There's always room for improvement

I usually feel like I’m doing a “good job” taking care of my mom - there isn’t as much second-guessing and panic as there was in the beginning (thank goodness), and as new issues show up I’m getting better at not overthinking and overreacting. I’m mostly ok with the realization that there is no fix, and no reason; it simply is.

All that being said, sometimes it surprises me how near the surface my emotions can be. I took mom to the dentist recently; she gets a cleaning every three months since her ability to care for her teeth has dropped off and she won’t let me do very much to help her. We’ve been doing our best to avoid any major interventions since the way mom experiences discomfort can be extreme and none of us wants to go down that path unless it’s absolutely necessary. During this visit, the hygienist noticed that a tooth seemed to be a little tender and mom was uncomfortable with it being touched.

I was asked about her brushing habits and about how much I was able to help which is an absolutely normal and valid question. The hygienist is a friend I’ve known for twenty years; she’s always kind and caring but for some reason, I felt tears start to well up. I’m doing the best I can for mom but any inkling that I might be failing her in some way makes me feel guilt I know shouldn’t be there. It’s hard to feel like you’re doing all you can but still falling short - even when it comes to brushing teeth. Even when it's 100% self-imposed.

Thankfully I have friends I can talk things out with, fairly decent reasoning skills, and a solid sense of humor. I’ve also been able to find some excellent resources that help me frame situations in a way I may not have thought of, change my attitude for the better (not all the time but, hey, I’m trying), and help me think about things that aren’t always comfortable to verbalize but oh-so-important.

Many of my resources are books - some I’ve found on my own and others were suggested or given to me. One of them, Stone Benches by Judith Ingalsbe, was recommended by a friend and I’ll be forever grateful - it’s that good and it’s made a huge difference in how I communicate with my mom. At first, I thought it was a little “sweet” for me, and the font just about drove me nuts but I kept reading and I’m so glad I did.

I will never be as wonderful a caretaker as Ms. Ingalsbe but her insights, stories, and information have made me a better daughter - I’m far less irritated by the little stuff, I know there is no point in reprimanding my mom if she’s being difficult; and, when she has a concern, for her it’s very real and that’s exactly how I treat it. Through this book, I have learned to say things that will calm her, point out something to distract her, or just reach over and hold her hand. It’s also made me realize that my feelings of isolation and frustration, of how mom’s dementia has changed me, and yes - the guilt, are normal. I’m not going to fall apart any time soon.

Your loved one is not capable of changing. This leaves only one variable in the equation capable of changing, and that would be you. The simplest gestures mean so much to an individual who has lost so much control over their lives. When possible, create situations where they have some control. It is important to build our loved one’s self esteem. For all our loved ones are no longer able to do, there is still so much they can do. Each one is a unique, wonderful human being with impressive gifts and abilities all their own. - Judith Ingalsbe

Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler is another book that was recommended. Although some of the subject matter in Knocking on Heaven’s Door is difficult and, due to our culture,  can almost be described as taboo - it is real, incredibly moving, thought-provoking, and beautiful.

In short, the book takes a hard look at how the medical industry is failing at end of life care - not failing us by not doing enough; failing us by doing too much. In 2010, Ms. Butler wrote an article for the New York Times, What Broke My Father's Heart, which was a precursor to the book. The response she received surprised her, as she wasn’t quite sure how readers would react, and it made her realize that there are so many others who are going through their own version of struggle and self-doubt.  

Ms. Butler’s story is far less sweet than Ms. Ingalsbe’s. She had a very different relationship with her parents and she is brutally honest about them and herself. Her choices weren’t always perfect and some of the thoughts she shared were hard to read while others were from a place of deep love. But that is part of being human; we make mistakes, we hold on to past resentments, and we learn that relationships can change and grow into something different and often better. As for me, I’d love to have a couple shots at a “do-over” button - it would make 3 A.M a whole lot quieter in my head.

Knocking on Heaven’s Door made me take a hard look at what I would do if mom had a stroke or a heart attack; often, it seems as though the medical field has a habit of looking at a singular condition rather than the entire person. As in Ms. Butler’s dad’s case - he also had dementia - when is medical intervention too much? If I were told mom needed heart bypass surgery or a stent or a pacemaker I’d really have to give it some thought. Before reading this book I most likely would go along with what a doctor recommended - most of us are conditioned to do just that. However, we don’t have to - we don’t have to agree to a procedure, or being moved to ICU, or another type of intervention.

