Tuesday, July 26, 2016

Everybody Needs a Little Time Away

I'm happy to report that we survived the week that Dad was on vacation without any major incidences!

I think that this trip was a big eye opener for my brother. He insisted that we didn't need caregivers while he was there; he was working from home on his computer for the week. I told him what we were dealing with, but until you are here to see it firsthand, I don't think you can really understand. I think he mostly just thought he needed to be there to make sure there wasn't a fire or big emergency; much has changed since the last time he was here. Needless to say, I had to call the caregivers back to come in and help for a couple of those days. Natalie and I spent a lot of the day there as well, but it's difficult to keep the kids cooped up in dad's house all day (there isn't much for them to do there), especially when Joe was trying to work, so we had to get them out of the house for at least a little bit each day. All in all, Mom was safe and taken care of and Dad was able to go and have a good time away from the stress and sadness of his daily life. I am really grateful that I had Joe and Natalie here for the week to help out, if for nothing else than for my emotional sanity!

After dad returned, I went home with Joe and Natalie for a week. We started this tradition a few years ago-to spend a week together at each of our houses every summer. It gives the kids time to bond and play and it gives Natalie and me the chance to sew, stay up late watching movies and just hang out! Usually I drive out there for a week and bring her and the kids back with me, and then Joe will drive out to spend a long weekend with us and take his family home. This year it worked differently and most of our time here was watching Mom, so I was really looking forward to our time in Arizona.

It was really refreshing to spend a week away. Although I was still on the phone every day handling some things with caregivers and Mom's doctor/nurse (post to come on that topic), I was able to refresh and spend time with my best friend. This has been a very difficult summer for me. With Mom's disease progression and having to do things I never imagined I'd have to do, having the kids home full-time and fighting with each other, and me deciding a few months earlier to go off of my anti-depressant (probably not the best decision I've made), I have been overwhelmed emotionally. I don't like talking about the fact that I had to go on anti-depressants a couple of years ago, but it is what it is. It's a sad reality for a large number of family caregivers. The truth is, I've been extremely emotional. It seems like everyday I am on the verge of tears and probably once a week I end up with a crying fit. I have felt stressed out, tired, discouraged, angry and lonely...to name just a few emotions. One close friend of mine remarked to me that my countenance has changed over the past few months. Although it's hard for me to hear that, she is right. Many days the despair and grief are almost too much to bear; it's hard to see the sunshine with the dark clouds looming overhead.

All this to say, I've really needed my best friend. My family likes to tease Natalie and me for being so outspoken on our BFF status. We like to have fun with it too (if they're gonna tease us, we're gonna annoy them!) and we've made BFF shirts and bought matching outfits and had photo shoots with it all. We might be a little crazy but that's okay, we have fun together and sometimes I just need to laugh. They can make fun of us all they want, but they don't really understand our relationship. The truth is, I feel like Natalie is the one person who really "gets" me. This isn't to say that my other friends aren't great; truly, I've been blessed in the friend department and I have a lot of great friends in my life who are there for me when I need them. And let's not forget to mention my husband; I'm really lucky he puts up with me. I just feel like Natalie and I get each other; we have a special connection. We've both been through hard losses, some of which we've gone through together, and we understand each other. I don't have to tell her how I'm feeling, she just knows. We both know what each other needs to brighten up the day and know that we are there for one another unconditionally. I don't have to tell her that the reason I am feeling edgy or moody or sad is because I am mourning my mom; she just knows. I know it sounds really corny, but if ever there were such a thing as friend soul-mates, we would be it! She loves me, flaws and all! And I feel the same about her. I am so blessed to have her in my life.

Coming home from Arizona was hard. Don't get me wrong-I was happy to be with my husband again, I missed him while we were gone. But now I miss my bff. In a perfect world, we'd be neighbors and we would see each other everyday. Now that I'm home, it's back to reality. I feel like I'm back to where I was before she came; alone in managing these complicated emotions of caring for my mom. :(

Thursday, July 7, 2016

A Little R&R

My brother is on his way into town. My dad is taking a much needed vacation with his sisters and cousin and will be gone for a week. My brother and his family are coming to stay and help out with Mom while he's gone.

Over the past couple of days, in preparation of his arrival, I was reflecting on how much Mom has changed in just 3 months, since Joe last saw her.

The most obvious change is that Mom is now in diapers full time; Joe knows about that. I've related the shower struggles and the ever-increasing loss of words and language.

But then there are the changes that we don't talk about daily. These are the changes that happen so gradually that it's hard to remember precisely when it started.

Mom no longer changes into pajamas at night. In fact, she no longer changes at all. She used to change her clothes if she didn't like my wardrobe selection for her; not anymore. She stays in the same clothes until someone changes her and requires full assistance to get them off and on.

