Absorbing the Stuff

My stuff plus her stuff equals... a lot of stuff!

Before moving in with me, my parents had moved to assisted living. So, they had downsized once. I mistakenly thought that meant mom's things would easily fit into my three-bedroom home easily.

Over the last two years, I'd worked hard at simplifying my life and my home, never dreaming my mother would end up living with me. Divorced after 31-years of marriage, many of the boxes of memories remained unopened for the first two years. It took me some time to be in a place emotionally to go through things. But when I finally started, it was energizing. Then I opened up each cupboard, closet, and drawer - choosing to keep only things I truly loved. Slowly, I'd gone through glassware, kitchen things, bedding, knickknacks, furniture, and such. I felt so accomplished when I watched the truck taking away my things. I felt even better when I looked inside and discovered I had space; I mean EXTRA space! That was a whole new thing!

I hadn't tackled every single thing in my house, but a good amount of it. And that felt good! Then my mom moved in. She was moving from assisted living, six months after Daddy passed away.Before they moved together in November, 2017, we'd realized it wouldn't be best to move all of their things to the home. So, I moved boxes of memorabilia, photo albums, framed photos, artwork, and other things sentimental and valuable to my family. So, the space I'd made in my home quickly absorbed those things; the spaces I'd made were filled. And that was before mom even moved in.

When mom moved in, I really didn't worry too much about fitting her things in my house. I thought about the big things; Daddy's recliner, mom's love seat, her bedroom set.

I can get frustrated with all the "stuff" that seems to be everywhere. After all, I'd had my home cleaned out, pretty much. I had space, and now I don't. I'd made progress, felt accomplished but now it felt like I'd gone backwards. I'd just refilled the space with more stuff. It's just one of the practical things that you have to deal with when you move a parent into your home, I suppose.

I needed an attitude adjustment.

I needed a new way of looking at this.

Adopting the right attitude can convert a negative stress into a positive one. ---Hans Selye

So, after a quick adjustment to my attitude, here's what I'm thinking. What a blessing it is that I had already made space and prepared for my mom to move in with me - before ever dreaming that she would! What was I making space for anyway? The space in cupboards, closets and so forth didn't look like much. It was just emptiness.  But when my sweet mother, recently widowed, moved her things into that emptiness, the space became sacred. In reality it was the culmination of a year-plus of me processing through things and creating space that unbeknownst to me was always meant to be - for my mom.

~Karen

A Little Funny: Asparagus to the Rescue

I hate asparagus.

I know I'm an adult and I'm not supposed to say I hate my vegetables. But I hate asparagus. I think it's the weird texture. Or maybe it's the terrible taste. Or maybe it's the traumatic childhood memories...yep, that's probably it!

Asparagus is plentiful in eastern Washington state about this time each year. When I was growing up, my mom cooked it all the time because, you know - she was an adult - and adults love their green vegetables. That's the rule.

She tried to pass her love of that nasty thing onto me. She served it every night with whatever we had. Meatloaf and asparagus. Chicken and asparagus. Eggs and asparagus. Spaghetti and asparagus. Not a single green salad in sight!

Where was she getting this stuff?

A venture downstairs to the extra freezer held the answer. To my horror, it was filled with one-family-meal sized bags of frozen asparagus!

When we went on vacation - camping in our little trailer, dad barbecued hamburgers. Mom added a large forkful of asparagus next to it on our plates.

I became a master of hiding my asparagus. I did the whole "hide it in the napkin" and then throw it away trick. I stuck it in the flower vase a few times. And on that dreadful vacation... I slipped it into my hand, dropped my fork on the ground under the picnic table, and then promptly buried it in the sandy dirt beneath it.

Fast forward about 45 years. Mom went with a caregiver to the store and guess what she brought home? Asparagus. She was so very excited! I promised her I'd make it for her but by the time I got around to it, it had gone bad. I really didn't know it went bad that fast...really!

So, tonight she went over to my daughters, who also loves the stuff. When I went to pick mom up, she had a bowl that was almost empty. She informed me that my daughter had made her a bowlful of asparagus and it was soooo good! Mom oooh'd and awww'd over it while we were there, and then all the way home.

