Setting the Caregiving Stage

I love to get my hands and feet dirty. Try as I might, I can’t seem to keep my shoes or gloves on when I garden. I guess I’m a tactile sort of person who enjoys the feeling of the warm earth squishing between my toes or sifting through my fingers. I try my best to make things grow, but know in my heart that very little of it is up to me.

Landscape designer Tish Treherne wrote an article for Sunset magazine that I really enjoyed. Tish wrote about how she designed her personal garden space around their gorgeous waterfront home. She likes to keep things slightly wild looking by “loosely layering unfussy perennials.” I love her garden design philosophy and enjoyed reading her description of how the plants she chose nestle into one another like puzzle pieces to create a seemingly effortless whole. 

I start planning my garden in the dead of Wisconsin’s winter when the first seed catalog comes in the mail. I get out my Sharpie marker and circle the flowers that capture my attention in the catalog pages and dream about where I’d put them in the garden. I get out my garden journal and jot down a few notes about what I’d like to plant, what I want to move, which plants I’d like to dig out, and what I’d like to purchase.

Whether shopping by catalog, or cruising the aisles of my favorite garden centers, I pay attention to the description of each plant, determining whether I have adequate space or light, or whether I’m in the right planting zone. My dear husband fully supports my need for dirt therapy, allowing me to add to my cart whatever little lovely attracts my eye.

Bug-infested Roses

Even with careful planning, planting and faithful watering, not all of my plantings survive. I have lost count of how many failed butterfly bush and clematis vines I have planted. Likewise, each tulip and daffodil bulb I plant in the fall holds the promise of a gorgeous bloom to follow in the spring, but not all of the bulbs I plant make it. Winters can be harsh, Springs too wet or too hot, cute little critters eat my plants and bulbs, disease strikes, insects munch away. Like Tish said in her wonderful article,

“You’re setting the stage as a designer, but you don’t have total control over what’s going to happen.”  ~Tish Treherne

I often draw parallels for life from my garden, and Tish’s philosophy holds true on that front as well. As I seek to take care of my mother’s increasing needs for care, I am just setting the stage as a designer. With the help of our family, my husband and I turned our dining room into a lovely bedroom for her. She has a special spot at our kitchen table where she can watch the birds and view the gardens. We make sure she has meals that are reasonably healthy, treats that make her life enjoyable. I make sure she receives appropriate medical and dental care, and that she is adequately clothed and groomed. We try our best to ensure her safety by putting up baby gates, installing handrails, building half-steps, using video monitoring systems while she sleeps, and making sure someone is with her 24-hours a day.

I can design a stage for her care, but I do not have total control over what’s going to happen. She may take a fall. She will undoubtedly get a urinary tract infection and have hallucinations which will keep her (and us) awake. If this disease takes the usual sad course, she will lose the ability to walk, talk, swallow, toilet herself, or perform even the most basic of personal care. I have absolutely no control over her future. I have no idea what even this day will bring forth. But God does, and He will give me wisdom for the next step of Momma’s life journey…and mine.

In the meanwhile, we will enjoy the flowers that survived, each moment of restful sleep, the birds playing in the fountain, the September breezes, porch-sittin’ days, visits from family and friends, knees that are sorta working today, and all the other beautiful daily benefits that come from God’s storehouse of blessings.

 

Honoring Your Parents: Nursing Home or Your Home?

Caring for my Momma in our home was a relatively easy decision, although the path toward making that decision was anything but as it took many twists and turns along the way. From the earliest days of traveling back and forth between Fitchburg and Milwaukee, to moving her closer to us, God has always been faithful in shedding light on the next step we need to take in our caregiving journey.

At first, we wanted to make an addition on our home for her – a first floor granny suite. Our local senior center’s social worker, along with our elder care law attorney, both agreed that this sort of building project was an appropriate use of her financial resources. Should we ever have to “spend down” her resources in order to satisfy Medicaid guidelines, they assured us that the expense would be allowable and justifiable. So, we did a little homework by getting an estimate for making an accessible one-bedroom plus a bath addition. To say we experienced “sticker shock” would be an understatement.

