It's more than a job - Part 2

Would you be happy to show up to a job if you had a good chance of being physically attacked, yelled at, called names, and faced with hostile behavior? How about adding in a lack of resources, support, and staff?

I’m willing to bet that answer is no.

However, if you work in an assisted living or memory care facility that’s exactly what you could be showing up for on most days. I asked Erika* from my previous post why she chose this line of work and she told me that working in assisted living and memory care wasn’t necessarily her chosen profession but once she started she knew it was what she was meant to do - work from the heart and be helpful however she can.

Working in memory care in particular isn’t an easy job. No day or hour is ever the same even if you’re working with the same resident. What worked yesterday as a pleasant distraction can be met with resistance today. One of the more helpful things the caretakers do is to find out what is important to the resident - is it art? Caring for animals? Music? Religion? For many of the residents, their religious beliefs and hearing stories about those particular beliefs are calming. In addition, their beliefs may provide them an answer when there doesn’t seem to be one or it’s too much to try and figure out. “It was God’s will” seems to be a common response when a resident is faced with something upsetting.

It’s also important to know the right question to ask without putting the resident on the spot. Rather than say, “don’t you remember?” when asked a question that’s been answered over and over in the past, asking why they want to know may open a glimpse into their past that can provide a connection and an opportunity to share a story.

The stories they share are not always happy. One of the residents in memory care, we’ll call her June, once asked if Erika was pregnant when she most certainly was not. Rather than saying “no”, she replied with “why would you like to know?”. June exclaimed that she, too, was pregnant and was afraid to tell anyone. When asked why she was afraid, June told Erika that her husband wouldn’t be happy to hear the news and had beat her for becoming pregnant before. In fact, she had lost children as a result of the beatings. This heartbreaking reality was confirmed by June’s now adult children who had witnessed what their mom had gone through.

Can you imagine how frightened she must have been knowing that her pregnancy would soon become something she couldn’t hide and she wouldn’t be able to protect her baby? She may have never had the chance to share her fears with anyone before but, through her conversation with Erika, she was able to find some solace in the moment she was obviously reliving. Asking the right questions and being willing to listen can be a gift in the moment. The person may not remember the conversation or the time that was spent with them but the feeling of relief or happiness will stay with them.

There are times when even the best intentions can be overwhelming and it’s hard to understand the resistance when it happens. I know this has happened with my mom and it really threw me. When I first moved her here to Oklahoma I had planned to take her out to lunch at a place that she always enjoyed going to when she was visiting. I had told her I was going to be picking her up and taking her out and she was looking forward to it; however, when the day came she told me she no longer liked that restaurant and didn’t want to go out.

At the time, I really didn’t get what was going on with her and I couldn’t figure out why she didn’t want to go. I did ask and all I got was an “I just don’t want to”.  Erika has seen this same thing many, many times. Sometimes, she said, even if you’re doing something kind it’s just too much for where their emotional and mental capabilities are at the time.

The people who take care of our loved ones, whether it’s in a facility or home health, are a special breed. Especially now. The turnover rate is high, the hours can be long, and the working conditions aren’t always the best. I’d like to thank the people who show up day after day and pour their hearts into doing the best they can. I don’t know what I would do without them. 

* To protect my subject’s identity, their name and other identifying characteristics have been changed.

What it takes

I’ve noticed people, including myself, mentioning that they’ve observed a change in themselves since they became a caregiver. There are the obvious changes; way more tired, more stressed, more patient, and more appreciative of times that are good. We’ve most likely gained a bit more compassion and found we appreciate kindness in ourselves and others a little more. Then there are the not so obvious changes, the ones that maybe only we notice. For me, I’m less patient; not outwardly, but in my head if that makes sense. And there’s always that edge of constant worry - worry about money, and wondering if I’m doing enough, along with the fear that goes through me when mom’s number comes up on my phone or when the phone rings in the middle of the night.

