I could have written this, but didn’t. Natalie’s beautiful poem describes exactly what is on my heart right now as I care for my sweet mother.
💕 Still Me 💕 This was written with the deepest respect for those living with Alzheimer’s and dementia, and their dear loved ones who know the journey well. I like to believe that although memories become fragmented and misplaced, the Soul never forgets. This is my hope and prayer.
I’ve mentioned my brother a few times on my blog now, so thought I should reach back in time to almost a year ago where I introduce him on Facebook. I’m Brad’s health care power of attorney but, more importantly, his sister. So, I got involved in my brother’s business when it became very apparent to me that there was more than laziness keeping my brother living as a recluse in my mom’s spare bedroom. No work for 6 years (he’ll admit being lazy at first about finding work after losing a good job). No income and no ability to handle his own financial affairs. Diabetic, but doing nothing about it. No time spent with friends. Just sleeping, eating, smoking cigarettes in the garage, and watching TV. One day in April of 2015 I announced to Brad that I was taking him to the VA to see if we could get him some help for some very obvious (to me) health problems. He was so sick and very willing to go. That began a year of uncovering and treating several significant health problems – including cancer – multiple cancers, one of which had already traveled to lymphnodes.
With the help of some pretty amazing doctors at the VA Hospital, Brad fought his cancers and won. But the fight was hard on his already frail body. It soon became clear he could not go “home” again. Brad has since settled in nicely in a skilled nursing facility near my home. Visits with the doctors at the Madison VA are not quite as frequent. We continue to routinely screen for skin cancer, treating when necessary. Because Brad is not a good candidate for another round of chemo and radiation, we are no longer actively screening for the return of colorectal cancer via invasive tests and medical imaging. We’re doing what’s referred to as “watchful waiting” – waiting for symptoms of cancer to return and planning to provide comfort care should his cancer return.
Facebook Journal Entry – May 2, 2016
Meet my younger brother, Brad. I would describe him as a generally laid back, genuinely nice guy. Single. Never married. Former trucker. His happy place in life is sitting around a campfire with a few good friends after a day of hunting or fishing. It has been a few years since he has felt well enough to be in his “happy place,” or anywhere besides his bed.
Lately I’ve been accompanying my brother to the VA hospital once or twice a week, sometimes spending an entire day there, depending on how many doctors he needs to see. My heart is filled with compassion for my brother. It has truly been a rough year for Brad. So many ailments and serious health concerns previously identified by the Milwaukee VA (Zablocki) have been addressed. Now, as we transition his care over to the Madison VA, -Brad’s new care teams have been getting to know him – one clinic at a time: Retina Clinic, Geriatric Clinic, Dermatology, Oncology, Urology, Podiatry, and Neurology. Brad and I are very grateful for the fine care he continues to receive as a military veteran.
Today’s appointment was with his new neurologist; a straight-shooter who does not mince words. Nothing was sugar coated. Sometimes I would steal a glance at Brad to see how he was taking the brutally honest information. There was very little in the way of encouraging news today. I had mixed feelings; part of me wanted to cry, the other wanted to hug this doctor for his forthrightness and practical advice.
Brad has battled cancer courageously and without complaint. In this regard, except for some skin cancer yet to be excised, he is doing well. The sad news is that he will never regain the use of his legs. Diabetes and chemo and radiation therapy have taken their toll. No amount of physical therapy will help him regain the lost muscle mass. The wheelchair is, and will continue to be, his everyday companion.
It pains me to see my younger brother living in a nursing home. I want him to live with me and I want to help take care of him, but my house will not accommodate his mobility needs. Due to mom’s physical problems and her declining mental acuity, living with mom is not an option either. Thus, Oregon Manor is his new home
Mom misses Brad too. Each and every day she hopes he is coming home to live with her. The mom in her wants to take care of her boy. Today, after Brad’s appointment, I brought him to Mom’s apartment for a little visit. Wayne prepared dinner and we sat down to eat together as a family. This meal together brought mom joy and gave Brad a different sort of dining experience than he has in the nursing home. Time with family. Precious.
