An advocate is someone who can help you speak up so that your needs are heard, your rights are understood and your problems are resolved.
Momma and I took an ambulance ride to the hospital on April 30. Momma was in a lot of pain. A LOT of pain. She had a fever and she could not support her weight on her legs. In retrospect, there were a few signs I should have paid closer attention to, but the acute pain came on suddenly. She went from being able to use her walker, to needing assistance to get out of bed, to not being able to get out of her chair (or “off the throne”) in the course of just a few hours.
I must confess that there was a twinge of relief when I was told she was going to be admitted. It meant that someone else was going to help me care for her during this medical crisis. It meant that someone was going to help me make decisions. Continue reading “We all need an Advocate”
I had a little fun playing in the dirt today. It felt good to feel the warm earth between my toes. I had to dodge a few raindrops, but was able to work on a special project. I planted a little succulent garden in the top of a stump left behind when our ash tree was cut down. I decided to take advantage of the gorgeous day knowing that tomorrow will bring some big changes at my house.
Tomorrow Momma comes home to live with us. She’ll move into the dining room turned bedroom and call it “home” for the foreseeable future. Our just-the-two-of-us house will become home to three of us. Life as we know it will change significantly.
Momma’s roommate in the nursing home shared, “I really like your Momma, and I especially like you. But, I’m glad your mom is going home because I will be able to get some sleep again. How are you going to do it? Your mom stays up all night!”
I told Angie that I’m hoping that being busy and engaged during the day will help her rest better at night. I’m hoping that having the security of family will help her rest more securely. But, I know my sleep will not be the same. From now on, we’ll be keeping overnight tabs on mom via a video baby monitor. Her noises and movements will undoubtedly change my sleep habits.
It’s not going to be easy providing home care. It will inconvenience me. It will probably make me tired. It will stretch me in ways I can’t even begin to imagine. I will not have enough strength and resources to go around. I see that already.
But, I know God has lead me to do this for my mother. He will provide everything I need.
I know it has been quiet on the “Barefoot Lily Lady” blog. A surprise ambulance ride with Momma on April 30 brought about a whirlwind of activity and change. I will undoubtedly write about that in the future, but wanted to share the next big thing on our horizon.
We have been preparing a special Mother’s Day gift for my mother over the past few days at my house. Our dining room is being transformed into a special place for my sweet Momma. It will be her new bedroom starting this Tuesday.
For more than seven years now, I have been spending extra time with my mother, trying to help her navigate life with advancing Alzheimer’s. Up until last year, Momma was able to live in her home in Milwaukee, with me commuting back and forth at increasingly shorter intervals (and for lengthier stays) as the years and the wicked disease progressed. By late fall of 2015, it became apparent that it was time for her to move to Madison to be closer to me.
We moved Momma into a nearby senior apartment in March of 2016. It is a lovely 1-bedroom place that suited her needs just fine. We would drop in often, eat with her every evening, do her grocery shopping, and help her get wherever she needed to go. Because her mobility was tenuous, we decided to install WiFi cameras so we could keep an eye on her when we weren’t there, making sure she hadn’t fallen. Momma settled into her new place nicely; however, by September, the combination of her frantic phone calls and rapidly declining cognitive abilities, made it abundantly clear that a new change was necessary. I moved in with her full-time because it was no longer safe for her to live alone. With the help of family, paid caregivers, and a few friends, this worked well.
Until April 30th.
God has a special way of shedding light on the next step I need to take. This time it was an ambulance ride and subsequent hospitalization. God has used Mom’s recent hospitalization and short-term nursing home stay to help us make another important decision. God was making it clear that now is the time to move her in with us.
Moving day cannot come fast enough for my mother, who is in short-term rehabilitation in a nursing home following a brief hospital stay. I visit her twice a day and always find her with her bags packed and ready to go. She pleads under her breath, “Get me out of here!”
Moving an aging parent in with you is not always an option, and may not always even be the most loving thing to do. We recognize not every one makes that choice when it comes time for their parent to receive extra care, but, Wayne and I both believe it is the right decision for my mom’s well-being at this time. I am very grateful for a supportive husband who allows me to follow my heart in providing home-based care for my mom.
We are in this together. I suspect this is somewhere tucked in the “for better or for worse” part of our marriage vows.
Together we have discovered there is an amazing amount of stuff you need when preparing to live with a loved one experiencing Alzheimer’s. For us, it means, two baby gates, a door alarm, a special lock for the basement door, a hospital bed, special bedding, grab bars in the bathroom, a video baby monitor and WiFi camera, to name just a few.
We’ve made some other important discoveries too.
Together we have discovered what an incredible family we have – those related by blood, and those related by heart. Our daughter, in particular, has taken the bull by the horns and worked tirelessly to get her grandmother’s apartment cleared out. Our friends have also found numerous ways to show they care.
