Mom's Walks

Lately, all mom wants to do ALL DAY LONG is leave the house-usually to go "exercise" to her sister's house (Ellen). She paces all day long between her bedroom, computer and the front door. She's started doing something new: she puts her mouth to the door and intakes deep breaths. It sounds much like Lamaze breathing and looks like she is trying to suck in oxygen from outside, as if she can't breathe. It makes me so sad to see. I want to take her out walking but it's complicated. I feel like I've got a pretty good handle on things and I'm not intimidated in the least to take care of my mom in any way. I actually do like getting her out to walk. However, I have to consider safety and it's difficult to wrangle both my mom and my 4 year old when walking on busy streets to Ellen's house. I'm also concerned about whether or not mom can actually walk that far these days. It's only a mile, but she tires much quicker now.

I used to be able to drive beside mom while she walked. When she got tired, she hopped into my car and I drove her the rest of the way to Ellen's house. She stayed on the sidewalk and looked for cars before crossing the street. I received many funny looks as I crept behind her in my car, and even concerned neighbors asking if all was okay (understandably...I must have looked like a stalker!) But I was okay with it if it gave mom a chance to get some exercise. Unfortunately, my stalker-driving days came to an end a few weeks ago when I realized that it was no longer safe for mom to be out walking without someone directly by her side. I was stopped, in my car, on the corner of the street, waiting for mom to safely cross. A car was coming towards us, getting ready to turn the corner. Mom looked and saw the car and paused. As soon as the car started to turn, mom decided it was her turn to cross the street. Thankfully the car stopped for mom; it could've been disastrous. That was when I realized her walking-alone days were at an end.

So now the problem remains that mom wants to get out walking and is unable to. Many of our volunteer caregivers are older and wouldn't be able to keep up with her (or have to maneuver her if needed). She can't make it all the way to Ellen's anyway, so two people are needed to make this happen for her. The past two weeks, I've been able to go over on Sunday afternoon and take mom out to walk to Ellen's. I walk beside her while my husband stays with the kids at my dad's house and when mom gets tired, someone comes and picks us up in the car. Last week, she was able to walk the entire way to my sister's house. Yesterday, we started walking to Ellen's house but I called my dad when she started panting and pausing about half mile into our walk. Sunday will probably be our new walking day, since that is a day when the family is gathered together and I have help to follow us.

I was able capture a sweet moment with my mom at Ellen's house. Mom's new way of showing affection is shaking/holding hands with people. She doesn't hug or kiss anymore, but when she grabs your hand, you know it is a show of affection for her. Quite a few times now, mom has sat beside her sister on the couch, holding and swinging hands. It warms my heart to catch those rare moments where mom's heart is happy.

Mom's Crying Spells

I try to keep pretty positive on my posts, but sometimes this disease is so overwhelming. For the past week I've been in a funk again; it's such a rollercoaster ride. Part of my down mood comes from watching my mom's decline; it seems like every week there is something new that comes up in the progression of her disease. I've also taken on a little bit of freelance work, writing for a website that talks about dementia and caregiving. I just turned in my first assignment which took me nearly a week to gather my thoughts together for and write. While I am thankful for the opportunity to educate others, and also to be able to write down my thoughts and experiences throughout all of this, it can be difficult at times. Especially as I look back and reflect on all that has transpired over the past several years; it brings up many emotions-some good, and some not-so-good.

Even though I like to stay positive, I think it's important to share all sides of this journey, especially for readers who are going through this same thing. They need to know that they are not alone and that it's normal to feel down and discouraged at times. We are mourning the loss of someone we love who is still living, and that's a difficult thing to process.

One of mom's latest "things" that she is doing is crying. They aren't full on tears, but very often she will ramble about something and then her voice gets a little deep and crackly, her eyes gloss up and her lips quiver downward. She's done this a few times over the past year or so, but it is becoming very frequent now. I would say that at least once throughout each visit/encounter with mom, I witness one of these crying episodes. It breaks my heart. I want to break down and cry with her-and nearly did the first time it started happening consistently.

I was helping her blow dry her hair a couple of weeks ago when mom started mumbling something. I couldn't make out what she was trying to say but suddenly, out of nowhere, her eyes welled up, lips turned downward into a frown and her voice was cracking. There were tears in the corner of her eyes and I was a little caught off guard.

"What's wrong mom? What's the matter?" I asked her.

