One of the best things I do is keep a journal. I open it up write the date and make notes: maybe noting Marjory’s blood pressure, my blood pressure, ideas for projects I want to do, to do lists for house chores, doctors to call, those that I did call, appointments I make, and information I might forget. I put in it who called-if important, who visited, etc. I have done this for years, even before Marjory came to live with us. When it gets full I keep it for awhile until I have time to go back through it and copy anything I still need to keep, putting it into the new journal.
Sometimes I tuck important papers into it. I keep it with me all the time because I never know when I will need to write something down. As any older person knows, the mind does not always keep things or at least keep things straight! Caregiving makes me more susceptible to forgetting things so it has really been a support that makes a difference in managing my own life as well as Marjory’s. Don’t get a huge journal with more pages. The smaller size is lighter to carry and fits in my backpack.
And, yes, I also carry a backpack because I take my ipad with me, my password journal, a book to read, meds I might require, a small fold up umbrella, phone, billfold, and a few other things. That way I don’t have to stop and think what I need when I take off somewhere. I keep it all ready to go. When my life gets busy I stay organized and the days usually end well. If I work at home on my ipad, I just toss my backpack near my feet on the floor beside the couch where I work. Stay tuned. I will have you organized in no time.
Today I have some things on my to do lists that I’d like to get done, but I find myself watching our patio garden as the bees, hummingbirds, and butterflies frolic around the sugar in the hummingbird feeders. I took time to get a spray water bottle and spray off the tops of the feeders where the bees swarm, hoping they will leave it and go find some pollen somewhere so the butterflies and hummingbirds have better access. I don’t know if that will work. It is just something I thought might.
So these things I think I “need” to do get pushed back a bit. Then lots of humming birds fly around playing or fighting – how does one know? I watch. There are lots of tiny birds in the migration and they are amazing to watch. I am just wasting time, I tell myself. I should get busy. Then this blue winged butterfly comes to drink. I sit back down. I have to argue with myself to stop and enjoy these things that only come once a year for us to enjoy.
I am a caregiver for my mother-in-law, who just turned 100. She is not difficult at all. I enjoy her living with us and spending time with her. Yes, I am responsible for more laundry, food prep, disinfecting equipment she needs, getting her up and down from recliner to walker to wheelchair to toilet and back, getting her dressed, in bed, and up again. And yes I have hobbies that I enjoy. I do some appliqué with fabric, knit, sew, bake, work in our full, but small garden, exercise, and play my guitar. There are many times in my day that I have to decide which of these I will do.
One thing I often forget about is time to do none of these things. Taking time to enjoy what presents itself in the moment. Time to just stop and admire what God has created. When I think of the short seasons we have for so many of these tiny events, it makes me wonder what I’ve missed and makes me pay attention to the here and now.
Caregiving for a loved one is just one part of my life. I have to practice making the small moments count so it does not consume me. And though we work around Marjory’s daily needs, if we remain flexible we find time to relax, pursue hobbies, and get chores done. Sometimes my nails look ragged for a few days before I take time to tend to them, and sometimes we have peanut butter sandwiches for dinner. Thank goodness Marjory loves those too! And we also have our Senior Helper, Kelci, who comes three times a week to help out. Caregiving can be a viable option for your family, if you can be flexible, enjoy things you can do at home, and find pleasure in the small moments.
A caregiver does not know from day to day, what they will face. Everyday is different. And though, in our home, life for us basically revolves around Marjory, it does not mean we cannot make plans, that we just have to sit and wait for her to need something, or that we cannot have a life of our own. We can and we do.
It took me awhile to understand that Marjory does not need us 24/7. Well she needs us to be around but not spending all our time directly with her. In the beginning, I felt guilty if I was not engaged in taking care of her in some way. I learned to actually reclaim some time for myself. When Marjory naps, which is often, I have learned I can relax, take a nap of my own, read a book, work on my writing, shop on line, meditate, etc. It is true that we don’t know how long she will nap, and sometimes she wakes up and wants to get up to go to the rest room “right now”, however more often she might sleep an hour or three. She has days she is more awake and alert and other days she is more tired and does not engage much. One thing I have learned is that if she seems alert and I get out a game to play and if she does not flatly refuse to play, she wants to play.