If there ever comes a time when I have to make a serious decision about mom's care, I hope I can be brave enough to do what’s right for mom and her needs; however, you never really know what you’ll do until you’re knee deep in it just trying to find the right way out.

“As you move through this life and this world you change things slightly, you leave marks behind, however small. And in return, life — and travel — leaves marks on you. Most of the time, those marks — on your body or on your heart — are beautiful. Often, though, they hurt. - Anthony Bourdain

Changing locations

When mom fell and was diagnosed with dementia four years ago we knew the time had come to move her from Illinois to Oklahoma. We didn’t have a whole lot of lead time - we had known we would have to make decisions somewhere down the line but mom’s injury and diagnosis put us in the express lane. Not only was working between two states a nightmare; in addition, I had no idea what I was doing. I got lucky and found a wonderful place for her - she and I are very happy with our decision but there are so many things I wish I would have known.

For those of you who have found themselves in a caregiving situation or are just getting started and exploring what options are available, I thought I’d share what I and others I’ve spoken with have learned along the way.

First, I thought I’d gather up a few websites:                                                

A good place to start is your local Area Agency on Aging. From their homepage you can choose your state and gain access to:

• Available services in your area

• Mobility assistance programs, meal plans & housing

• Assistance in gaining access to services

• Individual counseling, support groups, and caregiver training

• Respite care

• Supplemental services, on a limited basis

AARP's Caregiving Basics is also a great place to start and you don’t have to be a member to access the information. They point out a number of important tips such as: don’t sign on the day of your visit, bring home brochures and pricing so that you can go over the information with other family members, and consider reviewing the contract with your financial advisor and attorney. There’s also a link to local resources and solutions - all you have to do is enter your zip code. Also included in the site is a Legal Checklist for Caregivers which can help you make sure you’ve got the important things covered.

Another helpful site, Samada, was recently brought to my attention. It’s easy to navigate as well as being an additional source to explore your options. There’s a page for care and housing options as well as an extremely helpful guide that explains the different ways to pay for long-term care including Medicare, Medicaid, Health Savings Accounts, and long-term care insurance to name a few. In the "money" section there’s an article that explains how to spend down assets to qualify for Medicaid along with helpful links throughout.

Now, here’s a little first (and second) hand experience:

Once you’ve gotten a preliminary handle on things, then this is where the collective wisdom of others comes in handy. Why reinvent the wheel when you don’t have to? Those of us in this situation know what it feels like and we have loved and appreciated any guidance given to us. For that very reason, we happily pass along what we’ve learned.

If you’ve already decided on assisted living, memory care, or an independent living facility what are some of the things you should look for? One of the most important sources of information for me was the residents themselves - do they look happy, are they clean, are they engaged? Does the staff treat them warmly and with kindness? Is there an aide or a staff member within your line of sight? Also, how are you received by the director or the person who is to show you around and explain pricing, care, etc.? You may be their 1000th potential client but, for you, this is your first time, it’s stressful, you have questions - lots of them -  and you should be treated with compassion and respect. As my friend commented about one of her visits to a retirement community, “if you aren’t listening to me I can assume you won’t be listening to her.” Exactly.

Make note of the general cleanliness of the facility, not just the model apartment or room they show you. Visit the restrooms, peek into a resident’s room if you can, and ask to see the kitchen. Not that you need to be reminded, but notice the smell. Accidents happen and that’s understandable but there should not be a pervasive smell of urine throughout the facility.

Once you’ve chosen and moved your mom/dad/spouse in, visit often and at different times of the day. Get to know the staff - they are your direct line to how your loved one is getting along - whether it’s what they’re eating; their sleeping habits; or, as in my case, how much they wander around in the middle of the night. It should go without saying but it’s worth a reminder: treat the staff with kindness and appreciation and learn their names - they have a tough job and the ones who stick it out and stay year after year are a special kind of awesome.

