As my dear mother’s struggle with Alzheimer’s grows increasingly difficult to manage, it is becoming harder for me to leave the house for any length of time. While my hubby is very capable and always willing to help in many ways, sometimes the help mom now needs is very personal in nature. For this reason (and many more), it’s such a blessing to have a daughter who lives nearby who often helps her grandma when I need to be away. I recently had to take my brother to the doctor and the timing of the appointment didn’t work out for Beth’s schedule. Thankfully, my friend Rita was more than willing to help.
It would be my heart’s desire that caregivers everywhere had someone like Rita in their lives. Someone with the ability to read between the lines. A friend who puts their own life on hold in order to be a blessing. Seriously, if I post something on Facebook or my blog about being tired, I can almost guarantee that shortly thereafter I will hear the “ding” of an incoming text and it will be Rita offering to help look after Mom.
Just last week Momma was having a very hard evening. I had called hospice to let them know that she was having high levels of anxiety and breathing difficulties. Before I knew it, two hospice nurses were at the house helping me with her needs. Toward the end of their visit, I noticed a familiar look on Momma’s face and a slight slump in the way she was sitting. I told the nurses that it looked like Mom was going to faint. And faint she did – she slumped over hard and for a much longer period of time than her usual syncope episodes. Even though I’ve been through this several times now with mom, this one felt a bit different and, I must admit, this time was a little scary.
Unbeknownst to me, in the midst of the ordeal, my hubby Wayne put out a prayer request on our church’s Facebook group and several in our church family began lifting her name up in prayer.
We had a hard time getting Momma to recover from her faint and struggled to get her limp form into bed where we could better help her. I was so very glad to have two nurses there to witness the episode, help me care for her during the episode, and help get her cleaned up and ready for bed afterward.
Momma was now resting comfortably in her bed and the nurses were preparing to leave. I heard my phone ring. Rita called to see if I needed any help; specifically offering to come spend the night so I could get some much needed sleep. I smiled as I listened to her kind offer and quickly responded with my “Yes, please!”
As I said my goodbyes to the nurses and awaited Rita’s arrival, I offered up a prayer of thanksgiving to God for sending TWO hospice nurses tonight and for giving me a friend like Rita – a friend who is truly the hands and feet of Jesus in my life right now.
I love Christmas. My husband would tell you that sometimes I go a little too crazy with the cleaning, baking, gift-wrapping and preparations. And he would be right. But the joy of a family gathering together makes it all worthwhile.
Our Christmas was different this year. Very different. In fact, I can think of seven differences right off the top of my head.
Difference #1 – I didn’t go crazy decorating this year.I put up and decorated our Christmas tree. And that’s it. And I didn’t even hang ALL of the ornaments. No garlands and lights. No wreaths. No candles, or anything else lurking in the bins marked “Christmas” in my storage area. I didn’t even put out Christmas napkins or plates.
And, you know what? I still loved it.
Difference #2 – Less Sugar. LOTS less sugar. My children and grandchildren have grown accustomed to favorite home-baked cookies and candies being stacked one atop the other in a special set of aluminum stacking trays I inherited from my mother-in-law. Every year each of five layers of trays included our favorites: Snowball cookies, candy cane cookies, chocolate fudge, peppermint patties, and soft ginger cookies dipped in white chocolate. Eyes would open wide whenever I’d bring the tray full of goodies out of the 3-season porch (our second fridge in the winter). Everyone knew yumminess was contained within those five layers.
This year, we’re all more conscious of sugar and what too much sugar can do to the body. I made one sweet treat and skipped baking Christmas cookies (with the exception of a batch of gluten-free snowball cookies for my hubby). There also weren’t candy dishes throughout the house filled with M&M’s and chocolate candies.
We still enjoyed Christmas – sans the sugar high.
Difference #3 – The guests. The people gathered were a sweet mix of family and friends. Our daughter and her family were part of the usual cast of characters at our celebration, but our son and his family could not come because they were using this time off of work and school to go on a family vacation. This year our gathering included our new friends and adopted family of the heart Herim and Waldely, and their sweet daughters Fabiana and Alexa. If that weren’t blessing enough, as a bonus, our celebration also included Herim’s visiting cousin Anna and Anna’s nephew Luigi.
