What is your PALS typical day like?

[Phil's wife]

hi, Just curious what an typical day looks like at your house with your PALS?

Phil has stage 4 renal cancer that has spread to his spine and lungs that he takes a pill for 28 days and off for 14 days. With all of the complications in the last few months -- it has been really hard to see what "normal" is sometimes. One of the complications is pain from the tumor on his spine and he takes a lot of pain medication for that. Unfortunately, it is rare for him to feel like doing a lot most days, but I don't know if I am maybe not giving him enough opportunity to get out and do things. I can easily stay busy all day with house and kid chores.

Today --

Slept from last night at 10:30pm - 12:30pm
Had his feedings via PEG throughout the day from bed
Watched TV and played on iPad
Got in wheelchair for about an hour around dinner time - came sat at the table with us

How many of you get cleaned up and dressed each day? How many are up and in wheelchair for many hours a day? What types of activities do you do for fun?

Thanks,
Stephanie

 

[smwelder]

Sounds very similar to my day. I go to bed anywhere from 730 pm to 11 pm, sleep until 11 am. I do get up and with help from my wife, I get dressed, get into my chair, eat, if I am up to it we will go for a walk. Ok, she walks and I ride around in my chair lol. Dinner comes and I try to eat at the table with her and the kids. Sometimes if I am feeling up to it, we will all go for a meal at a nearby eatery. The rest of the time I am not up to getting out, I will get on computer or watch tv with the family. There are those days where I just stay in bed and watch tv there, eating my meals in bed too. For the most part, I try to have a daily routine of getting up and getting dressed, just like any normal person. That helps keep the depression away, and helps me feel somewhat normal.

 

[joelc]

I know you are asking caregivers but I thought I would contribute anyway.

My caregivers get me up at 8:30 AM and put me in my wheelchair.
I am taken into the bathroom and cleaned up.
Then I am taken into my computer room and am setup to use it.
I get Breakfast, Lunch and Supper there - through my PEG.
Starting at about 8:0 PM I get taken back into the bedroom and put to bed.
I watch TV for a couple of hours.
Go to sleep.
Starts all over again the next day.

Sometimes if there is something special on TV I am taken out of my computer room into the livingroom to watch it. This happens maybe once or twice a week.

That is my day 12 months a year.

 

[LornaDoone]

My pals is up at about 10am and cleaned, dressed and fed. She always gets dressed, but will often go back on the bed, or in her chair. Sometimes setup on the couch. She is not able to do anything by herself or move, but she still has her voice and can sure boss us around. She is taken out once per day. She has "snack" with her spouse everyday before dinner. She gets her daily foot massage or whatever. It's time her husband and her have put in the schedule to promote some sense of intimacy and normal spousal behaviour. She gets ready for bed around 8pm and will watch TV in her room with her husband. She will often fall asleep reading or watching TV.

We have help come in mornings, evenings and once during the day to help with cleaning, feeding, etc. This frees us all up to enjoy dinner with her and not have to get up all the time.

 

[abbas child]

I'm taken out of bed at 8 when Phil goes to work and the women do my care. Phil is not on a schedule, but between 7:30 and 9, he gets me up. They dress me to the extent I dress. The women help me do my hands, face and teeth, and then I have my coffee with Bible time, and whatever I ask for breakfast is placed where I can open it and get it--fruit and yogurt. They all keep water in plastic cups upstairs and down. I tilt and elevate legs, with a plate or bowl on my lap by the kitchen table for all meals. Spend time after breakfast on the computer. Returned caregiver hoists me, fixes something--cheese and crackers, fruit or soup for lunch. Eat, read or nap. Computer, dinner, get ready for bed and in bed around 7. Watch movies, read, check the forum... last hoist for the night when Phil wants to go to bed. Lights out when I'm sleepy...10:30-11:30 normally.

Note: I have shoppers who come at least twice a week, and also visitors if I'm not too tired. My schedule sounds so barren, but it isn't. I'm very fortunate to have plenty of volunteers and visitors, but have slowly had to shorten, spread out and even end some visits.

 

[kelly]

I start my day by getting our boys off to school. Then run in and do our first morning tube feeding. I get him set up in bed...comfy and either turn on is ipod..or tv depending on the day. Then I try to take a quick walk. I get my hubby up at 10am our morning routine takes about one hour if he does not have to sit on the toilet. Morning routine consists of toileting, brushing teeth, washing hair, washing hands, face, tube feed, medicine...and getting dressed. Then we head out to the kitchen and he uses his eyemax for approx an hour. Three days a week we have the focus of getting out of the door for physical therapy. One day a week of stretching..and two days of pool therapy. Those days are crazy busy. I try to get him into bed approx from 2-4 or 5pm depending on the day. Get him back up....while I make dinner for the boys....he usually surfs the net. In between this time we fit in 7 cans of formula a day..and several trips to the bathroom.
Then it is time to wind down for the day..getting kids and hubby ready for bed. I usually have a glass of vino by 10pm..and go to bed at 11. Wow I am tired even talking about it...sweet dreams everyone!

