Wednesday, April 10, 2013

Going the Distance

Caring for an Alzheimer's patient is no joke. It's tiring, complicated, time consuming, joyful, and an emotional roller coaster, to say the least. Two daughters, living states apart, have found a way to share this amazing responsibility when caring for their mother. Being a successful, loving caregiver, daughter, and sister is beyond difficult, no matter the geographical distance. At the end of the day, through shared love and pain, it's brought them closer.

Molly lives in the same town as their mother (who is divorced and been living with Alzheimer's for almost a decade), and has taken the leading caregiver role. Morgan lives in North Carolina, performing a different type of supporting role from almost 700 miles away.

Molly, The Local Caregiver

Saying that my mother having Alzheimer's is a challenge is an understatement. It is a struggle every single day. Not most days, but every single day. At this advanced stage, she lives in a “locked-down” facility, so a lot of the every day tasks (getting her dressed, making sure she gets her medicine, cleaning her, feeding her, and every day activities) are taken care of by the wonderful staff. Morgan and I are blessed that we found a nice facility with loving staff members. They do a great job of keeping me informed of how she is doing and what she needs. Not so bad, you might think, the caregivers in the family are mostly off the hook, right? Wrong.

There is the “taking care of her affairs,” and then there is the ever-changing one-on-one relationship that I have with my mom. They may seem easy to differentiate, but in fact they aren't. The two criss-cross like a spider's web, and tug at your emotions even more.

I visit my mom about twice a week. I walk with her, comfort her when she gets sad, even dance with her on occasion. These visits are mainly confined to the facility. If she is taken outside for too long, she starts to get over-stimulated by the day-to-day activities that most people find normal.

When my mom lived in Assisted Living, my role as a caregiver was very different. I had to do her grocery shopping, and make and take her to all of her appointments. I had to constantly check her supplies to make sure she had enough of things. Just what you'd expect, right? And then there were the emotional expectations. I am still not sure if I put these expectations on myself, or if she put them on me. Maybe it was both of us. At this time, when she was much more lucid, she knew how many times a week I came and saw her. She knew if I hadn't called to check in. She knew if her memories were slipping away. And with that little bit of awareness came a great deal of guilt.

And boy, did I lay a thick pile of guilt on myself, every second of every day. Was I visiting her enough? Was I being patient enough? Was I seeing any signs of her declining? Were the stories she was telling me real or merely real to her? Did I take her out enough? Had I brought the kids over lately to see her? How long should I stay and talk with her? Which appointment did I have to take her to this week? Were her bills paid? I look back at those years, and I can feel the anxiety, sadness, and guilt sweep over me like a wave in the ocean.

Not only was I trying to deal with and understand that the mother I once knew was slipping away, but I had to keep it together enough to be responsible for her as well. I never felt like what I was doing was enough, that I was enough. To separate the caregiver roles from the relationship of mother/daughter was too immense at times. I cried all of the time. Then on top of taking care of her, I had my own family and own stressors to take care of. Was I ignoring my responsibilities at home and my own family in order to take care of my mom? I was climbing a mountain whose peak soared way past the clouds.

As her abilities declined, I kept thinking, “Well, now the facility can take care of that for me. It is one less thing that I have to worry about. Things will be easier now.” Guess what? It never is. I was holding onto things that I wasn't expected to be responsible for anymore, like doing her laundry, just to have something to control. Doing her laundry meant that I had to go see her twice a week. It was a way, even when I felt like someone would have to drag me in, that I knew I would continue to go see her.

Because it is not always easy to go see her. That may sound cruel, but it is true. It is mentally exhausting. I know that I have to be on point when I go see her. I have to help make sense of her confusing stories. I have to accept the realities in her world that don't make sense to me. I have to meet and greet people that only she can see. I have to simply accept her exactly how she is at the moment. I always make it out the door fine. Whether I make it to my car or home without crying, it all depends. If not today, it will be soon. That I know.

Others that don't know, that aren't caregivers, have no idea how much we do every day. I often describe taking care of my mom like having a part-time job, and I have a lot of help. There is constant paperwork—medical, insurance, psychological, legal, mail, bills. There are constant caregiver meetings to discuss her condition, what medications she is on, and her behavior. And the phone calls.

Just as I think, “Wow, things are pretty good. She is doing well. She must have plateaued for a while.” Boom, it hits me. The phone rings, I look at the phone number, and instantly panic and dread creep over me. Sometimes they are asking my permission to give my mom something simple, like a painkiller. But more often than not, they have called because of her behavior or emotions—she won't stop crying, or she is mad and pushed someone. These things are not my mom, not the lady that I knew; these irrational behaviors are the Alzheimer's.