After dinner and a brief visit, it was time to get Brad back to his abode. Together, we’re getting the hang of this transportation thing. I’m even learning to wrestle his wheelchair in and out of the trunk…not with the greatest finesse, but it’s getting easier.
Our ride “home” was quiet. There was a lot for both of us to absorb following today’s visit. With Brad situated comfortably in his room, I left to go spend a little more time with mom. Once in the car, however, the enormity of the doctor’s words today registered in my heart and hot tears began to flow. It was another one of those moments in life where I knew I needed to pray, but the words would not come. But God knew what was on my heart and He heard my unspoken prayer.
I will admit. I really enjoy Facebook. I love keeping in touch with friends – old and new – via this social media phenomenon. I find it outrageously amazing that I can connect with a few of my “besties” – keeping tabs on their kids and grandkids via anecdotal stories, posted photographs, and funny videos. So many of my friends now live several states away, so every post they make invites me to share in their world. I can also catch a glimpse of what is going on in the lives of aunts, uncles, cousins, nieces, nephews and sundry shirtail relatives and family members I rarely see (and a few I’ve never really met in person), friends I went to grade school with (and haven’t seen in 45 years), neighbors who’ve moved away years ago…and the list goes on.
My own children are on Facebook. I assure you that this grandma loves to read their posts and see the pictures they share.
Yes, Facebook friendships are fun. But the best kind of friendships – true friendships – are those characterized by faithfulness. These friendships are truly priceless. I have more than my fair share of that type of friend, but let me tell you about two of my faithful friends who have blessed me immeasurably.
I’d like you to meet Paula and Shary.
We three went to the same church for years and years. We raised our families in the church together, grew in the Lord together, and shared the joy of friendship. Now we three live too many miles apart and rarely see one another. In fact, Shary finally had enough Wisconsin winters and moved to North Carolina! Last September, Paula hosted a sweet little luncheon in her Pewaukee home so that the three of us could spend time with one another while Shary was visiting in Wisconsin. It was as if we had never parted. The afternoon just flew by.
At the end of our afternoon tea, the three of us embraced in a little prayer huddle in the middle of Paula’s living room. My heart was so moved as each one of us took a turn lifting one another up in prayer. I tell you, Paula and I know there is no better feeling than being covered in the warm blanket of dear Shary’s intercessory prayer.
Paula and Shary have exemplified the title of “faithful friend” in my life. I cannot begin to tell you how much they have encouraged me in my journey of caring for my mother as she struggles with Alzheimer’s. These two ladies not only pray regularly for me, but they look for ways to be an encouragement.
Faithful friends read between the lines. They look for ways to be a blessing.
Shary “read between the lines” when she picked up on my comment about how much receiving mail means to my shut-in mother. Since then, every so often, Momma is delighted to open a beautiful card from Shary. Within each card is a sweet note and assurance of prayer. Mom reads those cards over and over again. Those cards keep on giving, as mom rediscovers the cards and rereads them again and again. Not only does Shary send cards, but even her daughter and grandchildren got involved at Christmas filling my mom’s mailbox with their love and best wishes.
Most recently, I made a comment on one of Paula’s Facebook photos (pictured). Having just recently played dominoes with my family using a set of dominoes that has a number of tiles with dots that missed being painted, I exclaimed on her post, “Wow, I would love those dominoes!! No more counting dots!”
My kind and thoughtful friend Paula read between the lines. Before I knew it, a package with my name on it was delivered to my doorstep. My very own set of no-dots dominoes just like the ones in her picture!
Tonight, I’m thanking the Lord for these two precious friends and their very encouraging acts of kindness. I praise God that these two ladies paid attention to the “nudging” of the Holy Spirit to bless me in these special ways. May the Lord grant me a faithful heart like theirs – one that seeks to bless others by reading between the lines.
Today could have been a very discouraging day. It seemed the Enemy was definitely intent on throwing into my path every obstacle he could muster as I tried to minister to my mom and brother.