Introduce yourself to your parent’s friends within the facility - mom has several that look out for her and I love them for that. They make sure she’s in the dining room for meals, save her a place at bingo, and let her know when they see me walking down the hall. I really appreciate that last one - mom is given the heads up on who I am and I can skip telling her who I am. Another great benefit to getting to know their friends is you’ll gain a few more “grandparent” figures. I say “grandparent” because they’re always thrilled to see you, generous with hugs and compliments, and they’re concerned if your hands are cold. I’ve been offered blankets, sweaters, and gloves so many times - it’s so dear that they want to take care of me. No one can ever have too much of that.

A friend from Departure From Logic's Facebook group was gracious enough to share a few more tips: visit with the family members of the residents, eat a meal there, and join a local caregiver support group. Other than the obvious, a support group will provide you with a wealth of information - all the brochures and guided tours in the world won’t give you the insight that the people who are the recipients of the facility’s services will.

In addition, she had a few more ideas to keep in mind which I’ve summarised here:

Once you’ve narrowed down your search for a facility, if possible, have your parent participate in the decision. Also, you’ll want to keep the future in mind when choosing. If assisted living isn’t too far down the road, perhaps that’s where you should start - moving is difficult and stressful and can exacerbate certain health problems. *Melissa here - as a side note, the place that I chose for my mom has independent living, assisted living, memory care, and skilled nursing and, except for independent living, she’s used them all. Being able to maintain an ongoing relationship with the staff made it so much easier for her and me.

Be sure you know the procedure the facility uses to get your parent cared for if a medical issue arises. Do they call 911 first, or you? Are they going to put her in an ambulance and send her alone to the ER? This is important to know because many of our parents or loved ones are not able to navigate the ER by themselves and they need someone who knows them well to provide information, interpret their needs, and reassure them.

A question worth asking is under what circumstances might your parent be asked to leave? Dementia and Alzheimer’s affects everyone’s behavior a little differently and certain medical conditions can make taking care of your parent more difficult - what level of care requires more attention than the facility is equipped to provide?

Ensure you have everything in writing and take notes during meetings and discussions. It’s easy to forget small details, especially if the information is foreign to you; also, don’t be afraid to ask questions, be direct, and follow up.

Being an advocate for someone you love is a tough job and an important one. It’s hard to even know what questions to ask when something is so new and often emotionally charged - hopefully, this will give you a place to start and a little peace in knowing you aren’t alone.

“By three methods we may learn wisdom: First, by reflection, which is noblest; Second, by imitation, which is easiest; and third by experience, which is the bitterest.” - Confucius

What we leave behind

My parents’ stuff. Those three words have caused more non-movement on my part than I ever thought possible. Mostly because I don’t know what to do or where to start, and my motivation is hanging out in the zero place. Not because I don’t want to do the work, I do - I crave organization and having everything in its place. It’s because it seems so final and so cruel to reduce my mom’s belongings to the ones that are left in her small apartment.

My mom loved her furniture; she treasured every piece she picked out. She has an antique wash stand that she found in Big Spring, Texas sometime around 1966 - we had moved there when I was around one year old. She told me how she found it in an antique shop and since she couldn’t afford it outright, she put it on layaway for six months and went to the store once a week to oil and polish the wood. She found someone to cut a marble top for it and from the day it came home with her it had a prominent spot in the formal dining room in all the homes we lived in.

She also loved artwork. During the three years we lived in Germany, she brought home a print or an original drawing from every place we visited and we visited a lot. It was the one thing she was not going to go home without. The only place she couldn’t find one she liked was Amsterdam; I don’t remember the hunt too much but I’m pretty certain it wasn’t my dad’s favorite part. The hotel we were staying at had paper placemats that were made from a photograph of three windmills - I remember dad telling her that she should just take the placemat home and frame it. She did him one better; she brought the placemat home and hired an artist to do an oil painting of it and then purchased a lovely frame for it to sit in. Dad never made a suggestion like that again.

She adored collecting china, porcelain, figurines, and silver serving sets. She and my dad did a lot of entertaining in our homes so she had to be sure to have all the things, necessary and unnecessary.  We have at least three sets of individual crystal salt cellars with little crystal spoons. Cute and fancy but we had salt shakers so we didn’t really need them, right? Wrong.

Crystal and china were less expensive in Germany so she stocked up like a champ. The Officer’s Wives Club planned all kinds of trips and she was usually on them. One of the excursions was to what was then communist Czechoslovakia and she happened upon a porcelain factory that made beautiful pieces - white hand painted porcelain inlaid with emerald green glass. Come hell or high water she was bringing several home - I’m talking large fruit bowls and vases, not small trinkets. I remember how not thrilled dad was when he found out how much she had spent - but she loved them like they had tiny little breakable souls.  It wasn’t just the acquisition of these things that made her happy, it was the use of them and the care that she took with them that gave her so much pleasure.