I’ve been listening to a Cognitive Behavioral Therapy (CBT) course on Audible. The subject has always interested me and I may as well learn something while I’m getting my miles in. The instructor includes recordings of sessions he’s had with actual patients; one of his patients, Maria, really touched my heart:

Maria and her husband, Jack, have been happily married for forty-five years. They had retired, bought a sailboat so they could explore the coast of Maine together, and were looking forward to this new chapter of their lives. Then he was diagnosed with Alzheimer’s.

I have no idea what it would be like to have a spouse with this disease and I hope neither Bill nor I will ever have to find out. But when Maria speaks about the worry, guilt, anger, and depression I can hear it in her voice and understand it from my point of view. She’s actively mourning her husband while he’s still alive; he doesn’t know who she is most of the time and he can no longer take care of himself. She’s doing the best she can because she loves him but it’s changing who she is. That’s the part I understand the most - this disease not only changes the person who has been diagnosed, it also changes the person who takes care of them. Pain will do that.

We all know there’s two kinds of pain; physical pain and emotional pain. I’ve often wondered, hypothetically, how much pain of either kind a person can take before it kills them? Delivering a baby is pretty high on my list of physically painful experiences - in fact, it holds the top two positions. I’ve experienced childbirth without an epidural twice; not by choice but due to crappy planning and a baby who was in a hurry. The thing is, with babies, the pain itself won’t kill you (although it sure as hell felt like there was real potential there) plus, there’s most likely a happy pay-off at the end. Thankfully, when we reflect back on physically painful events, we may wince at the memory but we no longer feel it.

Emotional pain is different; it can change who you are - you know, you’ve been there. There are songs I can’t listen to, places I avoid, and things I won’t do because of the pain I’ve associated with them. I’ve had my heart broken, I’ve lost a best friend, I’ve hurt someone I love, I’ve watched my dogs take their last breath, and I’ve experienced the deep pain of losing my dad. When I reflect back on some of those times I can still feel the pain - not as much and not as deeply as I did at first, but it’s still there. As awful as these experiences can be there is good that can come out of them; it’s through these experiences that we gain compassion and the ability to empathize with others going through something similar. How else are we able to witness a toddler having a tantrum and look at the parent with a “I’ve been there too and it sucks” smile?

Being a caregiver for a parent or spouse with dementia or any chronic illness is draining, emotionally and physically. And the emotional pain that comes with it is, for me, a slow burn. Of course, when mom was first diagnosed and I was trying to figure stuff out, the emotional pain and frustration had some moments that were anything but a slow burn - they were white hot with their intensity. But now, things have settled into a kind of normalcy; the worry is always there but it’s not as loud as it used to be.

So, where do you find the energy to keep going and still feel joy, happiness, contentment, and some semblance of control over your life? I’ve said it before but I think it’s worth repeating - to make the time to take care of ourselves is the best thing we can do for the people we love. A sleep deprived, stressed out, malnourished, depressed caregiver is not what any of us strive to be but it’s a role that seems to be incredibly easy to fall into. Plus, on top of it all, we’re harder on ourselves than anyone else would ever be.

Someone very dear to me had a mantra he would repeat to himself while taking care of his dad:

Today I will be the best I can be with my dad. And when I don’t feel like it, I will act like it. Tomorrow I will look back on today and I will say, well done.

Being the best you can be today does not mean perfection; it’s the best you can do with the physical and emotional resources you have right now. There are times when I feel frustrated with mom but nothing good will come out of me expressing that frustration to her, I’d be venting which only adds fuel to the situation. I’ve found if I re-frame what is happening, or let it go and move on, I eventually feel more in control and I don’t leave mom feeling like a scolded child. Many times it’s not your actions that can make or break a day, a visit, or an outing - it’s your reactions. It’s nice to sit down at the end of the day, pour yourself an adult beverage, and know you handled things in a way you can feel good about. Guilt and remorse isn’t a good look on anyone.