Mom only has 3 names left in her vocabulary: Bud, Cassandra and Ellen. I don't know if she remembers who my sister is or any of the grandkids (I think she knows that they belong to me). But the only names and the only people she ever asks for is my dad, my aunt and myself. I think it's a little strange that she still remembers Ellen but not Claudia (her other sister). Claudia comes over weekly to sit with her; Ellen has been over twice over the past 4 years. I assume it has to do with her obsession to walk to Ellen's house. It is the one ritual that she has left and holds onto.

Mom doesn't put any make-up on anymore, not even blue eyebrows. She tries sometimes, but it's hard to put on lipstick when the lid is still on the tube. Every once in a while she might get a bottle/container open and she'll end up with eyeshadow or lipstick smeared across her whole face. Toothpaste seems to be her favorite choice of moisturizer.

I am with Mom nearly everyday, so the changes aren't as obvious to me. I wonder what it must be like to come and see her after being away for a few months. I am nervous for what lies ahead this week; worried if my brother can handle it all. But also, I'm so relieved that they will be here to help with Mom and to share responsibility with me. At least I know that we are all in this together!

Here's hoping that my dad has a restful, stress-free, fun week away! He sure deserves it! If you're reading this, Dad, don't worry-we've got this! Also, put away your phone and go have fun! ;)

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 :/

Thursday, May 19, 2016

The Shower Struggles

Since last fall, I have been going over to Mom's house 3 times a week to help her through the shower. This was a result of her going days without showering. My dad, of course, would help her get in a couple times a week, but at that time Mom was still on somewhat of a schedule; or, at least, she knew day from night. This presented a challenge because if Dad showered her when he got home from work at night, Mom became confused. Showers signaled morning time for her. Bathing her in the morning was difficult for Dad for a couple reasons: 1. Mom was often still asleep when he left and 2. It made him run late out the door. In trying to lift my dad's load, I volunteered to go over a few times a week to help her get through the shower.

In the beginning it was pretty simple. I would help her get undressed because she wouldn't voluntarily take off her clothes to hop in. Once in the shower, she was able to go wash her hair and her body on her own. Nevermind that she used 1/4 of the bottle of shampoo, conditioner and soap each time; she was getting the job done.

Over the course of the past 9 or 10 months, Mom's abilities to shower herself have decreased. At first it was just cutting out the conditioner, then forgetting to wet her hair before she poured the shampoo on top. All of these changes have forced me to get a little more involved with the showering process. My dad put on a detachable shower head to make the job a little easier.

Our latest routine is this:

I arrive at Mom's house after I drop the kids off to school. I get all of her clothes ready and laid out on her vanity where she can see them. She gets very anxious if she doesn't see clothes laid out for her. I change out all of her towels and washcloths in the bathroom. The towels have become an issue...for some reason Mom uses them to wipe herself now. It's gotten to the point where (just this week) we bought her separate washcloths to leave in there for the sole purpose of her wiping and we take all of her shower towels out now after we are finished with showering. I get her blow dryer ready and make sure everything is set to go; once she's in the shower, I can't leave her (I used to prep everything while she was in the shower). Only once everything is ready to go do I begin the strip down. I remove her mismatched earrings and adjustable "wedding" ring from her finger. She isn't too happy about that, especially because I think she knows what is to come once the jewelry comes off. I remove her shoes and socks, then the rest of her clothing, with no help from her. It's like removing clothing from a struggling toddler, only she is bigger than me. She will sometimes try to grab the clothes back from me or out of the hamper, so I have to be assertive and redirect her. We are fortunate that she doesn't get aggressive with us (aggression is common in many forms of dementia). I have to gently push her into the bathroom, where I turn on the shower head and she shakes her head at me, "no, no."

Once I get her in the shower, she kind of stands around, not sure what to do. The bathroom is very small; there is just enough room for the shower stall and the toilet. There isn't much room to maneuver around in so I've had to be creative in getting the job done. I usually step onto the toilet and lean over the top of the shower, removing the shower head to wet down her head. Usually she will grab the empty bottle of shampoo that sits on the shelf and then I take the full shampoo bottle, which sits on the back of the toilet, and pour it into her hands. She will slap it onto her head and put her hand out for more, so I put the conditioner in her hands. She doesn't make any efforts to rub it in anymore, so I lean over while she reaches for her loofah sponge and I quickly scrub her head. She holds her sponge out for me to put soap on, which bottle also sits on the back of the toilet (we moved it all outside the shower because of the incredible amount of soaps she was using). She used to wash her whole body herself, but now she runs it quickly across her chest and then hangs the sponge back up and turns off the water, without rinsing. This is where it gets tricky. I stand overhead with the shower head, trying to rinse her hair quickly, but once that water gets shut off she is ready to get out of the shower. This leads me to opening the right side of the shower door, turning on the water again, while Mom grabs the squeegee to wipe off the shower doors. It fascinates me that with everything she's forgotten, she still attempts to wipe down the glass doors with the squeegee! While she is distracted with that, I grab her loofah sponge and quickly try to wash all of her body parts, and yes, I mean all of them. This can be a bit uncomfortable for me, but I'm learning to deal with it. Sometimes she is done before I can wash all parts, so I have to physically get in there and put my foot against the door so that she doesn't open it. Last Friday, I forgot that important step in the process (putting my foot to block the door) and in an attempt to jet out of the shower, Mom opened the left side shower door and slammed it into my head. It hurt like heck and left a pretty good goose egg just above my eyebrow! You can kind of see it in the picture, it's kind of hard because I do have make-up on, but if you look closely you can see it (I was going to an 80's dance with my son, so don't mind the gobs of make-up and 80's accessories, ha ha).
It's a struggle to get her washing and rinsing completed, but I usually win, though I'm usually wet by the time this whole process is over. I've learned to take off my shoes and socks and usually come over in my work out clothes now.

