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KosAbility: ALS Sucks, part 2: Daily Life as a Caretaker [1]
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Date: 2023-01-29
That diary was composed in July 2022, the night when Charlie decided to go on hospice care. Charlie was diagnosed with ALS eight months earlier on September 27, 2021. Yeah, the doctors initially thought that all Charlie's problems were from a stroke according to an MRI. Did a KosAbilty diary about that in 2020.
The quick progression of the ALS is something I was not prepared for, but it stabilized for a time in the fall, or, so it seemed. Then it got worse. Charlie's diagnosis came with a dementia, which I had noticed for sometime. This is the reason that I started accompanying Charlie on all her doctor visits. She still shows resistance to the idea that she has dementia.
Where to start? I made a Facebook entry recently, taken directly from my sporadic journal entries:
Journal entry 11-19-2022 Charlie had trouble getting up out of the recliner, where she sleeps because it's easier to breathe, plus she has a hard time maneuvering her body on a flat surface. Charlie has a lift chair, (I jokingly call it the dump chair), to assist her in standing upright position. Her last night in actual bed was in August. Charlie has to be sitting in a reclined position in order to breath. But, this morning offered a new barrier. We got Charlie sanding up, but she was wobbly, even while I was holding her arm. She could not move her feet, especially, her left foot. She could not shift her weight onto the right leg and slide her left, even 3 inches. Normal transferring is to stand up, go two small steps over, turn 90 degrees, and sit into the wheelchair. After three attempts, I began clearing out the chair and the small table in order to get the Hoyer lift set up to make the transfer. Charlie didn't want to use the lift, so we tried again, and this time she was able to shuffle her feet to make the transfer.
Journal entry 11-25-2022 We tried to get Charlie settled in for the night, into her recliner from the wheelchair. I helped her to stand, but she was having trouble moving her left foot. We decided to sit back down in the wheelchair and move the wheelchair just a little closer so all she would have to do is stand, then pivot then sit in the recliner. Seems simple enough, but Charlie has continuing, and worsening, transferring skills. Charlie stood up, while hanging onto my arm for support and balance, moved her left foot about 2 inches. That was progress, so she continued her transition by taking a step with her right foot and turned slightly. Now the wheelchair and the recliner were at 90 degrees from each other. Charlie turned 45 degrees; she could neither sit in the recliner nor go back to the wheelchair without turning her left foot either way. Charlie tried, oh how she tried! She put more weight on me, but I was at my limit. The only thing left was to ease Charlie down to the floor, back supported on the recliner base. As I moved furniture to allow the Hoyer lift, I spilled her tea. Shit. The recovery process took about 45 minutes: Get the Hoyer sling underneath her, the sling attached to the lift, Charlie lifted off the floor, the chair repositioned, Charlie set down in the chair, the chair tilted back, remove the sling under her lower half, the chair tilted forward and removed the sling and removed the sling from the upper half. It's a lot of work for both me and Charlie. Thank goodness that we were able to sit Charlie down on the floor easily. Charlie is losing the ability to transfer. We are making plans with the help of the hospice agency, but there are some things that don't get better. ALS sucks, as Charlie would often text me.... We are enjoying this time we still have; Charlie continuing with her painting and me, just taking care of the mundane things of daily living.
That Facebook entry was a cry......
After my Facebook posting, I came up with the idea of trying to describe just one day, a good day, in our existence of living with ALS. Then that day turned into many days...Ok, here we go.
December 1, 2022
Charlie calls on my cell phone to wake me, letting me know she needs assistance—she lost the ability to verbally communicate about nine months ago. The first thing is I have to go to the bathroom, and I mean now. I have a frequent urination problem that I'm seeing a doctor about; I hope it's not cancer. Then, I go to her chair in the living room, turn on a light, remove the blanket, and put her shoes on. Unplug the charger for the wheelchair, unplug the fan sitting on the TV tray, remove the melted ice and the tea to a safe location, move the tray over to where Charlie can sit up. Move the wheelchair closer. Charlie has the dump button. I stand with my left arm out to give her support. And I coach her, reminding her to spread her legs apart, lean forward in order to get her legs under her, and then stand tall and get her balance. (I have to coach her every time she stands.) Then, move her right leg towards the wheelchair, left leg, right leg, turn and with her right hand, grab the armrest of the wheelchair. Back her left foot and controlled sit. I can breath again, and I say, "Success!"
