Everything I need to know about dementia I learned in...

If only there were such a book, class, tome, video. Wrap it up, I’ll take it.

I can tell you what I’ve learned about dementia through how it’s affected my mom and me since that’s the purpose of all of these words. I can tell you how she’s changed; the things that would have started World War III such as touching her hair (dad and I both knew to NEVER touch her hair), her clothes, her shoes, her jewelry...she couldn't care less about that stuff now. Don’t get me wrong - she loves to get her hair and nails done but that’s where it stops. Her hair doesn’t get combed after her weekly appointment unless I do it. She just doesn’t see it anymore. She wears the same thing every day unless I help her change clothes or she has to change clothes where, just a few years ago, there were at least three wardrobe changes a day without fail.

But, what has dementia actually done to her? I don’t really know. I don’t know what she thinks or how she feels. I know when she’s happy or when she’s concerned or when she feels I’ve been critical of her - it’s easy to see. But what she thinks, that’s the real mystery. You and I, we think about things we need to do, work, that awkward moment yesterday (or ten years ago), conversations we’ve had. Mom, I think, is driven by the “now” much like an infant would be. She seeks out company, wants to be comfortable, wants to eat when she’s hungry, drink when she’s thirsty, and take care of bathroom needs. That’s about it.

I was telling a dear friend of mine that being around mom is like hanging with a 79-year-old conspiracy theorist with the operating capacity of a mentally challenged three-year-old. I add in “mentally challenged” because, unlike a three-year-old (or at least the ones I had), she can’t be bribed. I can’t change her behavior by promising her anything that’s more than a couple of minutes out since she’ll forget. The conspiracy theorist part I have to chuckle at; whenever I stop by and find her talking with one of her friends it’s always something along the lines of “we’ll have to keep a watch on things”, “there are things happening that we don’t feel too good about”, or “ we can’t talk to ____ because she’s just not all there”. When I ask her what’s happening or what she needs to watch, she can’t tell me. She just smiles and says something like, “well, you know how it is”. Yep, I do (not).

The books and blogs I’ve read and the videos I’ve watched have been helpful in that they explain certain behaviors and how to address and deal with them. But there is no solid progression here, there’s no answer to “why”. Whether I’m asking the universe why this had to happen, or I ask mom why she has sixty styrofoam cups in her room, the answer is: I don’t know.

I think we have a need to know we're not alone. To know that someone else is going through something similar is comforting, even if you don’t necessarily commiserate. On Easter Sunday I was up at mom’s place and ran into some of the other “kids” like me. I don’t know their names but I’ve seen them occasionally. We always do the requisite “how are you?” with the answer of “fine”, but on this day I got “lucky”, and “ok, but you know, this is hard. This is the hardest thing I’ve ever gone through and some days, well...it’s just tough”. My answer to the first one was “no kidding” and my answer to the second? Yes, it’s hard. How old is your mom? He answered that she is 92, I told him mine is 79. He asked if I had any brothers or sisters? Nope, I’m it. He replied that he has a brother on the east coast but he can’t really help so he’s essentially it, too. Looking into his eyes I could see it, that slightly pinched look that comes with being weary and responsible and yes, sad. Happy Easter.

Having a parent with Alzheimer’s or dementia or living in skilled nursing or assisted living is hard but it’s not awful. Having a sick child, being diagnosed with cancer, wondering how you’re going to pay the bills - there are worse things than what I’m dealing with. But it’s all relative, isn’t it? Yeah, I’m having a crappy day but hey, high five! It could be worse. It could be raining.*

*Young Frankenstein, Mel Brooks 1974

Is there a good way for a bad thing to happen?

I have a number of friends who are dealing with aging parents right now and my heart hurts for them because, in general, I know how it feels. Whether it’s trying to get them to comply with what the doctor says they need to do, memory issues, mental health issues, phone calls at 3am...it’s not easy; it’s physically and mentally exhausting, and there’s no handbook for this kind of thing. Just when you think the hard part of your life is over -  the kids are at least semi-independent, you’ve figured out who you are and what you want to put out into the world, you’ve got some goals you’re looking forward to, you can finally celebrate your anniversary alone - life happens. And when it involves your parents, be sure to hold on tight because this ride is going to be epic.

I consider myself lucky. I never had to take away mom’s car keys, I didn’t have to go to court to be appointed her guardian, I didn’t have to go to doctor’s appointments with her, and I didn’t have to convince her to move. She took care of that for me. When she told me she wasn’t coming here for Christmas we knew something was wrong. When her friends started calling because they were concerned, we knew something was really wrong.

