Monday, June 27, 2016

All Good Things

They say that all good things must come to an end. This week we officially "put an end" to our church volunteers.

For the past 3 years, wonderful ladies from our church have been volunteering their time to come over and sit with mom. When mom and dad's ward saw the need, they filled it. Every Sunday, the "compassionate service leader" passed around a sign up sheet in the women's auxiliary (called the "Relief Society") and women from church signed up for two 4 hour shifts throughout the week. Additionally, if we were ever in a jam, we knew we could count on them to help us out. This was such a huge relief for us, especially in the beginning when were first discovering that Mom needed some extra supervision to keep her safe at home. It was a huge relief and stress off my back (as the caregiver coordinator) to know that there were those two periods of time that I never had to worry about. I knew that they would always pull through for us.

About 6 months ago, our wards changed and Mom and Dad were merged into my ward (our church operates in boundaries, much like a school district system). This meant a new coordinator in Relief Society and a different group of women. While the ladies in the other ward had come to love Mom and looked forward to their service with her, this new group wasn't as familiar with our routine and need, so it's been more of a struggle to get people to sign up (or show up when they do sign up). I don't fault or blame anyone, it is what it is and it may be a lot to ask people to sign up for. Dad and I have been discussing the phasing out of volunteers and knew that it wouldn't last forever.

As expected with this disease, Mom is advancing in progression. In some ways it is easier (she spends a lot of time in bed) but in some ways it is much harder, especially now that she is diapers full time. We've been very fortunate to have no issues on our volunteers' watch, but I know that we have just been biding our time. It will inevitably happen that Mom has a big mess while a volunteer is with her, and I wouldn't expect them to have to clean up that mess.

Taking all of these factors into account, we have officially called off our church volunteers. It is bittersweet. I have come to love many of these women who have so selflessly and compassionately loved and served my family. I know that many of them have come to love and care for my mom as well (and they are certainly welcome to come visit!) On behalf of my family, I want to give our sincere gratitude and thanks to all of the women over the past few years who have stepped up and helped to ease our burden. We could not have done this without you! We love you and will forever remember the great service you gave to us in our time of need. I don't know that I can ever repay each individual back, but I hope to repay it back by giving others service in their time of need. Love, service and compassion is what makes the world go round!

Saturday, June 11, 2016

Crazy Town

Dementia makes you crazy.

I'm not talking about the person diagnosed with the disease; I'm talking about the caregiver. I'm talking about myself. If there's a sane caregiver out there, I'd like to meet them. Or maybe not, because then I'd feel even worse.

Lately I feel like my emotions are all over the place. Sometimes I feel strong, resolute. I am proactive with my work in the foundation, which gives me a focus and a purpose. I am patient with my mom and I get the job done without breaking. I try to focus on all of the good things I have going on in my life, things that bring me joy: my beautiful kids, my incredible husband, my amazing and supportive friends, my home-based sewing business (which doubles as my therapy time!).

But mostly, I just put on a brave face as I face the day, going to play dates, escorting the kids to their sporting events, attending church groups. I wear a smile on my face but inside, my heart is ripping into two. The truth is, my mom is always on my mind. Always. The sadness always lingers with me, like a black cloud. I worry and think about her when I'm away and miss her when I'm with her.

It's a complicated thing-to grieve for someone who is still living. I don't think there's any way to describe it to a person who has never experienced it. You grieve for the loss of the person that was once there, while still holding on to the physical being that remains. The grief is relentless and suffocating at times. I feel on edge; any unpleasant thing can bring me to tears. I am a ticking time bomb; one wrong move can set me off.

It's a continual rollercoaster of emotions; one day I'm up, the next I'm down.