I was discussing with my sister that I often grieve as if our mom has died, and she said she feels the same. I look at pictures, and talk with my sister, feeling a “remember when” nostalgia. Each time the disease progresses, each time I see my mom, I am grieving the loss. The loss of her memories, her independence, and the ability to interact with her as the mother and me as the daughter. I grieve as she forgets names and people that were once the center of her life. I often wish that I could tell her my problems, have her put her arm around me as I lay my head on her shoulder. But that role is all mine now. It is my arm around her, comforting her frail little body. Letting her rest her head on my shoulder as she explains why her day has been hard.

We caregivers are tough, and we are strong because we have to be. Every day I struggle with my role. With all of the responsibility of being a caregiver melded with the emotions of losing a loved one, I often feel alone, sure that my husband, my sister, my dad, and my friends are tired of hearing about it. Tired of the stories, the tears. I know that there is nothing that they can do but listen. For this cruel disease takes our loved one—has taken our mother, a sister, a friend.

But, I want the happy ending as much as the next person. No matter the situation, I know that my sister and I have done our very best at each moment with what we were given. We have always had people surrounding us to love us and offer whatever encouraging word they can. But here's a tip: don't ask, “How is your mom doing?” The true answer is not what any one wants to hear. Instead, ask how I am doing with taking care of my mom. Ask how you can support me, my sister, or any other caregiver. Sometimes all it takes is the knowledge that someone else gets that this road is a long and treacherous one. That someone else would offer that arm and their own shoulder to bear some of the weight, even for just a moment.

Morgan, The Long-Distance Caregiver

Long-distance relationships: they are never easy. You probably have loved ones—partners, parents, siblings, cousins, etc.—in other parts of the country or world. You don't see each other much, but at least you have letters or e-mail, the phone, even video chat. You work hard to keep in touch as best you can, even if there are inevitable gaps of time in between. But what if you didn't have those technological crutches? What would your relationship be like? How would you communicate, nurture, and maintain that relationship if you couldn't write, see, or speak to someone?

Living across the country, it's been an increasingly difficult and creative process to keep in contact with and support my mom. I have two young children, a busy life, and a limited budget; flying or driving out to see her is a twice yearly thing, if I'm lucky. As her dementia got worse, so did our long-distance relationship.

When my mom's dementia first started to show itself, her ability to communicate deteriorated first. She had trouble reading, and then speaking. Soon e-mails or letters became impossible. Speaking on the phone was a challenge, a game of audible charades. She'd forget a simple word, and I'd chime in with, “does it fly? What color is it? Is it an animal, vegetable, or mineral?”, and the vocabulary guessing game would commence. Most days, my mom had a sense of humor about it, and we'd laugh and feel grateful to hear each other's loving voices. Other times, she'd break down in tears out of frustration, and I'd listen helplessly on the other side of the phone, hundreds of miles away. No way to hug her, stroke her back, and show her how much I love her. Just soothing words (I hoped), of “I love you,” and “I know it's frustrating, but I can't wait to see you soon.” Then I'd hang up the phone and burst into tears myself, frustrated that I couldn't help, that I was so far away that even a simple phone conversation was an epic fail.

Eventually, Mom lost her ability to make or receive calls, check voice mail, maintain a phone conversation (don't even get me started with our attempts at FaceTime), or even recognize what a phone is. Making a conscious decision to stop calling her was devastating for me. With all of the complications related to her declining health, phone conversations became quite painful for both of us, and she wouldn't even remember that I had called within minutes of hanging up.

Since Molly took on the responsibility of our mom's daily care, where did that leave me? Day after day, feeling useless, guilty, and selfish for living my own life, running my own errands, and not even picking up the phone to call my own mother. Although there are perfectly good reasons for it, and my sister is well aware and understanding about it, it makes me feel horrible. I miss my Mom. I miss being part of her family. I miss hearing her sweet voice and seeing her smile.

And then the financial issues cropped up. Despite the fact that Mom had always budgeted carefully and put away money for retirement according to a specific plan, nature screwed up that plan and threw it in the trash when she had to stop working 10-12 years earlier than expected.

Aha! A way I could help. I started sending little bits of money every month that I might have spent on my myself, helping her with her budget and some paperwork when I could, and buying her things she couldn't afford herself. I finally had a tangible purpose—I could provide funds to make her life a little easier, a little nicer. My loving husband was understanding about this, and believe me, it's a good thing he was, because it got worse.

When my mother finally had to enter assisted living care, the costs were astronomical. My husband and I decided to help. It put a huge strain on us, but we knew it was as much for my own emotional state as for my mom's quality of life. We couldn't stand by and do nothing, knowing we had the means to help family. Finally I had a concrete way to contribute. Every time that sliver of guilt would creep in after hearing my sister talk about a difficult day with my mother, I would remind myself that I had a role, too. It wasn't the same, but just as important for maintaining the quality of life we wanted for our mother in her last few lucid years. But it affected me, too. For those meals, her apartment, her safety, I was giving up something on my end. It started with eliminating things most would consider luxuries...Pilates classes, a date out with my husband, or new clothes. Then those sacrifices became bigger, like repairs that had to be done on the house and car.