Tonight I got a message from my daughter. It said, 'I love cooking for grandma. Can she come over once a week so I can cook for her? It's so nice to cook for someone who appreciates my cooking. all I ever hear from Charlie (her 4-year old) is "That is gross" and "This is disgusting!"

So, yes, mom can go have dinner with them. And I hope to God that means I never have to lay eyes on a spear of asparagus again!

A girl can dream!

Who is a Caregiver?

Who is a caregiver?

The answer surprised me.

As my parents entered their 80's and then my dad his 90's, I was doing more and more things for them. They lived in their home. I lived in mine. It started slowly - so slowly that it there was no need to define it. They were my parents. So, when they didn't understand a bill they got in the mail - it was no big deal. I deciphered it for them and was on my way. We'd always been a small but close family. My children were blessed to have my mom and dad as their grandparents. They went to every ball game, every dance recital, every graduation; they were as involved as they could possibly be in our lives. Frequent holiday and celebration dinners, barbecues, movie nights - it was all just normal for us.

But now the kids were grown and living on their own. It was a new chapter for all of us. And in the midst of it all, I divorced after 31-years of marriage.

My parent's home, the one my father built and that I had grown up in - was the hub of our family. The place where our family foundation was laid. As they aged, it continued to be so. My mom always had fresh flowers on the antique dining table or the table at the end of the sofa. They were always beyond happy when I went over to visit, or just stopped by on my way home from the store. The tidy home welcomed each of us in the family - all generations.

The first bump in the road of our parent-child relationship came when mom began having vision issues. Eventually, she became legally blind and needed help with errands, printed mail, and the like. Then she lost 85% of her hearing, eventually getting a Cochlear Implant. Then Dad began to have symptoms of Post-traumatic Stress, and what I now believe was dementia. And finally, my mom was diagnosed with Congestive Heart Failure. But these things didn't happen suddenly or all at once. It was like a very slow train ride that you expect to take you one place, but it takes you someplace else. At first, the stress of this whole new journey wasn't perceptible to me at all. It was just helping my parents. But over time, even when those around me grew concerned about how much I was doing, I truly didn't see it as stressful.

But of course (I guess) - a time came when I just couldn't do it anymore.

From that first bump to the time I finally looked at the situation clearly - the word caregiver never once occurred to me. Caregivers were either people who are paid to take care of someone, or they live with someone to give that care. That was my definition. And I think it's the definition a lot of people have.

But as I searched for help online - the word that kept coming up was caregiving. And sites that focused on caregiving had the best help, the best resources, the best advice. So, instead of looking up "how to help someone with macular degeneration" or "how to help aging parents stay in their own home" - instead, I used the word "caregiving" to try and figure out how to navigate this new road. I remember thinking how great it was that I'd figured out where to look for information, even though I didn't belong to the exclusive group called, "caregivers."

One site that helped a lot was Caregiving.com. There, a nightly chat put me in touch with caregivers. I went in almost apologetically, not wanting to admit that no, I did not live with my parents. I actually had my own home, though I was spending less and less time there. But as I came back to the chat again and again, I realized that the people in the Caregiving chat were in a diverse set of circumstances. Some did live with their caree (a new word I learned). For some, their caree was in a care facility of some sort. Others did as I did, helping their caree to be able to stay in their own home - because of their frequent and intense help. And others were caring long-distance, while their caree was receiving in-person care from another relative or in a facility that was states away. When someone asked me, during the chat, who I cared for, I explained honestly that I did a lot for my parents but I wasn't a real caregiver. The response, unanimously - was this, "You are a caregiver."

*sound of screeching brakes*

Um...what? Are you sure?

As I returned to the chat and began to know other's stories, I easily considered what they were doing caregiving. But it was harder to consider myself a caregiver. Still, over the next several months, I didn't just accept it, I owned it.

I am a family caregiver!

Being able to embrace it was empowering.

It gave my mind and this new journey, a place to rest. It wasn't nebulous anymore. It had a name.

The chatroom is becoming something that I plan my day around. It's like knowing that a group of friends are coming by to support you every night at 6pm, only you don't have to clean the house for them, you don't have to get dressed or put on make-up. You can leave your bra right where you flung it when you got home. All you have to do is show up.