In addition to hearing a lot of Spanish floating around the room, our little family relished spending time with our new friends as they shared with us more about their country of birth, Venezuela. We learned about the similarities and differences in customs, and laughed together over the cultural differences that one stumbles upon when being immersed in the language and traditions of the United States. Waldely shared the humor she found when Americans are introduced to a new food they don’t particularly like. We don’t just come out and say, “I don’t like it.” With a little raise of our eyebrows, we say, “Mmmm…interesting.”
I only wish I had taken pictures!!
Difference #4 – The meal. It was an early lunch, rather than an evening meal together to accommodate everyone’s schedules for the rest of the day. It was rather simple fare with ham and cheese sliders on the menu, rather than the egg-laden brunch casserole I had originally planned. There were a few equally simple go-withs such as deviled eggs, a little fruit tray, a few cut-up veggies with dip, potato chips, pickles/olives, and the like. Waldely added quesillo, a delicious traditional Venezuelan flan to our buffet spread. Oh, so yummy! Estaba delicioso!
Difference #5 – Gluten Free Options.In our family, we traditionally enjoy what we call “Wisconsin Buns” on Christmas Eve. It’s a recipe handed down to me by my mother-in-love. She made it almost weekly in their family, but I reserve making this special (highly calorific and very bad for you) “coffee cake” for Christmas Eve morning (and will also make it as the birthday treat for any family member who requests it). This year I also made up an experimental batch of gluten-free Wisconsin Buns. Not the same by any stretch of the imagination, but a surprisingly tasty alternative treat for my husband, who now finds allergies to be a daily struggle.
Difference #6 – The shopping.All of our shopping was done by Wayne on-line this year – mostly via Amazon. No trudging around in malls. No being tempted by impulse purchases placed strategically at every check-out line. The kids and grandkids made lists on their wish-lists and the purchased gifts came to our door only needing to be wrapped. I love watching the faces of each grandchild as they open a gift they really wanted.
Difference #7 – Momma was here, but absent. Though our house was full of people laughing and the sounds of children playing, Momma pretty much missed all of the Christmas activity as she retreated to her room and slept throughout the day. Last year she was able to join us in the family room and watch in delight as her great-grandchildren opened gifts. This year, Alzheimer’s has noticeably taken away her delight in all things social. Her inability to participate in our celebration was a little sad. In spite of that, I’m glad her number on the wait-list hasn’t come up at the memory care facility we have reserved for her. It brought me peace of mind being able to peek in on her in our home.
If Momma had a wish-list for next year’s Christmas gift, heaven would be at the very top of her list. No more tears or confusion. No more memory problems. No more excruciating knee problems. And together with her Lord and Savior FOREVER!
My hubby has been gone for ten days on a short-term mission trip in Dehra Dun, India. Ten days. I know, in the greater scheme of things, that’s not very long. If all goes well with travel plans, he should be pulling in the driveway in time for lunch today. His absence has made me keenly aware of all the little things he does for me that make it possible for me to care for my mom in our home. I am blessed and grateful.
More than ever, in the time that he has been away, I have also discovered how very blessed I am with friends and family. They’ve helped me clean my house, mow my lawn, and brought me dinner and companionship. These beautiful people have spent a little time with my mom so I could go to the gym, grocery shop, run a few errands, work in my garden, celebrate my birthday with my family, or take an unhurried bath. After a Facebook post about my sleepless nights, a couple of friends carved time out of their busy lives to take care of mom for a few hours, allowing me time to take a nap. One sweet friend even spent the night so I would be assured of at least one night of uninterrupted sleep.
We caregivers are made of some pretty strong stuff. But, sometimes, some of what appears to be “strength” is just a facade – a false wall of competence that gives others the impression that we’ve got it all together and that we don’t need any help. That facade is a form of pride which causes us to struggle to accept help when it is offered.
