(Note: Healthcare marketers and communicators have always fallen short when it comes to developing a deep understanding of the patient and caregiver’s mindset. The recognition of that failing is what motivated this post.) On June 11, 2012, my father sent this letter to all five of his children. My mom had been suffering from dementia […]A Love Letter from an Alzheimer’s Caregiver — The Healthcare Marketer
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.
My Momma just turned 85 years old a few days ago, so I was a little surprised to hear that her grandmother stopped by for a visit this afternoon. Momma said that her Grandma Peet seemed a little confused, but she enjoyed their sweet little chat about this ‘n that.
I apparently missed seeing my great-grandmother by just a few seconds. I heard my Momma talking to her (well, Mom’s side of the conversation, anyway), but the minute I poked my head into Mom’s bedroom door to see who she was talking to, Mom says Great-Grandma disappeared!
Momma is concerned that her grandma just, “Poof! Vanished!” She hopes I have her phone number so I can give her a call just to check to see that she is okay. She would call herself but, “You know, my hearing’s not that great on the phone.”
It’s a dilemma you might face as a caregiver. The one you’re caring for customarily sent out Christmas cards. How do you help them now when they can barely sign their name? Continue reading “Tuesday Caregiver Tip: The Christmas Letter”
Just over one year ago I wrote, “Honoring Your Parents: Nursing Home or Your Home?” (I invite you to read it here.) In that piece I endeavored to describe the process which had guided my decision-making related to caring for my mother as she slipped further and further into the horrible world of memory loss. Countless decisions have been made since moving my mother from Milwaukee to our home in Fitchburg. Each decision to be made along the way was generally preceded by some sort of adversity which required a change. We prayed about each change, each process, and each decision. Our faithful God always answered, shedding light on each uncertain step.
Change is in the air once again.
Mom’s advancing Alzheimer’s and a few recent difficulties have made it abundantly clear that we need to prepare for what the next level in mom’s care might be. There have been many “nudges” toward planning for the possibility of mom’s future care taking place outside of our home setting. But three things in particular:
- A gentle nudge in the form of a well-timed question from Diane, mom’s palliative care nurse practitioner. “So, have you considered what the next step in your mom’s care might look like?” We had a good chat about that, and she gave me several helpful suggestions.
- My hubby’s trip to India. I had to ask myself what I would do if something happened to him and he could no longer help me. Even though my family and friends rallied to help me out during his trip, it became very clear that caring for mom on my own would be at too great a risk to my own health and welfare.
- My own frailty. I took a fall down a short flight of stairs in my own home. Aside from a scrape to my leg, a few sore muscles and toes, the greatest injury I sustained was to my own pride. The fall served as a wake-up call causing me to consider how Wayne would care for mom if something happened to me.
In the past year, I’ve looked at the websites of many assisted living places, have talked with a few representatives on the phone, traded emails with yet a few more, and even toured three that I liked and thought might be able to at least provide some respite care. In each case, I could not imagine my mother living there. After my little chat with Diane, I looked into a newer one she suggested and rated very highly. BeeHive is a 16-unit specialized memory care facility designed to look and feel very home-like. It is ideally located in Oregon just a few miles down the road from us, and about a mile from the nursing home where my brother resides.
Wayne and I scheduled a visit in early September before his trip to India. I was favorably impressed as I watched staff interact with residents. Compassion and respect were palpably present. We met Gina and Andy, two of the owners, and felt their pride of ownership and desire to serve their residents.
Standing on the sidelines, I watched one sweet lady receiving a hand massage. As the aide gently applied lotion and stroked her delicate hands, she looked into this resident’s eyes and spoke with her like she was a familiar friend. I knew in my heart this was the right place. A puzzle was in the works at a nearby table and I could hear one resident talking to another in friendly banter. Yes, I could definitely picture my dear Momma sitting at one of the tables, working on a puzzle and telling (or re-telling) one of her many tales.
After some discussion and prayer, we decided we would put down a deposit to reserve a place for mom. She is currently number four on their wait list. While it is still my heart’s desire to keep my mom at home with me until God calls her to her heavenly Home, I have great peace knowing I have another level of care reserved for her. My greatest comfort comes in knowing the One who is guarding our steps as He walks before us paving the way for whatever our future holds.
I know in my heart that my dear mother would skip along to heaven tonight if she could. Nearly every day she tells me so. Momma’s greatest comfort comes in knowing that Jesus promised He has a placed reserved for her in heaven.
This post was brought to you (a day late, I know) courtesy of Kate Motaung’s blog Five Minute Friday and the word “balance.” Writers set the timer for five minutes and then free write on the word of the week. Check out more great posts and find inspiration for writing here at Five Minute Friday.
Things have been quiet on my blog. Good sleep is rare. Interrupted at best. Most days I live life in a sleepy fog. In my exhaustion, I’m having trouble staying focused enough to write. A few of my friends have recently heard my silence and inquired as to my well-being.