Her refusal is to say, I want to go to that chair – her recliner – and I know she just wants to rest or nap. However, if she hesitates, I recognize that she is interested but might feel confused. So I slowly put the “game” before her and show her what we will do. I guide her through it and play “with” her to match cards, find one that is the same, roll the dice and count the dots, or throw the hoop over the bowling pins(a plastic game). We might toss a balloon, or a tennis ball, or a wad of paper back and forth, or into a basket. She will play for about an hour before she is tired and wants to rest. Engaging with Marjory means a lot to her. You can see it in her face. Sometimes when she is more alert but maybe not enough to play a game, I roll her to the patio and we enjoy the morning breeze, the flowers, sights and sounds of the street and the woods behind us. Because I am not directly engaged, I might get out my guitar and practice. She loves that. Just being outside offers her a different sensory experience than being inside. I might read to her from Shel Silverstein’s poetry or Alice in Wonderland. If you use the same books over and over she becomes familiar with them and the experience feels good to her.
If she is not alert and wants to sit in recliner to rest or nap, I might turn on music or the television with little or no sound to allow her to connect with something less direct, and I go to my list. My list is a list of things I think of during the day that I want to do. It might be to work on my blog, to learn more about making videos, make a new casserole I saw on line, work on getting stains out of a shirt, or chat with one of my kids on line.
When Marjory is awake and engaged in a television program she talks about what the characters are doing and laughs at odd antics or things that look odd to her. During these times that she is engaged with a show, I also do not need to be directly interacting with her and I can get laundry done, prepare food, clean the house, sew/knit, play a game on my device, or enjoy the show with her. Depending upon the status of your loved one’s dementia, she may sleep more or be awake and alert more. The time you have to engage will be different each day and less and less as time goes on.
Keeping a list of things you want to do, organizing what that requires on a shelf that is out of the way but where you can easily get to it, will keep you feeling the freedom of having some time to yourself. Just looking at the list, knowing you can access what you need easily, or ordering what you do need, keeps your brain producing dopamine, serotonin and endorphins that help you feel joy, calm, peace and satisfaction about your life. That is more important than you might think and it can be accomplished by simply opening a tablet, journal, or getting a notecard and listing things you want to do. Then as you pull together the things you need to accomplish these “projects” your brain continues to produce these chemicals that feed your happiness. It really takes so little. Then as you take out items to begin a project, your brain pours contentment into your day. Keeping each project in a basket, box, or bag, makes each one easy to take out and put away, to stick beside a chair where you work or beneath the coffee table – my favorite place. You can trade out projects as you feel like it and have different amounts of time.
You must make this a priority for your health. There is more to good health than exercise and eating right. Keep your brain in the mode for production of good chemicals. Make your list. Prepare to engage with self time. Bring the joy.
This amazing banana bread, with a cup of coffee, or a dip of ice cream, can give the caregiver a perfect time out during the day. Maybe for breakfast, or a late lunch, with a friend over for a cold iced tea one afternoon. I found this recipe on “Jenna’s” blog. https://butternutbakeryblog.com/chocolate-chip-banana-bread/. You can always freeze slices for future enjoyment or share the leftovers – if there are any.
If you enjoy baking, then bake something you will thoroughly enjoy. Plan a time when you can sit for a while and savor every bite. Caregiving is about taking care of a loved one, but it must be about taking care of yourself. I personally do not eat a lot of sweets and I have to substitute non dairy and gluten and nut free ingredients, but there is so much available to do that.
You might want to have a tea party with your loved one this fall on the patio or front porch. Life is better when you stop and take time a couple times a week and just enjoy each other, good weather, and soon the turning of the leaves.
11/2 cups (380g) ripe and mashed banana (3-4 medium bananas), measured
1/2 cup (100g) packed light brown sugar
1/2 cup (100g) granulated sugar
1/2 cup (112g) unsalted butter, melted (oil or nondairy butter)
2 large eggs
1 tsp vanilla extract
1/2 cup (120g) 2% Greek yogurt (sour cream also works) (non dairy is available in both)
11/3 cups (172g) all-purpose flour or 1-to-1 gluten-free baking flour (due to severe nut allergy, I do not use almond flour but an alternative)
1 tsp baking soda
1/2 tsp salt
3/4 cup (140g) mini chocolate chips + a handful more for sprinkling on top. (Chocolate usually contains dairy, so I get dark chocolate or baker’s chocolate(
Oven at 325 F. 9X5 loaf pan (or 1.5 lb.) use parchment paper.
lightly mix flour, salt, baking soda
melt butter-mix well with sugars
add all other wet ingredients (mashed bananas)
fold in dry ingredients JUST until mixed- no more
lightly fold in chocolate/nuts/etc.
pour into pan and bake 1 hour or 1hr + 15 min. Use toothpick to check for doneness
cool completely before storing in air tight container.