Between Christmas and her birthday in March I found it hard to concentrate, damn near impossible at times - her friends were calling and emailing and I was calling mom every day to check on her. Shit was starting to roll downhill and it was gathering speed. I went back to school in January after having to delay a semester because of my surgery. The learning curve wasn’t necessarily steep but eight week semesters are no joke; you hit the ground running and there is no stopping until you take the final. There are no breaks either - the day after one semester ends, the next begins. I was starting to feel a little wobbly emotionally since I’m a stupidly competitive overachiever and anything less than perfect was personally unacceptable. Something was going to have to give and I was afraid it was going to be me. On the other hand, I knew if I dropped out I would resent my mom and at this point, I had no idea what was wrong or what I was going to do with her. If she could just keep it together until May, I could focus everything on her.

I had no idea what to do when I got the call mom had fallen and was in the hospital; however, as callous as it sounds, it was the best thing that could have happened. She was maintaining a facade of normalcy in December but, three months later when we saw her again, it was obvious that something had gone terribly wrong. Small side note - thankfully, all the planets had aligned and her fall happened just before spring break. Mental collapse averted.

No one wants to see their parent take a hard turn that they will never recover from but, am I glad that’s the way it happened with mom? Yes. There was no need for discussion or diplomacy; I didn’t have to deal with convincing her to move to Oklahoma or take her car keys away. Bill and I have done the post-mortem on her situation many times and no matter how we look at it, she signed up for it. She’s the one who set this outcome in motion years ago. I had continuously tried to talk to her about preventive care, moving to a first-floor apartment, taking better care of herself, etc. It didn’t help and, who knows, it may have happened anyhow.

Whenever I think about what got my mom to where she is, it reminds me of a part of Malcolm Gladwell’s book “Outliers” where he describes that there are usually seven consecutive human errors that lead to a disaster- such as a plane crash. In general, I think that applies to our lives as well. For example 1) skip dinner 2) order a drink 3) order a second drink 4) tequila shots 5) send a text 6) grab your car key 7) drive. Any of those things alone are no big deal but, when they occur together, you’re on the fast track to disaster (especially drunk texting - never ok unless it’s to tell me I’m pretty). At best, you’ll end up at home with no memory of how you got there; at worst you hurt or kill yourself and/or another person.

Mom’s doctor at the skilled nursing facility in Illinois was pretty certain that a couple of mini-strokes, poor diet, plus three or more falls that resulted in a concussion contributed to her dementia. I don’t know the exact number of missteps that happened to get mom where she is but, with her lifestyle and resistance to self-care, something was going to happen. I just didn’t expect this.

I can understand how anyone looking at this from the outside may feel that the way I handled this at the beginning was selfish and at times uncaring. Maybe, but I don't think so. There’s some history at play here that I would never put out there; I’ve come to terms with it but I can’t say that the damage to my relationship with my mom will ever be resolved. I never had the need to “pay her back” or to punish her; I loved her but not the way I thought I would. However, the person she is now is pleasant, loving, and kind. Her behaviors can be exasperating and exhausting but she is not; if there has to be a good part to all this, my last memories of her (if she stays on this path) will be gentle ones, and if this is the last chapter to a very long, many times sad, tumultuous story then I’m good with it.

Lately, I seem to be on an Augusten Burroughs kick. No, wait... I am on an Augusten Burroughs kick. It’s where I go when I feel like I need a stern talking to, when I start dancing with my demons instead of putting them in their box and placing them on the shelf where I can’t easily reach them. I don’t need to be told to love myself or that I’m enough; I know all that. I need to be told to snap out of it and take a good hard look at where I want to be and make it happen. There’s a lot to be learned from someone who’s been through hell, wallowed in it a bit, and found out some hard truths along the way.

“Revisiting painful experiences makes you experience the pain. When you need to move past something, this isn’t helpful. What is helpful is realizing you don’t need closure, you don’t need understanding, and you don’t need resolution. What difference would these things make if you had them?

Having one’s mother or father or past abuser admit to their crimes or even apologize for them changes nothing -- certainly not what they did. Rather, such an apology would give you the psychological permission to “move on” with your life.

But you don’t need anybody’s permission to move on with your life.

It does not matter whether or not those responsible for harming you ever understand what they did, care about what they did, or apologize for it.

It does not matter.

All that matters is your ability to stop fondling the experience with your brain.

“How To Get Over Your Addiction To the Past.” This Is How: Surviving What You Think You               Can’t, by Augusten Burroughs, Picador USA, 2013.

It's not hopeless, it's just different

When I’m dealing with mom’s changes I sometimes find myself looking back at how my life and hers have unfolded. I’m pretty much alone in my memories of her; there’s no one left that knew her like I did.  If you’re lucky, you have a friend who has seen you grow from a child to an adult. Someone who knew your parents - and siblings if you have them - and knows your backstory; all the things that makes you you. Someone who knew you “when”.