I can't begin to tell you how important the people in chat are to my life as a caregiver. They were instrumental in helping me make the best decision for my mom and for me. And now that Mom is living with me, I'm asking different questions; I'm searching for advice and meaning. The friends I've made on chat have been there through it all and always will be.

Isn't it strange? That someone like me and someone like them - are so linked and yet have never met and probably never will. And it's a two-way street. As much as I soak in, I also try to give. In all the talk about technology changing our society in a negative way, there are also bright lights - like chatting with new friends, people who have been there, and gleaning what I can from their experiences and love.

If you're caring for someone and this resonates with you at all, you are probably a caregiver. My advice? Don't isolate yourself. Don't believe that you're alone in this, or that there just aren't answers for your particular situation. Reach out in whatever way you can, whether it's your next door neighbor or an online support group. Because...

YOU ARE A CAREGIVER!

A Little Funny: Mom in heels

Background: my mom has never worn heels. She's legally blind and wears very practical shoes.

We were sitting on the front porch and my sister, Kat, had taken off her high heels. Mom was admiring them. Kat got up and strapped them onto mom's feet. We got a good laugh out of it. I picked up my phone and said, "I'm taking a picture. Let's send it to Suz (my sister) and Dani (my daughter) without saying anything and see which one notices you're wearing heels. 

We got a kick out of the thought. Mom giggled as she posed for the picture. I sent it off. Within minutes we got a response;

Suz: "Hahaha!"

Dani: "How does she walk in those?"

We laughed again. And laughter is a wonderful thing!

Making the Decision - part 2

As I began to picture my mom moving in with me, I imagined her living in my house, my spaces, my yard. I imagined the routines, the rhythms of my life weaving into hers.  I didn't know anyone who was in my position. And yet, the more I allowed the question, What if mom moved in with me?, space in my brain, the more I realized that I did know people who had been in my position. So, I chose three people to take to lunch with the intention of getting advice.

COUSIN
My cousin did not live with her parents in their last years, but she might as well have. She was there day after day, hour after hour; somehow holding down a job, plus seeing to their care - allowing them to stay in their own home, and then as they moved to a care facility. And she did so with grace and laughter.

Her advice when I worried that eventually, I might not be able to take care of mom. If she had a change in health, or I did, what then?

Advice: "Just do it until you can't." 

Those words were very helpful to me. They helped me to lighten up and realize that I can only do what I can do - and right now, I can do this.

FRIEND
My mother's friends daughter was a particularly difficult time when I spoke with her. She was worn out. She hadn't had a vacation with her husband since the caregiving began. She hadn't had a night off or even gone to dinner without her caree. She told me how hard it is to never get a break.

Advice: "Build in time for yourself right from the beginning."

Her words were a powerful reminder that having the compassion to do something like this isn't enough. I will need support too. That's something I hadn't seriously considered.

FRIEND
My high school friend cared for her mother, who had Alzheimer's Disease in her home for several years. She spoke of the funny times, the really, really hard times, and the times when suddenly the level of care her mother needed changed.

Advice: "There will be guilt."

After a frank discussion about guilt, I knew she was oh-so-right. Guilt is in my DNA. Along with worry, guilt drives a lot of what I do.  To be told that no matter what, there will be guilt, was freeing. She didn't say, "Whatever you do, don't feel guilty about it." Good thing because that would be impossible for me. But to simply accept that I will feel guilt - that was far more meaningful.

All three of the people I spoke with said they wouldn't take their caregiving years back for anything. Armed with the advice of three dear people, whose words I knew to be true, I made the decision. Mom would be moving in with me. I was excited at the prospect of starting this new life with and for her.

About six weeks later, she moved in.

Making the Decision - part 1

Making Decisions for People you Love

I thought that making decisions regarding my children were difficult; vaccinate or don't vaccinate, use medication or don't, private school or public, spend the night with the rowdy kid or don't. The list goes on and on.

I admit: I am a thinker. I am an over-thinker. I worry and fuss about decisions. Then I worry and fuss after the decision has been made. Did I make the right decision? Can it be revoked? Is it too late? What if this small decision is the tiny pebble that seems so insignificant but when we pan out, we can see that it's been dropped into a still, dark pond. Ripples are already in motion. What if that last ripple has devastating affect? 

