One month ago today (June 5, 2022), my mother left her home (with her caregiver) and headed to the hospital with a bleeding hematoma on her leg. It had been (approximately because I've lost track) 17 days since she'd been released from the same hospital with a diagnosis of dementia. She hasn't been home since.
Over this past month, she's been in at least 5 different hospital rooms (inclusive of the one she is currently in and not including the ER area). She's been released to a rehab facility (which seemed like the right thing to do at the time, but now I wonder; and that's not a knock on the facility). She's been returned to the hospital. She's had the leg issue, a urinary tract infection, dangerously low blood pressure (from a woman who has had high blood pressure all her life), malnutrition (she doesn't seem to be able to taste much of anything and I'd say that's a side effect of the Covid that she had back in February, but it seems to me that this issue started before then), low oxygen levels, pneumonia, sepsis and (I'm not completely sure on this) MERSA. (Plus now she seems to be unable to hear out of her right ear, but while that affects the quality of her life, it's not pressing in my book.) Oh, and I shouldn't forget to mention the partially collapsed lung (possibly due to the insertion of a feeding tube through her nose), that required a chest tube.
I've been to see her 5 different days (hospital and rehab), but a total of 10 (I think) times since I will stop to see her, then drive the 13 or so miles to see/check in with my dad and then drive back to see her before heading home. I've talked with a plethora of doctors (rarely the same one twice) and nurses. I've consulted with palliative care and hospice. There have been times when she was unresponsive. There have been times when she has been incredibly hurtful with her words. She has cried. She has smiled. She has been grateful. She has been loving. She has been confused. She has been incredibly lucid (knowing that June 30th was the date of her parents' anniversary and stating the make, model and mileage of her car).
All of this in the span of 30 days.
She gets upset when she gets confused. I get upset when I get confused. How can you NOT get confused?
Even with the notes that I try to take, I'm sure I am missed things. There is so much to take in. It is so easy to miss or overlook something. I've taken pages of notes. Written down phrases that made sense at the time, but now I'm not always sure what they mean. Which phone number is the right number for my mom now? (Since she's had so many different ones as she moved from room to room.) Which doctor is which? One says it's bad; another sees improvement. Who is compassionate? Who is abrupt? How do I navigate this path? I appreciate the support I get, but who do I call now? Who needs a follow up call, email or text? I am the main point of communication and sometimes I cringe when the phone rings.
She sleeps a lot. I call her often (at least 3 times a day). If she is sleeping, she won't hear the phone. (Even though it is very loud.) There have been days when she didn't know how to answer the phone. Even with dementia (and at this point I'm wondering if that is a correct diagnosis), she seems to have figured it out now...since the phone has been at her hospital side for over 20 days.
If she doesn't answer does it mean she is asleep? Does it mean she is having some sort of treatment? (Respiratory therapy, speech therapy) Is she being changed? (Perhaps the worst thing for my mother in the hospital is being unable to care for herself. She is mortified that staff have to clean her "messes," even though that is part of life that no one can control.) Or has she lapsed into confusion again?
I went to see her on the 4th of July. A crazy day to head south on the parkway, but I knew that if I went early and left by noon, it wouldn't be too bad. It wasn't.
I was pleasantly surprised to see that she was awake when I arrived (around 8:30). She was surprised to see me. (I confirmed more than once that I wasn't a hallucination.) I saw her smile and it was priceless. It was a great couple of hours; even though she had difficulty hearing. She was alert and we talked. I shared photos with her. I helped her understand what the doctors and nurses were saying/doing. (None of which is made easier with masks, accents and the background noises of medical machinery.) I think I wore her out.
Today, on this 5th of July, I don't think she sounds as good as she did yesterday. After this time, you'd think I would be used to the ups and downs. But I am not.
She says she is tried all the time. How could she not with all that she has been through and is still going through? I am tired all the time. I'll admit that as much as I try, I am not focused fully on anything. I feel worn down. (Even though I had an incredibly relaxing afternoon yesterday. What could be a better 4th of July holiday than sitting outside on the patio with the music playing, a good book to read and gentle breezes? Well...maybe there could be better, but it suited me just fine.)
It's been a tiring month. (I can't believe it HAS been a month.) But I need to take a deep breath and keep going. My mother (and I) need to keep moving forward, even as setbacks throw us back. Or as Dory in Finding Nemo said: "Just keep swimming."