A Lesson in Empathy

This last week and a half has been a whirlwind of activity. My mother suddenly asked when I was going to start helping her find another place to live which really took me by surprise. I knew she was bored sitting around my house all day and watching TV, but I didn’t think she was THAT bored. I had just toured one assisted living facility by my house, and the staff seemed nice. They also have activities that she enjoyed at her retirement resort in Tennessee such as bingo and happy hour, so I told her about it. She wanted to see it, and once she did, it turned out that she liked it very much. We spent last week making preparations for the move and then I took her to the zoo on Saturday since she had really wanted to go. Each day since her move on Monday, I’ve gone to visit, and she seems to be settling in very well. I feel so blessed since I know that many families struggle with this type of transition. I’d been praying hard (I’m talking about the praying that involves tears, asking for mercy, praising God, and begging) for help and guidance since my mother needs so much assistance, and I’ve been struggling with my own health issues. I truly believe that God intervened as he has in the past when I’ve felt overwhelmed and desperate.

I was also blessed to learn a valuable lesson through this experience. Yesterday, when I logged into an online course I’m taking this summer for the first time, I discovered that it’s not as self-paced as I had been led to believe. The course is being offered by the school district in which I work, and I found a message from the instructor asking if there was any confusion since had not logged in and done any course work. I clicked on the syllabus link and found that I had already missed some due dates. I immediately replied to the instructor’s message and explained my mother’s situation. I went on to explain that it has been a very trying time for us. He was very understanding in his response and said that I could go ahead and proceed with the course when ready. I felt mortified though. I’m not the type to ever make excuses. I’ve always met deadlines, and I consistently meet expectations. I pride myself on these qualities.

As the day wore on and I went through my course work, I continued to feel badly about neglecting this responsibility. I suddenly realized, however, that I should not be ashamed and that I was being too hard on myself. My priority was my mother…as it should be. Then I started thinking about others I have known and worked with who seemed to struggle with meeting deadlines or fulfilling responsibilities, and while it’s true that some people don’t plan well or procrastinate, I realize now that many people have complicated lives due to children, parents, or siblings, and I need to be careful in judging others. Weathering a storm can provide valuable perspective, and I believe this situation has helped me to become more compassionate, not just towards the elderly as I thought it might, but towards everyone.

I guess God not only answered my prayer for help with my mom, but he’s also answering my continued prayer that he will shape me into the type of person he wants me to be. It’s hard, but I know it’s necessary to achieve my purpose here on Earth and beyond.

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Photo by Annie Spratt and located at Unsplash.com
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Straight Paths

Recently, my mom’s Dementia took a pretty bad turn. Two Fridays ago, I came home to discover that my mom was in a foul mood and was accusing the neighbor kid from next door of lying to her. Really, it came down to his answering her question truthfully, but his answer did not align with what she thought he would say; therefore, she thought he was lying to her. When I explained the misunderstanding, she said he was “getting smart” with her. Then she said she “wanted to go home”.

I had read that people with Dementia will often say this especially if they have been moved somewhere. My mom came to live with me five months ago after a heart attack because she couldn’t live on her own anymore. The manager of her independent senior apartment complex said she had been struggling, and from the stack of unopened mail on her end table, the loads of laundry in the washer, dryer, or stacked on the dryer, as well as the funny smell in her apartment and rotting food in the fridge, I could see his point. She was relieved and happy when my husband and I asked her to move in with us, but now she has forgotten about the heart attack and how difficult things had become.

“I want to go home!” she repeated the next morning. I had hoped she’d forgotten being upset, but she had not. I told her that she could not go home because her health problems would not allow her to live on her own anymore, and they would not allow her to move back because of her poor health. She said she didn’t want to live with us anymore. When I told her that we could move her into a place nearby (I didn’t use the term assisted living facility or nursing home knowing she would freak out), she asked how much they cost, and because she can’t seem to remember that she has plenty of money in savings and a decent income each month, she, of course, freaked out. That Saturday was awful with her yelling and my crying off and on all day.

The next morning, I woke up barely able to move. I loaded up on Prednisone and went back to bed only to lie there feeling horrible for the next half hour. I then got up. I could hardly raise my arms, so my husband helped me wash and fix my hair. I recently started Cyclosporine, but I haven’t noticed a difference yet. My husband and I went to church, and I silently cried off and on throughout the service. And when I got home, my mom asked to go home again. I told her, “This is your home now. Why do you want to leave?” She said, “I don’t know. I just know that I got upset.” I asked her, “Do you know why you got upset? She responded, “No, I just know that I was.” Less than 48 hours had passed but she had already forgotten why she had been angry and thrown a huge fit. I couldn’t believe this was the same Italian mother I grew up with who had held grudges for decades!