Of course she didn't respond to my questioning, but she continued crying about something. I turned off the blow dryer, looked into her eyes and patted her back, reassuring her that "it's okay". I could've cried myself, although I'm not much of a crier. My heart hurts every time she does this. Much of the time I don't understand what she's saying and I have no idea what she is thinking that is making her feel emotional. Is she scared? Is she confused at what is happening to her? Is she sad? I feel so helpless. I wish I could give her the comfort that she always gave to me.

My sister posted a little sentiment today about our experience over the weekend. I was going to blog about it, but then she wrote it, so I'm just going to paste here what she wrote:

"Sunday afternoon, my sister Cassandra walked with my mom over to my house. As soon as she walked in, my mom began asking, "Jeremy, Dominic, Raelynn?" I tried to explain that the kids were not there, but she continued to wander the first floor of the house looking for them. Finally, she stopped in the kitchen and her eyes welled up with tears. In the entirety of my mom's illness, I have never seen this, as some of her earliest symptoms were apathy and no show of emotion. My sister and I rubbed her back and assured her the kids would be back shortly (I then called my dad, who was just getting to his house with my kids after church, to bring the kids over). My mom sat on the stairs in the meantime, and when she saw one of my cats, she pointed and asked, "What's that? What's that thing?" My sister told my mom that she used to like cats and then took my mom's hand and stroked the cat. When the kids walked in a couple of minutes later and came and hugged my mom, her eyes again welled with tears as she again asked, "Jeremy, Dominic, Raelynn?" She visited for about 5-10 minutes before she was ready to go home.

I have been thinking about my mom a lot over the last couple of weeks, particularly how proud she would be of all of her grandchildren. When I became pregnant with Jeremy at 18 years old, it was not an ideal situation and my mom was naturally worried; however, once he was born, he was my mom's pride and joy. She loved being surrounded by her grandchildren; she loved babysitting, teaching, loving, and being a part of their activities. She shows little interest now; she usually pats them on the head and smiles and then continues whatever she is doing. No doubt that if she was herself, she would be the world's best grandma."

This disease is hard and the hardest parts are yet to come.

Celebrations

Last week we had a couple of celebrations of sorts.

First, we celebrated The DEANA Foundation's 1st birthday! It's hard to believe that just one short year ago, we gathered together with an idea in mind and had our first official foundation meeting. Exactly one year later, we awarded our first 2 caregiving grants! We've made a lot of progress over the past year; we still have a long way to go, but we are getting there inch by inch. Certainly, this was cause for celebration! And so we held our foundation's 1st birthday party at Farrell's Ice Cream Parlour last Thursday. We had a great turn out, a lot of which was family. Due to other events of the week (which I'll cover in a minute), we had a lot of family visiting in town. My dad's four sisters, several of my cousins and my twin brother's family all came into town and joined us for the celebration. Three of my mom's four siblings also made it to the celebration (the 4th sibling lives in Montana). We handed out buttons for every attendee to wear and it was just amazing to look around and see my mom's silhouette (our logo) being worn on all of our partygoers. I can't even express what it felt like to have that show of support- not just for the foundation, but in honor of our inspiration behind the foundation: my mom. Here are a few photos from that night, beginning with my mom's siblings and then some other photos of family and friends.

Sadly, the reason we had so much family in town was because my grandma (dad's mom) passed away a few weeks ago. On Friday, we celebrated her life with all of our family and friends. It is sad to see her go, but we had a lot of laughs (and some tears) at the great memories of grandma. For the first time in many years, all 16 of her grandchildren were together. It's sad that it takes death to bring people together, but good that we could all be here with each other. Family is everything.

Saturday was the Walk to End Alzheimer's. Because of all the family in town, we had a huge team this year!! It was so amazing to have everyone there in love and support of my mom. I know some people don't understand it (it doesn't change the situation with my mom), but walking together unites us and symbolizes our love and support for not just my mom, but for my dad as well. My dad and I are a lot alike in that family support means a lot to us (I suppose it's most accurate to say that I've inherited this value from my dad). I know that it meant the world to him to have all of his sisters there with him. Family is everything to him. I'm really glad that we were able to do this together and send the message to my dad loud and clear: he is not alone!

This year we also set up a foundation booth at the walk. It was great to meet new people and make new connections!

We were also invited back to sing The National Anthem again (my sister, Christina, friend, Mickelle, and myself). It's an honor to be asked to sing our country's anthem at an event so near and dear to me. The coolest thing happened this year: the MC looked down from the stage and saw the Team Dee Superheroes and thought they all looked so awesome that he invited the whole team up to stand with us while we sang The National Anthem! That was incredible!