My friend Sue wrapped me in a big hug on Sunday and told me that she was quite concerned. She had observed that caregiving seemed to be taking its toll on me, noting that I looked really tired. I was not the least bit offended by her basically telling me that I looked terrible. It’s really hard to cover up exhaustion. God knew I needed this confirmation of what I already knew. Sue’s concern and assurance of prayer meant the world to me.
Rita caught up with me a few minutes later and kindly inquired as to how momma is doing. This sweet friend is known for her ability to see a need and step in to help. I have been on the receiving end of her prayers wrapped in practical ministries of help. Her loving and thoughtful ways have often helped me find balance as a caregiver as she sits with my mom while I try to get some sleep, or hangout with my grandkids, or take my brother to a doctor’s appointment, or go out to dinner with my husband. Her kindness refreshes my spirit.
Yesterday I heard the familiar “chirp” of my phone indicating that I had received a text message. My heart smiled when I saw it was from my friend Barb – also my sister in Christ, and former co-worker (from way too many years ago).
“How are you and your momma doing? Haven’t seen anything on FB lately.”
It’s been more than 20 years since Barb and I worked together, but we’ve managed to keep in touch via Facebook, chats via Messenger, and occasional lunch get-togethers at a restaurant somewhere between my here and her there. It has been awhile since I’ve been able to get away and have lunch with Barb, but her little “I noticed you” via text meant so much. It felt good to sit in my favorite chair wrapped in a soft blanket and “chat” for a bit about what’s going on in our lives.
Amazing how a timely word from a friend can bring a little balance to your life when life feels weighed down and precariously listing toward one side.
This morning a message from another friend, Danielle, popped up on my phone.
You’ve been in my prayers a lot recently, especially since I haven’t seen too many posts about your mom. I know I didn’t post much about Tim as things got worse, so I’m assuming things are really hard right now.
She was right. Danielle knows firsthand what life as a caregiver can be like, as she takes care of her father-in-law in his struggle with memory loss. She walks this really hard road a few steps ahead of me and knows how to pray…and she does pray.
It’s not just these four friends who’ve helped me find balance. It’s my hubby who helps in countless ways, the friend who buys me a coffee on a whim, or the one who pops a surprise care package or a sweet card in the mail. Or the thoughtful neighbor who recently rang my doorbell and asked me to point him in the direction of something that needed to be done in my garden.
I’m so thankful for each and every one of the wonderful people God has put in my path. Through your prayers and acts of kindness, God refreshes my soul with “oasis moments” and helps me find balance in my life as a caregiver.
Our son Matt and his family are hosting our family’s Thanksgiving celebration this year. This is the second year they’ve hosted us in their splendid home set on the bluffs of the Mississippi River in Hampton, Illinois. I enjoy helping out in their spacious and well-appointed kitchen.
I am thankful my sister is hanging out with mom so Wayne and I can get away from the responsibilities of caregiving for a few days.
What a blessing. God bless her.
On Sunday my daughter mentioned she is bringing the pies…lots of pies. I hear there will be pumpkin, French Silk, and chocolate pecan. On Monday she stopped by my house to borrow a few extra pie plates and Tupperware pie carriers.
Lord, help me.
Knowing Beth will be the bearer of pies made me wonder what I would be bringing. Other than an email asking for my stuffing recipe, I hadn’t heard whether I should bring anything. I sent my son a text which read
Did I miss a memo on what to bring for Thanksgiving?
His reply –
Just yourselves! 🙂
Wow! Another life change happened when I wasn’t looking. Not cooking anything for Thanksgiving?
When did that happen?
Wasn’t it just yesterday that THIS happened?
I found these photos while working on a long overdue project of creating some family photo albums. Matt must have been 4 years old and Beth almost 2, so it must be 1981.
I love everything about these memory evoking photos. The teeny tiny kitchen in our first house on 49th Street. The hand-me-down kitchen table and chairs from my in-laws. The 1950’s wallpaper. The orange tiles on the kitchen floor. Our tiny refrigerator barely had room for the turkey to thaw.
At the corner of one photo I spied the shelving Wayne custom built for our itty-bitty kitchen. The shelf now has a couple of coats of blue paint on it and sits in a place of honor on our three-season porch holding memorabilia of years past. As I examine the photo below more carefully, I see on one shelf a turtle cookie jar (I used to collect turtles), which I have since passed along to my son.
Thirty-seven years later, I still use that very same turkey roasting pan…and the brown-striped kitchen towel!
I love Matt’s facial expression as he examined his messy little hand after helping stuff the turkey. I think we need to recreate this photo.
And my little blonde sweetheart Beth! Look at the cherubic face of my little helper. Be still my heart!
These old photos have taught me the importance of capturing images of special moments we have together as a family. Tomorrow we will have Matt and Beth and their families gathered together in one place.
And I will have a camera.