Charlie likes to keep a metal thermos glass with flaked ice from the local Sonic chain. She also likes to have 2 metal thermos glasses full of sweet ice tea, and a separate one reserved for when she is eating. I refill these thermoses. In this way, Charlie maintains enough fluids.
Charlie in her studio
I follow Charlie into the bathroom, I turn on the lights and the fart fan, I go in the shower area, turn and face Charlie. Charlie has grab bars on the wall opposite the toilet, and grab bars on the toilet attached on the seat and to the floor. The grab bars are stable when they have downward pressure, but a little shaky when side to side pressure is applied. Still, the grab bars help as a guide to help keep a person from falling off the toilet. I installed 3 different toilet grab bars before I found one Charlie liked. The safest, most sturdy one is a toilet chair with the bucket removed, but Charlie does not like it because she finds it hard to clean herself. Our bathroom provides the easiest transfers than anywhere in the home.
After the bathroom duty, Charlie likes to get ready for the day. Charlie has a NA (nurse's assistant) from hospice to help her shower 3 times per week, generally in the morning. I get the towels ready (six hand and bath towels, the extras are to prevent falls), the shower chair in position, and the shower knobs set on the hand held setting. The NA takes care of Charlie, assisting her with her shower, then with dressing for the day while I clean up the shower and take care of the towels. I help Charlie with dressing the other days.
Next, comes Charlie's AM medications.
December 9, 2022
Where was I?
.........oh, yea. Shit. ALS Sucks. And so does treatment of prostate cancer for the primary caregiver.
I was informed by my urologist either maybe surgery or six weeks of fives days per week of radiation treatment. The urologist set me up for a CAT scan to check lymph nodes and a bone scan, both to check to see if the cancer has spread out of the prostate. I'm waiting on the appointment for a radiologist. As it's looking like now, both my daughters are looking at leave of absence sometime in January. The prostate cancer will be a later topic for a separate diary. Maybe.
Now we can get back to morning meds. Charlie has a feeding or gastronomical tube (G-tube) that was installed in July. Charlie and I was thinking that the G-tube would help slow her weight loss and conserve her energy. Charlie had a painful surgery, much more so because the doctors cut back on the painkillers to keep the O2 blood saturation levels in the 90's. Charlie would not have been eligible for the surgery had we waited much longer.
At Charlie's instructions, the only time she will use the G-tube is for medications. Charlie tried to the G-tube for taking in water and nourishment, but she was nauseated after the first feeding. The nurse that we had at the time did not like the fact that I could use only one hand and Charlie was required to help me with the process of feeding. The nurse wanted to hook Charlie up to a feeding pump that requires one to be attached 14 hours per day. In fact, the nursing staff was insistent, so much so that she went ahead with the order of the feeding pump and supplies against our wishes. So we elected to go on hospice care instead of arguing to have Charlie's preferences observed. That was a gut wrenching moment for us.
December 14, 2022
This writing is going a bit slower than I first thought. I was thinking to give an example of day was easy, but the tale is looking like a series of journal entries every six days or so. Things are changing so rapidly and I get so little time to write. Oh, well, now where were we? The morning meds.
