Hard Lessons in Caregiving

 Dementia is hard. It's a lonely place to be -thinking that no one visits and you never go anywhere or have anything to do. Not because that's true, but because you just can't remember your daughter's visit the week before; or the trip to the grocery store the day before; or holding a snake and touching sea creatures just an hour earlier. What happened before doesn't seem to matter as much as us, caregivers, would hope. What matters is what's happening in the moment. And in that moment of loneliness and abandonment, no one is visiting and there's nothing to do and nowhere to go. Nothing could have really prepared me for that punch in the gut every time Mom says, "I haven't been to the beach in ages" (we go twice a week), or "Thank you so much for letting me come. It's so nice to do something different" (we go out nearly every day). You hope that the effort your making as a caregiver has some broader contribution than just fleeting moments of good feelings, but I'm learning that it may not and that has to be ok. I had really hoped that there would be some sort of cumulative affect -enough good, positive attention and experiences would maybe, perhaps help her feel safe, loved, a part of a family. Apparently Alzheimer's does not work that way. 

Unfortunately, that's not a very fun lesson to learn for any of us. I had to learn it again last week! Carol has seemed more depressed and agitated lately so I'm making a conscious effort to be more attentive and inclusive. She likes to be busy and is constantly asking how she can help. Seems like a simple enough question but imagine your 5 year old constantly asking how he could help and then him feeling dejected and useless anytime you couldn't come up with something age appropriate at that very moment. And when you do find something they can do, they still need help and every time you try to help it makes them super grumpy. Fun, right? Ha! So, anyway, I committed to doing better at helping her feel useful and busy. We spent the morning at a nature center. She had such a great time. We even ended it with ice cream -her favorite. We went on lots of walks. She helped me with a project in the kitchen. She helped with laundry. Her mood seemed better. Then dinner prep came and I had her make a salad and set the table. She seemed to be getting more agitated the further into prep we got. I ended up not having anything for her to help with the last 15 minutes before dinner was ready. Consequently, the last remaining good vibes vanished. Shoulders slumped, face fell, conversation stopped and it was obvious she was upset. All the attention that day did not matter in that moment. She felt alone and useless and I couldn't help but take it personally. That's the hardest part for me -not letting it be about me. Compassion is what I probably should have felt in that moment. Hopefully there's some refining happening and some day compassion will come first and not just eventually. 

Oh my goodness, even in writing this it has become more about me and less about the awful disease leaving Carol constantly feeling alone and useless. The other day she was upset about Duncan telling her to use the gate instead of hopping the fence (I know...a post for another time) and said to him, "maybe it would be better if I just went up to my room and died". Instead of feeling sad that she was so upset maybe she actually did feel that way, I was upset she would say that to my son, her grandson. Nothing like expecting someone with Alzheimer's to act rationally to make you look like the crazy one. We have the advantage of at least understanding our emotion to some degree. I mean, eventually our rational mind steps up and helps us sort through the junk and we have some idea of what we're feeling and why. Carol is just emotion. Her rational mind doesn't really work although it's still kind of going through the motions. It's like she feels an emotion and her brain fills in the why. This makes for some pretty interesting stories that typically have similar themes -loneliness, abandonment and uselessness. Like I said, dementia is hard. It really is amazing how long she's kept her pleasant nature. We are fortunate enough to still get to enjoy plenty of her pleasantness but there's been a definite shift in her default emotions. We're looking into ways to help her feel happier and in the meantime getting a crash course in focusing on the present and stretching towards compassion rather than pride. Wish us luck. 