I reminded my mom why she’d been upset but assured her that the neighbor boy wouldn’t be coming over anymore. (We had discussed mom’s condition with him outside and let him know that, while we would still be happy to ride our bikes with him or walk our dogs with him, he could not come into our home anymore.) Mom seem placated and she’s been doing pretty well though there was a debacle last week over my replacing her “new” bras because they were falling apart and the hooks on them were rusting.

On Mother’s Day, I kept thinking, Oh, God. What’s going to happen? How is this thing going to play out? Are we going to have to have her hauled out of here one day by the police to the hospital for psychiatric evaluation and have her taken to a memory care facility from there?  I became completely overwhelmed by fear, and that’s not something I should do as a Christian. Fear leads to despair and a loss of hope, and I’m determined not to let that happen. So what if my husband lost his job, I lost my health, and my mother lost her mind? I will put my trust in God, confident that good will eventually come out of all this.

trust in the Lord

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Flare

I wish I could say that the title of this post refers to a positive definition out of Webster’s dictionary such as “a sudden brief burst of bright flame or light,” but I’m sad to say that it doesn’t. In this case, it refers to the flare up I’m experiencing in my autoimmune disease(s).

I had been doing quite a bit better since greatly reducing my gluten intake, but my condition has worsened again. I’m not sure if it’s because of stress or exposure to sunlight or trying to get off Prednisone as my rheumatologist insisted, but I woke up one day with intense joint pain which I haven’t experienced since my days of Lupus. I’m also exhausted and getting chest pains off and on.

I went to see my rheumatologist who said my joints seemed terribly inflamed and that I needed to increase my prednisone and get the inflammation under control before I can even consider getting off prednisone again. *sigh* One step forward, two steps back.

The tests results are back, and the good news is that my muscle enzymes were normal for once. However, my complement level is low, my ANA is positive again, and my C-Reactive Protein is high. Some of my other numbers are off as well, but my doctor didn’t say anything about those. What she did say is that I need to start Cyclosporine. I’m just hoping it’s not like Imuran, Cellcept, or Methotrexate all of which make me run to the bathroom every 15 minutes. Luckily, the school year is almost over, so in six weeks I can get plenty of rest as the Cyclosporine kicks in.

OK, so I’m sorry to be a Debbie Downer. I usually try to be all positive and upbeat in my posts, but I also want to keep it real. So where is the positive? The positive is that I’ve backed off on some responsibilities. For instance, I removed myself from a committee at church. There are a couple of new people on the committee who can pick up where I left off. I’m still serving my church in a couple of other ways that do not involve my going to meetings at night when I should be getting ready for bed.

I’m also asking questions of God when I pray, and even though a certain preacher recently stated that there’s no point in asking why bad things happen and that we just have to accept that life isn’t fair, I think that asking why is an acceptable form of prayer in a close relationship. I don’t think God minds us asking why when we are heavily burdened as long as we continue to honor him as well. Would a parent mind his child asking him a question? God gave us a brain that attempts to rationalize, did he not? Therefore, I’m leaving you with the following video clip of Queen Latifah in Last Holiday because it’s not only a great scene, but I think it captures how I feel right now.

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The Dance

Dementia is an odd disease in that you basically lose your most recent memories first. For instance, yesterday, when my mother asked how old she would be on her next birthday, I said 88, but then she insisted that was impossible because she was only around 80. When she asked what year it was, and I replied 2017, she didn’t believe me and insisted it couldn’t be 2017 already. I remembered reading that you’re not supposed to argue with someone with dementia, so I said, “Oh, wait, I got confused. You’re only going to be 81 on you next birthday. I don’t know who I was thinking about.” She then leaned back in her recliner with a triumphant look of vindication.

This conversation happened exactly one day after I told her she had received a card from her old neighbor, Ms.  Francis, and she couldn’t remember her. Ms. Frances was her neighbor at the retirement resort in Tennessee where she lived for three years prior to moving in with me in December. I let mom know about the card, and she said, “I don’t know that person”. When I reminded her who Ms. Francis was, mom replied, “I didn’t live in an apartment”. I described the apartment building with its goldfish pond in front, the bingo games she loved to play three times a week, the dining room where she ate all her meals, and she had no idea what I was talking about. It’s like she lost all three of those years.