I was disappointed. Very disappointed. I cried…a lot.

IMG_2006Having nixed the expensive addition idea, we decided that keeping Momma in her nearby senior apartment under our close supervision was still the best option. With the assistance of family, an occasional friend, 11 hours of professional caregiving a week, and well-placed wi-fi cameras, we made it work. Then, about five months into this arrangement, a recurrent battle with a urinary tract infection resulted in hallucinations, alarming behavior, and plenty of evidence that Momma needed more care.

It seemed impossible to keep her at our house. So many questions and not enough answers. Where would she sleep? Our bedrooms were on the second floor.  What if she wanders in the middle of the night? A sunken-living room became a potential fall hazard. How would she bathe? We only had a small half-bath on the first floor; it would barely be walker-assisted navigable.

There were just too many obstacles, so I moved in with her to help with daily needs.

moms room
Our dining room turned bedroom

Well, after 8 months of that, Momma took an ambulance ride to a nearby hospital and life changed once again. As I stayed with her in her hospital room, painfully aware that she couldn’t go back to her apartment, I prayerfully turned the various options over in my heart and mind. My husband was doing the same thing. When we sat down to chat about it, we realized we were on the same page. We were going to make room for her in our home. We would make it work by turning our dining room into a bedroom for her. You can read more about that here.

As I continue to blog and share my journey in caring for my mother, I am learning that I am not alone in making difficult decisions related to caring for an aging parent. I have a number of friends who are caring for one or both parents. Some have decided that their loved one would receive better care in a retirement home, assisted living, or skilled nursing facility. I support them in that decision, knowing it was reached prayerfully and with great deliberation.

As a daughter seeking to provide compassionate and God-honoring care for my mother in my home, I found the biblical insight of a podcast I listened to today to be very helpful. The realization that I may need to make a decision in the future that would mean my mother would no longer be cared for in our home becomes more intense with each day that passes. I thought I’d share the link to Desiring God Ministry’s “Ask Pastor John” series on the subject of “Retirement Homes and Caring for Aging Parents.”  The information he shared confirmed in my heart and mind that I am doing the right thing for the right purposes and, should her needs change, I will not be dishonoring my mom by placing her in a facility where she will receive appropriate care.

I encourage you to click on the link above to access the podcast, but let me leave you, dear reader, with a tiny bit that was especially encouraging to me.

Are we ready to make sacrifices for our parents? Or are we resentful that they are becoming a burden? That’s the real test. All of this may or may not mean that the parents come to live with us or near us. There are innumerable variables that make one situation right for one family and another situation right for another.

After Midnight Search

Sometimes life is just clearer in retrospect.

I know now that I should have responded to the video monitor’s prompting much sooner. Perhaps I would have been able to get more sleep if I had gone to Mom’s mental rescue sooner. It was after midnight, and Momma was having yet another bad night struggling with sundowning. I watched and listened in on the monitor as she yanked the chain on her bedside lamp and sat up in bed talking to herself. Nothing new; the same questions she always asks – those questions that never go away, even with an answer. I heard the familiar “zip” of her purse as she went through the contents of her purse over and over again. Between each examination of the contents, she would carefully hide the purse beneath her bed sheets. Then, in delighted surprise moments later, “find” the purse and go through the unzip and search motions again.

In the wee hours of the morning she decided to get out of bed. I pushed my head deeper into my pillow and watched from my own bed via the video monitor as she “furniture-walked” without her walker, opening and closing each drawer in her room, rifling through the contents and rearranging everything to her liking. She seemed to be looking for something. Momma was safe enough, just restless and confused. She left the room twice to use the bathroom, but always came back to her bed promptly.

I felt guilty just lying there watching, but I felt utterly exhausted and was in a bit of pain. You know that feeling you have in your leg after a middle of the night leg cramp? Well, I haven’t had a muscle spasm, but I’ve been having that type of “after pain” in my right leg all day. Add in a brewing migraine headache and a mom who just won’t go to sleep, and you have an equation that equals not enough sleep.