My friend, Jonathan Kirkendall MA LPC, has a series of videos  he calls “30 Second Therapy”. One of the videos is about preparing for a big life change and in it he explains how important it is to have internal and external support in place. External support meaning you surround yourself with people who have experienced something similar, like your friends, or a support group. Internal support, as Jonathan explains, is a time to practice a mindset of curiosity, or self-compassion. When you hit a wall, rather than quitting and  feeling as though you’ve failed, think about how to get around it or how to work with this particular challenge. Take some time to visit his page, it’s so very worth a look around. Oh, and be sure to check out his story. Our history and what we do with our experiences is what makes us who we are, and he has done an amazing job.

I found an article at the Family Caregiver Alliance  site that addresses the special kind of stress that caregivers are under. Did you know that caregivers are more likely to have a chronic illness - namely high blood pressure and cholesterol -  and an estimated forty-six to fifty-nine percent of us are clinically depressed? No surprise there but, to get out of that cycle, you’ve got to get your own shovel and dig yourself out. Not an easy task when you’re exhausted but the only one who can fix it is you in whatever capacity that may be.

I mentioned Maria earlier in this post.  At the beginning of her CBT sessions I could hear the sadness and exhaustion in her voice - it brought tears to my eyes several times. With some coaching, Maria learned she is enough, she is worth some time to herself, and getting out and being with a friend has some pretty magical powers. Her situation, my situation, is not going to get better before it ends and the emotional pain will be there; however, it doesn’t have to take a front row seat all the time. The people we love deserve the best us we can deliver - there is nothing wrong with showing ourselves some of the kindness, consideration, and tolerance we show others. It’s not easy, I have to consciously make the effort, but I know it’s worth it.

“Take the great example of the 4 minute mile. One guy breaks it, then all of a sudden everyone breaks it. And they break it in such a short period of time that it can’t be because they were training harder. It’s purely that it was a psychological barrier, and someone had to show them that they could do it.”  - Malcolm Gladwell

The envelope, please...

I love science.  For Christmas this year, I asked for a telescope and I received a very cool one that I don’t have to squint my eye to use plus it tracks the planets as the earth rotates. I haven’t used it much because of how darn cold it’s been but as soon as the weather straightens up, just try to get me to come inside on a clear night.

The science of DNA and genetics has always interested me as well. A couple of years ago Bill gave me a 23andMe Genetic Testing and Analysis kit for my birthday. I love this kind of stuff - being able to take college biology in my forties made me a very happy girl. It took me a stupid amount of time to find my slide sample in the microscope but when I finally did, heaven. I was even able to make e.coli glow and not botch it up - pretty simple experiment but if anyone can make it come out a little odd, it’s me. My professor seemed to be amused by my backward way of doing things (I’m left handed so I have a permanent pass); I can still hear him announce, “Mrs. Geiser! How can I assist you today?” almost every time I set up lab space. I would take that class again if I could.

Anyhow, back to 23andMe. The ancestry part was interesting, no real surprises. I’m mostly Northwestern European; British, Irish, French, German, and Scandinavian. The part that really tickled me though, was that out of the over 1,100 people on the site that I’m related to, I’m in fourth place for having the most Neanderthal variants (there has to be a competitive gene in there somewhere). With 293 variants, I have more than 74% of all 23andMe customers and I have my Neanderthal relatives to thank for my height. Fascinating.

Stick with me, I’m getting to the point of all this.

The site also tests your DNA for carrier status and genetic health risks if you want them to. As more tests are done on my sample, I will occasionally get a notice that I have a new health report. For almost all the tests they have run on my DNA, I’m not a carrier nor do I have a gene associated with a genetic disease, like Parkinson’s. I say “almost” because I do have a genetic variant for age-related macular degeneration which is good to know. I told my ophthalmologist, he noted it in my records, and suggested some supplements to take. No big deal.

