Death is Certain – Prepare for It

My husband handles our household finances. He also handles financial matters for my brother and mother, who are both unable to handle their own affairs, due to cognition problems. I thought I’d pass along my husband’s sage advice to those who read my Barefoot Lily Lady blog.

P.S. His blog is well worth following.

Know Your Flocks & Herds

1 Corinthians 15:53-56 (ESV) – “For this perishable body must put on the imperishable, and this mortal body must put on immortality. When the perishable puts on the imperishable, and the mortal puts on immortality, then shall come to pass the saying that is written: ‘Death is swallowed up in victory. O death, where is your victory? O death, where is your sting?’ The sting of death is sin, and the power of sin is the law.”

A can of albacore tuna has a “best by” date. After that it might be bad. A gallon of milk has an expiration date. It won’t taste good when it goes bad. Even my medications have an expired date. Let’s face it, we all have an expiration date and we are all perishable. It isn’t something we like to think about, but it is reality. I am thankful for another reality. It is the…

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We all need an Advocate

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”

Big Changes

Transforming a tree stump into a succulent garden

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.

Everything.

A Gift for Momma

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:

moms room
Dining room to bedroom transformation in progress

 

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.

Still Me – by Natalie Ducey

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.

stillme2

via Still Me ~ This is my hope and prayer. — Natalie Ducey

In Everything Give Thanks

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.”

Kerfuffle

 

kerfuffle

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?”

Kerfuffle.

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.