"A Day in the Life"

[Dawood]

My PALS thinks we all might benefit from sharing our "day in the life" stories, that is, how does each PALS spend a typical day? If we share this information, maybe we can benefit from knowing some ways that other people manage their time. For example, here's our typical "day in the life":

PALS condition: 53-year-old woman. Cannot stand or walk or use arms or hands except very limited movement of right hand/fingers; voice and breathing starting to weaken.

Household: PALS and CALS only, with occasional visits on weekends by adult children.

Schedule:

7 am: Hired Caregiver1 arrives (Mon-Fri); CALS kisses PALS goodbye and goes to work.
8-8:20 am: Transfer with Molift divided leg sling from hospital bed to RAZ tilting, rolling commode/shower chair.
8:20-10 am: With commode chair rolled over toilet and without removing sling, Caregiver1 (Mon-Fri; CALS Sat & Sun) washes face, brushes teeth, wipes nose, brushes hair, applies facial and lip creams, removes nightgown, powders skin; puts on dress, shoes, and earrings, and rinses down there with Hydrawand hand-held bidet wand.
10-Noon (Mon and Thu only): Caregiver1 gives PALS shower in tilting commode/shower chair, then transfers PALS to bed for skin care.
10-10:30 am: Transfer with sling to power wheelchair; remove sling; place positioning tray on wheelchair.
10:30am-1 pm: Breakfast & morning pills; communicate with outside world via bluetooth mouse linked to Android smartphone and/or Galaxy tablet on positioning tray. Caregiver1 departs.
1-4 pm: Saintly friends arrive per schedule arranged on lotsahelpinghands.com; possible time outdoors, trip to market in wheelchair van, or other work or play.
4-7 pm: Hired Caregiver2 arrives (Mon, Wed, and Thu only--CALS works from home on Tue & Fri)) and does massage/stretching. Other visitors may come; otherwise, time to watch a TV show or communicate electronically. Mon and Wed, saintly friends bring meals.
7-8 pm: CALS gets home from work. One hour of dinner and conversation.
8-9:30 pm: Get ready for bed (by Caregiver2 Mon, Wed, Thu; by CALS Tue, Fri, Sat, Sun). Transfer via sling from wheelchair to commode/shower chair; with commode chair rolled over toilet and without removing sling, Caregiver2/CALS washes face, brushes & flosses teeth, removes dress, shoes, and earrings, puts on nightgown, and rinses down there with Hydrawand.
9:30-10 pm: Transfer from commode/shower chair via sling to hospital bed; remove sling; take evening pills and adjust pillows again and again until perfect; read Kindle on tilting tray table until sleep.
10pm-6am: Sleep with occasional pillow/limb adjustments and/or drink of water.
6-7 am: CALS quietly gets ready for work & lets PALS sleep

Of course, not all days are like that, but that is a typical "day in the life" at our house. We'd be interested in knowing how others on this forum spend a typical day.

 

[Diane H]

PALS Condition: 65 year old female, power chair, PEG, full time ventilator. Still speaking and eating most regular food.

Household: PALS and husband. Friend comes for an afternoon weekly to give John time off. Neighbor takes the beeper in the evening if John needs to go somewhere. Daughter stops in after work a couple times a week.

Schedule:

I sleep in most mornings and often stay in bed to listen to a couple discs of a recorded book. When I am ready to get up, my husband gives me my meds and a half can of Jevity through my PEG tube. If it is a bath day (about twice a week) he washes my lower half. Then open back slacks, socks and shoes on. Sling placed under me. Trach cuff deflated and suctioned. Raised in sling and bed pan slipped under me. Bottom wiped and I am moved over to my chair using ceiling lift.

Off to the bathroom and roll under sink for shampoo, upper body wash on bath days, tooth brushing, face wash, moisturizer or make up. Top half dressed. Off to my desk and all the little details of getting me set for the day; position adjustments, glasses, mouse, call button, drink, another suctioning.

Two or three days a week my husband works a few hours at a small store and I go along. I sit in the back room and am set up with my laptop on my portable wheelchair desk. Two days a week we pick our granddaughter up after school.

Lunch is whenever I get hungry and may be regular food or Jevity for convenience. Dinner is usually a meal my husband fixes. We are night owls and never go to be until 11 unless we have early plans for the next day. One or two times a day I use my female urinal.
At bedtime we get me into my night shirt, brush my teeth, wash my face and put the sling around m. Another pit stop over the bed pan on the bed and bottom wash. Then a pillow against the foot board for foot positioning, blankets, call button, and book in the CD player. I awaken at least twice on a good night. Sometimes I need to turn, sometimes to be suctioned, or other aggravations. We have learned to turn and suction each time to hopefully prevent another awakening for both of us.