As you can see, I have an amazing family. I tear up just thinking about how awesome they are. I couldn't have asked for a better way to spend all of these celebrations than with my family. They mean the world to me! This is what gets me through from one day to the next-knowing that all these people have my back and are there to help us get through this. Thank you all for being so incredible!

Reality

One of the things I like about writing this blog is making connections with other people who are traveling this road. I receive emails often and in a way it's comforting to know that I'm not alone.

About a year ago, a reader emailed me and entitled her email "Your mom is just like mine!" It turns out that her mom was also diagnosed with FTD, the semantic variant. Over our correspondences, we found so many striking similarities of our moms at that time. We've become friends on facebook and although we don't talk often, I often think about her and her mom (as I do with all of the people I've emailed with!) For some reason, I was just thinking of her the other day, in fact, and thought about how I should send her an email to check in and see how her mom was doing. Today, however, my question was answered when I saw her post on facebook that her mom had passed away over the weekend.

I feel an incredible sadness for what this family is going through. I have been feeling a bit melancholy today as this reminds me of what the future holds for my mom and my family. The reality is that there are no survivors of dementia. It is a disease that ravages a person day by day, inch by inch. I don't know how much time we have left with my mom. Some days it feels like she can live another 10 years like this because physically, she is in good health. But then I am reminded that this is a disease of the brain; when the brain dies, eventually the body will catch up. Even though I know what the future holds, I ask myself, am I ready for that? I don't know how to answer. On one hand, I believe in a life after this one, where my mom will be free of her disabilities and pain, a place where we will all be together again. Other days, I don't feel like I am ready to give her that physical good-bye.

Dementia is an emotional roller coaster. There are constantly ups and downs-or should I say downs and even more downs. There isn't really anything "up" about it but I try to be positive in this journey and enjoy the time that I do have left with my mom. Today, I feel sad. I hold back my tears for this friend and her family and for the fate that awaits my own family. I want to wrap my arms around my mom and hug her tight (even though she'll push me away!) because I'll never know when one day might be the last.

The Prodigal Blow Dryer

A month or two ago, mom's blow dryer died. For those of you who read regularly, you know of mom's attachment to her blow dryer. My dad thought about replacing it, but it really was for the best that it disappeared as it was becoming a problem. Consequently, mom complains daily about us "losing" her blow dryer. Part of her resistance to get into the shower and wash her hair is due to the fact that she has no blow dryer for her hair (and wet body).

For weeks now, I've been meaning to bring over my blow dryer on the days I shower her. By the time I get the kids off to school with everything they need, I forget to grab my blow dryer (and I head over to her house straight after drop off). I was talking to my dad about it and it turned out that he found a spare blow dryer. He tucked it away in the spare room for me to use this morning on mom's hair.

With how much mom's been missing her blow dryer, you would've thought that she'd be ecstatic to see me walk in the bathroom with a blow dryer in hand. It didn't go over exactly as I thought. To start with, during her shower she continued her mumbled complaints of having no blow dryer, despite me telling her, and even showing her, that I brought my blow dryer over. When she got out of the shower, she went about her usual routine of applying make up and brushing her hair and I turned the blow dryer on and attempted to brush-dry her hair while she was readying herself. She didn't seem to notice whatsoever that I had the blow dryer. In fact, when she was done with what she was doing, she turned and walked herself over to her bed, plopping down and mumbling again about how "he lost my blow dryer"!

For five minutes I waved the blow dryer in front of mom, telling her I brought my blow dryer and coaxing her back over to dry her hair. She stared back at me with no comprehension in her eyes. Then, suddenly, she jumped up, looked at the blow dryer for a second before grabbing it from my hand and attempted to dry her hair. After a couple quick minutes, she turned the blow dryer off so I quickly grabbed it, turned it back on and continued drying her hair for as long as she would let me.

At one point, mom's lips curled down and her eyes became watery as she mumbled something I couldn't understand. It looked as though she was going to cry. She's done this quite a few time recently and I'm not sure what to make of it but it appears that she is sad or upset about something.

"What's wrong mom? What's the matter?" I asked. I couldn't understand what she was saying but it hurt my heart to see her visibly upset over something, especially not knowing what I could do to help her.

In the end, we got her hair mostly dry, but to be honest I'm not really sure if she noticed the difference! I'm not sure if it will click over time or if she will forever mourn the loss of her blow dryer.