 

[BarryG]

My day starts at about 9 when my home care worker arrives and gets me up, showered or washed (I've never been cleaner!) and after I flush and suction my throat and mouth for 20 minutes I get my first of four daily formula feeds through my peg tube. I sit in my recliner or bed and watch tv, read, come onto the forum and watch birds at my feeder. A few more flush and suction sessions in the day gives me some excitement.

My helpers come to feed me at 1:30 and 5:30 and then come at right about now (9 pm) to feed me my last "meal" and put me to bed. I love my helper ladies! ;-);-)

 

[Miss]

My helper comes around 9:30 - 10 am. We get my husband up, bathed and dressed. This takes about an hour. He is then transferred into the den to the lift/recliner chair. Breakfast - 1 hour. On Monday and Wednesday, he has PT for an hour. On Tuesday and Thursday, he has OT for an hour. Afterwards, lunch - 1 hour. About twice a week, his best friend stops in for an hour/hour and a half visit. In the afternoon, snack time - about an hour. In between, he watches television (mostly sports and movies). If the weather is nice, he heads out in his PWC for an hour. (He hasn't been able to do this too much in the last month or so). His twin brother comes over a few nights each week and watches TV with him/us. Dinner - an hour, more TV. Dessert - 45 minutes. Bedtime at 10:30 - 11pm. The bedtime routine takes about 45 minutes. As you can see meal times take a very, very long time. He is not using the PEG yet. It is just a matter of time, though. For entertainment, we go to the zoo sometimes. We head to resturants in the early afternoon to avoid crowds. He now enjoys going to Walmart and some of the off the wall places like that. These things take alot of effort and wear him out, though. We might start trying the movie theater in the early afternoon. He is miserable if he doesn't get out at least a few times a week.

 

[ddelporto]

Our day starts about 7:30 a.m., I wake and go to front room where hubby sleeps in his lift chair, he's diabetic so I do blood test, give insulin shot, grind morning pills and add water, put thru feeding tube as he can't swallow them, make breakfast and hand feed as he isn't able to move his arms or hands, after breakfast Home Making Service lady comes for an hour weekday mornings, together we lift him in wheel chair, move to and in shower. She bathes, brushes teeth and dresses him and we move him back to his recliner. 10:00, time for water in feeding tube, he watches tv while I get myself showered, bed made, house work, paper work, etc., Noon prepare and use blender for his lunch, hand feed, test his blood, 1:00 he might take a nap then I have my lunch, run to post office, grocery store, can't be gone but a few minutes...5:00 test blood, insulin shot, grind pills and put in PEG tube, prepare dinner, put in blender and hand feed, after he's eaten I'll fix something for myself...clean kitchen and do dishes. 8:00 start getting him ready for bed...brush teeth, rinse mouth, floss his teeth, wash face, blood test and insulin shot, put cathetor on.....this way I can get a good nites sleep, I sleep with a baby monitor on pillow next to me so I can see and hear him if he needs me during the nite. During the day....no cath, I bring the urinal bottle to his chair...he's usually tucked in by 10:00 and that's my quiet time for a few hours...computer, paper work, etc...I usually go to bed 11 to 12:00. Our sons live 130 miles away and come home on alternating weekends to help and visit. Hubby just got a Tobii eye gaze computer so a few hours a day he's learning how to use it....once he's able to get on the web with it I know he'll be using it a lot more....

 

[catcaniac]