Yes. That's really the way I think. (I'm trying to change or at least balance that.)

A Short Chronology

• My parents lived in the home my dad built for more than 60 years.
• As they got older, me and my sisters adapted; spending more and more time helping them.
• For three years, they had a caregiver come into the house every day for three hours.
• As the only one living in town, I finally hit the point where I just couldn't do it anymore. 
• In November, 2017 they moved to an assisted living facility. We fully expected they'd live for at least a few years there together (dad was 96, mom 88) before Dad (most likely) passed.
• Dad died two weeks later.
• Mom was now alone.

As we grieved our way through the funeral, the insurance companies, the AL facility, and a multitude of other things, mom lingered. We tried our best to fill her days with visits from us, and friends. After several weeks of grieving, we worked (in vain mostly) with the AL facility to get her involved in activities and the many events that took place at the facility. I thought mom would be happy there. I thought she'd eventually come out of her funk and enjoy living there. She stayed with me for three or four nights every other weekend. At first, I'd cry every time I dropped her back off. Soon, I cried when I picked her up too.

No matter when I visited her, mom was always in her room. The woman who rarely sat did nothing but sit. But what struck me was the look on her face - her reaction when I came through the door. There was always a thirsty look of anticipation; like she was sitting on a hill of sand in the middle of the desert - waiting, hoping someone would bring her a cup of water. 

My mother was waiting for someone to visit. She was lonely, legally blind, hard-of-hearing and waiting for someone to take her away from her misery. Other children of residents commiserated, "Oh, I know. It's so hard to leave them, isn't it?" This normalized it for me. Staff at the facility wondered aloud if she'd do better if I wasn't taking her out so often. 

A thought was niggling it's way into my consciousness. A question; What if I moved mom in with me? That's where the process of making a decision began.

A Little Funny: Polish

A short background: My mom is conservative.

I was painting my nails, when I turned the bottle over to read the name of the fingernail polish.

Me: Mom, the name of this polish is Limbo Bimbo. I don't know if that's good or bad.

Mom: Well, that's because all Bimbo's are Limber. 

And without another thought, she went back to what she was doing.

I'm Going to Have to Lie

I was raised in the Methodist Church. I was taught right from wrong. One of the things  on the list of "wrongs" was lying. If I told a lie, perhaps embellishing some point that I thought seemed entirely plausable, my mom would say, "Oh, Karen. That's a story." Her emphasis was on the word, "story" and she said it as if it was a bad word. I'd have to say that as an adult, I'm pretty darned honest. It's more habit than belief, I think. But don't tell Mom that.

My mom moved in a few weeks ago now and her routine is to sit on the back deck, communing with nature; the birds, trees, flowers, and veggie garden with her hands wrapped around a cup of coffee. She marvels every single day at all the birds in my yard. Despite her cochlear implant, she can distinguish the sounds of different birds and their various activities quite well.

So, a few days ago, I was sitting on the deck with her and we keep hearing this racket of bird noises. wings thrashing around, leaves falling down from the pergola above us. Mom has Macular Degeneration and can't tell what's happening. So she turns to me. "You can see better than I can. What's happening up there?"

I look up and the birds are mating. They're having sex right above our heads. It's a normal, natural part of nature, right? So, what did I do? I lied. I said they were gathering things for their nest.

That's Lie #1 and I'm sure there will be many more to come as my mom and I figure out how to live with each other, how to be a part of each other's lives in one home again.

Do you have a funny care-giving story to tell? Do tell.

~Karen

A Little Funny

As I write this blog, I realize that already, in my grand adventure into being an at-home family caregiver, there is humor. To me it's like this; food, water, shelter, air, love, humor. It's right up there with "air."

Have you ever been in a situation where you got the giggles when it was very inappropriate? I have. More than once. Here's one time I can remember clearly; I was working full-time as a teacher, raising a young child and pregnant with another. As if that wasn't enough, I was working on my master's degree. I went to class 4 nights a week after work for 5 hours. Luckily, I was young. But youth didn't shield me from exhaustion. I dragged myself to each class, a sack dinner, and a Pepsi in hand - if I'd had time to run home first.