Our kitchen table is dedicated to Charlie's meds, G-tube supplies and 21 clean hand towels. I start the meds by gathering up the dishes we use out of the drain rack. The Miralax is kept on the counter because it has a sticky residue that requires water to clean. I get the big syringe and put olive oil on the rubber seal of the plunger. We use the same syringe for about a week. or until the seal no longer fits into the barrel. Next, I get the top off the manual pill grinder, which is mounted in an old drill press vice for easy one-handed operation. The ground pills are put into the cup with the Miralax. I fill another cup with bottled water, and mix the powered pills with a spoon. Next, I put the liquid supplements, the vitamin E, B-12, cranberry extract and marijuana tincture. We let the mixture set for about 20 minutes before administration. I assist Charlie with the blood sugar test. Charlie usually reads of 90 to 125 without any meds for diabetes. For that, we are grateful. Then, we clean the G-tube and opening with gauze pads and saline solution. Charlie goes through a bunch of gauze and saline solution to keep infection at bay. Charlie wears a bib to cover her pants, and while pinches the tube and undoes the cap while I give her the loaded a syringe loaded to with water to flush. She hold the syringe and the G-tube in place while I push the plunger. Then, Charlie pinches off the G-tube, we administer 2 syringe of meds and one more flush and Charlie caps the tube. After I clean up, we are done with the morning meds
December 16, 2022
We are trying to get Charlie set up for a point to point van service that can carry her wheelchair through a local government supported transit service called DART (Dallas Area Rapid Transit). Charlie and I went to downtown Dallas for the assessment. We are to be notified by mail in three weeks. We were picked up for the assessment at 11:30 am and got back at 4:00 pm. It was a long day and it was anything but Rapid. (Charlie found out she was approved after Christmas,)
where was I....
The morning meal, brunch, takes place anywhere from about 9:30 to 11ish. We rarely set an alarm to wake us up anymore, so the fluctuation and the days were we are visited for Charlie's shower can take place from anywhere from 7:00 to 11:00 AM.
Charlie meals consist of primarily of Velveeta macaroni and cheese, with added Velveeta cheese and Tillamook cheddar cheese along with whole milk. A box last three meals. I prepare the noodles by overcooking them for 16 minutes, drain and add the ingredients listed above. Charlie likes over sweetened coconut ice tea. I prepare a special glass to go with her meal because she has a hard time using a straw, and macaroni and cheese mixes in her cup when Charlie is eating. I will fix breakfast for me, generally, I have an English muffin , with 2 fried eggs and pepperjack cheese with a slice of fresh jalapeno and verde sauce. For the second meal, Charlie will have mac and cheese and I fix a big pot of something and eat leftovers all week. Charlie tries other foods that she likes, but after food goes in a blender, it is not the same.
December 17, 2022
Yesterday, Charlie had a bad day. We went through the morning routine of meds then eating as well, the NA was running late, to help with the shower and dressing to have Charlie resting in her recliner. Charlie wanted back in her wheelchair, was able to stand with help of the recliner lift and my assist to help her transfer, although Charlie was less steady than normal. (I feel like I wrote about this before) but when the time came to move her right foot, she could not. Charlie tried again after resting in the recliner. I noticed her new tennis shoes did not have the same traction as her old ones, so we swapped shoes. after several tries, she was not sitting all the way back in her recliner, so much so, I was afraid that she was going to wind up with on her the floor.
Charlie has fallen 19 times in the last 6 months. I should, at this point, talk about that.....But, allow me to finish with this episode. Charlie also has limited mobility to scoot herself while sitting in the chair. She put her chair all the way into the reclining position, with me bracing her feet with my weight, tries to engage her legs and hip muscles to push herself back. I then go behind the recliner and tried to use her arms to pull back. I mess up an pull too hard, and I hurt her shoulder muscles in the process. Shit......