When I was eleven years old and living in Germany where my dad was stationed, I made a friend whose dad was stationed there as well. We happened to live in the same village; she was just one block over from me and I could see her window on the fourth floor of her apartment building from mine on the third floor. I remember the moment I met her - my friend, Kerri, introduced us on the school bus by saying that Dana had just moved to Germany and needed a friend. We were both the same age but she was my opposite - she looked like a teenager already and I looked like my nickname, which was (and still is, for some people) Missy. I still wore my hair long and in ponytails or braids and she was already adept at blow drying and the use of curling irons. I was tall but looked like a little girl and she was petite and perfect and looked like someone I wanted to be. I happily put myself in her shadow from minute one.

We became best friends in no time. We spent just about every spare moment outside of school together - we rode our bikes all over the village, played tennis up against a huge warehouse wall, roamed through the woods, and sang our little hearts out to the Eagles and Elton John. We’d gather up loose change from our parents and buy flowers at the local florist or candy from the corner store. We weren’t in the same class but we sat together on the long bus ride to and from school. She went on vacation with us and I learned to ski with her. She taught me how to shave my legs and put on mascara.

When I had to move back to the states and leave her behind it was wrenching; my parents got us a room at the hotel we stayed at before our flight out just so we could have one more sleep over and say goodbye. I can still see her waving to me as her dad drove her home. I don’t think I had ever cried so hard as I did that day, I felt like I had lost a sister.

We kept in touch for a few years through letter writing and the occasional long distance phone call. The letter writing fell off after a while and we went on about the business of becoming adults. We kept in touch enough to know where each of us was living and I talked to her occasionally after I left home at nineteen to live in Memphis. Memphis wasn’t that far from where she lived in Arkansas so she visited me there once with her boyfriend whom she would go on to marry.

I was working out of St. Louis when I got married at twenty-two; when we had Leah I was twenty-six. When Leah was two months old Bill got a temporary sixteen-week reassignment to Altus Air Force Base in Oklahoma so we packed up our things, put them in storage, and headed to a furnished apartment far away from my parents and everything I knew. I’m sure Altus has changed since we were there but I hated it; we only had one car and even if I did drive Bill to work, where in the hell was I going to go? There was a Walmart but that was about it. However, it turned out that Dana and her husband (who was also in the Air Force) were stationed near Dallas which was just a little more than 3 hours away so we made plans to meet up with them before they left for their new assignment in Germany and we left for ours in Delaware.

She and I had some interesting parallels. Both of our husbands were in the Air Force and the same rank and 8 years older than us. We both had little girls on September 3rd - she just did it three years before I did. What were the chances of that, especially since we didn’t live anywhere near each other and we had chosen very different paths? Yet here we were, all grown up with children of our own.

I was still less mature than she was by a long shot - she is naturally maternal and disciplined, while I was looking at motherhood as something that was exciting and joyful - not necessarily taking a parental role but more like, “I just made the sibling I never had! I can’t wait to show you ALL the things! Do you like zoos? Me, too!!”. I know I was a good mom - good lord, I stared at that child for the first two years of her life and spent my time almost exclusively with her but, we had FUN! We discovered flowers and bugs and Disney movies together and I shared with her what I loved; the first songs she knew were by Queen and Whitney Houston. My baby, my music.

Anyhow, Dana and I rekindled the closeness we had once had and we talked regularly. It was so nice to be able to share with her once again, whether it was the perils of potty-training, the loneliness of being a military wife, or just laughing over memories and everyday experiences. Dana had a little boy who was a year younger than Leah and I had Logan two years after that. When my dad died in 1995, she was the first person I called; she had known the dad I had loved so much and she cried right along with me.

After three years in Germany and three years in England Dana and her husband were assigned to Tinker AFB in Oklahoma. After more than twenty years apart we were finally going to be within a quick driving distance from each other. We shared Christmases and Thanksgivings together, the weirdness of raising teenagers, and the even bigger weirdness of aging parents.

We talked many times about how exasperating our moms could be. She talked me through my frustrations with my mom and I was with her through her parents’ divorce. I remember her telling me that no matter how hard we tried, we were going to turn out just like our moms. Like hell I was. My mom was a good person but her mothering instincts had limits; I’ll spare you the details but it took a few counseling sessions to get control of my anger and resentment towards her. I tried to tell Dana that no, we didn’t have to become our moms. Sure we looked like them and had some of the same mannerisms but we didn’t have to equal the sum of their parts. But she stuck with her belief and whenever she would allude to her premise it irritated me a little bit. I tried to use some of the things my mom did as an instruction manual of what not to do -  I believe we have control over how we think, behave, and interact, no matter how long we marinated in dysfunction.