It was obvious to me that from the moment mom awoke, her state of confusion was worse than I had ever seen it. As she stood in the middle of the kitchen of the home she and dad had built in 1962, she looked at me and said, “I’m really in a fog. I can’t remember where anything is. This doesn’t even look like my kitchen.”
My heart sank. Mom’s dementia was on the move again, claiming another piece of her short-term memory – and maybe even a little bit of her long-term memory as well. Together, we made it through the morning, enjoying one another’s company and figuring out life’s little dilemmas like, “Who took ALL the pens and pencils in this house?” Momma was now ready for one of her frequent naps.
While Momma napped, the next thing on my agenda was a trip to the VA hospital where my brother is a patient. My mission was to speak with the Social Security Administration (SSA) in a second attempt to set up an on-line account for Brad so I could help him apply for disability and monitor communications from home. [Last week’s previous failed attempt included getting “locked out” of his account and an unfruitful phone call to the SSA to unlock his account – a long story, complete with a one hour 20 minute hold time and a lecture about committing fraud where I was admonished that Brad needed to be present in the room while I was working on helping him.]
I arrived at the hospital armed with my generally trusty laptop and fully charged iPhone, parked myself at Brad’s bedside, and made the second call. Thankfully, our hold time was just 35 minutes and we were able to speak with a very kind and helpful representative named Brandon. In the end, even Brandon was unable to help me accomplish my goal, but he did assure us that we would be asked the very same questions at our phone interview on February 15.
Kind of frustrating. As frustrated as I was, I did recognize that even this situation was an answer to prayer. It was not the answer I was looking for, but a closed door is still an answer. I have every confidence God will open the right door in His time.
When I arrived back at Momma’s house, I was dismayed to find yet more evidence that mom was experiencing a very bad memory day. Mom was fretful and talking about “all the kids” who were visiting her yesterday. There were “so many” of them. According to mom, they were well behaved enough, but messy. She said she enjoyed spending time with each one of them, but now she was left to find where they had put all her stuff.
Sadly, there were no kids here yesterday…or any time in the last several weeks (unless you want to count her 55 and 58-year-old daughters in the kid count). Mom’s “stuff” was indeed missing. Not only were all of her pens and pencils missing again, but so was her checkbook, her shampoo, and nearly every Kleenex box in her home. Mom accused “the kids” of taking her stuff. She accused “those girls you hired” of stealing her Kleenex, complaining, “They should really bring their own.” She even accused me of using up her shampoo.
The truth is, the increasing paranoia of dementia makes Mom hide her own stuff. Her pens and pencils were tucked in her dresser drawer. The checkbook was in her purse where it belonged, but her purse was hidden. Her shampoo was sitting on top of her dresser, rather than in the shower. And the Kleenex boxes were stacked up in the corner next to her favorite chair.
Yep, it was definitely a very discouraging day. Thankfully, over the past several months, God has impressed upon my heart the need to look for joy in the midst of life’s difficulties. It’s always there. I sometimes have to look a bit harder, but I can always, always, always find joy.
Today’s joy was found in seeing my brother looking content and better than he has since Christmas. I felt it in his heartfelt “Thank you for all you’re doing for me and Mom, Cin.”
That little bit of joy would have been enough for me to treasure in my heart, but God had more in store.
When I walked in the door with arms full of groceries later in the day, I found Momma standing in the kitchen in the same spot where earlier in the day she had stood in a scary state of confusion. This time, I found Momma experiencing absolute delight having just received a phone call from Jean, one of her friends at church. Jean told Momma she was planning to visit her on Friday and she would be bringing Momma’s friend Bev. We added that special bit of joy to Mom’s calendar so Momma can smile every time she looks at it.
But God still was not finished. Momma had also received some mail – a very special Valentine from her very thoughtful sister. My Aunt Carolyn had also enclosed several old photographs from Momma’s younger days. Each picture evoked a crisp as can be memory and story for her to share with me. Incredibly special moments in time.
Thank you, dear God, for infusing incredibly difficult days with even more incredible bits of joy.
