What does a typical day look like for us?
Let me paint the picture…
I wish I could say we have a set routine, or some sort of structure on a daily basis, but with three children and multiple meetings and activities, children coming and going in different directions, it is basically a “crazy, chaotic hot mess!” I sometimes laugh at how different Matthew’s life became. ( No, I am not laughing about the ALS part!)
He went from a bachelor, living alone to having a wife and three children practically overnight! I am so incredibly thankful for his patience and his love for my children. And he’s a pretty good sport about all the childhood phases he has witnessed, (or been subjected too!) in the last couple of years!
So in case you were more than just a little curious, here is an example of what it is like to live our life with ALS…
Midnight to 6 am – Matthew wakes me on average 4 – 6 times to be adjusted. Often times I wake up to a muffled sound of “Hey hun…” Followed by a request to help him turn over, or lift the covers, use the restroom, or adjust his trilogy mask, use the remote to adjust the bed up or down, or to scratch in strategic places that could literally be anywhere. (Just let your imagination roam on that last one…) He doesn’t have the strength to lift the covers, let alone scratch even a little anymore, as his wrists are the weakest part of his body at this point.
Rolling him over consists of me sitting up, and shoving on his hip and shoulder to roll him over. He is a big guy and without the strength in his abs or hips, he can no longer roll over. Then his legs get left behind, so I need to re-position his feet.
At least 4 – 5 times a week he will need to use the restroom at sometime during the night. Gone are the days of him sitting up and walking into the bathroom by himself. Now, it is all me. I get up, roll him over so he is laying on his side facing me and then I use a hand held urinal and as he lays there, I hold the container as he goes….I am usually doing this with only one eye open. And yes, I have been peed on more than once. Who knew there was a trick to how a man urinates!
6 am – The kids are in school again, so I set my alarm. I need to be somewhat awake when they are. They are pretty self sufficient these days, but I still like to be up and spend at least a few minutes with each one. On a really good day, I might jump out of bed and hit the gym while everyone is still asleep, and knock one thing off my to-do list. If it was a bad night, I stay in bed scrolling through Facebook until I am forced to move!
I help make lunches, sign papers for the kids that they, of course, forgot about until the last minute, and I make breakfast for the kids who want it. Recently, with all this smoke in the air, I am chauffeuring my oldest more than usual.
However, I have three children in three different schools. So I end up taking two at one time, and find myself in my pajamas and hoping there is no one around to see me! Then I hurry back to get the third one out the door. Three car pool lanes, three chaotic arrivals and departures then hurry home, because I have more than likely left Matthew lying in bed.
9 am – I take Matthew’s trilogy mask off ( a machine that basically breathes for him, similar to a CPAP machine, only this one has air that moves in and out, simulating a breath.) I have to use our adjustable bed to sit him to a 45 degree angle, where I then move his legs over the edge of the bed, and pull him to a sitting position. Then I lower the bed back down, grab our Sit-to-Stand Hoyer lift, and maneuver the legs of the hoyer under the bed. I then wrap the bulky giant strap around his back and under his arms and buckle him in. On a good day, he can lift his legs onto the platform, but on a bad day, I have to lift his legs and position them onto the footrest. I then hit the remote button that lifts him into a standing position, and I wheel him over to his wheelchair, where I then slowly move him into a sitting position.
I am thankful that we are still able to move him around this way. The few times I have used a sling and a hoyer lift, it is a lot of work and much slower than even this process, so for now, I will be happy we are still using this method of transfers.
I then make his breakfast, cut up his food, get his drink with a straw and feed him if he needs it. Or clean up the kitchen and talk to him while he tries to get more food into his mouth than on the floor. We are generally sarcastic and we find things to laugh about throughout the day…
On a shower day, (every other day) we then repeat the process with the sit-to-stand, only this time, I get him from the wheelchair and lower him onto the shower chair, and wheel him into the shower. I scrub his body from head to toe, which isn’t easy when parts can’t move. I usually end up almost as wet as he is. I wheel him back out, and dry him off and attempt to get his shorts on him, use the sit-to-stand to pull him up, pull his shorts all the up and then set him back in the wheelchair. Shower time now takes me at least 75 minutes.
Then I clean and flush his feeding tube, and various other parts of his body, (have you ever cleaned someone else’s ears? EEEWWW!) I then have to pull those horrible compression socks on, (this usually takes me about 5 minutes a leg, however, lately, its been getting a little easier…) and if anyone has had the pleasure of stopping by, he refuses to wear a shirt unless we are going somewhere.