As time went on we seemed to grow apart. Our political views were vastly different and not even worth discussion. She still seemed to still view me as “Missy” and at times I felt she had taken on the role of the big sister who knew better but I let it go because she was the closest thing to a sister I’d ever have. During this time, I had gone back to college and was going to take the summer off from classes. She told me to keep going, that I would probably lose my momentum if I took a break and not ever go back - hell, even if I didn’t want to go back that statement was enough to keep me on track even if it was out of spite.

We had a few disagreements but nothing earth shattering until the election of 2012. She was all about pigs and lipstick and the very thought turned my stomach. She went to rallies and I doubted her sanity. I kept my opinions to myself while she peppered me with her views and I just let it happen. It was clear there was a widening chasm between us and it was getting bigger no matter how hard we tried to patch over it.

The night before the 2012 election she and I were watching “The Voice” together which meant we were texting back and forth about the show. Everything was normal as far as I could tell but that would be the last interaction I ever had with her. As soon as the results of the election were in she left my life. She simply disappeared.

I didn’t understand how she could just leave me. We weren’t necessarily best friends anymore, I had a friend who fit that role; however, we were more than friends, we knew each other. No matter what, I was there for her and she was there for me. Until we weren’t. I still feel my throat tighten whenever I think of her. I know for a fact that if we had met in our thirties we would not have been friends but we had history and that shared history created a bond - at least for me it did.

Ever since mom’s diagnosis and move here I have wished that Dana and I could still be friends because, in the same way she knew my dad, she knew my mom. She knew my mom from a little girl’s perspective and no one else I know knew her like that. I need to be able to laugh and reminisce with her about who mom was. I know that I’ll never see her again but there are times that I long for the one person who knew me “when”.  I miss her. I miss who I thought she was, not the person she eventually became - not a bad person, just not what I would want in a friend. It was time to let her go but to lose part of your past like that is painful. Incredibly so.

While looking through one of my favorite “get up and dust yourself off” books, this passage made me think of how we take so many of the things that are closest to us for granted. Safe and secure in their permanence - until they’re not. But it’s not hopeless, it’s just different.

*“In your life, you have a very small, tight bundle of certainties. These are the things that are truly there for you. They may be people, the place you live, your partner, your abilities, maybe even your sobriety. These core certainties are sheltered from your scrutiny. Because you know you can depend on them, you never question them.

That needs to change. You must at least examine them to make sure they’re still intact.

One day you may find yourself in an unhappy place where you feel trapped and without options. You may feel you have looked at your situation and realized it’s hopeless.

I can promise you that it’s not. I can promise you that there is an option and possibly several.

You just might have to move something out of the way first to get a clearer view.

It can be a bit of a puzzle, locating the single aspect of your life that isn’t what it appears to be, the belief you assume you hold dear but that, in fact, you’ve never even questioned.

It’s hard to find what you don’t know you’re searching for.

You have to examine everything up close and look for signs of forgery or those deep scratches that come from forcing something into place that shouldn’t be there.

Like a marriage that doesn’t contain any sex.

Before you can even begin to heal a sexless marriage, you must know why it’s sexless.

I don’t need to tell you how dangerous that can be.

Childbirth is dangerous as well.

Heating something to a temperature of eleven thousand degrees is, of course, so dangerous that it perhaps crosses the border into madness.

Which is why we wear sunglasses when we go outside in the summer. Because that’s the temperature of the sun.

Dangerous things need to happen sometimes.

Just be careful.

Then make direct eye contact and face them.”

*“How to See the Truth Behind the Truth.” This Is How: Surviving What You Think You Can’t, by         Augusten Burroughs, Picador USA, 2013.    

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.

So it begins

2017 is DONE!!! The holidays were busy like they always are but they were good, too. And very happy - our daughter is engaged! The next year is going to be a full one with lots of wonderful things to look forward to.

I’ve written several pages trying to get back into the swing of normalcy. When I went back to read what I’ve written and to choose my next blog post, I noticed one main theme - negativity. That’s not who I am or, at the least, whom I want to be. And it’s certainly not why I’m writing this. I've tried to reframe my thoughts but I'm not sure of my level of success.

I have so much to be thankful for; my family, my friends, and some very wonderful people who make my life so much brighter than it would be without them. I smile more than I think I ever have and I’m so grateful for what we’ve accomplished. It hasn’t been easy, but from where we are now it’s been worth it.

