General Tips for ALS Patients and Caregivers | My Own Experiences
General tips to make life a little easier and safer
Anyone who knows anything about ALS (Lou Gehrig's Disease or Amyotropic Lateral Sclerosis) knows that it's a terrible disease that takes things it has no right to take. It's terrible for the patient and hard for the caregivers, especially caregivers without previous training. Being there for an ALS patient may be difficult, but it's worth it too.
Having been an ALS caregiver since late 2006, and having had no previous training whatsoever, I and my fellow compatriots have learned a lot through trial and error. I've posted information on beating ALS, dealing with grief, caring for the caregiver and others, but until today I hadn't posted a "general tips" sort of page. You know, the little things that can end up being a big help that you might not have thought about yet. You can visit my other pages for more on emotional aspects. This page is designed to let you in on a few things I've learned that have proved invaluable.
Sometimes it's the little things that make an otherwise bad day better. When my mother was first diagnosed with ALS, I read books and had people sit me down and explain some of the big things that might happen. That helped. But there's no training for some of these things - some just came out of the blue from our "necessity is the mother of invention" mindset. I hope you find some of these tips helpful because making even one aggravation or problem better can make your whole day.
Waking Up Those Caregivers
My mother needs 24/7 care. We had a bad experience with a nurse who wouldn't get up when mom called at night. She says she slept through it, we didn't invite her back regardless. After that mom became increasingly worried that a caregiver, even one in the same room, would not hear her over her BiPap. We'd been using a baby monitor for some time but the BiPap is pretty loud and it was getting harder for mom to ring her cowbell.
I looked into getting a call button like you see in hospitals but the cost was prohibitive. So a new idea came about. What about a wireless doorbell?
I got one from Lowe's and it works like a charm. The caregiver can carry the receiver around the house. I used duct tape and velcro strips to turn the button into a wristwatch. (Note: Super Glue works way better, I've since switched to that). I put the scratchy piece of velcro on either side of the doorbell and simply cut two strips of the softer side and attached it to the sides. That way it's adjustable.
Now all mom has to do is push her little button and DING DONG.
A helpful hint: get a wireless doorbell with adjustable volume, so you only wake up someone in one room and not everybody in the house.
On the Road with a BiPap/CPap/VPap
If you or your patient is now living with a BiPap, CPap or VPap, you may feel chained to the house. Especially if the machine becomes necessary at unexpected moments. Who wants to be away from the house and suddenly feel the need for more air? Who wants to be confined because of a tiny machine?
This became a problem for us in Branson one day, when my mother suddenly had trouble breathing and the other primary caregiver, Margie, figured it was best to get mom to UAMS in Little Rock right away. Driving several hours without the BiPap when mom really needed it was out of the question.
So Margie, in a mother of invention moment, left mom with the hotel manager and ran to Home Depot. She found a power invertor for about $20 that did the trick. If we're in the van and mom thinks she needs the BiPap, we can pull over real quick, hook it up and let the car power it. It works great. If we go to the movies and mom needs air, we can go out to the van in no time and have it running.
What if I Need Air all The Time, or Don't Want to Leave The Theater or Restaurant?
Not every place you go will have a power outlet for you. Our local favorite theater does not, but Alltel Arena in Little Rock does (you just have to inform them you want in the handicap sections with power outlets). Maybe you want to go to the zoo and don't want to have to run back to the car, or you just need the machine on all the time. I researched a variety of portable batteries that would work with these things. CPap NY was very helpful when it came to answering my questions.
A backup battery can be several hundred dollars but if you want freedom, they might be worth it for you. Make sure you know which battery your machine will work with, or ask CPap NY and they'll help you find the right battery for your machine and your needs.
Pull Sheets Reek of Awesomeness
When mom started having trouble turning herself in bed, we would help her. When she couldn't help us at all, we were in a little trouble, until someone told us about pull sheets.
Some may think this would be something we'd automatically think of, but we're not nurses. We'd never even seen this done before. We couldn't possibly live without it. For those like us who've never heard of a pull sheet, it's simple.