I could tell a hundred stories about her things and when I go to the storage unit I can’t help but get a little lost in all the memories. There’s a passage from the book, Hourglass by Dani Shapiro, that brought tears to my eyes because it’s exactly how I feel about the finality of getting rid of what’s left:

It was easy to part with the contents of closets and drawers - the old sweaters, jeans, dresses, boots. The gold satin dress by the Italian designer, worn to a friend’s black-tie wedding ( they now have twins in the first grade), the scraped-to-shit pans, broken thermometers, stained dish towels. But to get rid of my mother’s sister’s china, for instance, is to cut loose the hopeful young woman who chose the pattern decorated with cheerful bursts of gold and silver confetti. To tape up that box and cart it off to Goodwill kills her all over again. Or perhaps this is sentimental and foolish. She’s dead…

One of my best friends sent me an article last year when I was lamenting the existence of the storage unit (it’s been a process, a really long one). It’s one of those things you read and remark, “well, hell”. The article is called, Sorry, Nobody Wants Your Parents' Stuff. Pretty straightforward, isn’t it? It's a good one and it includes some helpful links and great tips. It’s definitely worth a read if you’re in the same pickle I’m in.

I’ve already brought home the things that mean the most to me and now that my daughter has taken the leap into home-ownership there are a few things I know she would like. Most of the furniture has been donated or given to someone dear to me who needed it but there is still a lot. In addition to the “things” there are the photographs, probably thousands. I can’t throw those away, not yet.

I don’t need stuff to remind me; all the important things are in my memory, right where they belong. But I know what these things meant to my mom so it’s one more big leap that’s going to need an extra gathering of strength from me. 

First things first. What do I do now?

When we first hear the diagnosis of Alzheimer’s, dementia, or any other chronic disability, it’s overwhelming and, for most of us, uncharted waters. I’ve created a list of what I’ve learned and what others have shared. Collective wisdom is a powerful tool.

First, let’s get this part out of the way: 

Depression and anxiety are common in those who are newly diagnosed - bring this up with her doctor so she can be treated if needed.

Also, no surprise here, depression and anxiety are common in caregivers as well. Keep an open mind and speak to your doctor sooner rather than later; there is no shame in asking for help - it’s one of the bravest things you can do. The closest thing I can think of to form an analogy for how this feels is watching a car accident unfold in excruciatingly slow motion. The anxiety is a slow build but can become overwhelming at times because you have an idea of how it ends but no idea how bad it’s going to get. You are needed and loved - put your care first on the list.

Seek counseling for her and you, if needed, individually or together. A sympathetic and objective ear can help with sorting out feelings of anger, frustration, and fear.

Here's a great place to start thanks to my friends, Kathy and Amy:

Take pictures of everything and keep them in their own photo file on your phone and cloud storage: a list of current prescriptions and dosage amounts, your parent’s/spouse’s SS card, her driver’s license, Medicare card, insurance cards, DNR (do not resuscitate) order, advanced directive, etc. While they’re still driving include pictures of them, their car, car tag, and anything that would help to locate them should they become lost. This is a “so easy, why didn’t I think about it” tip that can prove to be invaluable.

Now, let’s get down to business.

What services will she be needing?

*Housekeeping/shopping/meal prep

*Home health

*Companion care - drop in to assist with laundry, shopping list, prescriptions

*Transportation - compile a list of friends who can help or, if she’s comfortable, Uber, Lyft, or other transportation services

*Begin using her pharmacy’s or health insurance’s mail order service if available

Paperwork

*Update her will

*Create a list of accounts, car insurance, life insurance, homeowners/renters insurance

*Obtain passwords to accounts (this can be touchy - at the least have the list in a known safe place that can be accessed by you only when needed).

*Create a list of all monthly bills and subscriptions

*Update or obtain a living will

*Put assets into a trust

*Research power of attorney - if she’s willing to do this now, it will be in place when it’s needed

*Medical power of attorney - this will give you and chosen family members the right to make medical decisions

Prior to obtaining a power of attorney, designate a beneficiary or beneficiaries to establish a TOD (transfer on death) registration on all non-retirement accounts to avoid probate.