But along with all the good things, there will always be a few struggles. I’ve found there’s a lot of guilt that comes along with taking care of a parent, no matter what the reason is. There are days when I’m just tired, or over-scheduled, or have a big case of the “I-don’t-want-tos”. I feel better knowing she’s ok and she’s still mostly pleasant, but lately there’s been more odd behavior and a lot more confusion. For example: she’s forgotten how to turn her heat on so then she complains that she’s cold and I find her wearing two jackets. She’s also forgotten how to turn it off so her room gets too warm and she turns on her floor fan to cool it down. It’s a simple switch - turn it clockwise for low, medium, or high and turn it the other way to turn it off - but she just can’t remember how to work it. I marked “low” and “off” with a dot of hot pink nail polish. Time will tell if it works or it’s just a pretty little decoration.

Update: it doesn’t work.

I was talking with a friend of mine about how frustrating (that may be too strong of a word) it can be when you do so much for your parent and they forget or don’t acknowledge what you’ve done; not because they’re ungrateful, they’re just not capable of seeing beyond their own scope. The time spent visiting with them; the time spent away from work, family and friends, and the time spent being concerned over stuff you have no control of - it can be overwhelming. Exhausting. And money. There’s always the money thing to worry about. Every year, mom’s rates go up. Not by a whole lot, but we’re getting close to a monthly amount I’m not very comfortable with. It’s just tough. Not horrible by any means but it’s all relative, isn’t it?

You’d think that eventually I’d adapt but who I am tends to fight against that. I have a few personality traits I’m not particularly proud of but they were born out of necessity and I’ve had years to perfect them. I’m hyper-vigilant and prone to over-analyzing. I also try to think of all the things that could go wrong so that I’m prepared when they do - which is a load of BS because that’s not how the world works but, tell my emotional side that. My hypervigilance and my “list all the things that could go wrong” superpowers have been on full throttle for the last four years, ever since mom moved here. I’ve learned to quiet them down but they’re always humming along in the background.

I understand what is happening to mom is out of my control. But it doesn’t stop me from wondering what’s next or when the next weird thing is going to happen. The behavior changes - the latest one,  I just can't wrap my head around. How do you forget to do something you’ve been doing without thinking for at least 76 years?? There isn’t an answer to any of it which is so frustrating. How cool would it be if I could just roll with the changes? (Hey there, REO Speedwagon) I know new things are going to pop up and my mom isn’t going to get better but I don’t know how to just shrug my shoulders, live in the moment, and move along. I don’t think it’s possible.

Nothing stays the same

No matter what fate chooses to play, there's nothing you can do about it anyway -                          Jackson Browne, For a Dancer

Mom has always written reminder notes to herself, they were all over her apartment when we moved her out. Because this is what she’s used to, she asks me to write down when I’ll be there next on the notebook by her phone. The notes are simple: “Melissa will be here on Thursday at 12:00 to pick you up for Thanksgiving” followed by my phone number. Or, “Melissa will be here on Wednesday at 1:00 to pick you up for your manicure/pedicure appointment. Bring flip flops”.

But for the past few months, she doesn’t remember to read the notes I leave and every time I show up it’s a “surprise”. This Thanksgiving she called me in the morning and said she needed to know “what’s going on” with a concerned tone to her voice. I told her I was going to be picking her up for Thanksgiving and asked if she still had the note I had left by the phone. She did, and she read it back to me. The thing is, before she called me, she had to look at the note to find my number; I just can’t understand the disconnect between her wondering what she’s going to be doing, looking at some words, and making her way to the bottom of the note for my number. I know there’s no “understanding” what’s happening to her, but that doesn’t stop me from trying to figure it out.

I know why she doesn’t “see” things like notes the way you or I would, I know she can’t help it, but it irritates the hell out of me sometimes. Every time she is “surprised” to see me I have to remind myself to not tell her that no, it isn’t a surprise, I wrote it down. Why continue to write down anything if she’s not going to read it?? I know the answer: it’s because, in some small way, that note by the phone is comforting to her even if the thought process to use the information on the note is broken. It still irks me even though I know the hows and the whys. Mother Theresa would be appalled.

Back to Thanksgiving. An hour after the first phone call, she called back which is normal for her; once she recognizes her schedule is going to be different she gets a little anxious. I explained again that I would be picking her up at noon, etc., and she said she was looking forward to it.

When I got to her place, I headed for the common area where she hangs out. I knew they were going to be serving lunch around that time so I expected her to be at her table with her friends. I was right, she was there - eating. And, when the aides saw me they all started saying things like, “look, Pat, there’s your daughter. We told you she’d be here”. She had obviously been concerned or feeling sad, although I’ve never not been there when I said I would be. I hugged her shoulders and she looked right through me - she had no idea who I was, even when I asked her if she’d like to come to my house for Thanksgiving. I think she sort of recognized me after I spoke, and the aides and her friends identifying me as her daughter probably helped her put it together.