And so go my days. Lots of time on the computer, TV if I want, expeditions (of the polar varieties lately!) to work, shopping (usually of the Lowe's variety), appointments and an occasional fun event.

 

[Dawood]

Thanks, Diane. Does anyone else want to share?

 

[zoohouse]

As soon as I wake up, I get up and get my husband up in the sling, give him the bottle, then into PWC. I hook his cell phone into the holder, and cover legs with a blanket, turn on his chair and place his right hand in place to control it.
-Next I go into kitchen make his smoothie (full of good things) and make coffee, and my breakfast.
-I put Tim's smoothie in his cup holder with a large straw, and while he drinks it I make both of our coffees and allow his to cool off. I usually sit down and check out the forum, and by the time I have finished my breakfast and coffee, he has finished his smoothie, and is ready for his coffee.
-I continue on the forum, or checking emails until he has to have his BM. I meet him in the bathroom and lift him by sling onto the toilet, leaving sling on. When he is done, turn on the bidet and it washes him, then I lift him and put him either into his PWC or shower chair depending on what day it is.
-Shower days means he is scrubbed head to toes with his favourite shower gel, shampoo hair, and shave.
He is towelled off there then rolled to sink where I brush his teeth and tongue, floss his teeth, put his deodorant on, clean his ears and
comb his hair.
-He is then put into his PWC and dressed, compression socks put on, and feet splints put on.
-He goes to living room where he reads the news on his phone, or set up his kobo and he works on that.

He has what ever lunch I have with a large glass of juice or water, and we may go out our he watches TV or reads. Supper the same as me and we sometime work on a crossword with him.

Mondays there is a band practise in our basement, and Tim sings and suggests music. He has the most extensive music library I have ever seen.
Thursday evening to the church for AWANA to listen to verses the kid are memorizing.
Fridays the neighbours kids come over for book reading time. One reads with me, one with Tim and the little one plays with blocks. When the girls are done Tim reads Louis L'Amour novel to them, accents and all. They beg for more, he reads a little more, and then they go home for supper.
Sunday morning church, and then we usually visit my sister and husband at their place for supper and conversation.
Saturdays we try to have some adventure, ice fishing the last couple of saturdays.

When I settle my husband for the night, I put on his Vpap and classical music on for him to go to sleep to, and I take my bath and soak. When I get to bed I turn on a podcast to listen to, and I fall asleep. Sometimes Tim wakes up and asks me to push him one way or another, or reposition an arm or foot.

We keep pretty busy and Tim seems to be tolerating it especially since getting his Sip & Puff. I am the one that may take a nap in the afternoon, if I was waken a couple of times in the night.

 

[Dawood]

Thanks for sharing, Zoohouse. These posts help paint a picture of life at home with ALS, as well as giving ideas on how we can spend time living with this condition. (and it seems like new tech gadgets are good for PALS.)

 

[Mar51]

hi, I'm Mary Ellen, 62, and have Bulbar onset. I start my day kissing my partner, Laura as she leaves for work. She has coffee made for me and fed the dog. About an hour later she calls to say she is at work and I get up. Wash up, brush teeth,etc. I am very fortunate that I work from home on a laptop. I can get around, but use a walker most of the time. Have Bulbar, so speech is affected, use bipap at night and some swallowing issues. Had feeding tube placed a month ago for hydration and meds. FVC not great, so needed to get it. As it was,they used ketamine and that was not good. Anyway, back to my day. Make a easy breakfast and coffee and start work at 9. Work a full day for insurance company. Several conference calls a week, but either use my voice amplifier if I'm up to it, or Text. My team is beyond wonderful and all know about my diagnosed. They have even donated PTO hours! I'm on intermittent LOA mainly for dr appts. Living in So CA, I try to eat lunch in the backyard to get some air. Then back to work until done. I do have days when I am so tired, I will lay down for a nap with bipap and just extend my work day by an hour. Usually finished by 6 or 6:30. Shortly after that Laura is home, makes dinner. We watch TV. I love sitcoms. She loves candy crush. Two or three times a week she will help me with shower .have rolling shower chair, which is a Godsend. She will flush feeding tube and add meds. Taking rilutek , vitamins, klonopin to sleep, and intermezzo if I wake up during the night and can't get back to sleep. For some reason, I usually sign on to the forum once I'm in bed. I feel a connection and am thankful for insights, opinions and helpful info. Take care, good night.

 

[Dawood]

Great to hear from you, Mary Ellen. It sounds like there are some very good people who help you through your day.