Together we have discovered what an awesome, prayer answering God we have. He has provided everything we need in so many gracious, only-God-can-do-this ways. Here’s my Facebook post from May 11 with just one example:
God’s answer to prayer. Almost paid nearly $1,000 for a refurbished hospital bed. But God connected me with a sweet elderly lady whose husband was admitted to a nursing home. She had just sold their home and needed to get rid of this 1-year-old bed. The same bed I was going to buy…but, He answered our prayers and put a blessing on top…the bed was only $50.
And, together, we will give my mother an awesome Mother’s Day gift. A loving place to call her home, God willing, until her next move to heaven.
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.
One of the greatest indignities of the disease called Alzheimer’s is that in the later stages your body forgets how to do the most basic of daily routine care.
Like how to use a toilet.
In the hospital setting, a family member is not allowed to assist with these very private needs. Hospital safety regulations prevail subjecting that person you love and care for to accept help from a bevy of healthcare nurses and aides. All of them very capable and kind, but scary strangers to a confused mind.
In the wee hours of the morning, two of those beautiful people were assisting mom within the tight quarters of the hospital bathroom. I sat outside in her room listening. While they assisted Mom, her nurse asked a routine memory assessment question: “Do you know why you’re here, Charlotte?” Momma thought about it for awhile, then shook her head ‘no’ when she couldn’t come up with an answer. Then she added, “I know I came here to honor my Savior.”
I think there was a little tug at each of our hearts. This dear woman of faith who each day awakens to fewer memories than when she laid her head on her pillow the night before still realized her purpose in life.
It took quite an effort to get through all the steps of this basic human need. As mom finally got seated back on the edge of her bed, she prayed a prayer I have heard her say many times in the past few months. My heart melted just a little more when I heard her pray aloud
“Thank you, Jesus, for all you do for me.”
Momma wrestled her uncooperative legs onto her bed, where her nurse tucked her under her covers and her nurses aide arranged her pillows where they provided the most comfort.
Yes, life as Momma knows it is changing drastically. Life as I know it is changing too.
Momma’s next prayer reminded me that in the midst of life’s storms, we can bring glory to God. Tugging her blanket up under her chin, Momma closed her eyes and talked to her Savior.
“Thank you, Lord, for this day. Lord, continue to give me the grace to be obedient to you.”
A kerfuffle is some kind of commotion, controversy, or fuss. If you read about a scandal in a newspaper, it could be described as a kerfuffle.
Kerfuffle is a humorous-sounding word for a mostly non-humorous situation: some kind of disturbance, scandal or mess. However, a kerfuffle usually isn’t 100% serious. People talking loudly in public could be making a kerfuffle. If a politician says something embarrassing by accident, it could cause a kerfuffle. Often, people use this word when they think people are making too big a deal of something, as in “What’s the kerfuffle all about?”
This word just keeps floating around in my brain. The reason is not entirely apparent, but I just can’t stop landing on that word today. All day. Constantly.
I guess it’s a sign that I should write about it.
There does seem to be a whole lot of kerfuffle going on in the news today. The mere mention of the name “President Trump” can cause a kerfuffle between the best of friends. But that’s not the kind of conflict I’m thinking about at the moment.
In the world of an Alzheimer’s patient, repetitive thoughts are commonplace commotion of the already fragile mind. Life can be like a stuck record. My sweet Momma will get a thought in her head, then it will just keep circling in her mind, prompting the same question. To her, each time the thought comes around, it’s a totally new thought, keeping her mind in a constant state of commotion – a kerfuffle, if you will.
Sometimes it’s a worrisome thought about money. She’ll wake up in the middle of the night and wonder how on earth she is going to pay for her apartment. She does not remember that her bills are on “autopay” and she has social security, a pension, and a steady stream of investment income, so she’ll get up and search through her purse, her drawers, and closets looking for her money. Even with our constant reassurance, the question is never truly answered.
Sometimes Mom’s kerfuffle is in the form of a fear. Fear of water or the shower continues to be a problem. Even though she informs me that her head itches and she needs to wash her hair, there is no way I’ll get her in the shower without force. It’s just not worth the kerfuffle or (here’s another fun word) brouhaha.
My mind experiences kerfuffle when it’s time to sleep. My husband falls asleep within a minute of his head hitting the pillow, but my mind just refuses to find the “off” switch. My brain is too busy for sleep. I’ll be thinking about my to-do list, something that happened that day with Mom, something I should have said but didn’t, or shouldn’t have said but did, someone I need to talk to, what I’m going to have for breakfast, an idea to try…sometimes all of the above, and then some.
Sleep is one thing I’ve discovered caregivers really need…and really lack.
One nighttime kerfuffle fighter I have turned to in recent weeks is to meditate on a Bible passage as I’m settling down at night. I’ll read a passage I’d like to consider, then open my Bible app to that passage, turn on the narrator’s voice, turn off the light, then lay my head on my pillow and listen. God’s Word is a wonderful thing to ponder. A few chapters in and I’m in a restful sleep.
Sleep is good stuff. Even better is sleep nestled in God’s Word.
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.