In addition, do not put your name on her accounts due to liability issues. For example - if she were involved in an accident where she was at fault, the injured party’s suit could include your assets as well. The same applies to you - her assets could be at risk if you are involved in a lawsuit. There are several other reasons why and you can take a quick look at them here: Never add your child's name to your bank account, here's why .

If there are siblings or other living relatives interested in being involved with care, establish who will take care of what preferably with input from your parent or spouse.

If it’s an option, start looking into memory care/assisted living now to avoid a scramble later. If your family member isn’t a “flight risk” consider assisted living to keep them as socially engaged as they can be for as long as they can be.

If you’ll be going to doctor appointments with her (someone should accompany her), discuss what questions you and she would like to ask the doctor beforehand; you’ll want to make sure she feels included in the discussion. Direct the questions to her for as long as you can and, if and when needed, answer for her in a way that includes her even if it’s just reaching for her hand as you answer.

Keep a notebook dedicated to writing down what the doctor says and suggests and be sure to include the date of the visit and the particular health care provider and location. Keeping a current list of prescriptions here would be a good idea as well.

I’ve included a few links that I’ve found helpful:  

A Caregiver's Guide: Financial Protection for Those With Alzheimer's - this is a helpful link that was sent to me from creditcards.com. It lists some great tips to help you keep your loved one’s identity and credit safe.

Healthcare.com's guide is in place to help you shop and compare thousands of healthcare plans including Medicare in an easy to understand, personalized platform . There are also dedicated state guides to help users find the best available options in their area.

David Solie's blog. There are many parts that can be a huge help. From the menu on the right side, you may find the caregiver mind maps helpful.

National Association of Area Agencies on Aging

AARP's Caregiving Careguides

Alzheimer's Association

Reality bites

The reality of what I and others like me are going through with our parents (dementia or not) is far different from what a lot of the information, blogs, articles on caregiving, and support groups (ugh - no) are putting out there. I would never say it’s all negative and I would never say that what’s floating around out there is a bunch of guilt-inducing, anxiety increasing crap. However, for me, a lot of it is just flat out unrealistic.

I’ve learned a few things from some solid resources I’ve found. I’ve learned how to make mom comfortable and how to communicate with her. I’ve also learned how to answer the repeated questions in ways that don’t make her anxious. I’ve learned that the odd behaviors that seem to come out of nowhere and serve no purpose are not worth questioning; I just pick up the pieces and move on.

That’s all fine and good as far as how she feels, but what about me? What about the caregiver side of the fence?

We work so hard to keep our parents happy so, in my mind, I imagine their side of the fence is lovely; freshly painted white pickets, a well-manicured bright green lawn, and carefully tended flower beds. Everything is neat and in its place and if something needs to be fixed, it’s done right away.

Our side of the fence is a little different. The paint is peeling on some parts - other parts need to be replaced but, if it can hold out a few more days (weeks), we’ll get around to it. The lawn has a few brown patches and a few weeds; however, the weeds look like grass from the curb so good enough. Thank goodness for automatic sprinkler systems or the whole thing may as well be rocks and a lonely cactus or two.

I’ve struggled with putting this part of my life out there because, frankly, I don’t want to come across as frustrated or unhappy because I’m not. Not all the time. But, if I withhold the ugly parts and only share my more benign struggles, then what’s the point in all this? And, if someone puts a not so nice label on me - well, that’s their perception and there’s not much I can do about it. I certainly wouldn’t get into a sparring match to defend myself; I’m not here to change someone’s mind about what’s right and what’s wrong in this endeavor. But, if I’m honest about what I’m going through and it helps someone feel a little better about themselves and their thoughts, I’ve done what I wanted to do. We need to know we aren’t all alone.

I visit mom throughout the week and every Sunday, at 3 pm, I go to her place to gather up her laundry, change her sheets, straighten up her room, and make sure she takes a shower. I dread Sundays. I would much rather be spending time with my family, reading a book, paying bills, cleaning the house, or picking up dog poop. Really.