There is more specific information at https://butternutbakeryblog.com/chocolate-chip-banana-bread/
Let Jenna know if you love this and let me know if you make it!
“Caregivers Can Naturally Involve a Loved One in What They Do”
I have found over the past three years as a caregiver to my 100 yr. Old mother-in-law, Marjory, I rarely have to come up with things for her to do when she is not napping away in her recliner. Most of these involve doing things I enjoy with her help. You have to focus on what your Loved One CAN DO.
Marjory can no longer walk because of spinal stenosis. She can stand quite well, but putting her weight on one foot at a time is just too difficult. I say that but once in a blue moon, after standing at her walker, she will take off (albeit slowly, with me holding on to the back of her waistband) across the floor, around the island and to the bathroom. I have absolutely no clue how this happens. Then she has days when she can barely stand up even on both feet.
“No matter that I wonder why,
There are days she can defy,
The logic of what she can do,
I just observe what might ensue.”
I love being outdoors in most any weather. I love having plants to look after. Marjory loves this as well so we make good team gardeners. This year we started some flowers from seed. Marjory can help scooping new soil from bag to pots, planting seeds, watering, and then watching and waiting for those first tiny sprigs to reach out to us. It was a daily ritual during that time to examine the pots closely and talk about how much longer we will have to wait.
Now this may sound odd, but I like cleaning house. When I do, Marjory looks across the room and points out things she sees on the floor that need vacuuming, straightened, or moved to a different spot. I always take her advice. She always kept a spotless home. And when I embroider or work on an appliqué, she gets involved as we spread out fabric and brightly colored threads to make choices about both. She has a good eye for color and always makes the best matches.
Both of us love books. She has fallen in love with Shel Silverstein and Alice in Wonderland, especially if I read it to her aloud. She likes to watch local news, something she has done her whole life and then she has a special fondness for old westerns. We love those as well and it is fun to watch together. Music is another joy we share. She loves to listen when I play my guitar and sing and sometimes joins in. We also listen to country western music from the early 1900’s on our Echo Dot.
We both enjoy watching baby and pet videos on-line and keeping up with family through facebook. There are times we play a matching game with a special set of cards and though we tried painting with acrylic and water colors, neither of us enjoyed it at all. I love to knit so I have knitted Marjory a huge shawl for winter or for air conditioning. It is difficult for her to lift her arms into a sweater so this was the right call. She told me I needed to knit some clothes for a little teddy bear someone gave her and she helped me decide on a pattern and colors. I knitted her a pair of socks and hats, and since her signature color is pink, most things I knit are some shade of pink.
Often when napping, Marjory’s arms and hands move through the air like she is knitting or hand sewing. It makes me smile. We have a ring toss game that we enjoy when someone comes over, and we have played balloon volleyball. Those are fun times. I have been known to dance with her in her wheelchair and she loves to push the limits when I twirl her around. She and her husband square danced for more than 40 years so I know dancing is in her blood!!
My hope is that caregivers will simply be a bit flexible and include their loved one in what they do naturally and enjoy the time they have with each other.
On nice days I take Marjory outside in her wheelchair for a walk. We like to walk around the garden beds where this time of year the flowers thrive, the humming birds stop in their migration south, and the bees buzz. This year many who choose to work the gardens planted zinnias. Marjory and I love them. Their color is so vibrant and varied. When I was young my own dad always planted them. He loved color, so I come by it naturally.
Our friend, Helen, has invited us to cut as many of her zinnias as we want and we do just that. Marjory loves to arrange them in a vase. We both love the joy in the colors these bring into our home.
Yet, Marjory is intrigued with the hill where the city requires us to plant “natural plants” that are often called weeds. We seemed to be blessed with the prairie bundle flower. Though we have planted a variety of prairie flowers and grasses, this bundle flower is prolific. Honestly, I love the look on that hillside. The seeds are so dark brown and an amazing tangle that, if flattened out would probably be a Fibonacci Spiral.
Last year our local zoo came and picked a lot of the bundle flowers for their giraffes. It is similar to the acacia trees in Africa that are a natural food for giraffes there. When the zoo can get the bundle flower, the giraffes find it a real treat. This bundle flower, in North America, is a perennial legume with curved seed pods.
Today I also cut some of the weeds and put them in a vase. Enjoy our photos!
Baking brings me joy! Baking also brings weight gain, so we always share with neighbors.
”A Day in the Life of One Caregiver”
A lot of my day is filled with caring for Marjory. Because of her lower spine issues, combined with her dementia confusion, she cannot be left alone or she might try to stand up alone. Not often, but sometimes. She actually can stand up without help on some days using her walker, but on other days she is unable to figure it out. She cannot walk however and falling is always the scare. She can no longer put weight totally on one leg to enable walking.
