The Lonely Road

The other night, as my husband and I were laying in bed, I asked him the question:

"If I end up with dementia, would you take care of me or would you put me in a facility?"

There have been many thoughts and observations that led up to me asking him that question. I've been thinking about my mom a lot, reflecting on the last few years with her, wondering if I may inherit the same fate. Sometimes it feels like she is disappearing from the world; like she's the invisible woman that only I and my close family can see. Every now and then this discussion comes up with my dad as we reflect on those who have and have not been there for us in this journey.

The fact about dementia is that it is a very lonely disease. It isn't like other terminal illnesses where you are given an approximate amount of time to tie up your affairs and say your good-byes (and doing so while still in your right mind). Rather, it is unknown and most often very long and drawn out. In the beginning, people are shocked with the diagnosis; they express their love and condolences. But as time wears on, people (understandably) go about their lives and lose interest. The person with dementia is left alone to lose their mind and memories and abilities, day by lonely day.

We've been very fortunate to have many family and friends step up to comfort us and help ease to our burden throughout this journey. When Mom was initially diagnosed, there were many who expressed their condolences. We had offers of caregiving help-physically and even financially. But there's a huge difference between talk and action. With as many people who have reached out to us, there are equally as many who have rarely acknowledged the situation. People that my mom have worked with or served with at church; women, who at one time or another my mom has considered to be very close and dear friends, who have never once visited her since her diagnosis or even call to ask how she's doing (the same goes for my dad). There are family members as well who rarely, and some who never, stop by; family members who my mom was very close to, who never pick up the phone to call my dad and ask how she, or even how HE, is doing.

Life goes on, and it has to. Everyone has their own struggles to face in life. We understand that, but it's lonely all the same. And I would be lying if I didn't say that it's been hurtful that certain people haven't called or visited over the past 5 years. When we think of the life that Mom led, loving and serving and giving to others, it's sad to feel as if she's been forgotten about that easily; that maybe she didn't mean as much to people as they meant to her.

And maybe that's the not the way it really is. Maybe she's not really forgotten. Everyone handles grief differently. Sometimes people don't know what to say or how to react. Many may feel that she doesn't know them anyway, so there is little purpose in visiting (though the visits didn't happen even when she did still remember certain friends and family members). I've been very transparent in sharing our journey so maybe some of these people read my blog, unbeknownst to me, and feel that they already know what's going on. It's a hard situation all the way around.

A couple of years ago, I had somebody close to me go over a couple of times to sit with mom. She was friends with mom but I wouldn't say she was super close to her; she was much closer to me. After the second time, she told me, "I just can't handle seeing your mom like this, so I won't be going over anymore." That comment left me feeling so angry and hurt and alone. As hard as she claims it was for her, imagine what the pain must be for my dad to see his sweetheart decline every single day. Imagine how hard it is for my mom's children to watch this disease take her over and transform her into a stranger; how hard it is for us to change roles as we bathe her, change her, care for her; how hard it is for our kids to lose their grandma. I don't think this person intended to hurt my feelings at all. But since that day I can't recall a time she's asked how my mom is doing (though I occasionally volunteer information) and our relationship hasn't been the same. I feel abandoned. The avoidance from friends and family members does cause pain; not just to me, but to my dad as well.

I don't write this post to guilt or shame anyone, but rather to help people to understand what every dementia caregiver goes through. There is a common theme in many of my online support groups and that is the feeling of being alone, especially for the main caregiver (most often the spouse; in this situation, my dad). I share this for those who may wonder how you can help ease someone's burden; I give the following suggestions:

1. Don't avoid. This is our reality EVERY. SINGLE. DAY. Please don't pretend like it's not happening. Don't be afraid to ask how someone is doing-both the person affected and the caregiver. I always feel really grateful when people ask how my dad is doing because they recognize that this is just as much a struggle (if not more) for him than for my mom. You don't have to talk about it every single time you interact with the person, but don't be afraid to check in now and then. You aren't going to offend or upset a caregiver by talking about it!
2. Absolutely, do not say or offer anything that you don't mean! We've all heard it: "Let me know if there's anything I can do to help" and then when called upon for help, there's no response. I think that's worse than not saying or doing anything at all. It's happened to every caregiver out there. If you are serious about wanting to help, it's more helpful to give specific suggestions of what you can do. Sometimes you may not know what to do, and that's okay! Just don't offer anything if there is no intention of following through.
3. Give a phone call or a visit now and then. Even a note or a card in the mail can brighten up a caregiver's day. I know it seems intimidating, but it is appreciated and shows that you really care. I know it means a lot to my dad when people have dropped off treats or sent cards, or even called to check in on how they're both doing. Additionally, keep in mind that people who care for loved ones at home have little social outlets. It's nice, sometimes, to have interaction with other people. It can get really lonely.
4. Be mindful that caregiving is a 24/7 job. A lot of times, people will call and ask my dad for help with something, and he's not one to say no. He always makes time to help people. And truthfully I think sometimes he likes it because it gives him another outlet to interact with people. But...people may not give thought that in order for him to go out with them or to go over and help, that means he has to have a caregiver at home that he is paying (or one of us has to come over and sit with mom). It's nice for a caregiver to be able to get out; maybe help provide a way so that they can get out now and then!
5. Don't be afraid to recognize special days: birthdays, anniversaries, etc. I have heard from many caregivers who feel sad when people close to them fail to recognize these special days. Perhaps they feel it will upset them to say anything; not bringing it up doesn't make us forget about that day. Be mindful that holidays are going to feel especially sad and lonely, especially while still caregiving as the person is still here to care for. We are grieving for the loss of someone who is still alive and unless you've been through this, it's difficult to describe the many emotions that go with it.

Before I end this post, and because I don't want to come off as ungrateful, I want to be sure to recognize that we have been luckier than so many other caregivers out there. Though it hurts with the people who have seemingly deserted us, there are so many who have been and continue to be here for us and for that we are sincerely grateful. Sometimes it's even been strangers, or friends who never even knew my mom before dementia, who have shown us incredible support! Those people have truly lightened the load and I can't tell you how much we love you for being there for us.

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.

Waiting for the Storm to Pass

This summer marks 10 years that my hubby and I said our “I Do’s”. Every year, we take a weekend away somewhere-just the two of us-to celebrate our years together. Hitting the 10 year milestone this year, we felt it was only appropriate to do something big. For the past year, we’ve been brainstorming places to venture away. We both love the water and the sunshine and decided on a popular tourist destination that we haven’t yet been to: Cancun, Mexico.

For months we planned this trip. We researched the best sites to see and places to visit during our stay. We greatly anticipated our getaway and I prepared by shopping for swimsuits and daydreaming about the long hours I’d spend laying out on the beach, soaking up the sun with a good book in hand. For an entire week I would cast away my worries and the stress of everything else going on in my life and just enjoy being carefree and having uninterrupted time with my husband. This vacation was all about us;  it was about sun, fun and relaxation. And boy was I looking forward to it!

Late Friday night (a week ago) I kissed my kids good-bye and hopped on a plane with my other half to begin our week of Paradise. We arrived in Cancun Saturday afternoon…along with Andrea-a tropical storm.

We didn’t realize, at first, that a tropical storm was following us in. We’ve vacationed in the tropics before and have had storms come in, stay for a couple hours, and then head out. I figured this rain would be the same. So I wasn’t terribly concerned when we ventured out on a shuttle to the Sister Resort of where we were staying. While we were there, the rains came down harder and harder, so much that when we were ready to go back to our hotel, the shuttle driver refused to drive on the roads and told us we’d have to wait a couple hours or walk. We attempted to walk. Oh how foolish we were.

The roads were so flooded that we ended up taking off our shoes and wading in calf-deep water to find the public bus stop. We hopped on the bus and were SOAKED by the time we made it back to our hotel. We got a good laugh out of it. After all, the storm was sure to be over and in the morning I’d be laying on the beach sipping my (virgin) strawberry daiquiri and soaking up the sun.

Well, the morning came. But the sun did not. In fact, for the next 4 days it rained. It rained and it poured as Tropical Storm Andrea unleashed her fury on Cancun. At first, I decided that the rain was not going to hold me back from having fun. We booked our trip to see the Mayan Ruins of Tulum, followed by snorkeling at Xel Ha. But I have to admit, the rain really put a damper on everything. It was hard to relax and have fun with rain pounding down and blowing into my eyes. The wind, along with the rain, made it too cold to fully enjoy the experience in the water. There was supposed to be sunshine. I was supposed to be getting a suntan and taking naps in the hammocks. This was NOT how I envisioned my trip to be.

