Alzheimer's + COVID-19 =
My husband is a lab scientist, so unlike many Americans, he has still been going to work each day this past week. He came home yesterday and innocently commented, "Not much as changed for us, has it?"
We have had my mom on hospice, in my parent's home, with my dad and myself caring for all her needs for over two years now. I didn't realize before that anyone could be on hospice this long, and as we head into year 8 of her Alzheimer's diagnosis, the marathon is starting to wear on us all.
But apart from hospice CNAs and nurses having to take a break from visiting us in our home and our hired part time reprieve caregiver keeping her distance for a little while, our lives have not changed these past couple weeks. Everyone is "social distancing", staying home, not going out to eat or to concerts or other fun things downtown. People are working online (if they can) and saving money because the future is uncertain. If they are lucky, there is time and weather good enough to take a walk or play in the yard.
This is our life every day, every week, every month - for years.
I had this sudden realization this week that we are already so isolated in our Alzheimer's hospice bubble that this quarantine is really nothing to us.
Because my husband and I have a toddler, and my mom lives with us, there always has to be an adult at home. Usually it is my dad and I together while my husband works a full time job. My dad retired early, and I have a flexible part time job online. Occasionally my dad and I take turns getting out and about. It takes planning though. None of us live a life where we can just pop out if we need to go somewhere or get something. He does plan lunches with friends from high school or old work colleagues. My dad runs the weekly grocery errands. The kiddo and I have a standing playdate with my neighborhood friend and her 3 year old. I take Harvey to the library, gymnastics or dance lessons. Sometimes for a special treat once a month or so I'll meet up with a friend for coffee, yoga, or a glass of wine. Sometimes if we are really fortunate, someone will offer to come play with Harvey while my dad cares for my mom at night so my husband and I can go out for dinner and a movie. This happens every couples months or so.
So other than not having a random lunch or popping to the library a bit, what is our typical week like?
Stay at home all day and night
Cook all meals in [or once in a while order take out]
Homeschool the preschooler with games, books, and learning activities
One morning playdate at our house, or walk to see S + J
Work by phone and computer during kid's screen time
Order most household items to be delivered to our house
Communicate with friends via text or phone
Take a walk or a bike ride
Does any of this sound familiar? Here's the kicker - and this is not meant to be a pity party, but an observation. We don't get visitors to our home either, so that hasn't even been a change for us. Apart from hospice workers and our caregiver who helps us two days a week, we don't have visitors to our house. I realized quite a while ago that I no longer expect visitors. I don't count on friends or family to make regular pop ins and I definitely do not ask for it anymore. I've been burned too many times on that front. Instead, I've adopted the "what a lovely surprise" attitude when someone does actually ring the doorbell. Anyone can. Someone is always here.
It's not all bad. Remember, I am an eternal optimist and "OKStef!" My neighborhood mom friend, S, and our caregiver have become very close friends, and I rely on them both so much. They've been amazing to me, to my kid, and to my family. My best friend also always stays in touch, presses me to state my needs, and steals me away for girl time when we can, knowing that those breaks for me are what saves me every couple weeks. My mom has a couple siblings that visit when they can, every few weeks or every other month or so. She has a couple other siblings that if I called in a real bind have been good about stepping up to help. But other than FedEx, UPS, and USPS...those doorbell rings are few and far between... they have been for years.
Here's the other irony of these past couple weeks. We've all been really sick in this house! I had influenza for a week last month. Brutal! I stayed out of my mom's room for 5 days while my dad cared for her. Then last weekend, my dad came down with a painful sore throat, nasty cough, and some kind of respiratory virus that wiped him out for a number of days. I took over caring for mom solo while he rested and tried to keep his distance. Now, we love my mom more than anything. We have cared for her in home for years precisely because of how much we love, adore, and respect her. She was everything to my dad and me. She is also in that bracket that everyone warns about: over 65, asthma, compromised immune system, terminal disease... The flu, coronavirus, heck - a UTI - these things could all kill her.
Without actually discussing it, I know that everyone in this house accepts the possibility and is at peace with it. We aren't taking extreme measures. I still went to the grocery store this week. I went back to helping with her care while I still had a cough hanging on after the flu. My dad was in and out of her room during the worst of his cold. My mom didn't catch my flu, but she did catch his cold. She has a bad cough now. We are keeping her comfortable, she is not in pain, we are treating her with cough suppressants as we can, and she is still sleeping 18-20 hours a day as normal. Will she get over this? Probably. Is it possible it could escalate? Yes. Are we panicking? No. We love her. We have expressed our love a million times, in a million different ways. We will say goodbye when it is time to say goodbye. We will not have regrets.
My heart this week has been with my friends who have moms with dementia and Alzheimer's in memory care facilities. With my aunts and uncles who can't go see my grandma in her assisted living home. It is devastating to be told you can't visit your mom. I feel so deeply for them and hope all is well when those doors reopen. I hope that the saving grace of this disease is that when those daughters wrap their arms around their moms again that a month will have only felt like a day to those women who don't remember much anymore... I hope.
So to all of you, I guess I say: hunker down, be safe, take care of yourself, be respectful of other people's space and needs. Will you survive a few weeks cooped up in your home? Yes, you will. Is homeschooling children a nightmare? No it isn't. Is it possible to survive with job changes, job losses, altered living situations? Yes. Multigenerational living is not easy, it is not very American, but it is certainly a workable solution when money, food, care, and a roof are concerns.
Our reality is isolating, but we have 5 humans and 2 animals in this house, and there is an abundance of love. I can survive on just love for a long time.
#alzheimers #ENDALZ #caregiving #hospice #alzheimersawareness #socialdistancing #isolation #quarantine #lovingkindness #homeschooling #coronavirus #love #respect