So, I get her up, dress her, get her into her wheelchair, push her to the kitchen table where she might read or look at a magazine, her cards that are in a box, or something else I put there, while I wash up, tie up trash bag with night time diaper, throw any wet bedding into washer, and make her breakfast. If she does not sleep in, we have breakfast together and she enjoys that. She loves that. If she is caught up in reading(I will talk about that in another blog), I might pull up my ipad and check messages, read the news, or send out an order for something I need.
If Marjory is not otherwise occupied, we might look at baby videos and make comments (anything that motivates language), look at someone cooking or other photos or videos that catch her attention. We share thoughts, converse some, laugh together, and talk about what the weather will bring today. Weather is a subject that is relatable because it is right out the window and she can make connections. The fun part about our weather is the fact it is so changeable. It may look like a storm is coming up early and then the clouds disappear and the sun comes out, while later the clouds build up again. I make sure I get up and go to the patio doors and look out. I comment that I may have to water our flowers since it looks like the rain is not coming, or that it will be too hot to go out for a walk today. We make connections.
Marjory is often tired and wants to go back to sleep after breakfast so I transfer her to her recliner. She may want to stay in her wheel chair and look out the window where we have flowers and lots of birds that visit, play monster card match with me at the table, or watch me make something in the kitchen. It is difficult to know what she wants to do but I can figure it out. I think this is important. Giving her choices, making the effort to communicate, and simply giving her attention, makes her happy. We often listen to western music from the early 1900’s, watch westerns, or Little House on the Prairie. Watching the same shows, over and over again, give Marjory a familiarity with the characters that she enjoys. She makes comments during shows, to no one in particular, they just encourage language. Some days Marjory sleeps a lot. Other days, she is more aware and making connections. More sleeping than awareness anymore.
About 5 hours after breakfast, if she eats well, we have a good snack like a little peanut butter and jelly on a couple of crackers and milk or a protein drink (she only likes Premier brand). If she did not eat well, we might eat sooner and have a more balance of protein, vegetables and fruit. Unless she is napping. We do not wake her from her naps. She gets really involved in her dreams and takes a long time to come out of them. She often wakes talking but not to us. Dinner time and amounts again depend upon how much she has eaten already that day. If we aren’t sure, we give her several choices and tell her just to pick what she wants to eat. If she is not hungry she will say she does not like it. It means she does not feel like eating now. And that is ok. Whatever works for Marjory is what we do.
We basically live our lives around Marjory’s needs. I only have a few parameters. We get ready for bed at 10:00 at the latest because I have to have my sleep or I do not function. It is a habit after three years with Marjory and rarely do I get rebellion. Sometimes she wants to watch the weather that comes on with the local news at ten o’clock. I give her that. It is not every night. I try to take naps daily when Marjory naps. That, and regular exercise is how I stay energized.
Getting ready for bed, for us, is transferring to the wheelchair, to the toilet, changing into pajamas and night-time “undies.” From there we go straight to bed. She stands and transfers to sitting on the bed but it takes both my husband- Calvin and myself to lift legs and turn her at a 90 degree angle. If you tell her to lay down, she will lay straight back across the bed. You can show her how to do it but she cannot seem to figure it out. Once she is in bed, I place the external catheter under diaper, wrap her feet(she likes that because her feet get cold-even if she wears socks), pull up the two bed rails, and stuff a pillow between them(because if you don’t she can get her legs between them so they hang down fro bed-don’t ask me how- I don’t know). After that I pull up her covers, bend over and look her in the eye and tell her I love her and kiss her cheek. Then she says “I love you, too.” And she kisses my cheek. I turn off the lights and she says, “It’s dark in here.” I say, “Don’t be afraid.” We are both just teasing and we chuckle.
Somewhere during the day, we try to get to the rest room at least twice to keep dry. She will ask to go if she needs to have a BM, but otherwise is incontinent. She actually may ask to go outside because in her mind she lives as a little girl on her family’s farm and they used an outhouse. Marjory is 100 years old.
Between spending time with Marjory, napping, and exercising, I find time to write- I just finished my book on my personal experience as a caregiver- I have different sewing projects I enjoy and I love to cook and bake. Some of this happens because we employ a Senior Helper@. Honestly, my life is fairly balanced and I am happy and content.