One evening, the instructor introduced a guest speaker. She was a professor from Eastern Washington University. She'd driven three hours to speak that night. I sat at a table of my classmates. The speaker was talking about educational law. It was a subject that was of interest to me and I listened, taking notes. After our second short break, with only an hour left of the lecture, something happened. My classmate, Jenny sat next to me. The instructor said something (I don't remember what) and it was one of those things where there was a double meaning. The meaning she intended slipped past, while the unintended one made Jenny and I look at each other. At the same time, we were thinking the same thing. It was probably raunchy. I giggled a little. Jenny did too. We tried to stop it but each time we looked at each other, it got worse. Our stifled laughter burst. Did I mention that our table was directly in front of the professor?

The next 10 minutes were spent trying our best to be an adult. Trying to stop. Trying to not laugh. Of course, that just made it worse. Jenny passed me a note. "Bathroom?" it said. I looked up at her but she was already heading to the bathroom. I waited a few minutes and then followed her. As I went through the double doors, shutting them behind me, she was standing under the "restroom" sigh with a huge smile on her face. And that was it - we let it out - erupting into a ridiculously loud and over the top laughter. It took us several minutes before we could speak. And then a few minutes walking up and down the hall, before we returned to class.

As we rejoined our class, I tried to keep my eyes down. But when I did look up, I was getting glares from my classmates. I sat down and someone behind me said, "That was so rude!"

I had no excuse. Chalk it up to stress, exhaustion, too little sleep or too much caffeine. Whatever it was, I was not in control of it.

After class, I went directly up to the professor to apologize. She was kind and understanding. Or at least she pretended to be.

In care-giving, there are times that things are a little funny, or uproariously funny. It might seem out of balance, or insensitive, or even inappropriate. But humor gets us through. It's always been a sort of uncontrollable tool for me - a tool for coping with stress, or monotony or whatever. But what it really is is a way to relieve stress, a way to cope.

As I create this space, this blog, I don't want it to be a place that is full of information and devoid of real life. I don't want it to be all serious. Truth is - I can't be a care-giver without humor. So, I'm adding a feature called, "A Little Funny" where I'll post about things that strike me as funny. You can search for funny things (after the blog has been going a while) by clicking on the "A Little Funny" link.

Tune in tomorrow for my first "A Little Funny" post.

Ever laughed at a totally inappropriate time?

Do tell. ~Karen

The Cost of Caring

About four years ago my mother had an episode where she got dizzy and fell. The fall wasn't significant but it was clear something was wrong. She was 85 at the time but had been in excellent health despite her declining vision. In fact, when we'd go shopping; my mom, two sisters, and me - she would outlast us by a longshot. But now her energy was zapped, even at the beginning of the day. That little fall began a year-long search for the answer. It began with checking her ears. Mom has a cochlear implant, so at first, we wondered if something had gone wrong with it. After trips to doctors and multiple tests, the answer was finally found. My mom was in Congestive Heart Failure.

Next began the medications, the lifestyle changes, and trying to reduce the stress in her life. At the time, she was a full time caregiver of my dad who was 8 years older than her; an enormous gap at that age. After months of taking mom to the cardiologist, I had a heart-to-heart with him. I said the following;

This is not easy to talk about and I wouldn't be sharing it if I didn't think it was important. My mom is the eternal optimist. She is positive in negative situations. And when she comes in here, that's really all you know about her is what she shares, and what I do. But that's not the whole story. The truth is, my mom doesn't have an easy life. My dad suffers from PTSD (and dementia I now believe) and he takes everything out on her. He insists that he gets his way. He's belittling her, even making fun of her being blind. This is not my father. This is not who I was raised by. But it is who my mom is with day after day, rarely leaving his side. The level of stress she is under is huge.

I saw a lightbulb go off for Dr. Wong. He said, "I know what this is. I know what caused your mom's heart failure. Your mom has Broken Heart Syndrome or Takotsubo Syndrome." It is caused by ongoing stress that reaches a breaking point. The good news is that the outcome is often much better.  Though the cardiologist insisted that my mother and father be separated for her survival, that wasn't an option.  Thus began a new chapter in my life as a daughter. I now added trying to protect my mother, to keep her alive - while also caring for my father who was increasingly difficult.