We got to the house and I finished getting dinner ready. I poured her a glass of wine, we took a few pictures and then ate. She pushed the food around her plate, ate a couple of dinner rolls and waited for dessert. While we were eating, the kids decided to have a bit of fun with grandma and tell her that they weren’t the only children I had, there were more. Five more. I don’t know what got them started but Bill joined in and told her that he had other children as well, all over the world - most of them he hasn’t had a chance to meet yet. None of it is true, at least as far as I’m concerned, but she seemed tickled by the idea that she had a bunch of grandchildren. Then Leah or Logan told her that I had just had a baby but it wasn’t here, I laughed and said I gave it away because it was too loud. Mom’s answer to that was “Well, sweetie, you look really great for just having had a baby!”. I reminded her that I’m 52, a little past my baby hatching days, and she replied that I was holding up well. Mercy.

Some people may think it’s a little mean to tell stories like that to my mom but it seemed to entertain her and keep her engaged. My kids can ramp it up in no time and have everyone going in a good way - I think it was just what she needed. She was laughing and joining in and that’s way better than watching her push a spoon around waiting for ice cream. Besides, she’s not going to remember any of it anyway.

When she was done with dessert she said she was ready to go back to her room. I grabbed my purse and started heading for the garage and she asked where I was going. Um...to the car so that I can take you home? She got a confused look on her face and said, “I live here, don’t I?”. Ah, so this was new. I told her no, she had her own place not far from here and I pick her up and take her back. She still wasn’t getting it, I hadn’t seen her look that confused for a long time. I explained that once we got in the car and started driving she’d recognize what she was looking at. I don’t think she believed me but she got in the car anyhow.

We started driving and she started her usual chatter, remarking about the weather, asking how I was doing, how the kids were doing, did we have any trips planned, and how are the dogs. It’s a fairly tight script that she follows every time we’re together. I answered her like I always do but I did show her the pictures we had just taken of her and the kids and me. She asked when the pictures were taken. She had already forgotten and we were not even 10 minutes into the drive. She started running down the script again and I started answering her questions again but this time, I left out the pictures.

She seems to be doing well, she’s happy and doesn’t complain and she has friends who are always around her. The way her dementia affects me, however, seems to be changing. I know that there’s no recovery from this and I know that it’s only going to get worse; I’ve resigned myself to those facts. And I’m ok with her not recognizing me right away; I knew it was going to happen and it’s not going to get better. But lately when I’m going to see her, after I leave, and now pretty much all the time, there’s a new heaviness in how I feel. I’m trying to figure out just where it’s coming from in regards to mom because that’s what I do - I look for patterns in everything and try and put the pieces together in some way that makes sense to me. Once I do that, and the “thing” is figured out, I can put it on my mental shelf and move on.

But this is a whole different animal. There are no connections to be made, and even if something seems to fit one day, the next day or week it doesn’t. And it’s mildly unsettling - I think that’s the best way to describe it. I see the other “kids” of the residents and I recognize the look, I think we all have it. The half smile, the concerned and tired eyes, the yep, you’re going through this too and I get how you feel and it really sucks sometimes expression. So here we are, in our own special group. The membership dues to this exclusive group, though... man, they are a killer.

But, honestly

And tonight I thank the stars as I count my lucky scars for all the things you’ve given me -  The Foo Fighters But, Honestly from the album Echoes, Silence, Patience and Grace

I was thinking about some of the things that have happened since my dad died October 9, 1995. For me, the toughest thing is that it was sudden; I didn’t get a last chance to say goodbye and tell him I love him and what he meant to me. I know he knew, but just one more hour would have meant the world to me. The saddest thing is that he didn’t get to see his grandchildren grow up. I didn’t get to share with him just how wonderful these little beings are and how much like him his grandson is. And Leah - oh, he would have loved everything about her. He did see them and hold them and I’m forever grateful for that.

I remember seeing him the day of his funeral and it was so odd -  the long walk to his casket was otherworldly. I saw his hands first and felt my breath catch in my chest; the realness of it all struck me hard. But when I got to his side and put my hands over his, I could feel it wasn’t him anymore. Of course it was his body, but what made him HIM was without a doubt gone. And for some reason, I found that comforting.

My mom was only 56 when dad died, and she had never lived alone. I was really worried that she would fall apart but she did the opposite. She picked herself up and made sure she was with her friends as much as possible. I remember her telling me that she would only cry when she was alone; I know her friends would have understood if she cried in front of them but she said she didn’t know what their limit was on hearing her cry over dad so she wasn’t going to test it. To go out and be around other people and enjoy life as much as she could was the best thing she could do for herself. And that’s exactly what she did.

Five months after dad died, mom met a very nice man who had recently lost his wife. She had said that she didn’t want to get married again but this man was special and won her over quickly. I met him and he was indeed very special. He was kind, intelligent, and deeply in love with my mom. They became engaged and planned to go to Las Vegas to get married. I was happy for her; he let her redecorate his home the way she wanted and they were always going on little weekend trips. All the things she loved doing with a man she adored and who adored her right back.