Charlie wanted to keep trying, but we have been working for 20 minutes or so without progress and she was tired. I got the Hoyer lift out of the bedroom an cleared out furniture and wheelchair for the lift. Charlie then helped me get the sling under her by rolling her lower body with the recliner back, and upper body with the recliner sitting in the up position. Then with the lift in position, we hook up the sling four lift straps. The lift mechanism is electric powered, so I give Charlie the controls so that I can guide the sling. (Remember, I have to do this one handed.) Charlie lifts herself out of the chair using the controller for the lift and when she clear, I roll the lift to the center of the living room, and position the wheelchair under her. I get behind the wheelchair, and grab the strap that located on the sling at the small of Charlie's back, and Charlie lets herself down while I lift up and guide her into the chair. With the weight off of the lift, Charlie is sitting in a slouched position, and she got to work herself back into the chair. It's a team effort. By this time, we have been working for close to an hour.
Charlie cries .....I think because she is both exhausted and frustrated,....because this represents another turning point in her deterioration..... She knows that she will require a hospital bed in the near future.
I feel so helpless.
However, we ended the day on a good note. Charlie was able to successfully transfer between the wheelchair to the recliner and back again later in the afternoon. We had dinner, got through with the second round of meds, I got the dishes washed and grabbed myself a beer. I was watching Netflix on my computer and Charlie came in. Charlie and I finished watching the last show of a series. Then, Charlie wanted to see a series, "Wednesday." She was fascinated by there being no commercials, unlike the cable television in the living room.
I had posted on Facebook photo of Charlie's paintings and mentioned Charlie had a bad day. My sister from Hill county calls to asked if there was anything they could do. I tell her that Charlie ask me earlier to take her to our bank in the car so she could give more paintings away to the employees of the bank. The last time she rode in the car, we failed to make the transfer to the wheelchair and she wound up sitting on the driveway.
December 19, 2022
Yesterday afternoon, we had to get the lift to help us transfer Charlie from the recliner to the wheelchair. Of course, Charlie didn't want to use the lift, but after 3 tries, she wasn't seated in the recliner and was in the process of winding up on the floor. Charlie had no trouble with her transfers that day; it seems like every once in a while, her feet will no longer cooperate.
Back to the story of a normal day....
After the first meal, I get the dishes done. We have a dishwasher, but it takes 90 minutes to complete a cycle. The G-tube dishes are required to be washed 2 times a day, so I bought a drain board. I am doing the dishes by hand about 6 or 7 times daily with small loads. One of my pet peeves is dirty dishes in the sink and cluttered countertops. I do a load of towels every day and bibs with some of Charlie's clothes every 2 days, along with my stuff 2 times a week. I'm washing 1 to 3 loads every day.
The RN comes on Monday and Thursday about noon. The RN is the primary contact for hospice care, plus a phone number for a 24 hour nurse is on call in case of emergencies. Hospice provides supplies for the care of the G-tube, Charlie's medication related to her ALS diagnosis, including pain, anxiety, infections and Miralax. The RN also supplies the prescriptions for other meds. Hospice also provides the durable medical equipment, like the shower chair, freestanding toilet, and the battery powered Hoyer lift. Charlie has in the bedroom a suction device to clean the insides of her mouth and an oxygen concentrator. Hospice will provide a hospital bed when needed.
The RN visits with us, taking note of any falls or other concerns with Charlie's well being and offering suggestions and tips to make things easier for us. She takes Charlie's vitals, including the measurement of the arm's circumference instead of weight. Other professionals from hospice are a magnificent Social Worker (there are a lot of bad social workers out there) and a minister of faith.
Charlie's needs are met at around noonish. I have about 3 or 4 hours of free time. I finish doing the never-ending laundry, straitening up, vacuuming, mopping and gathering up trash. I also do any yard work at this time. Nearly every day, I'll run errands to buy groceries, pharmacy, banking, post office and Sonic for ice. I need to dust the furniture and clean the windows one of these days. I often take breaks throughout the day in my office.
Just one day at a time, I keep telling myself. The one thing I noticed today was Charlie has more unsteadiness when she is on the toilet. I had to intervene because she almost slid off the front of the toilet. Damn, one more item.
I know lots of hurting lies ahead; I dread the near future. And, afterwards?..... Shit........
I try not to think of afterwards.
