Friday, August 26, 2016

Swollen Ankles

While bathing and dressing my mom on Monday, I noticed swelling around her ankles and feet. We've had some home assessments this summer from nurses and one of the things they always checked was her ankles. So when I noticed the swelling, it was a red flag for me. The swelling goes around the perimeter of her feet, but that part is minimal. What concerned me most is that on the front part of her feet (between the ankle and center of her foot) there is a round "pocket" of swelling. It's hard to describe, but it resembles somewhat of a golf ball, except instead of being hard to the touch, it is soft and gel-like. As Murphy's Law would have it, a social worker from a home health company came out to the house last week, assessed mom and closed the case since physically, there is nothing wrong with her. So I put a call in to her doctor, hoping he might call me back and discuss the swelling before we were tackled the difficult task of taking her in to the office. I was hoping to bypass a doctor visit and instead, have a house call from a nurse again. We have not had great communication and call backs from the doctor in the past; I was afraid I would be sitting around waiting for 3 weeks before we made contact so I decided to call the home care company and see if they could reopen the case. Unfortunately, they said we would have to start the process all over again at ground zero (referral, assessment, etc). Fortunately, the man I spoke with was able to call the doctor's office and received a call back quickly. Within two hours of his call, he had an order for a home nurse to come and assess mom.

To make a long story short, the nurse came by yesterday and agreed that the swelling looked very odd, and then admitted that she'd never seen anything like it. She said that it looked like a fatty tumor but she'd never seen it on an ankle before. So...there wasn't much resolution to the visit, other than the nurse reporting her findings to the doctor (we're waiting to hear back from him on whether or not he wants to see her, based on the findings) and the nurse is going to put in a referral for physical therapy for Mom, due to the fact that she's had a couple of falls (and couldn't get up) over the past two months. We'll see if that referral goes anywhere and if Mom would even mentally be able to participate in physical therapy. In the meantime, we are waiting to hear from the doctor on whether or not we need to take her in. Honestly, I'm not sure what he will be able to do if we took her in. A biopsy? Fat chance in getting her to cooperate with that. And anesthesia isn't a risk we want to take at this point.

I know some of you reading might ask:

Could she have twisted her ankle? It's possible, but unlikely that is the cause because it's in the same place on both ankles.

Could it be her medication? The nurse checked the interactions of each medication and no red flags showed up. She did start taking a new medication beginning of July (trazadone), but you would think side effects would've shown up sooner. The only medications she takes are trazadone, Ativan, and methyl-something-with-a-long-name (a hormone to stop her menstrual cycles).

Is she drinking enough water? She seems to be drinking at least 32 oz. a day. It's been the same for a long sudden drop in her intake of fluids.

Is her blood pressure okay? Last week it was slightly elevated, but she was also very agitated with the cuff around her arm. Yesterday, it was in the normal range (110/80).

Maybe it's the socks? My Aunt (who is a nurse) suggested it might be the socks creating a tourniquet effect. I changed her socks right away; that was on Monday and today is Friday and there is no change.

Sooooo....I guess we wait for a call from the doctor and go from there!

Thursday, August 18, 2016

Neighborhood Watch

Last night Mom gave us a good scare.

I was sitting on my couch with my husband around 9:00 pm, watching a TV show in my jammies and unwinding from the day. My phone rang; it was my sister. I answered the phone and when she hesitated for a second before answering, I had the sense that something was wrong. Her response confirmed it,

"Has Dad called you?" she asked, a slight panic in her voice.

"No, why? What happened?" I asked, sitting up straight, on alert.

"Mom is missing," she replied.

I nearly jumped out of my seat, exclaiming, "What do you mean she is missing??"

My sister quickly filled me in on what had transpired. She and her son had been at the house while Dad was looking at a job. When they saw Dad's truck pulling into the driveway, they gathered their things to leave. They unlocked the front door and let themselves out, but didn't lock the door behind them because Dad was getting out of his truck and coming up right then. It didn't seem likely that Mom would get out without someone noticing or crossing paths with her. Yet, it happened.