The weekend before their trip to Las Vegas they were watching a movie at his home and he complained that he had a headache. The headache became so intensely painful that mom called for an ambulance. As the paramedics were loading him into the ambulance he looked at her and said “oh, Patty. I can’t believe this is happening.” He died of an aneurysm several days later. To see my mom go through this again within a year was heartbreaking. She never left his side and she was so brave. She handled his hospitalization, death, funeral, and the pain of losing him with an amazingly graceful strength.

She’s never been one to dwell on the bad things. In fact, what she called the best time of her life was just beginning. There were several more boyfriends to come and lots of trips to Mexico, Hawaii, and stateside. She went dancing every weekend, had more social activities than I could have handled, and she visited us in Oklahoma at Christmas and in the summer. Her health was good as far as I knew at the time. She did have a small stroke in the late 1990s, but she recovered within a week and was back to the life she loved.

I had tried to discuss with her several times how important it was for her to get her yearly mammogram, Pap smear, etc. but I was always met with resistance. Mom had a weird aversion to doctors -  she had health care through my dad’s military retirement but never used it. Instead, she went to a walk-in clinic and paid out of pocket for care and medication. Good thing she was rarely sick. I mentioned a colonoscopy once and the look of horror on her face told me what the answer was. The Pap smear thing was at least 5 years in the making. As she tells it, the doctor told her she was just fine and she didn’t need to come back anymore. I have my doubts on whether there ever was an appointment.

Her health was a huge deal to me, in part because she’s my mom and I didn’t want anything to happen to her. Another part of it was purely selfish. If she needed me to take care of her I could guarantee it was going to be a logistical nightmare for several reasons, one of them being distance. At this time my kids were small, they were 1 and 4 when my dad passed away, and I was a single parent most of the time because of Bill’s flying schedule. He was gone more than he was home since he flew for the FAA, the Air Force Reserves, and as a private contract pilot. Just thinking about having to go take care of her if something happened made my head spin.

She and I had a heated discussion about her health while I was driving her to the airport after one of her visits. She wasn’t feeling well and I told her to be sure to make an appointment with her doctor when she got home. She said all she needed to do was to get back to water aerobics and she’d be fine which exasperated the hell out of me. What kind of logic is that?? I told her that she needed to take better care of herself; one of these days something that started out small and easily taken care of would turn into a big deal all because she didn’t want to see a doctor. I said that she needed to start thinking about how this would affect me -  blah, blah, blah - and for all my talking the only thing I accomplished was that I made her angry. Very angry.

I felt horrible putting her on a plane right after having an argument, that was not how I wanted her visit to end. She got me back though. Later that night her boyfriend at the time called me and told me he had taken her to the hospital with chest pains - great, I knew exactly who was to blame for this little episode and it was me. She was fine, it turned out to be indigestion. Or orneriness. When I spoke to her the next day she asked me if I was happy now that she had seen a doctor. No, because that’s not what I meant, but I didn’t say it, I just let it go. I know when I’m defeated. From then on, we only talked about her health if she brought it up and she rarely ever did.

It's just another day

I’ve never minded solitude, for a writer it’s a natural condition, but caring for a dementia sufferer leads to a peculiar kind of loneliness - Laurie Graham

I’ve learned a lot about dementia in the last 3 years. I’ve learned a lot about myself, as well. I’ve never been very good at being patient and I had a tendency to get frustrated if I had to repeat myself more than twice. I say “had” because ever since my mom has moved here, I’ve had a ton of practice in being patient and I can repeat myself an infinite amount of times and not bat an eye. Only with her, but that’s some movement in a positive direction.

I’ve learned how dementia has changed my mom and some of the more subtle changes are the things that have taken a while to sink in. For example; mom has a chair in her room that I love. I love it because I’m the one who picked it out for her when she moved here. She didn’t really have a comfortable chair in her apartment so I bought one that I knew she would like. I also got her a really nice hassock so she could put her feet up while she watched the flat screen TV I bought. The chair and hassock have been used a lot. They’ve been used as a magazine holder and a place to stack blankets. A stuffed toy koala that she pulled out of the trash - heaven help me, I just made sure it didn’t have anything nasty on it and let it go - sits on the chair along with a little red dog. She, however, has never sat in the chair. There have been times that I’ve been changing her sheets or straightening up her room and she will either want to sit on the bed or on a white wicker chair that was in her apartment in Illinois and may be older than I am. She stacks stuff on that, too but she recognizes it as a chair. The new one doesn’t exist in her world as something to sit on. And the TV? We’ve gone over the remote so many times. We’ve practiced turning it on and off. It may as well be invisible.