Marjory has medications prescribed by her doctor that thin her blood, manage her blood pressure, address her pain, and support a healthy bladder. Most of the time she takes her medications without fanfare. If she is not well, she may clamp her mouth shut and say, “I’m not taking those.” Sometimes she adds, “I’ve never needed those and I don’t now.” When in ill health, usually a Urinary Track Infection (UTI), it takes little to overwhelm and confuse. I usually give her some crackers and milk with her medications, but if she refuses to take the meds, I bring on the big guns, often called cookies.
Marjory cannot swallow the pills without chewing them up. That could be because her mind lacks an understanding of the process of swallowing, or it could be her muscles are weaker and it is difficult to swallow. Whatever the reason, she crunches those pill up before they go down the hatch.
Once in awhile, Marjory will chew and then take the larger pieces out of her mouth to discard. If I can get her to take several bites of a cracker with the pills, it usually eliminates spitting those larger pieces out and she swallows them with the crackers and milk. There are days she will not eat the crackers so I bring on the cookies. Cookies work magic for a dementia patient just like they do for kids. I try to keep special cookies on hand for just this purpose.
I have tried crushing the pills and stirring them up in her milk, juice, and pudding, but so many pills cannot be crushed to powder. The tiny bits are still there and they often have a bad taste. Also if they are crushed into food, I have to make sure she eats all of that food. Some meds can be obtained in liquid form and she takes those easily with a chaser of milk.
Once in a while, Marjory simply refuses to take the meds and will not open her mouth. Nothing I say or do will change her mind. Even cookies don’t work. She will accept the cookie gratefully but no meds. I did go through a period when I worried about this. I have since come to the conclusion that, if she refuses to take meds, I simply allow it. I mean, what can you do? Wrestle her to the floor and pry her mouth open? I just put the pills back in the pill holder and hope she will take her meds later. Sometimes she does and sometimes she doesn’t. What I don’t do is get angry, demanding or raise my voice. I don’t shame her, scold her, or try to explain why she needs to take them. I just let it go.
There will be a day when she is unable to take any meds. For now, as she is still capable, I provide wait time, good cookies, and tell her I will have to perform magic for her to open her mouth and swallow her pills. I summon my inner Ali Baba and waving my magic wand say “Open sesame.”
Grands and Great GrandsKelci, our Senior Helper is family too!!!
Our 100th birthday celebrations for Marjory are over, except for the awesome “card wall,” which we will leave up for several weeks. We had a party for people who live in our condo building and another for family. Marjory has no clue what it means that she is 100 years old, nor does she understand what a birthday is. She did know, however, that she was the center of attention for a couple of weeks, people took time for her, they had “conversations” with her, and she received mail with her name on it.
It did not take a psychologist to recognize that all of this pleased her. She enjoyed it because it was done in a way to not overwhelm. I had prepared her for family by encouraging her to look at her photo album I keep beside her recliner. It contains pictures of her family. She had 4 grandchildren and two great grandchildren attend. I took a photo with each of them with Marjory. I affixed them into a collage, on one page, with names, and then printed it out. We added this to her family photo collection.
She does not remember her family but there is something different about her when they come for a visit, as opposed to our neighbors visiting. And she has the same look on her face when she views the photos of family. Something deep inside connects.
So when she looks at the fifty cards taped to the wall, I think she does remember some of the good things she felt during the week, but if not that is ok too. It does not matter what your age is, if you have dementia or not, or even that you require a calm environment. When a person is given some specialized attention, a focus that is just on them, and the support of someone who loves them, it is good.
Our 100th birthday celebrations for Marjory are over, except for the awesome “card wall,” which we will leave up for several weeks. We had a party for people who live in our condo building and another for family. Marjory has no clue what it means that she is 100 years old, nor does she understand what a birthday is. She did know, however, that she was the center of attention for a couple of weeks, people took time for her, they had “conversations” with her, and she received mail with her name on it.
It did not take a psychologist to recognize that all of this pleased her. She enjoyed it because it was done in a way to not overwhelm. I had prepared her for family by encouraging her to look at her photo album I keep beside her recliner. It contains pictures of her family. She had 4 grandchildren and two great grandchildren attend. I took a photo with each of them with Marjory. I affixed them into a collage, on one page, with names, and then printed it out. We added this to her family photo collection.
She does not remember her family but there is something different about her when they come for a visit, as opposed to our neighbors visiting. And she has the same look on her face when she views the photos of family. Something deep inside connects.
So when she looks at the fifty cards taped to the wall, I think she does remember some of the good things she felt during the week, but if not that is ok too. It does not matter what your age is, if you have dementia or not, or even that you require a calm environment. When a person is given some specialized attention, a focus that is just on them, and the support of someone who loves them, it is good.