Getting my mother to leave her apartment for ANY reason is difficult these days. Mom had an appointment with her memory doctor on Thursday and I was very relieved it was Viv’s turn to get her ready to go. I told my sister she’d need to start about 2 hours beforehand, gave her a few tips, and warned her Mom would likely give her a little guff about the doctor’s appointment and ask where they were going about 50 times.
I was at home getting ready to leave the house to go out to lunch with my husband when I received this text from Viv.
It made me smile.
I wasn’t smiling because it was funny (well, maybe a little). I smiled because I knewViv knew. This experience had helped her better understand that taking care of our mom was hard…and that I need her help.
I know in my heart it’s not “me” doing this, so I sent Viv this reply text.
The appointment was just a routine check-in with her geriatric specialist to make sure all was well with regard to her Alzheimer’s medication regimen and to find out if there were any new concerns. I did have a concern. Mom had been complaining of difficulty breathing for a few days and seemed a little more irritable and confused. She always has troubles with her allergies, but this seemed different.
Sure enough, when the medical assistant took her vitals, she expressed concern that mom’s heart rate was only 44. That would be a good heart rate for an uber-athletic man, but not an elderly woman whose heart rate is usually around 68. I was pretty sure that the medication donezepil (Aricept) was the culprit. I didn’t think that the Aricept was providing measurable improvement, so wondered if we should discontinue it.
To be on the safe side, the nurse practitioner wanted to rule out heart problems. Orders were placed for blood tests, an EKG and a chest x-ray. Mom even got an escorted wheelchair ride as part of her ordeal. The medical assistant who pushed mom had the sweetest personality and threw me looks of compassion for mom as my sweet momma asked the same question at least five times between the doctor’s office on the 2nd floor and the lab in the basement.
Mom is mobility challenged and hard of hearing, so I suited up in a lead apron and helped my mom stay in position for the chest x-ray, using a loud voice to instruct “breathe in and hold” and “exhale” at the appropriate times. Then I answered mom’s questions as the technician got her hooked up for the EKG. Long story short: all is well with her testing. No A-fib, heart problems or stroke. The medication was probably to blame, so we were instructed to discontinue that medication, take her pulse daily, and visit her primary doctor in a week or two to reassess.
I followed Viv and mom out of the nurse practitioner’s exam room. As I stepped toward the door, I felt her hand on my shoulder. I turned toward her and saw a look of compassion. Her eyes were telling me, “I know this is hard. I’m here for you.”
I’m extremely thankful my sister was able to accompany us on this bit of the journey. As I have gotten to know other family caregivers along the way, I realize all the more how blessed I am to have a sister who is willing to help out a few days each month. Sadly, there are a lot of lone ranger caregivers out there who have zero support from members of their family.
Please. If you know one of these dear people, do what you can to bless them with your help and encouragement. Be God’s grace in their lives. They need it.
About 30 seconds after wheeling her cart into her local Pick n’ Save grocery store, Momma abruptly stopped in front of the produce section and informed me she needed to take her hearing aids out. The clatter of carts, the din of voices, and incessant cash register beeping were just too much. She pulled each device out and carefully placed them in a little pouch we keep in her purse. With a look of great satisfaction on her face, she smiled broadly, and said, “Ahhhh! Peace and quiet.”
But, Momma’s quiet world isn’t always quiet. Occasionally, she’ll be sitting in her favorite chair and then suddenly wave her hand in agitation, as if shooing someone away. “Oh, be quiet! Go away!” she’ll scold. I’ll ask Momma who she is talking to and she’ll reply, “Don’t you hear him? He keeps singing that same song over and over and over again!” When I ask her to describe what she is hearing, she tells me it is a man’s voice and he’s singing opera. I hear nothing of the sort. But, Momma hears “him” quite often throughout the day.
I know a little bit about hearing repetitive sounds. I have tinnitus, a condition which causes both of my ears to ring with each beat of my heart. Every day – every night – ALL the time. Sadly, there is no cure. During the day, the noises of life all but drown it out. In the still of the night, only sleep helps me escape the constant noise. I shudder to think of having to listen to a man singing opera all of the time. Even if I happened to enjoy opera, that would be much harder to deal with than the phone that no one answers that I hear in my own head.