Mom then grabs the towel and begins drying off. She used to be very thorough at drying herself, getting every nook and cranny. Now, she leaves herself very wet so I take the towel and help her to dry off her body and squeeze the excess water from her hair. Just as I used to do with my children when they were toddlers, I help my mom get dressed. I prep her underwear and bring it down to her feet where she can step into them, holding onto the wall. Then I put on her undershirt as she lifts her arms over her head and dives her head in the hole of the neckline that I have stretched open for her. Next comes her pants and then her shirt. It has to be in this order or she gets confused. If I hold up the shirt before the pants then she will think she needs to step into them, so I try to keep it in the same order. Up until a couple of months ago, Mom was putting on her own shoes and socks, but that has become increasingly difficult for her. Now, she holds her foot out for me, only raising it a couple of inches and holding her balance on the wall or vanity, while I scrunch up her socks and place them on her feet, stretching them past her heel and up her ankle.

It's becoming a bit trickier to get the job done, but between my dad and me, we seem to get the job done and come up with creative ways to make it happen. We've contemplated putting her in the bathtub rather than the shower, but I think that would be harder because she doesn't know the bathtub, she knows the shower. Since she doesn't really know day from night anymore (she is up in the middle of the night almost regularly), I think it might be easier for my dad to just hop in there with her at night and shower her; not that I'm trying to get out of helping...I'm happy to help. I'm just brainstorming the most effective to handle the situation. It is working for right now...but it gets more and more difficult with each passing week.

Monday, May 16, 2016

Mother's Week

Probably the hardest week of the whole year is [what I call] Mother’s Week. Mom’s birthday always falls in the same week as Mother’s Day-sometimes even on the same day. In fact, two years ago, her birthday fell on Mother’s Day. It was the last birthday she remembered, as I had predicted in my post.

Last year,
she had no clue what Mother’s Day, OR her birthday, were. We were hopeful that something might spark her memory, but without any luck.

This year, we knew well enough that she would have no clue about any of it. She doesn’t know what day of the week it is, let alone the month or day or anything significant. She has lost concept of time, oftentimes doesn’t know the difference between day and night, and one day just runs into the next for her.

The week leading up to Mother’s Week was a little emotional, as I prepared for another year without my mom. But I didn’t want to spoil the day by feeling sorry for myself, so I prepared myself mentally and made plans to spend time with my mom, despite her lack of comprehension. I still feel the need to DO something for my mom on special occassions, but what can you do for someone who doesn’t understand and appreciate the significance of the day, or have any interest in anything?

The best thing I can do for my mom is to care for her. So I decided to sell my toffee again to raise money for her caregiving fund. I kind of put it out there last minute, but I sold about 40 pounds! Thanks to my sister and my sister-in-law, Amber, for donating some of their time to help me get this done. I tend to bite off more than I can chew ;) Doing this helped me to feel like, despite mom’s lack of understanding, I was still able to give something to her to honor her special days.

On Mother’s Day, I enjoyed a short visit with mom, at her house. I took her to do the one thing she still seems to enjoy: take a walk to her sister’s house. She only stays for 2-3 minute visits now, but that 2 minutes makes her day. Twice, as we were walking, I could make out the words “Thank you thank you” as we made our way to her sister’s. Simple as it is, it’s the best I could think of to do for her.

On her birthday, we celebrated (without her) at her favorite restaurant once again: Miguel’s Jr. We did it as our 2nd annual foundation fundraiser in honor of my mom. I’m not sure yet how we did (financially), but there were quite a few familiar faces in the dining room and people I didn’t even recognize who walked in with fliers. Word is getting out; people are hearing about the foundation and supporting our cause while friends continue to come and celebrate my mom and support us in our journey. This support means the world to me. I know it means a lot to my dad, as well.

Mother’s Week was emotional; I think it always will be. I’ve learned that it’s okay to let a few tears slide. Though there was sadness in missing my mom, there was also a beauty in celebrating her and serving her. I am continued to be touched by the friendship and the love of friends and family that surround me. For that, I feel truly blessed.

I don’t know what next year holds for us, but for this year, she was still here physically and I was able to hold her and kiss her and tell her I love her; I am grateful for that.