Gaining the Covid 19-19

I probably shouldn't make a joke about gaining weight during a pandemic that's causing so much turmoil and heartache. But, if all the funny memes coming out of this teach us anything, it's that we have to laugh about the crazy state of things or we will in fact go crazy. A little over 2 weeks ago I woke up and immediately felt like  I shouldn't send my kids to school. So weird. I had been reading about this coronavirus and had already started stocking the pantry a bit but surely the kids were fine to go to school. I brushed it off and went about my morning as if everyone was for sure going to school. But then, as I was about to drop kids off, I felt sick about it so I just kept on driving and went back home. That was a Friday and by the end of the day they had announced that kids would not be returning next week. They're currently scheduled to return on April 13th but I highly doubt they will. Just 2 weeks ago, closing schools seemed like the craziest thing. And then all big events were canceled. And then the NBA cancelled the rest of their season and then it went from no groups of 100 to 50 to 10 to 0. No groups. And it progressed to this point in less than 2 weeks. And now watching movies with people hanging out in big groups is weird. We're normal. I've always known I was good with change. A master transitioner. But the rate at which I accepted social distancing and stopped worrying about my kids being out of school is actually a bit scary.

The kids seem to be handling things well also. They don't seem anxious. I've asked them if they're afraid of getting sick. They say they aren't. It helps that we don't really have any friends here to miss hanging out with. No sports or clubs. And we moved just in time to spend Quarantine with nice weather, beaches (now closed), a big backyard and a pool. Jimmy is still working and Mom seems to remember now why we're not going to Vons. We really are fairly unaffected and I do realize how unusual that is. My heart breaks for all the people who have lost income. The working parents who have to figure out what to do with kids home from school. Huge events put on hold. Lost senior years. And the other seniors isolated and alone in retirement centers. A friend told me that her 93 great aunt hadn't left her room at a care center for 11 days. And lets not forget the doctors and nurses and medical staff working around the clock and risking infection to give the necessary care. And then, of course, there's those who are sick. It's weird how they're kind of last on the list. It's interesting to realize how little is talked about the actual sick people. And the only reason I know any of this is because I read about it and see pictures and videos online about it. I don't know anyone who is sick. I haven't heard any first hand accounts from friends who are doctors or nurses  about conditions in hospitals. I don't have a loved one in a retirement center or kids missing anything that matters that much. So, yeah. Sometimes shutting everything downs feels like an overreaction. It's so weird to feel so disconnected from the threat and still so anxious about it. And by anxious I only mean, like, thinking I have "The Virus" every night between 12am-2am. No big deal. No, but really, in my head it feels like this shouldn't be a big deal but if you threw me on an elevator tomorrow with 5 strangers I would hold my breaths, make fists and burn my clothes when I got home. But if you ask me if I'm afraid of getting it I feel like I could honestly say, "no." Tell me I'm not alone in this weird place between being very concerned and  yet feeling like all these restrictions are a little much. Could we please just get some rapid testing ready to go so In-N-Out and Chick-fil-a can take over drive-thru testing and we could all get our results with a side of fries in the next 24 hours? Awesome. Thanks.

They Call Me Caregiver Holly

Crazy times make you do crazy things. What's crazy about this time? Just a world wide pandemic forcing whole nations to go on lockdown. I could probably count on one hand the times in my life I had said the word "quarantine" before last week. Now it's part of the daily vernacular. Along with social distancing, shelter in place, stop the spread, flatten the curve, hoarding, toilet paper shortage, ventilator, self isolation, n95 mask. Oh man. Once I started I couldn't stop. And then having to explain to Mom every day that we can't go to the grocery store or go get her hair cut because of "The Virus". It's all so surreal but not panicky. It should feel more panicky. It doesn't. Now would be a good time to mention that our immediate family now includes Mom MacDougall. We moved in at the beginning of the year to take over her care as well as manage the house. That's actually the reason I'm here, sitting at my computer at 12:40am trying to put words together after not putting words together for many moons. Our experience is unique. I mean, most 30 somethings (I can claim that for 1 more year) are raising kids, not raising kids and caring for aging parents with dementia. I've been encouraged to write about it. I've hesitated because if you know me at all you know I like to find humor in things. And, well, people do funny things when they can't remember stuff and I in no way want to come across as mocking or disrespectful. Hopefully, together, we can laugh about the crazy, cry about the hard, smile about the wonderful, and wonder about the truly fascinating. This journey with Mom has it all. But most of all, it has lots of love and learning. I'm excited to share it with you