It is difficult seeing my sweet mom struggling with so many things in life. Mom has osteoarthritis – her knees and hands hurt a lot. Walking is becoming more and more of a struggle. Her short term memory loss becomes more pronounced each week – that in itself is heart breaking. Even with the aid of hearing aids, mom’s deafness is becoming more profound.
It’s the memory loss that seems to bother mom the most. Just today we were looking for her checkbook (again), a frequent activity. Those who experience short-term memory loss often have an associated paranoia. They think “somebody” else is moving their stuff…or, worse yet, stealing their stuff. So, they keep moving their stuff in an effort to hide it from the unscrupulous “somebody.” In reality, they’re hiding the items from themselves; sometimes very successfully.
Today I walked in on one of Momma’s searches for her missing checkbook. She was kneeling in front of the couch, lifting the little skirt surrounding the couch and peering underneath. The checkbook wasn’t there…but she found the cookies she hid weeks ago. Wincing in pain, Momma willed her arthritic knees to crawl closer to the sofa so she could use it to assist her in returning to a standing position. In excruciating pain and with tears rolling down her cheeks, I heard Momma say under her breath as she straightened her knees, “Jesus, please take me home soon.”
Though it made me cry inside, I found myself praying in my spirit along with her, “Lord Jesus, hear Momma’s prayer.”
Someday, perhaps very soon, Momma will hear the Voice of her Savior telling her, “It’s time to come home, Charlotte. I’ve been waiting and have a place ready for you.”
Soon, Momma, soon.
Update: Momma has reluctantly graduated to a walker and doesn’t carry a checkbook or wear hearing aids anymore, but she still hears voices. Dad has been in his heavenly home since May of 2008 but she sometimes “hears” him speak to her. She has a picture on her dresser of the two of them and occasionally asks me if I see his lips moving too. I even heard her scold him once and tell him to be quiet. The opera singer has apparently followed her to Fitchburg, much to her disapproval. And Momma still longs to hear the voice of her Savior and take up her new body and her citizenship in heaven any day now.
“But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body.”
I was preparing supper in the kitchen while my mom and hubby chatted in the living room, when I overheard Mom say to my husband Wayne, “Are you a patient here too?” Wayne chuckled and responded, “No, I’m just a visitor.”
I had to stifle a laugh. It was so sweet. With that bit of in-house comedy came the realization that Mom’s perception of me as a caregiver (or herself as a “patient”) isn’t far from the truth. I may not have M.D. or R.N. following my name but, the fact remains, I do provide care.
In the course of my day, I was her “nurse” as I managed and dispensed her medications, her nurses aide when I helped her get cleaned up following an accident (then disinfected the bathroom), and her live-in dietitian when I made sure she ate food more nutritious than potato chips and ice-cream. Add to that the daily task of constantly helping my sweet mom with the mysteries of life (e.g. “Where’s my purse?”) or helping her remember the things we take for granted, like where the bathroom and bedroom are located.
When midnight rolled around, I was tuckered out and already in my makeshift bed (mom’s couch), but suspected my care-giving wasn’t quite over for the day when I heard the distinctive sound of mom grunting as she pushed her walker from her bedroom. She called out into the darkened living room, “Cindie, do you know where my toenail clippers are?”
“Yes, mom. Do you need help with something?”
Mom took a seat in her favorite chair just a few feet away, then switched on the tablelamp. Blinking back the abrupt brightness, I could see she was holding one shoe in her hand. Apparently her toenail was bothering her inside of her shoe and she was just not going to get any rest (nor would I) until that problem was remedied.
Like many elderly people, mom’s nails are very thick. A bit much for her arthritic hands to tackle. Taking my nailcare kit in hand, I sat on the floor with her foot in my lap and became her podiatrist. After clipping her bothersome nail, I trimmed a few others then lotioned her foot.
Momma loved the toenail TLC from her live-in care-giver and soon shuffled off to bed yet another time. Thankfully, she slept for 8 hours straight…and so did I.
Sleep seems sweeter when you know you’ve been a blessing to someone else.