The Morning Routine
Mornings prove harder and harder each day as our mom’s advanced dementia slowly progresses and her joints and muscles become more rigid, more stiff. We know it is painful for her and that a bed-ridden existence is looming. Until then, movement is key. A fresh pot of coffee is brewed. Our mom has always been and is still enticed by the aroma of a hot cup of coffee. The smell is something we know she recognizes and that it is a simple pleasure she still gets to enjoy. It is as much a part of her morning routine now as it was when she was well.
When her caregiver has prepped her for the physical act of getting out of bed (an act we all take for granted every single day), they use bed pads to pull her to the side of the bed along with a series of maneuvers to get her to the edge and ready to stand. Next, they make their way to the bathroom for a fully-assisted toilet and shower routine. This process is slow and done with great caution as her balance has grown unreliable and a fall would be catastrophic at this point.
MUSIC: Playing music is supremely beneficial and a part of the daily routine. Our care team has found music time to contribute to reduced anxiety and brings forth a sense of calm and focus. Music might be playing during a meal time, a bathroom break or one of her daily walks. (Weather permitting…)
Meals are fully assisted. Along with breakfast, our mom’s daily vitamins and medications are crushed with a pill grinder and mixed into apple sauce or yogurt. The only thing our mom does independently anymore is bring a cup with a straw to her mouth to drink. She still eats well and appears to have an appetite. However, if she were full, didn’t feel well or was simply not hungry, we would never know. We have not heard the sound of her voice in over a year. Recently, our mom began struggling to swallow liquids without choking, a problem common with dementia patients, so now we have to thicken her liquids with something called Thick-It to help her swallow with ease.
After breakfast, a potty-break is taken as the second of her many scheduled visits to the bathroom. An elevated toilet seat has made all of the difference. If the weather is cooperating and the sidewalks are clear of rain, snow, and ice, they will go outside and take a walk. If conditions are questionable, they will do laps inside and her caregivers will provide massage and physical therapy.
This meal is provided along with allergy drops and June’s favorite tea or water. All of which are thickened. These days it is not uncommon for June to take a nap on her chair immediately following lunch. You can imagine the amount of effort it must take to do things like stand up out of bed or walk from one room to another.
TV Time and Relaxation
Most of June Bug’s time is spent on her dual-motor recliner. This high tech chair can take her from a completely reclined position all the way to a standing position. It has been a game changer and improved her quality of life and the care team’s ability to get her up without adding extra strain on her or them.
Every day, RSO Cannabis Oil is administered on a piece of banana to aid in easing anxiety and pain relief. Our mom is peaceful and mostly comfortable. We plan on implementing CBD in other ways as soon as Lauren is done getting schooled at MedMen.
Dinner and A Show
The final meal of the day occurs around 6:30pm. After she is fed and freshened up, the care team will end the day with a movie. If our mom is enjoying herself, bedtime might not occur until 10pm. Of course, this time is a moving target, just as it would be for a baby or small child.
The Night Time Routine
At the moment, our mom still sleeps in her own cozy bed. However, we aren’t sure how many more nights she has in her bed as it is getting increasingly difficult to get her in and out each day. We have a hospital bed on hand for when the time comes to make the transition. (Medicare covers the cost of the hospital bed.) In the meantime, getting into bed is hard, requires the strength of her care to help maneuver her so she is comfortable and, in time, this adjustment will be a two-person job. I am on call when that time arrives.
Over time, your body becomes a mere vessel as the brain stops functioning. It is as if the brain and body are completely disconnected from one another.
Many folks, including our mom’s doctor, will tell you that she has no idea what is going on. I don’t agree. I believe that our mom, although she can’t communicate in any way, still understands. Our care team communicates with and talks to her. They prepare her for every step she takes in the day. She is in a safe space where patience and communication are the foundation for the quality care she has with her team. I thank my own God every single day for them. Until she crosses to the other side, we will continue to care for her in this fashion and quite literally live for her while she is alive.
You all are doing a magnificent and loving job of taking care of your mom.
Proud of u and your siblings, the apple does not fall far from the tree!
Kelly E says
What incredible women and daughters you all are. My heart goes out to you.
Norma Hinsdale says
So proud of you and I know how she felt about you so you’re living up to and beyond her expectations. God bless you and your beautiful family. I’m just not brave enough. 😢 love you.
Joanne Donoghue says
Michelle, thank you for sharing this blog with us. In the midst of tragedy, beauty is shining through. What a great family your mom has raised and must be so very proud of. Wish every family struggling with this disease would have the ability to provide such wonderful care for their loved one in their own home. Thanks to you and Lauren and prayers and peace to June and all of you. I will definitely be sharing with the team and checking back on your continued posts! Peace