I’ll spare you the full description but I never imagined I’d have to give explicit instructions on every little step of taking a shower; from taking off her clothes to how to use a washcloth to helping her get dressed again. It is a running commentary that lasts at least thirty minutes and is interjected with her comments about the water being too hot or too cold and how cold it is when she is drying off. I do my best to keep the room warm and the door closed enough so that it holds some of the heat because I don’t want her to be uncomfortable. I also do all this because, only in my head, some of my responses to her statements are not very nice.

Fun fact: outside frustration doesn’t remain contained in its particular situation. It spills over into everything, no matter how hard I try to keep everything in its place.

I had one of my not so stellar moments this morning. My dog Amy is dying. She’s thirteen and has been having seizures and all the horrible things that go with that. She’s little so it’s easy to hold her when she needs me which is starting to be all the time. I asked my son to take care of her while I did some things around the house - at the rate I was going all my time was going to be spent on the floor with Amy and I have some things I need to get done. Anyhow, I walked by his room and he let me know that Amy had vomited. I jumped to the not unprecedented conclusion that he expected me to clean it up and I got pissed. Are you kidding me? I’ve got my mom and now Amy and I ask you to take care of her for thirty minutes and I still have to stop what I’m doing? I felt tears starting (my oh-so-adult reaction to being frustrated) and he looked at me and said, “No, I just wanted to let you know. I've got it, I’m cleaning it up”. I didn’t even say I was sorry right away. This isn't how I want to be.

There’s also the constant worry about money. I’m thankful mom has the means to live in assisted living but how long is that going to last? Her living expenses are just over $50,000 a year and that’s on the low end since other than dementia she’s healthy. Medical costs are barely a drop in the bucket. Maybe we’ll get lucky and her health will remain decent. Or not. If only I had a crystal ball - but, then again, maybe there are things I don't want to see. 

Now that I’ve mentioned cost, as a side note, let’s talk about having to take a crash course in Medicare - namely Part D. Medicare Part D is for prescription drug coverage and, if you get coverage, you need to sign up for it during the open enrollment period which is the three months before your 65th birthday or the three months after your 65th birthday. If you don’t, then you’ll be the proud recipient of permanent financial penalties.

Thankfully, Mom had TRICARE for life through my dad’s time in the military so she did not need to sign up for Medicare Part D. However, if she did NOT have TRICARE and did not sign up for Medicare Part D during her enrollment period, for every month she went without coverage she would have incurred a penalty. And, since mom was 75 at the time I took over, that would have totaled 120 months. Each month without coverage adds around 1% of the premium cost to the monthly premium. This penalty only expires upon death. If mom didn’t have TRICARE and she didn’t sign up for Medicare part D when she was supposed to she would have been paying, in addition to her premium, an extra $40.80 per month, which comes out to $489.60 per year, for the rest of her life. For a more in-depth, but still easy to read explanation about Part D penalties, go to AARP's Medicare Resource Center . For more information on how TRICARE and Medicare work together, this is a helpful and easy to understand resource compiled by TRICARE.

There are a lot of little everyday moments that stop me in my tracks. Lots of opportunities for me to be angry. If I acted out every time I felt some snarky comment bubbling up or said what I really thought at the moment, who would be the miserable one? Being gentle and kind isn't easy sometimes and giving up what you thought was free time really sucks. There's a balance in there somewhere and I'll keep trying to find it. 

Will I miss her when she dies? I’ve asked myself that question hundreds of times and the answer is always the same. I’ll miss the idea of her. I’ll miss having a living parent. But, will I miss the existence that we have now? That answer is no. Of course I’ll cry, or at least I think I will. Maybe I’ve already mourned my mom and I don’t have any tears left. And really, who are the tears for? If I cry, it will probably be for me. For what I’ve lost and for what I’ve gone through. It’s tough to admit but it’s the truth.

A Caregiver's Guide: Financial Protection for Those With Alzheimer's - this is a great link with important tips to help you help protect your loved one’s credit and identity. Well worth a visit.

Healthcare.com's guide is in place to help you shop and compare thousands of healthcare plans including Medicare in an easy to understand, personalized platform . There are also dedicated state guides to help users find the best available options in their area.

*“Remember when the days were long and rolled beneath a deep blue sky. Didn’t have a care in the world with mommy and daddy standin’ by. But “happily ever after” fails and we’ve been poisoned by these fairy tales…”

*Henley, Don. “The End of the Innocence.” The End of the Innocence.

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.