December 21, 2022
Yesterday we had a busy day. My sister and her husband came up from Hill County to help with transporting Charlie to our bank to hand out Christmas themed and watercolor paintings to the employees. (Charlie has a real talent for color combinations that show in her watercolor paintings.) The event disrupted the bank's day, with Charlie passing out paintings of Christmas trees, snowmen, nativity scenes and colorful paintings. She even went into the Bank Manager's office to give him some. It was a delightful afternoon, but we got home, Charlie was spent.
Charlie’s Paintings at local bank
After supper, Charlie could not stand from her recliner. She did not put up much of a fight when I brought the lift in from the back bedroom. Charlie was able to transfer back into the recliner without incident.
When Charlie was ready to get up this morning, she could not transfer without the lift. We are having to use the lift almost every day this week.
December 23, 2022
I might as well give up on describing just, "One day, a good day, in our existence of living with ALS," because there is not one consistent day for us--things are always changing. Charlie has had to use the lift four times this week to transfer. This is new for us.....again.
It would be easier, according to the RN and the NA, just to have the Hoyer lift sling already in place when Charlie sit in the recliner or wheelchair. That would make it easier to hook up safely and quickly when needed, but Charlie isn't having that; she's the boss, I'm just the pilot. I think it would be like admitting defeat to Charlie to be sitting on the sling.
Do you see a camel? Two owls?
December 24 and 25, 2022
I am going to share a story about how I see things. Looking back on our whole experience of dealing with Charlie's condition when I starting going to see her doctor with her because of my concerns with dementia symptoms (2019), Charlie was working full time, needing the insurance that employment until she retired. The initial MRI showed a "small stroke in the left cerebellum," and "volume loss" that could be associated with dementia.
Ok, I felt like I was the pilot of a plane,needing to get to "happy" retirement in two years. Just coast, but I felt like we were in control and it was a manageable situation. We have our house paid off and no debt of any kind and the house was recently remodeled. Just a jolt in our plans, that was all.
Charlie chose physical therapy and fit the PT into her busy schedule. The PT sessions didn't really work for her, but she was closer to retirement. Then, Charlie symptoms slowly worsened, had another MRI done and it revealed a second stroke, according to the radiologist even though we never notice a sudden event or change in behavior such as a stroke might cause. The neurologist looked at the MRI and said that he could not see the stroke, but offered no explanation for the gradual increase in symptoms. Charlie decided that she would go to part time employment and apply for Social Security Disability Insurance.
Still, I thought there was a way forward until she turned 65 and could get on Medicare without financial ruin. There was hope that all would end well. The plane ride would turn out ok, after all, just a little bumpy and a minor course correction was all that was needed.
Charlie had more and more heart tests done, but the cardiologist could not find the root cause of her strokes and Charlie's complaint that she was easily winded. But then, one day, the cardiologist noticed that Charlie's speech was worsening. The cardiologist talked with the neurologist. I'm convinced the cardiologist was key to the ALS diagnosis, not the neurologist.
Shit, the plane was giving minor mechanical trouble was now accompanied by a fire on board. Charlie has addition barriers every week or two for the past year. We never reached a plateau in the ALS symptoms as I had hoped. Now, my prostate cancer diagnosis just when I was needed most. I feel like the plane has multiple fires and is coming apart....shit.
I keep on thinking back to the lessons I had learned in my teenage years of drug abuse counseling of taking it one day at a time...one moment at a time... enjoy the little things I have with Charlie each day. I cherish each moment.
December 26, 2022
Charlie almost slid off the front of the toilet yesterday, causing me to cry out for help to our daughters to keep Charlie off the floor. My daughter had to physically lift Charlie and set her in the wheelchair. I need to get the freestanding toilet out of the garage today and set it in the master bedroom for privacy to start using soon. That Charlie will like not that is a gross understatement.
I'm not good with change, and change has become constant companion.
Shit......
Dog in a storm
(side note: Charlie has been painting only for six months.)
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