Over the weekend, we received some unpleasant news that kind of sent me into a downward spiral. It would have been upsetting even if my life weren't plagued by dementia, but that dark, hovering raincloud (called dementia) met with this other passing, dark cloud and together they brewed a nasty storm. I stewed about this particular situation for days and I was left feeling, hurt, sad, and angry. Very angry. I'm not even saying my anger is justified, but when you're already slightly unbalanced it's as if the senses are heightened and what might start out as disappointment or sadness can easily fester into some other (stronger) emotion. For me, it was a lot of anger. Anger at the situation but probably mostly triggered by this disease. I'm angry that dementia has made me such a basket case. I'm angry for the strain it has put on some of my relationships, and at the people who I feel have let me down over the years. And most of all I am ANGRY that this disease struck my mom. I am angry for her, that she has been robbed of what is supposed to be the best years of her life. I am angry that my dad is losing the love of his life, for the pain and the helplessness he feels at watching her slowly fade away each and every day; for the helplessness I feel for not being able to fix it and make it better. I am angry that I've lost my mother, who was so much more than my mom; she was also my friend, my confidant and therapist, the one person that I could talk to without fear of judgment, who could give me advice or help me navigate my way through a problem, the one person who loved me and thought the world of me. I am angry that my children have lost their grandma and will never experience what I had growing up: the grandma to spend the night with, to bake cookies with, to have at every one of their music recitals or sports events or any important life event, to be their biggest cheerleader and to be their refuge from their "mean" parents. This is the kind of grandma I had and this is the kind of grandma that my mom wanted to be. And I'm ANGRY that was all taken away from us.

I don't usually post negativity on my blog; I like to keep it away and I don't want to sound like a whiny, sniveling baby. I'm not the first person to lose their mom at a young age and I'm certainly not the last. At the same time, I think it's only fair to my readers to be real. Somebody out there might be reading this while riding their own rollercoaster of emotions and I think it's important for them to know that they aren't alone in this. Because so often with this disease, we feel alone. I feel alone. You aren't crazy. Or maybe you are. But if you are, I'm right there with you!

Wednesday, June 8, 2016

Diaper Rash

Incontinence. I hate that word.

I've known from the beginning that incontinence is part of the disease. But four years ago, it was hard to imagine that it could actually happen to my mom. I thought maybe it would skip her, or only happen in the very last weeks of her life. In fact, I prayed that when the incontinent phase did hit full swing that the end would come quick. Nobody should have to suffer like that. My dad was optimistic that maybe this phase would pass over her altogether.

Mom's incontinence started in October, but it was sporadic. She might go a few weeks without a single accident and then have accidents two or three days in a row. It's easy to say to put a diaper on her, but much harder to do. Over the past couple of months, there have been a few times that we have had to put diapers on her because on that given day she was continually wetting herself. Once she was dry for a day or two, dad would put her back in regular underwear to preserve whatever amount of dignity was left, for as long as possible.

Unfortunately, over the past two week, the incontinence has been an everyday occurrence which has resulted in Mom's use of diapers on a daily basis. It breaks my heart, yet I've known it was coming. I've expected it. I think up until a couple of weeks ago, my dad was still hoping we could bypass the constant use of diapers. Putting the diapers on mom has eliminated a lot of mess and stress of cleaning up some pretty messy accidents, but there are downsides to diapers, aside from the obvious (losing one's dignity). Today, when I bathed mom, I discovered red bumps on her bottom. I couldn't but let out a little cry when I saw them.

"Oh mom, you poor thing," I said, as she stepped into the shower.

My maternal instincts set in and I felt pained and saddened when I saw her bottom. Poor dear must be miserable! Even though we try to stay on top of things and change her when she's wet, she's still developed a rash. I didn't have any desitin on hand to treat it (I'll be making a run to the pharmacy here in a bit!), but my dad did have cornstarch in his cupboard. Linda, our caregiver, suggested we try it and I remembered how I used to use cornstarch for my babies whenever they had a bad diaper rash. After I cleaned her up, I put some cornstarch in the diaper. Tonight my dad will try desitin (or whatever the pharmacist might recommend!!) Hopefully with persistent changing and cleansing, it'll clear up quickly.

But, I'm sure this is just the beginning. I've read the horror stories of others who have been there already: diaper rashes, bed sores, frequent UTI's...I suppose it's just the next step in the disease. But it sucks all the same :/