Mom

My mom is an amazing person. She is kind, loving, and includes anyone and everyone in her caring. She's went to the same church for more than 60-years. She got up at 4am every morning to pray for the people on her list; friends, family, and people she'd never even met. She and my dad were married in 1950. They raised the three of us girls in the modest home my father built. She was a secretary for a team of engineers her entire working career.

In more recent years, as my father's mental state changed, and he became more limited in his ability to get out and do things, she adjusted. On the most difficult of days, which became closer and closer together, she found solace in her Lord and in her garden. She'd sit out on her small brick patio with a cup of black coffee, surrounded by pots of flowers and refresh and recharge.She slowly became more than my father's companion in life; she became his caregiver. But as this was happening, she was having health issues of her own. And that would change everything in ways we never imagined possible.

What's the longest marriage that has touched your life?

Do tell.

~Lavinia

The Truth Nobody Told Me

My father died in December, 2017. He was 96-years old. His death hit me like a ton of bricks. I know I should have been prepared but how does one prepare for the death of a parent anyway.

But here's what's on my heart; I did not get the Hollywood, Hallmark Channel death experience. Somehow, my rather intelligent brain did not compute that what I'd seen on TV wasn't real. And in fact, I will never get over the death journey my father's body embarked on. Daddy died of old age - something that doesn't happen much anymore. But his doctor saw him a week or so prior and told him, "Murray, I'm not saying that you want to die. But I am saying that's what your body is doing." I was devastated. We all were.

But what I wasn't mentally picturing is what death would really look like. I learned that it's painful. Body functions start shutting down. No longer craving food or water, the joints aren't lubricated anymore and that hurts like hell. The mind isn't clear any more. There's a blankness to the look on his face, occasionally he comes out of it. His last words to me were the day before he died. He said, "Hi, Sweetie," when I came in.

Sad? Of course it is. But it's also reality. My mother moving in with me is also reality. And if what I write can help someone see what the truth is, then I've accomplished what my heart's desire is - to share it all; the good, bad, and the ugly. That's the truth I want to share with you (and me). It's another truth nobody talks about. So, let's bring it out into the light.

What's your truth?

~Lavinia

What will I write about here?

Here, I'll write about the journey. And I solomnly vow to tell the truth, the whole truth, and nothing but the truth. No matter how icky, ugly, beautiful, sentimental, confusing, joyful, or depressing it is - I will tell it. It's all we have, right? The truth. But some truths are hidden because they're uncomfortable, or we have a desire to put on a certain armor in front of people. But that doesn't help anyone, does it? It doesn't help the keeper of the truth and it doesn't help the potential hear-er. So, I promise - what I share will be real and yes, will be the truth. It's all about the journey, not the destination - this is so very true of caregiving, don't you think?

Do tell.

~Lavinia

Why I'm Blogging

I'm blogging because I can; because it feels right. I'm writing about this journey because it's like taking a travel journal with you on a trip to write everything down in. That's who I am. Writing is how I learn from my experiences, and how I express myself. It's how I feel what I'm going through. It's good for me. And I like it. This is a grand new adventure. And I want to write about it. That's why I'm blogging.

Do you journal?

Do tell.

~Lavinia

Me

I am a middle-aged (Yikes!) woman who is not quite the age to get a senior discount, but who really, really deserves it. Shouldn't like 40 be middle age anyway? That's beside the point. I taught public school for many years. I have three grown children and a wonderful, talented, magnificent granddaughter who is school aged. I wrote a book about my dad. It was published in 2011. We were interviewed on NPR. He was 81 when he started talking about what he really did during the war.

My mom moved in with me nine days ago.

Who do you give care to?

Do tell.

~Lavinia

Welcome

Welcome to my little corner of the world.

A little about me. My mom moved in with me last Saturday. She is 89-years old, has limited vision, a cochlear implant, and is in Congestive Heart Failure. She is the light of my life and the most positive person you could meet.

Please come back to hear more.

Where are you coming from? Who do you care for?

Do tell.

~Lavinia