[Back in February 2022, I wrote up the original post A day in the life of a Multiple Sclerosis caregiver. Angie has secondary progressive Multiple Sclerosis, and thus her caregiving needs change over time. I thought it would interest you see see what two years of change look like. So, below is the original posting updated to our daily life today. The edits might make it a bit confusing but they help you see the changes that have occurred. Main things you will notice is I now provide more assistance with dressing and showering as Angie has lost significant strength and mobility in the past two years and it takes us much longer to prepare in the morning and evening.]
I have received quite a few questions recently about what it is like to be a caregiver for my wife who has Multiple Sclerosis. After speaking with Angie, we have agreed to give you a very transparent glimpse into our lives. So what does a typical day look like for me as a caregiver?
WAKE UP ROUTINE:
Our alarm goes off at 6 am to start our day. Our alarm goes off at 6 am most days, 5:30 am on Sundays and Shower Days with early meetings. We need to be up that early so I can be fully focused on work by 8 am or to leave for church on time. I make a quick bathroom break while Angie puts on her glasses and takes her morning medications. I then use a Bestcare SA400E Stand Assist Electric Sit-To-Stand Lift (Hoyer style lift) to help Angie from our bed to the toilet. I lift her to a sitting position, put the lift belt on her, and help her balance until the lift has her up and stable then we go to the toilet. While she is on the toilet we take off the lift belt and move the lift out of the way. During this time, I help change her incontinence underwear and put on her pants/shorts/skirts then she changes from her nightgown to bra and shirt for the day. While she is on the toilet and changing clothes, I get her socks and pants for the day and place them on the bed. I then bring her power wheelchair into the room from where it was charging overnight. During this time, I help change her incontinence underwear, put on her pants/shorts/skirt, and change from her nightgown to bra and shirt. While she is finishing on the toilet, I get a small table set up with her shoes, socks, and foot lotion. I then bring her power wheelchair into the room from where it was charging overnight and move her phone to a pocket on the wheelchair arm. Once that is done, I sit down and check my personal and work email, work slack, and social media on my phone. I have 15 to 20 minutes to start my day while Angie is preparing for her day. I then jump in the shower, get dressed, and get ready for the day. When Angie is done with her morning bathroom break, hairband, and deoderant, then I use the lift to transfer from toilet back to the bed to her wheelchair. While she is on the bed, I lotion her feet then put on compression socks to help keep her feet and ankles healthy while she is in a wheelchair all day. Then I put on her pants and shoes for the day. Once that is completed, I go shower and get dressed for my day. While I am doing that, she finishes adjusting her clothes, puts on deodorant, takes her first medication of the day, and works on her hair. After my shower and getting dressed for the day, Once we are both dressed and prepared for the day, we transition to breakfast.
(On shower days, the morning routine takes longer.
Angie takes I help Angie take her clothes off on the toilet then I use the lift to transfer her to a special shower chair. I roll her into our roll-in shower. I help wash her back, bottom, lower legs, and feet as she cannot reach them now. She washes the rest of herself. While she is showering, I respond to work messages on my phone I prep things for my shower and talk to her about our day. I then help dry her off completely and roll her out of the shower. I have to help her get fully dried. Once dried, I help her get on her bra, shirt, and incontinence underwear. We then use the lift to transfer from this shower chair to the bed and start the dressing routine like a normal morning. Once dried, I help her get on her bra and shirt. She then works on her hair while I put on her incontinence underwear and pants. We then transfer to the main wheelchair and finish the morning routine, afterwards I take my shower and get ready for the day.
I use the lift again to transfer her to the power wheelchair. While she rolls over to a mirror on the back of our door to check her hair, clothes, and such, I go in and start prepping breakfast and her morning medications. Angie uses special eating utensils that she can grip more easily. While I am finishing breakfast preparations, Angie rolls into our breakfast table. I finish my breakfast before Angie does. I then read our daily devotion and we will discuss it as she is finishing breakfast. I will once again take 10 or 15 minutes of time to respond to work email and slack messages on my phone. After breakfast and devotion, Angie rolls back toward the bathroom and I clean up breakfast.
(On Saturdays, I have to refill all her medications for the week in her daily pill containers.)
POST BREAKFAST ROUTINE:
Angie rolls into our bathroom with her power wheelchair. With its height adjustments, she is able to postion herself in a way she can brush her teeth, wash her hands, put on jewelry, and prepare for her day. I wander in soon after she begins to do my own morning preparations. When she is done, she rolls back out in to our bedroom and I use the lift to transfers her from the wheelchair to the toilet again. I then go to our other restroom, if needed, and prep my office for the workday and her day. I refill both our water bottles. I open the window shade near her desk in our bedroom and set up my temporary partition for my home office in our living room. I also log into my work laptop and prepare for morning meetings or respond to more messages. Once Angie has completed her bathroom back, I use the lift to transfer her back from the toilet to her power wheelchair and remove the lift belt. Angie now has her own independence.
WORK MORNING ROUTINE:
While I am working from home, Angie is on her own unless she needs my assistance with something. My only caregiving duties then are if she drops something she cannot pick up with her grabber, if something is on a shelf or in a cabinet she cannot reach, or if she needs a restroom break. Otherwise, we have built and organized her house so she can refill her own water bottle, she can get to snacks, and she has a wheelchair-accessible desk and work area.
At lunch, my caregiver duties return. Angie rolls into our table while I prepare our lunch. We usually listen to audio books while we eat. After lunch, Angie rolls the wheelchair to the side of our living room and I use a lift again to transfer her from the power chair to the toilet. After her bathroom break, I use the lift to transfer her from the toilet to an accessible lift recliner. She rest in afternoons and takes a nap. After lunch, I return to work.
WORK AFTERNOON ROUTINE:
While she is resting and napping, I do not have any caregiver duties. When she wakes, she will want a restroom break. I again use the lift to transfer her from the recliner to the toilet. Depending on our evening plans, I use the lift to take her to her power chair or back to the recliner.
Evening plans vary and determine my caregiving duties. Evening starts with me making dinner. Sometimes we relax and eat sitting in our chairs, watching a show with dinner. At times, we have guests over so we have dinner at the table and then an evening with friends or family. At least once or twice an evening, I will assist with transferring her with the lift from the power chair to the toilet and back. I might also assist Angie if she has projects or other things she is working on that she needs my hands and mobility to help with. A weekday evening usually has me working on chores like house cleaning, laundry, dishes, meal prep for other days of the week, or a larger house project/repair.
Night time is a reverse of mornings. Around
9:30 or 10 pm 7 or 8 pm, Angie rolls into the bathroom to start her nightly routine. She picks out a shirt for the next day, brushes her teeth, and takes evening medications. When she is done, I use the lift to transfer her to the toilet. While she is there I move the power chair to another room to be charged. I then prepare the bedroom for us, get out clothes for Angie as needed, and prepare myself for bed. Once she has completed her bathroom time, I transfer her from toilet to the bed using the lift.
Well, that is a typical day for us. If you have any questions about it or area curious about other aspects of caregiving, let me know.