I jumped out of my seat and dialed my dad's number, trying to decide if I should leave the house in my jammies to go look for her or change into real clothes first (okay, let's be honest here...the issue was more about a bra than it was the jammies, ha ha). Dad answered his phone after the first ring and I asked him if he had found Mom. Thankfully, he said that he had found her. I breathed a sigh of relief and tried to calm my racing heart as Dad gave his side of what happened. Like Christina had said, he had just pulled up and Chris and Jeremy were walking down the driveway. Somehow in that time, Mom must have snuck behind Chris and walked down alongside Dad's huge work van as he was on the other side (hiding her from his view) and made her escape. By the time Dad had made his way up the porch, she was already gone and he had no idea that she had even step foot out of the house. He came inside the house and got settled in when, a short time later, he heard his doorbell ring. He answered to find a man standing there, who said, in a thick, Spanish accent,

"Your wife is out."

It took Dad a moment to understand what the man was saying, but then he followed him outside and walked up and down the street, finding no sign of Mom. Dad was a little suspicious of the man, wondering if he was trying to scam him or something, but the man told him to go check in his house. Dad walked through the house and the panic set in when he couldn't find Mom. He went back outside and-I can't remember if he said he walked or got in his car, but I think he said he happened to walk out at just the right time-he found Mom crossing a street in the neighborhood. My guess from Dad's description is that the man who showed up at the door was the husband of Mom's friend, Maria, who lives up the street. They often see me walking with her and they always try to engage Mom and say hi; they know the situation. Thank goodness that he happened to be outside at 9:00 at night and recognized that my mom was wandering alone. I am so grateful for neighbors who keep an eye out for us. I hate to think of how it could've ended had he not been out!

As I was on the phone with Dad, he found her ID bracelet that we'd had made for her a few years ago (that she would never leave on). I told him that she is to the point now where I don't think she can get the bracelet undone. After struggling himself with the clasp, Dad finally got the bracelet on Mom and as of this morning, when I checked in with the caregiver, it is still on her wrist. Even with our lock system, Mom is sneaky...we never know when she might get past us!

Friday, August 12, 2016

A Little Respite

On Monday, I returned from a 10 day family vacation. Our friends let us borrow their RV and we drove through Utah and Idaho to visit family, attend a special event for my daughter, Maurina, and enjoy the great outdoors. One of the best parts of this was that my dad was able to join us in his fifth wheel (travel trailer) as well! We rarely get to vacation together these days because somebody has to be home with mom. But it was important to Maurina (and me) that we both be there, so my sister stepped up to the plate and took care of mom while we were gone. I'm so grateful to her and to our other caregivers for making this trip possible and taking care of mom while we were gone.

For the first time all summer, I was able to really relax and enjoy myself. Even while I was in Arizona, I was busy answering phone calls, regarding mom, every single day. Mom is constantly on my mind and I worry about her when I'm way. The days leading up to vacation were filled with stress and sadness for me (I've had a hard time shaking off this "down" feeling lately) but I was determined to relax and enjoy time away with my hubby and kids. As much as I worry, I know my dad worries even more being away, but the time away was good for both of us. For the first time in a long time, I saw my dad happy and enjoying himself. We talked, we laughed, we played games, we went was almost like old times. Except we were missing Mom.

There were moments of reminiscing, remembering the trips we used to take when Mom was well. Sometimes I let myself daydream about what Mom would be saying or doing if she was still with us; things we did when she was with us. I imagine her playing with the kids or taking them on walks around the campground. I think about how she and I would've gone off to the scrapbook store while the guys were shopping at Cabela's or Camping World, like in times past. I picture her scolding us for not wiping our feet before walking inside the trailer. Times have changed and she is surely missed, but thankfully I was able to still have a good time and not dwell on the sadness that has been consuming me for the past few years. I kept my mind busy fishing and paddle boarding and laughing and making memories with my children.

For the first time that I can remember, I didn't want to come home from vacation. Usually, by the end of a long trip I'm ready to go home and sleep in my own bed and get back into a routine. This time, I really didn't want to come back home. It's hard to put it all into words, but coming home meant that it was back to reality; back to my routine of running here and there, of bathing Mom and watching her decline each day, wondering how much time we have left; the sadness envelopes me again. When I was away, I felt carefree and happy. Now, I get my daily reminder of what I've lost; what I am losing. It's a complicated thing to grieve for someone who is still living. I don't think it's something you can truly understand until you've experienced it firsthand.

Hard as it was to come back to reality, I was happy to see Mom again, to hug her and to kiss her and tell her that I've missed her. But seeing her also reminds me of just how much I miss her. This vacation was something I really needed, to refresh and reflect and to give me a new surge of energy to get through the next little bit with Mom.

Here are some pictures of our trip, for your viewing pleasure ;)

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 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!