I have been hesitant to hit the “publish” button on this blog post, because I realize many of my fellow caregivers struggle with finding people to support them and give them a little respite. My heart goes out to you. As I pull my thoughts together into words to write, I am praying that God will bring into your life people who can help.
I think it is safe to say that most caregivers have heard someone say, “How can I help?” Or perhaps it sounded more like, “If there’s ever anything I can do to help, just give me a call.” This little missive is primarily written for you. I must admit, I have heard myself reply on far too many occasions, “No, thanks. I’m okay. But, thanks for offering.”
Here’s my tip – If someone offers to help, never turn them away. Don’t put off saying “yes” for a time when you really need it. You really need it now.
I would love to hear how some of you have been helped as a caregiver, or given help as a friend. Please share your ideas and thoughts in the comments below.
Momma’s eyes light up when Kathryn shows up each Friday evening. As Kathryn hoists her burgeoning backpack off of her shoulders and settles in at the kitchen table next to my mother, I look over my shoulder as my husband and I leave for our weekly Friday evening of respite and sense that I will not be missed at all. These two friends have already started in on their fun.
I’m pretty sure that our mom’s caregiver Kathryn is a real-life Mary Poppins. Much like Mary’s carpet bag filled with surprises, that backpack of Kathryn’s is always stuffed with hand-selected items which will help my mother “find the element of fun” for the next five and one-half hours. Together they eat supper, then work puzzles, color in their coloring books, have fun with hidden picture books, make a craft together, and a host of other things. Kathryn will read a storybook with mom, bring her a book filled with beautiful butterflies and flowers to page through, or even read a Bible passage together.
I’m so very grateful that early on in our caregiving journey with mom we decided it would be money well spent to hire a caregiver to help us out on a regular basis (actually, my very wise husband insisted). Mom is by no means wealthy, but Social Security and a modest pension gave her the resources to pay for a little help, so we chose to have someone come in twice a week for a few hours. When she was still living in her own home in Milwaukee (82 miles away from me), we chose Rent A Daughter to help us fill the caregiving gaps when family couldn’t be there to check in on her. Once we moved her to Fitchburg, we chose Home Instead to be our caregiving ally.
Some might argue that it is too expensive to hire someone. From my way of thinking, a few hundred dollars a month is less expensive than having my own health suffer because I never get a break. Preventative medicine, if you will. And it’s definitely less expensive than the cost of assisted living or a nursing home.
Whenever I have the opportunity to encourage someone who is heavily invested in caring for a loved one, I always encourage them to find a trusted substitute caregiver. Even if finances to pay for outside help aren’t an option, I encourage caregivers to reach out to friends (a retired senior), family (for us, our daughter, eldest granddaughter, or sister), a good neighbor…anyone who can give a little break from the physical, mental and emotional rigors of daily caregiving. It might not be for five hours, but even an hour or two away can make a difference.
Another sweet caregiver named Kathi comes on Sunday mornings, allowing us to have six hours to be able to teach our respective Sunday School classes, attend our worship service (my brother comes too), and enjoy lunch together with my brother. Mom doesn’t usually feel much like being social in the morning hours, but spunky Kathi’s positive can-do spirit also manages to keep my mother content and socially engaged during our time away. When we return, we usually find them seated at the kitchen table watching the birds at the birdfeeders and coloring together. And as an added bonus, Kathi always makes sure my dishes are done! Gotta love that!
The blessing of finding TWO caregivers who bond so well with my mother is most definitely Supercalifragilisticexpialidocious!
Sometimes “church” doesn’t just take place on Sunday morning seated in a pew in a sanctuary.
Last night Momma sat at her end of our kitchen table smiling. Seated around our table were some pretty special dinner guests: my girlhood pastor and his wife, Ed and Diane Fuller, and their son and daughter-in-law, Scott and Dianne Fuller.
I told Momma about the visit shortly after she awoke in the morning. It’s funny how certain future events linger in the mind of a person experiencing significant short-term memory loss, yet other things slip right through like sand through a chicken wire sieve. Continue reading “Church at the Kitchen Table”
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.