I realize now that unless I repeatedly introduce something new and she is able to take it with her, like new clothes or shoes, she doesn’t see it. All the things that are from her apartment, she uses in pretty much the same way as she always did. But new things are invisible, even though she may look at them, she doesn’t remember them so she doesn’t see them. When she started having issues with getting her days and nights mixed up I was thinking about buying her one of those digital clocks that you can hang on the wall that shows the weather, time, temperature, and if it’s day or night. But then it occurred to me that she wouldn’t see it - it would be one more thing that goes unused because she doesn’t remember she has it.

Today when I went to visit and make sure she got a shower, she didn’t recognize me at first. It’s so odd to have her look at me like I’m a stranger, I didn’t know what to do for a second. She finally recognized me but it was a little unsettling thinking that eventually she will always look at me like she doesn’t know me. I’ll have to introduce myself every time I’m there and then get on with our normal routine.

I was telling Bill about today and her shower antics that are always mind boggling and he said he was sorry it was so stressful. Shoot, I thought I was being funny. Then I thought about what he said for a second; it’s not stressful, it’s heavy. It’s like time slows down and has a weight to it while I’m there and it takes me a while to get back to feeling like myself after I leave her. Many days, I get in my car and I have to sit there for a second. Just sit and be quiet. It’s not sad, it’s not frustrating, it’s just depleting. I know it shows, even when I think I’m ok and I’m retelling the high points of my visit. I’ll just have to learn a few more things along the way about dementia. And myself.

Happy is good enough

You’re the hidden cost and the think that’s lost in everything I do - Jackson Browne, Sky Blue and Black

At the end of her stay in skilled nursing, mom made it out of the wheelchair and into a walker; not by her choice, the staff took the wheelchair away once she had used the walker successfully during her therapy. She was not happy with the walker and it wasn’t because she was afraid of falling, I think she just didn’t want to change. She’s always been that way. She pouted for a while and then forgot she had ever used a wheelchair. Silver lining.

Just before mom was to be discharged from skilled nursing, Mary asked to meet with me to go over mom’s living arrangements. She said that even though mom has dementia, she felt she would do better in the assisted living area rather than memory care. She had a valid point - she was afraid that if mom was placed back into memory care her behavior would start mirroring that of the other residents there. Unlike many of the others, mom was still able to participate in conversation, enjoyed being social, and didn’t need any assistance feeding or dressing herself. She also wasn’t one to wander, especially outside.

I thought assisted living was a great idea - she would have more freedom and she would have her own private apartment and restroom. I was a little worried about yet another change in such a short time span but there was no other downside to this move. It was less expensive, I could bring in more of her furniture and she would be able to sleep better without worrying about someone wandering into her room.

We moved her things over to assisted living, put up curtains and brought in her dresser and chest of drawers from the storage unit. I bought a few more lamps and a plant, hung some of her favorite pictures on the wall, and stocked her fridge with wine splits and snacks. Now to move her in. I was nervous that she would be anxious about her fourth move since March, that’s a lot for anyone. On the day she was discharged from skilled nursing, I walked her to her new home which was right next door. We went down the hall, past the salon and dining room, and then finally came to her apartment. I opened the door for her and she just stood there for a minute. Then she said, “I’ve been waiting a long time to come back home, I’m so glad to be here”. I could have explained that this was a new place but what was the point? She seemed happy and that was good enough.

Within the first week, she had made friends with a very nice man named Oscar who was living there temporarily. He made sure that she got to the dining room for meals and kept her company. He didn’t have dementia and I never did know what brought him to live there but eventually, the time came for him to leave. Mom was so sad and she couldn’t understand that he had to go back to his home. It was so hard to see her cry; he had been lively and kind and I really think  he helped mom preserve some of what dementia was taking away. He came back a few times to visit her, but one day he showed up after a couple of weeks and she no longer remembered who he was. He stopped coming after that.

The next friend she picked out was named Larry. He had dementia as well but at times it didn’t seem like his was advanced as mom’s even though I think it was. He also had a little dog which mom loved. He never remembered me; every time I was there, which was at least every other day,  I got to meet him for the first time again. Eventually Larry started to decline and it happened quickly. He began to wander and lose track of his dog and the time came for him to move to memory care. Mom didn’t understand why he had to go away, she thought that as long as she checked on him everything was ok, but it just wasn’t enough. The staff went above and beyond once more and walked mom over to visit Larry every day. Larry was ok for a while but it was becoming clear that he was not going to live much longer; he had become so frail. Mom was able to sit with him right before he died. To lose another friend so quickly seemed incredibly unfair and she missed him so much - but only for a little while.  Within weeks she forgot that she ever knew him.