Conversely, she seems to remember everything from her childhood and keeps telling me all sorts of stories about her parents and siblings. On Sunday, for instance, when she supervised my husband and I in the planting of some rose bushes, she told me that her father used to plant roses for her mother. She also likes to tell me about her mother’s cooking and how nice her sister Sadie was when they were growing up. I’m enjoying hearing these stories, but I can’t help but feel sad that she’s losing memories of people she recently knew.

Yesterday, as I was thinking about my mother’s memory loss, I started to worry as I wondered…what if my mother forgets who I am? Right now, she trusts me, perhaps because I’m her daughter and she has fond memories of me going back many years. If she forgets who I am, however, will she become suspicious of me as she does physical therapists and other strangers who enter our home? I then remembered that Jesus said, “…do not worry about tomorrow, for tomorrow will worry about itself”. (Matthew 6:34)

I found peace in this and decided to hand the worry over to God. I’ve just got to take each day as it comes and make the best of it. In fact, when Alif, our seven-year-old neighbor, came over today like he does most days (he’s sort of a Muslim version of Dennis the Menace), he demonstrated the Dab to us which is some sort of crazy new hip hop dance in which you basically act like your sneezing into the crook of your arm. (What in the world will they think of next?) I turned to my mom and asked her what dances were popular in her day. She said, “Oh, well, there was the Lindy and the Big Apple. I asked her about the Charleston because I love the Charleston scene from the movie “It’s a Wonderful Life” (see video at the end of this post), and she replied that it was popular when she was really young. I looked it up on YouTube and my husband, Alif, and I all watched a video of it, imitating the moves as we did so. We danced the Charleston, terribly I might add, as all of us, my mother included, ended up laughing hysterically.  It was great fun, made more wonderful by the knowledge that my mother had a good day. I’m determined to hold onto this memory and other good memories of my mother in the coming days, weeks, and months.

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Wander On, Weary Soul

We have a couple of amazing neighbors named Roberto and Maria. They’ve been married around 50 years, and they’re the type of neighbors that sit out on their front porch and invite you in for tea and cookies or even wine and bbq depending on the time of day. We’ve been truly blessed to have this couple in our lives as they’ve offered us many words of wisdom.

Last week, Roberto gave me a recording of The Bluegrass Gospel Project, and I was struck by a song called “Wander On, Weary Soul” which you can listen to at the end of my post. Even if you’re not a fan of bluegrass, I think you’ll find the lyrics both beautiful and comforting. Basically, it’s about how you just have to keep going no matter how difficult your situation is or how long it may last. There’s a lot of nature imagery used such as being in a snow storm as it’s getting dark while going up a mountain. In the last line of the chorus, the singer points out, “You shall be free as neither does the river know the way down to the sea”.

This song has been a source of comfort to me, especially over the last couple of days. You see, this week is my spring break. It’s normally a time for me to recharge my batteries going into the final quarter of the school year when the kids are at their wildest and there’s so much still left to accomplish. Unfortunately, my mom is exhibiting some of the negative behaviors she displayed 3-5 years ago when she last lived with us. These are the same behaviors I witnessed growing up as well. I’m not going to go into details but I was hoping things would be different this time. It seems that I’m in a snowstorm entering a time of darkness while traversing a mountain. I don’t know how long or crooked the course is that lays before me, but I take comfort knowing that I’m not alone, that others have faced long and difficult journeys, and that there will be an end at some point.

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A Day of Rest

I was raised by an Italian Catholic mother, so guilt has always been something I’ve experienced to a great degree. I was able to decrease the amount of guilt I experienced when I left home and became protestant, but it’s something that I still struggle with from time to time. Guilt can be good in that it’s a signal from our conscience or God that we’re not doing what is good and noble, but it can also crush one’s spirit and make one feel unworthy, and I don’t think God wants that.

I’ve recently started reading a devotional book called Not Alone by Nell Noonan, a woman of great faith and strength who took care of her invalid husband for some years before his passing. I knew her personally because she attended my church, but because I wasn’t a caregiver, I never felt the need to read her book…until now. It has helped me in doing just what the title suggests…feeling “not alone”, and it has given me some strength and helped me forgive myself for the times when I feel inadequate.