A few months ago, I received an email from 23andMe that there was a new health report in my records. I opened it and it, and after a few “disclaimers” and “are you sure you want to know?” windows I got to the report stating that I have the e4 version, or allele, of the APOE gene which is associated with late-onset Alzheimer’s Disease. I only have one, not two, so my genetic risk isn’t as high as it could be but I’d really rather not have any at all. The quickie stats* for females with one copy of the APOE e4 variant are as follows:

                                   Age 65                                         less than 1% chance 

                                  Age 75                                          5% to 7%

                                  Age 85                                         27% to 30%

                                  No APOE e4 variant                    6% to 10%

                                 General population of women     less than 1% to 14%

*this information was compiled by 23andMe

So now I need to sort out how I feel about this. I could take a glass half full approach and be happy that there is about a 70% chance that this little gene stays asleep and I skate through my 80s with my memory intact. If I had never been exposed to someone with dementia or Alzheimer’s (at this point, maybe mom has Alzheimer’s - either way that ship has sailed) I think I would have read the report and thought, well shoot, that kind of sucks and moved on. From where I’m looking at it, the glass is most definitely half empty and it more than sucks; it terrifies me. Not in a paralyzing, I can’t move on with my life, it’s all I think about way. It’s more like a little tic tac time bomb has been implanted in my brain and I can hear that bad boy ticking away. The ticking is very quiet and may not ever mean a thing, but it’s still there.

I did some reading about the gene and looked into what I could do to help myself: eat well, exercise regularly, and never stop learning and challenging my body and brain. Check, check, and check. Through my reading, I ran across some sobering facts at the Alzheimer's Association website. Did you know that deaths from heart disease have decreased by 14% since 2000? That’s great news. Did you know that since 2000, deaths from Alzheimer’s have increased by 89%? Well, hell. And there’s the movie Still Alice with Julianne Moore. That gave me something to think about. A lot of something. There’s so much information out there and so much to learn about Alzheimer’s; however, the more I read the further down the rabbit hole I found myself going so I had to put it aside.

There’s always a chance that being with mom is the closest I’ll come to dementia or Alzheimer’s. Plus, there are so many positive, wonderful things I have to look forward to - I’m not going to let something I have minimal control over muddy things up. And really, who’s to say I won’t get taken out by some wayward pelican on one of my walks by the lake? Or have my number come up on the Northwest Expressway? I’ve been in a wreck there, believe me, I know all too well it could happen in the blink of an eye. None of us are guaranteed tomorrow or even the rest of today so I’ll be grateful for what I have right now and keep doing what I’m doing the best way I know how.

In hindsight, would I still want to know? I can say with 100% certainty I would. Mostly because I would take my own advice. For example: Whenever my son took a test or a final while he was at OU, I’d ask him how he did - he’d tell me how he felt he did, but he refused to check his grade online until I threatened to check it myself. It was as if the act of checking it somehow made it gather up molecules and become real. For a kid who usually uses logic as a weapon, this behavior made zero sense to me. Whether you know the outcome or not, it’s still there. It exists. And you may have time to do something about it.

"Fear keeps us focused on the past or worried about the future. If we can acknowledge our fear, we can realize that right now we are okay. Right now, today, we are still alive, and our bodies are working marvelously. Our eyes can still see the beautiful sky. Our ears can still hear the voices of our loved ones." - Thich Nhat Hanh

A small bit of clarity

Last week my friend, Kathy, shared a video with me that explains dementia so well that I wanted to share it. It’s a simple analogy but it is the best explanation I’ve been given for what’s going on with mom. Here’s the link if you’d like to watch it: Alzheimer's Society - Bookcase Analogy . In summary, it explains that while short-term memories may be lost, there are many that remain; however, those memories that remain may mean that her “now” is 1950 something. Interestingly, while the memories of what she did today may be lost, the feelings linger. She may not remember that we’ve just gotten her nails done, but she does know that she is relaxed and happy and it’s been a good day.

The humanness of her is still there; she feels all the emotions I feel with a bit more confusion and perhaps fear thrown in. I can see the confusion when she first looks at me or when she asks me where she lives. Who I am and where she lives comes to her eventually but that’s not going to last. I haven’t seen her afraid yet but I have seen her concerned. Perhaps being alone scares her and that’s why she leaves her room constantly in the middle of the night?  I can see where that would drive her to want to sit in the halls and be around people. That may help me assign some understanding to her wandering but I still wish she would stay in her room; $800 extra because she roams the halls still seems awfully steep to me.