At two thirty, I got up to take some more ibuprofen, then drifted off into a state of semi-sleep, still listening, still peeking to see what Momma was up to. By four in the morning the tone in her voice changed to one of frantic agitation, so I made my way down to her bedroom to see if I could help, or at least redirect, so we could both get some rest.

Not wanting to startle her, I flipped on the hallway light so she would see me coming, rather than just have me appear out of nowhere in her room.

Bleary-eyed, I said in my loudest sleepy voice, “Momma, you really need to get some sleep.”

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“Well, I’m not going to bed until I figure out who the guy in this picture is.” Momma held out a photo she normally carries in her purse. It was a picture of her with my Dad. I told her, “Well, that is you and Dad.” I could see her beginning to process that information and quickly realized that she was processing the word “dad” and couldn’t make the transition in her brain from my dad to her husband. I added, “Momma, that is your husband, Jerry.”

“Oh, Jerry Robert! Well, now that I know that, I can go to bed,” declared my sweet Momma as she crawled into her bed and nestled her weary from wondering head into the pillows I had fluffed for her.

It was a little disheartening to know that she was struggling to remember her husband’s name, and that I had let her struggle with that search for so many hours, rather than helping her fill in that piece of information so she could feel more settled. How scary that must have been for her.

I sleepily climbed the stairs and went back to my own bed with a prayer in my heart for Momma and me. This time, sleep came easily. Four and one-half hours of sweet sleep.

Junk Mail Queen

Wayne and I would encourage everyone with an elderly family member to keep a close watch on their loved one’s mailbox (and checkbook and credit card statements). This world is so full of organizations unscrupulously preying on the heartstrings of the elderly and frail, many of whom are feeble of mind and unable to understand the ramifications of the checks they write or the information they provide.

I’m taking a moment today to reshare this Facebook note I previously published on July 10, 2016.  As you know, since publishing this a little over a year ago, we have moved my mother in with us and have a much better handle on what mail she sees, but my heart still goes out to all of those elderly victims of junk mail abuse. Please click on over to my blog to read (or re-read).

Continue reading “Junk Mail Queen”

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.

God’s Grace through Others

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.
VivsTextI 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 knew Viv 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.

VivsText2

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.

Hearing the Voice

Facebook Journal Entry – October 13, 2015

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.

IMG_2568
My parents

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.”
~ Philippians 3:20 (NIV)

Sundowners and Sleepless Nights

“Hi, Cindie!” said Momma with more brightness in her voice than a live-in caregiving daughter hopes for at 1:52 a.m.

“Hi, Momma,” I groggily responded as I peered into her bedroom doorway. “What are you up to?”  The soft light from the streetlight outside mom’s bedroom window snuck in a bit through the slats of her blinds, allowing me to see her distinctly hunched form in silhouette as she sat in the dark on the edge of the bed.

Out of the darkness, her voice continued, Continue reading “Sundowners and Sleepless Nights”

Forgetting Time

Tissue alert.

This post is another in a series of my Facebook posts from 2015 related to caring for my mother. It’s really hard for me to re-post it without shedding my own tears. Those who are walking alongside a loved one struggling through the various stages of Alzheimer’s will probably relate very well. By the time you realize that the momentary lapse of memory is something more than the natural aging process forgetfulness, hints at “forgetting time” or how to tell time have already begun. Continue reading “Forgetting Time”

Giving Momma Space

It is generally not a good idea to leave a person with Alzheimer’s alone. We are at the point in the progression of the disease where it is never a good idea. But, after a few days of company and a revolving door of caregivers, Mom needed her space and wanted to be left alone. I’m thankful for D-Link, a Wi-Fi camera which allows me to keep an eye on her while I sit in the apartment lobby and work on a bit of writing for my new blog. There are other security cameras out there, but this is the one we chose after doing a little comparison research. D-Link is affordable, easy to set up, allows for multiple cameras (in other rooms), and offers 15 feet of night-vision, and the ability to pan and tilt the camera remotely. Continue reading “Giving Momma Space”

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