Taking care of an 87-year-old can be difficult, and when you’re a caregiver for someone, you will invariably feel some guilt if you become impatient (when having to repeat yourself a lot for instance) or don’t feel you’re doing enough for that person. I’ve noticed that when I’m tired or not feeling well, I tend to be more impatient with my mother, and when I’m under fatigue and duress, that’s also when I tend to eat things that aren’t so good for me. I had a hectic week, and I faltered in my endeavor to stay gluten free, and I ended up in a big flare of my Dermatomyositis Friday and Saturday, necessitating my taking a bunch of Prednisone. Fortunately, it worked its magic so I could take my mother to the emergency room yesterday afternoon. Apparently, she has now developed cellulitis, a bacterial infection on her leg. They released her after giving her an IV antibiotic and a prescription for more of the same in capsule form, but we’ve got to keep close tabs on the situation since she’s elderly and has Diabetes.

After I waited in line at Walgreen’s for twenty minutes this morning, I went home and helped mom with a shower, determined not to feel guilty for missing church.  As mom napped in her recliner, I listened to the rain fall via my Calm app while I typed away on the first half of this blog post, avoiding practicing for a presentation that I’m giving Tuesday afternoon.

After fixing lunch, I decided that I would bake some bread, something I haven’t done in a long time. Because of my gluten sensitivity, I can’t eat it, but I can still enjoy the smell of it baking, and I know my husband and mom will enjoy eating a fresh warm slice with some butter. When I started getting out the flour, yeast, sugar, and butter, my mom wheeled her walker into the kitchen and asked if she could help, and I didn’t hesitate to say yes. There wasn’t much she could do but sit and supervise,which she did,  letting me know that she always used lard instead of butter in her recipe and warning me repeatedly not to let the butter, milk, and sugar  mix get too hot on the stove “because it will kill all the yeast”. Usually, her repeated warnings would frustrate me, but instead I found myself smiling and accepted that this is who she is and who she has always been, a perfectionist when it comes to baking.

She greased a bowl into which I could put the dough to rise. I know she missed doing the mixing and kneading, but she still seemed content with just sitting and talking about how her own mother would let the dough rise all night because she always made a large batch; she would make several loaves each Saturday. She smiled as she told me this, and I felt some of that guilt I’ve been feeling  lately slip away and a peace came over me, a peace that comes from letting go of some obligations and just enjoying the time you have with those you love, doing activities that you enjoy.

God wants us to have a day of rest, a Sabbath, each week, and today, the reason for it really hit home. God modeled having a day for rest in Genesis, not because he needed a day of rest, but because he knew that we would. We’re just better when we’ve had rest…not just physically but mentally and spiritually as well. We cannot really take care of others unless we take time to care for ourselves.

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Photo courtesy of Sean Stratton via Unsplash.com

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Home again

Today I brought my mom home from rehab. The social worker wanted to keep her another week but decided to release her sooner because of her confusion and her penchant for being “feisty”. She now has a doctor’s order for a nurse, nurse’s aide, physical therapist, and occupational therapist. The nurse is supposed to come tomorrow to evaluate her.

We got mom settled in rather quickly this afternoon, and I got to give my first insulin shot. (Yea, me!) Fortunately, she is able to stand and walk again, but she’s not walking very well and gets tired easily. I’m not sure what therapy will accomplish considering that she has congestive heart failure, kidney disease, and emphysema, as well as bad knees, but we’ll see. I wasn’t sure they would get her standing or walking on her own again at all, but they have. In my opinion, health care workers are angels in human form. Some of the things they do border on the miraculous!

So besides looking after my mom and running errands all the time (taking her to doctor’s appointments, running to Walgreen’s to pick up her medicine, helping her change and shower), what am I doing with my free time? Well, besides working 45+ hours a week, and trying not to let everyone down where my volunteer work is concerned, I’ve been asking God, “What is your will for my life and when will things start looking up?”

I guess I’ve sort of been feeling sorry for myself when really I shouldn’t. I took on the responsibility of looking after my mom after her heart attack, and my husband is able to watch her during the day since he’s not working outside of the home…not for money yet anyway. I had felt like I overextended myself, and I was looking for a way to draw back a bit; this has certainly given me reason to do so. We’ve learned to live more frugally, living solely on my public educator paycheck. I’m also not freaking out about some stuff like I used to. I guess having an extremely sick relative can help you put things into perspective. Still, I can’t help but think back to better times when we had more money and time at our disposal. I know this is a learning experience and that it will make me a better person, but I still miss the old times.

We’re told in Proverbs 3:5-6 to “Trust in the Lord with all your heart. And lean not on your own understanding. In all your ways acknowledge Him, and he shall direct your paths.” This is much easier said than done, but I’m going to try to do it anyway. Please pray for me and my family as we go through this difficult season in our lives.

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