Until it became too much. And all of a sudden, I felt the weight of the world on my shoulders. The financial costs and management of her life were taking over mine. The stress of my role as caregiver began bringing me to tears almost every day, not to mention the emotional stress of losing the mother I loved, piece by piece. Friends and relatives didn't get it...what could possibly be that bad when you aren't even in the same city? How could you even be that involved? Be thankful you don't have to do what your sister does!

But they didn't see my beautiful, young, vibrant mother stripped of her intelligence and spirit, her ability to use a fork and spoon, or the memories of her own children. That lovely lady you saw in the elevator going down to the dining hall? She's not a visitor or the daughter of a patient, she is a resident who just happens to be 20 years younger, ten times more physically fit, but incredibly less lucid. It gets incredibly hard to separate that shell you see now from the person you knew before.

Faced with a tough decision, I pictured my mother in her trendy clothes, hip haircut, and practically wrinkle-free face, living with people who could barely lift their heads, were bed ridden, or couldn't hold their bladder. It didn't make sense. Who was I to say that Mom had to live that way, because I couldn't afford to help her anymore? What did that say about my character? What did that say about what sort of daughter I was? I struggled with the decision (and the payments), much longer than I should have. Anyone who has had to make a similar decision about putting their parent into care for any reason will know what I'm talking about.

Finally, I called my sister and broke down. I couldn't do it anymore; it was making my quality of life and emotional state too difficult; the strain was too hard. Yes, I was choosing me over my mom; I'd chosen my mom for many years. I was proud and happy to do it, but it was time for a change. There, I said it. The decision was made, and I felt hideous in the moment. But over time, relieved. It was a scary step, but much needed.

In truth, it was time anyway. Mom couldn't hold her bladder either, among many other issues. She needed the extra care. And she moved on, never realizing there had been any other way. The day she moved into the nursing level room (imagine moving from a cute apartment of your own, decorated just the way you like, to a hospital room with a bedridden roommate), she immediately forgot she'd lived anywhere else, and was getting the care she needed, and more.

But where did that leave me as a caregiver, as a daughter? Back at square one again. The useless sister. The one who doesn't call, doesn't visit, and doesn't even contribute financially to the care of someone she loves. Every day I think about my mom and my sister, and what they are doing, and what I could be doing if I lived closer.

The truth of the matter is, I speak to my sister several times a week, and always about our mom. We discuss her care, what's going on with her, and jointly make decisions whenever we can, although realistically my sister takes the brunt of that. I hear what's going on in my mother's life, and I see pictures. (Mom has for years not known who I am, so she doesn't really “miss” me.)

I think about the Mom I used to know, the one whose voice chirped out over the phone lines when I called, excited to hear from me, and would gab for an hour. The Mom whose eyes lit up when she'd see me at the airport gate to pick her up for her yearly visit and want to head straight to the store to go bargain shopping. The Mom who made tollhouse chocolate chip cookies and spaghetti from the jar, because we loved it. The Mom who welcomed anyone and everyone into our home at the holidays, because feeling loved was more important than traditions. The Mom who cried with joy when I took her and my sister on a spontaneous trip to the beach when I knew she was getting bad, because it was her favorite place in the whole world.

I talk to my children about their grandmother, repeat anecdotes about her over and over until their roll their eyes. I serve up soup with her old soup tureen, wear her diamond and sapphire ring, read books to my children she read to me, and gaze at pictures of her above my desk as I type. She inspires so much of what I do, how I live, and how I love. I can't feel anything but happy about that. She may not recognize me anymore, nor I her, but she deserves the love and respect I can offer from afar.

And you know what? My dad sent us an incredible bottle of champagne to toast to my mom on that beach trip, because he's a gentleman who loves what his daughters do for their mother and the woman he too once knew. What a wonderful reminder of my other amazing parent, and how lucky my sister and I are to be part of a loving family. But I know tomorrow, something little will creep in, and I'll get worried and sad for my mom, or for my sister, and for myself. That's what Alzheimer's does to its people, and to those who care for them. It creeps in, and it steals. So when you see a caregiver, give her a hug and tell her she's doing a great job. Because they all are, no matter their role, and they need to hear it.

**Written by the dynamic duo, Morgan and Molly.


  1. Beautifully written. I am a caregiver and totally get it. Thank for sharing your story. This was very helpful to me.

  2. You are both Angels. GOd Bless you both and Prayers and good thoughts your way as you travel this most difficult road.

  3. I am commenting as the faraway daughter.

    Well done - so beautifully and honestly written, and congratulations to your Mom on a job well done - it seems she raised two lovely daughters.

    Thank you for sharing this wonderful post.

  4. Thank you for sharing. I am also a caregiver for my mother who has this terrible disease! This really hit home for me. God bless you and your family!

  5. God bless my two nieces for all they are doing--and all they are enduring--out of love for their mom. I cried through the whole article. I am so thankful for all the good memories of my big sister who was always so special to me.