12 pm – If I have errands to run, I usually take this time to do that. Matthew will be either returning emails, or will put his headphones on while he watches his television shows. If our caregiver is here, he or she, (we have gone through over 40 of them now in less than 18 months!) will sit at the kitchen table waiting for us to ask them to do something…not unlike having a sullen teenager in the house. (This is because I refuse to ask someone to do something that I am capable of doing myself, and Matthew refuses to let the caregiver help with showering and bathroom needs, so they sit there waiting for instruction. So it isn’t all the caregiver’s fault! I just wish they could read my mind and do things to stay busy, instead of me flitting around them, while they watch!)
I will usually make Matthew’s lunch. If I don’t, he will either skip lunch completely or order Jimmy Johns or some other horrid fast food to be delivered (and he’s always thoughtful and makes sure to buy lunch for the caregiver as well…) You know, because we can’t ask anyone else to do anything and he is known for his love of fast food, lunch doesn’t get made unless I make it! ( I have, however, learned not to complain or point out his unhealthy eating habits. After all, if you knew you weren’t going to be able to eat solid foods in the near future, wouldn’t you eat whatever you wanted?)
Matthew needs to be stretched and he also gets a massage once a week to help with his muscle cramps as they atrophy. He also goes to physical therapy at the pool. (Mostly because he has a huge crush on his PT!) On those days, he needs to be loaded up and taken to the pool, or to various other doctor’s appts. or meetings that we may have for foundation work.
2:00 pm – I run out to pick up oldest daughter from the new program she is enrolled in.
2:45 pm – I run to the middle school to grab my middle daughter.
3:00 pm – I drive my oldest to her job twenty minutes away
3:45 pm – I pick up my youngest son from elementary school…if I am running late, I then scramble to text mother’s who can pick him up for me, and I pray they can!
5:00 pm Cross country, football practice, volleyball, wrestling, car pools, dinner, homework etc. These are just some of the variables. Somewhere between kid pick up and dinner time, Matthew will require a bathroom visit. This is where the sit-to-stand comes in again. We do that entire process again to get him on the toilet, and of course, we talk about poop every. single. day….
(He also loves to wait for me to put him on the toilet instead of the caregiver!)
7:30 pm – start getting kids calmed down for bed. Teeth brushed, tucking in each one individually can take at least two hours!
9:30 pm- Matthew isn’t tired yet and wants to keep watching one of his shows. I putter around on Facebook, or write. My Kindle hasn’t been holding a charge, so I haven’t been reading nearly as much.
At least one child needs something or wants me to tuck them back in. Afterwards, I make sure the house is locked up.
10:30 pm Matthew asks if I am ready for bed. He usually says it in a way that implies he has been waiting on me! So we brush teeth, use cough assist, and out comes the sit-to-stand one last time. By the end of the day, his legs are so weak, I only have a few seconds to move him from chair to bed. I put his trilogy mask on, and I lift his legs up onto the bed. ( This part is not easy, as he still has tree trunks for legs and they are heavy!)
I usually will scratch him all over because sitting in a chair all day is hard and he is itchy. Some nights, I rub his feet and rotate them to help with the swelling. Then I turn on his side of the electric blanket, plug his wheelchair in to charge and lay down…
11 pm -And this is where I remember I forgot to grab his remote to control the bed….so I get back up…
Lay back down but… he needs his pillows adjusted…So I get back up to do that…
Then he needs his head moved up or down, or legs put up…so I grab the remote to do that,,,
I play on my phone or read on my kindle till I can’t see out of both eyes anymore..and right when I turn the lights out…
He wants to roll over…
Disclaimer- The above description is simply that. A description of how our day goes on most days. It is not a complaint or a “please feel pity for me” type of description. This is simply an example of what our days look like. Some days are busier than others. Some days are better than others.
I am truly thankful for the help that I do get. I am thankful that we have a caregiver, no matter their qualifications. I am thankful that I am still able to chauffeur my children to their activities most of the time, no matter how challenging it is getting three children to all the places they want to be. I couldn’t imagine how difficult it would be to have to work full time and manage all of this everyday. I often look back and wonder how I worked part time and went to school full time on top of all of this!
I also remind myself quite often that we are not at the difficult stages yet. Yes, I know many people have it much more difficult than I do, and I am thankful for the place we are at today. Like a train going full speed ahead, I am fully aware what lies ahead for us. For now, when I am overwhelmed, I try very hard to remember that it is just a day. The next one will look better…or, like my previous post, my perspective will have shifted and the day won’t seem that bad after all!
After all, what’s in a day?!
P.S. I think I have used this picture before..but it is sooo relevant to my life!