Still, we tried to have fun. We had to modify our original plans and we did have some fun. There were moments that the rain stopped and we were able to swim in the pool (under the gray clouds) or shop at the flea market. We took advantage of the hotel’s spa and got a couple’s massage and joined in the night life activities at the resort (all of which was indoors). But we also had many moments of despair as our plans were constantly changing and put on hold due to inclement weather. By Wednesday morning, the rain was so bad that I was sure a hurricane was coming. For the 2nd day in a row, our horseback riding trip had been cancelled as had most other trips because the storm was too debilitating to drive through. I laid in bed all morning, covers over my head as I cried about my ruined plans (and lack of sunshine!!!) We even debated throwing in the towel and coming home early. What was the point of staying through the storm?

That night was karaoke night in the hotel lounge. We walked down (through the rain) and met up with some other friends we had met the previous day at the pool. They asked if we had still planned on attempting the day trip we wanted to take to XPlor the following day.

“We just don’t see the sense in paying all that money to go just to be rained on,” Jeff explained.

“Yeah…we figured it was either be rained on at the hotel, or be rained on while doing something fun,” our new friend answered back.

I contemplated what she said. I looked outside to see that the rains had stopped and the trees were still. My brother, also known as “Weatherman Joe” (due to his obsession with tracking tropical storms), told me that by Thursday the storm should be making it’s way up to Florida. I wasn’t holding my breath, but I also knew that I couldn’t handle another depressing day in the hotel. And I was tired of cancelling trips!! Jeff and I briefly discussed the day trip and decided we’d take the chance and book XPlor for the next day. We had determined, by this point, that no hurricane was coming and the worst case scenario would be that we got rained on. Half of the day trip was swimming and rafting in caves anyway, so rain wouldn’t really make a difference. I decided that no matter the outcome, I was going to have a good attitude and make it a great day!

Thursday morning, for the first time since we had arrived (and our last full day in Cancun), we woke up to blue skies and the sun shining overhead. That put a huge smile on my face! We met our shuttle and journeyed to XPlor where we spent the day in sunshine with not a drop of rain! We ziplined, swam in caves, went on rafts through caves with stalactites and stalagmites and took a turn driving an all-terrain vehicle through caves and over bridges and mud. It was awesome. Had it rained, we still would have enjoyed the day because I told myself that were gonna have fun!! The sun was an added bonus!

  

I’ve thought about this vacation as a metaphor for my life. 10 years ago, I was on top of the world. I was madly in love, getting married and starting my new life. I had a perfect vision of what my life would be like. I had everything mapped out; I anticipated what was to come and daydreamed about what life would be like in the future. I never saw the storm coming. I never anticipated the heartbreaks that would come my way, the things I have had to go through over the past few years and even more recently, the past few months. I never imagined life to be this way and I have to admit, I wasn’t quite prepared for it. Tropical Storm Dementia has altered my course.

There have been times when I have resolved to stand strong and make the best of the situation. And there have been times when I have laid in my bed, covers over my head, and cried at the storm that was looming overhead. Last week was another reminder to me that when the storm comes, I need to buck up and make the best of it. Had I stayed in that hotel bed and continued feeling sorry for myself, I would have missed out on a fabulous day. There are moments now when I feel consumed with sadness. I admit that some days, it would be much easier to stay in bed than to face that dark cloud. But if I give up and let those feelings take over, I will miss out on making precious memories.

This morning I was sitting in my class at church when I saw my mom standing outside the open door of the room (we attend the same church building; but our services are at different times and our last hour of church overlaps their first hour of church…if that makes sense;) ). Mom knows exactly where to find me when she arrives and always likes to find me before she seats herself for her own service. She peered inside the room, saying “Cassandra? Is she here…Cassandra?”

I excused myself and went out to the hall to greet my mom. It warmed my heart to see her (after being a week away from her) and to see her smiling and genuinely happy to see me. My heart was filled with love for my mom and  I gave her a hug and told her that I had missed her. In that moment, I felt so grateful that my mom is still here with me. Although the person she once was is fading away, she is still here and she is teaching me great lessons of patience, service and unconditional love. I am trying my hardest, each day, to rise above the storm.