It's just a sheet that your patient lies on. You can grab the sides of the sheet and use that to pull the person up and down in bed, turn them over, and adjust their body without hurting yourself in the process of moving them. You're far more powerful with a pull sheet than without one, and you don't need to buy anything special. Just get a thin sheet, fold it in half or fourths depending on your bed size, and have your patient sleep on it, with the sheet lying flat from about the tailbone to the neck if possible. It can be larger but you want to be able to get a good grip on it.
You still might need two people to pull the patient up in bed, but a pull sheet makes it so one person can turn the patient over. Just reach over, grab the sheet and roll the person over, then put pillows or wedges behind her to hold her up. You can pull one section of the pull sheet to move one section of the body over a bit if you need to. We love them.
Bidets To The Rescue!
Someone who has trouble using their arms and legs can have a lot of trouble going to the bathroom, especially when it's time to get cleaned up. One of the best things we bought when mom got to that point was a Bidet. She pulls the little lever, or we can, and a stream of water does the cleaning for her. It's not only a help to her, but she doesn't have to use toilet paper now, which saves us money and saves the world some trees!
You can get a pretty cheap bidet that works just fine with cold water, or you can upgrade to one with warm water and some with massaging jets. Whatever you want.Ours makes life easier. We just use the bidet, lift mom back onto her lift, pat her off and we're good to go.
Rampvans and Silly People
If you or your patient is now wheelchair bound and you're fortunate enough to have a rampvan, I've got something you might like.
Our biggest problem with the van was always other people. Our ramp comes out the passenger side and even though we have a big sticker that kindly asked people to park eight feet away, they don't do it. Sometimes they'll see mom coming out of her ramp, wait until she's out of the way, and pull in next to the van knowing they're blocking her from getting back in. Sometimes we luck out and find a van accessible space. Most of the time we don't and have to park a ways away. Since mom's wheelchair is electric it's not a big deal, she races us to the door. But it leaves the side space open for the silly people.
I solved this problem with cheap, 18" traffic cones. Three of those strategically placed in the spot next to us always works. Drivers don't know if you put them there or if there's something wrong with that space. The cones sit on top of each other so they don't take up much space in the back of the van and they've saved us from a lot of headaches. Enjoy!
Only thing I'll mention is that ours smelled BAD when they came. A good wash in the bathtub and some Febreeze fixed them right up.
Medicare and Wheelchairs
Medicare has paid for 80% on several of mom's most needed items. One thing to keep in mind concerns wheelchairs. They will only pay for one wheelchair. If you use them to buy a manual one, they won't help with an electric one later. Always consider what you may need later. A local MDA loan closet can probably help you get walkers and manual lightweight wheelchairs, maybe even an electric wheelchair . When/If you need a full-featured chair, let that be the one Medicare helps with. Don't forget to buy a wheelchair ramp which can make the life easier .
Talk to your doctor, local ALS support group or local MDA (Muscular Dystrophy Association) support group and ask about how to get in touch with the loan closet. We bought our own walker, but we used a manual wheelchair from the loan closet as well as an electric scooter and lift recliner before we got the full electric wheelchair. They can be a lifesaver.
Hospice and New Medical Supplies
Hospice can be a wonderful thing for some people. When the doctor proclaims you to be within your last six months, you're probably eligible for hospice. Once on hospice, you may live longer than six months thanks to getting extra care. Mom went on hospice in December 2008 and we have a nurse come out a couple times a week as well as an aide to help with bathing. When there's an emergency, we call hospice. During our ice storm, hospice made sure we got mom to a facility with backup generators. We've come to depend on them.
Because of that we've learned some new things. Once you're on hospice, Medicare will probably pay for the vast majority of the bills. However, they'll no longer pay for anything that is considered "curative." That makes sense since technically your doctor says you may not live long enough to make it worth their while.
We ran into this when we considered getting a speech machine, a computer that would allow mom to talk using her eyes and the screen. In order to get it, we'd have to go off hospice. We don't want to be off hospice for what could be several months or more. They're too good for us. So my tip is, if you plan on going on hospice, make sure you have everything you're qualified for and you might need before you sign up with hospice. Plus, leaving hospice, getting a machine through Medicare and then rejoining hospice can be considered fraud.
Video For Caregivers
If you have a good care giving tip, feel free to post it here. We'll post the best ones on this page, with any helpful modifications or additions we may come up with. If you have a general comment or question, use the form below. Thanks for stopping by in my General Tips for ALS Patients and Caregivers post .