Everyone seems like they are into such a routine. I feel like our lives have changed so quickly that I am not sure of a routine but he goes the best attempt. Our day starts anywhere from 7 to 8:30 am. I am usually out of bed first and get on the computer for a bit before I hear, "Hey, Babe!" which means he is ready for my attention. His speech is going so quickly that I have now begun to check on him every few minutes because he is hard to hear. I give him his Rilutek pill so it can be down an hour before breakfast. I start to get things ready (clothes, neck brace, wheelchair, walker, etc.) for the daily transfer to the bonus room all staying upstairs. Unless he wants to shower that day. If so, I call his dad and he comes so that together we transfer from the bed to the shower chair then I roll him to the shower. His dad usually leaves and then comes back to transfer to the transport chair and then from the transport chair to his lift recliner. I then dress him in his shorts and t-shirt. He turns on the TV and picks his poison for breakfast. Some days I make him breakfast and some days he wants his dad to bring him local restaurant food. He is usually eating by 8:30 or 9 and it takes anywhere from 40 min to an hour for him to eat. During that time, he takes his seizure med, which is increasingly difficult as he chokes about every other time. He usually watches TV and we keep the urinal handy if he needs to urinate. Often this or eating prompts another change of clothes. We usually have a number of phone calls by now and possibly a couple of visitors. Most days it is then about time for either PT, OT, or speech to arrive and mostly talk about useless things. By now I am watching his eyes roll in his head because he is so tired. He hopes for a nap but almost never is without a visitor or phone calls for more than 30 minutes. During this time, I try to get the dishes done and try to start laundry. We then decide on what he wants for lunch. I am cutting up all food and have to help feed him anything like soup. Again about another hour to complete that and we are usually done with lunch by around 1pm or 2. Sometimes he wants his laptop after that but is asking less and less due to the difficulty he has with using the mouse with his right hand. Usually it's Netflix movies or DVR shows. I usually work on his neck during this time because he has major pain issues and flexibility difficulties trying to hold up his head. His mom and dad usually come at some point during this time and most days another visitor or two. Most of whom stay entirely too long and discuss things my husband has no interest in. At some point I work on cleaning the house, bills, etc. and laundry again as his mom is very particular about things in the house so I try to keep it very clean. I have a baby monitor now that I use downstairs so I can hear if he needs something up stairs. I go back and spend a bit of time on the computer or watching something with him until it is time to do the dinner thing. By this time, he needs a lot more assistance because either he has showered that day, had PT, OT, etc. or had to sit on the toileting chair at some point, which takes a great deal of time more than it used to. After dinner, it isn't long until we do the transfer thing back to the bed. I always use the lift now to put him in bed as I can position him so much better than two people trying to manhandle him. The he and I usually watch basketball and take his meds over about an hour and half or two period. If he has not showered, I wash him up at that time and he sleeps in the buff. We got out of the house today for the first time in weeks and he was tired after about 2 hours. If he goes out, it takes 8 total transfers due to having to use the stair chair so most of the time, unfortunately, it wears him out so much he is miserable. Depending on whose playing basketball he goes to sleep anywhere from about 9 to 11 pm. During the night, he usually asks for a drink at least twice and I turn him over usually a couple of times. He started medicine to help him sleep a couple of days ago, which is helping. I often have trouble sleeping between 1 and 4 am and sometimes get up to have some alone time either surfing the net or reading. When I type it, it sounds boring and mundane but most days it seems overwhelming like we just need a break.

 

[Miss]

Catcaniac, What medicine did they give your husband to help him sleep? They just gave mine valium, and it seems to be doing nothing.

 

[sadiemae]

Missy, We got Ambien for Les at the VA, but only 10 pills a month. A half one, with a Zanax usually works.

 

[stephie]

Stephanie,
Did I understand correctly that your husband is dealing with both cancer and ALS? If that is the case, I am so sorry! ALS is terrible enough without another devastating illness on top of it!

I appreciate you starting this thread. It is so interesting to hear how everyone deals with the daily issues. My husband wakes up around 5:30 am (he does not sleep well). I give him coffee in his feeding tube and turn the bedroom T.V. on while I hop in the shower. After my shower, I get him dressed and out of bed into his wheelchair. I bring him out into the living room and finish getting him ready out there. He uses a urinal and I just do the teeth brushing, shaving, washing and hair combing in the living room. Showers are at night or on the weekend unless I have home health care in the morning, which I do two mornings a week. I give him medicine in the tube and start a feeding. I get him all situated (he can't move) and get the computer started for him. He uses eye gaze and can operate the T.V., Netflix, light, and fan with his computer. I finish getting ready and leave for work around 8:00 and he is home alone until his parents stop in from 11:00-1:00. He is home alone again until the kids are home from school.

While I am work, he spends the day on internet and watching T.V. The stock market has become his hobby so he watches CNBC and trades stock. The kids come home around 3:30 and they help him out until I get home at about 5:30. I fix supper, help kids with homework, etc., until about 8:30 when we start getting ready for bed. We do medicine in the tube again, use the urinal, do cough assist and suction, then I get him out of the chair and into bed. I get him situated in the bed and on bi-pap then turn on the T.V. and set the sleep timer. It takes until 9:30 or so to get him to bed, then I get ready and go to bed. (Unless it is a night where a kid needs to be driven or picked up from something)!

 

[10steps]

I usual have him up between 6:15-7:15am depending on how bad a night he had. empty cathether bag and transfer him from his chair into either a scooter but now a loaner pwc so he doesn't fall out. coffee. transfer to toilet, transfer to shower chair, shower, gget him dressed. PCA arrives and she does teeth,breakfast - i go to work. He usually watches SC or does facebook. PT comes, visitors come. Lunch, more visitors. Myself or the PCA try to get him out but weather has made that prohibitive and no van. He's difficult to transfer in and out of hte car. he'll watch a movie. help the PCA make dinner - he's teaching. dinner. argue with teenage daughters, watch a game,get dressed for bed. 9pm

We have lots of visitors and go out once in a while....not walmart -he'd bonk out. He likes to take the dog out when possible.

 

[Phil's wife]

Stephie,

Yes, he was diagnosed with ALS last spring and Stage 4 renal cancer in September. The doctors think the ALS is brought on by the cancer, but there is no way of really proving it.

Thanks everyone who have shared so far. I applaud those who are in a routine. My husband won't even think about allowing anyone except me -- not even the teenage kids -- to help him with anything personal. So I just don't break my neck to make sure he is cleaned up and dressed everyday. Course, like I have said before, he seems content to stay in bed most of the time anyway.

Stephanie