It’s tough to remember to boil everything down to how she feels, but I need to keep it in practice so it becomes easier for me to do. I know she likes it when I hug her or place my hand on her arm, she enjoys having me fix her hair and telling her how nice she looks. She loves putting on clothes that are still warm from my dryer -  it amazes me how long they stay warm once they’ve been folded and placed in her bag. She likes how the afternoon sun comes in her window and lights up the whole room. It’s simple stuff that can get drowned out by all the noise of questions like why does she make piles out of purses and clothes, why does she all of a sudden hoard styrofoam cups, why does she always have those little cups of butter in her purse? I could ask her why every time I see her and she wouldn’t be able to tell me and, really, does the “why” matter? Not in the least.

Even though I have a better understanding of how my mom feels, it doesn’t mean that all of a sudden I’m going to be all zen every time I see her. I know I’ll get frustrated, but I also know how to handle that frustration. Instead of asking her why she has ten glasses from the dining room in her room I just gather them up and say, “mom - really???”. She smiles at me and shrugs her shoulders and I take them back.

While writing this post I thought about a book I read last year. I had heard about it on a podcast and the excerpt that was read seemed so relevant to what I’m going through with mom. Turns out that there are about two parts of the book that could apply, the rest of it is an exploration of marriage and the difficulties that come about as we change and grow as a person while trying to accommodate and appreciate the change and growth of our spouse. I’ve read enough of those for two lifetimes. Overall it’s a good book and a quick read, just not my usual choice.

Back to why I thought of this book. There is one passage I highlighted because it seemed to resonate with how I feel about change and expectation, what is happening with my mom, how I’m trying to fit my own life into my days, how I’m trying to consider what really matters, and the questions I ask myself every day.

What are the forces that shape our most elemental bonds? How do we make lifelong commitments in the face of identities that are continuously shifting and commit ourselves for all time when the self is so often in flux? What happens to love in the face of the unexpected, in the face of disappointment and compromise -- how do we wrest beauty from imperfection, find grace in the ordinary, desire what we have rather than what we lack? - Dani Shapiro Hourglass

I’ll let you know when I figure all that out.

Today is her birthday

The past few nights mom has called at least twice between 2am and 4am, no emergency, so Thursday night I put my phone on mute. I woke up to 8 missed calls and 8 voice messages this morning. All the calls were from my mom between 4:55am and 5:30am. She started by reading back the note I had left for her on Tuesday when I dropped off her laundry. “It says here that you will be picking me up on March 18th at 4:00pm for my birthday dinner. I was just wondering where you are. I’m in my room.” The last one was, “I see it’s going to be your birthday and I’m supposed to be picking you up. I understand that you may not be able to be here, honey. I’m a little confused about the note.” She never gets upset, she doesn’t cry. It’s the spin that she gets herself into when she gets focused on something. It gets smaller and more concentrated until it’s no longer what it started out to be.

I'll be leaving to pick her up soon. I stopped by her place yesterday to remind her I'll be there today. I've made lasagna which she likes, and a salad which she doesn't. She'll pick at the dinner but she'll have more than one serving of dessert and then it'll be time to go. I'd like her to stay longer but one hour is her limit. All I can do is roll with it. 

My mom and me

Why I'm here

My mom was diagnosed with dementia in 2014. This disease is unpredictable, unforgiving, frustrating, and sad. The emotional side of being the child of a person with dementia is tough. There is no real path to follow, no chance of recovery, and good days are replaced by good moments. I’ve visited dementia and Alzheimer's disease information sites and read a few blogs on caring for a parent with dementia thinking I could find a kindred spirit or two to learn from. I even briefly joined a Facebook page for caregivers – I left within a week because I couldn’t read any more stories of despair, the sacrificing of family and self, and the sugar-coated mantra of how lucky we should feel that we have been given the honor of taking care of a parent who took care of us. I take care of her because I am all she has. I take care of her because I love her.