on the phone later because we both came up with the same name for the boy we thought she might be talking about, a trouble-seeking neighbor when we were in the area of 6 and 7 years old. After going through it with my Great-Grandmother and reading a LOT about it, I had described dementia to Pop as your brain sort of becoming a radio of your whole life with no tuner button. It scans through the stations until a signal comes in and stops there until the signal fades. Then it scans for the next strong signal. Occasionally, that signal is the present, but the older you are, the more channels are available on that random shuffler.
After we visited with Grandma for a little, the vascular surgeon stopped in to see us. He explained that while surgery could possibly help unblock the artery in her neck where the blockage is there is not a guarantee and it’s a risky procedure. Also, recovery from any surgery is dependent on the patient’s willingness and mental desire to heal. Grandma is not in a mental state where she would likely remember she needed to work on recovery ad he advised against the surgery. At the beginning of last month, at a time of much more mental clarity, she talked to a doctor in the hospital about surgery to clear the blockage. It was presented as her choice at that time and her reply was, “You know, I’ve had a good life, a VERY good life. If it’s done now, it’s not sad. I don’t want to surgery.” Given Grandma’s feelings at that time and the doctor advising against it now, it was easy to accept that there will be no surgery.
Now she’s being evaluated by nurses from a hospice home. Hospice, as I was enlightened about yesterday, is not an indicator of only days or weeks left. Someone can stay in hospice care for years. Hospice simply means that the concentration is comfort, not health care, when a cure is not available. Now, Grandma may not be eligible for a hospice house if the dementia is causing her to try to wander the halls and potentially cause herself pain or discomfort. Then the net course is a nursing home with visiting hospice care. We’ll have to see what her evaluation is.
This does make me sad. Grandma was always a vibrant, caring, responsible and intelligent woman. After watching her own Mother’s mental health deteriorate, she said she never wanted to end up like that. She really devoted time to word guzzles, reading, news and educational TV, she even bought and learned how to use a computer for the first time at 78 years old. Despite those efforts, she didn’t beat genetics.
Grandma may not have her mental clarity right now, but her personality is still as it has always been. She is sweet and loving She enjoys a good laugh and although we may not necessarily know what’s making her laugh now, her smile and laugh are infectious and you can’t help but smile and laugh with her. I still enjoy my time that I spend with her as I always have; even I it’s just holding her hand while her mind picks up stations in that radio of her last 84 years and we still share a giggle, a smile and an “I love you.”