Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

An ALS patient wrote these guidelines.

Guidelines for visiting me when I can’t speak for myself
At some point, I won’t be able to articulate my wishes. Here are some thoughts that might help those visiting or caring for me:

Keep visits short: About 20 to 30 minutes is enough. Being with people is tiring for me.

Consider visiting with a buddy: It’s hard to converse with someone who can’t respond and it can be pretty depressing. You two can talk to each other; I can listen.

Speak clearly and not too quickly: My brain has slowed down and it takes me longer to absorb and process information.

Respect my dignity: Please don’t speak about me when I appear to be sleeping — unless you want me to hear what you’re saying. I may be simply too tired to open my eyes. Even on one’s death bed, it is said that hearing is one of the last senses to go. Either talk to me as if I could respond or leave the room if you want to discuss my condition.

Don’t tell me to “be strong”: I’ve been strong all my life. When I’m at the end, I’m at the end.

Don’t try to be strong yourself: If you want to cry or get emotional, it’s all right. It’s an upsetting time. During Carl’s illness, I worked to be strong and not let him know how much his decline pained me, and now I worry that he may have thought that I didn’t care about him.

Be sure to clean my eyeglasses: It’s amazing how smudged they get.

Monitor my comfort: If I’m slumped down in my wheelchair, ask me if I want to be repositioned before you start moving me. Currently, I feel more comfortable in a slumped position than sitting upright.

Play my favorite music:

OMG, MY HEART ACHES FOR YOU...YOU HAVE BEEN THROUGH HELL ON EARTH....I KNOW WHAT YOU MEAN ABOUT THE PATIENT NOT REALIZING THE PRESSURE THE CARE GIVER IS UNDER....I APPRECIATE ALL THE GREAT SUGGESTIONS...….MY HUSBAND SLEEPS IN A RECLINER AS HE CAN'T BREATHE IN BED.....HE HAS BEEN CHOKING LATELY UNTIL HE RETCHES....SCARES THE BEJESUS OUT OF ME, BUT IT IS CAUSED BY HIS FEEDINGS...ONCE HE BRINGS UP THE PHLEGM HE IS OK AGAIN FOR AWHILE...ONE DAY AT A TIME, SWEET JESUS...…..I THINK THAT'S HOW THE SONG GOES...…….ALLEGRO (JAN)

@becsbuddy @allegro I was going to suggest a Hoyer lift too. Not knowing what stage he is now, these are suggestions for when it becomes difficult to care for someone who cannot do for themselves. I had a Hoyer lift when I cared for my dad at end stage heart failure. He couldn't roll himself over in bed. I used the lift to transfer him from his bed and a wheelchair. Have home health show you how to use the lift and sling and do the hygiene chores that will need to be done. I would also suggest a hospital bed so you can adjust that for height and position. That will make transferring easier from the bed with the lift. The lift has to be able to slide under the bed, so it needs enough height under the bed to do that. My dad wanted me to be able to pull him around in his bed, but I could not do that. At the time, I was in need of spine surgery and in a lot of pain myself. It's exhausting to have to do the physical chores and can be too much for a person to do alone by themselves. You will learn as you go, and it's good that you have a lot of family willing to help. As hard as it will be, enjoy the closeness and togetherness of your family. I used to hold myself together pretty much during the day, but I would cry when I was alone at night while staying at their house. I started listening to music to help ease those feelings and it really helped me to go to sleep with my headphones on. That's also when I adopted a silly cat, and I would bring him with me. I cared for both of my parents at the same time and had to hire and manage caregivers that I traded shifts with. During this time my mom had a pelvic, foot, and ankle fracture herself and later surgery on her ankle. My dad also broke his hip when he was still mobile. I wasn't home much for 2 years, and after my dad passed, I had spine surgery at Mayo and then took time for my own recovery. My mom has been doing OK on her own since then and I take her to all her appointments and shop since she doesn't drive anymore. It is very hard to be the caregiver and you get all the frustration of the patient directed at you, and all while you are trying to do the best you can. You will need some respite time. This can easily take a toll on your own health, so you will need to ask for help and take breaks when you need them. It may at some point become too hard to continue to provide home care, but that is a hard decision to make. My dad should have been in a nursing home, but my parents didn't want that, and they also didn't understand the burden. Like a lot of elderly patients, they thought they could manage things on their own. I was the one who caught the urgent problems like pneumonia, bloody urine, and fluid in the lungs and I sent my dad to the emergency room several times. There were times we had to negotiate with him and get him to go for my mom because she was worried. He had had a head injury years before and lost the ability to reason for himself and he would easily become very emotional. I know that I gave them more time together because I advocated for him and got medical help when he needed it. When it came down to the end, I tried to make him as comfortable as possible. He reached a point where he was ready to quit which is hard to accept when a loved one tells you this, and I had to let him go and accept his decision.

OMG, MY HEART ACHES FOR YOU...YOU HAVE BEEN THROUGH HELL ON EARTH....I KNOW WHAT YOU MEAN ABOUT THE PATIENT NOT REALIZING THE PRESSURE THE CARE GIVER IS UNDER....I APPRECIATE ALL THE GREAT SUGGESTIONS...….MY HUSBAND SLEEPS IN A RECLINER AS HE CAN'T BREATHE IN BED.....HE HAS BEEN CHOKING LATELY UNTIL HE RETCHES....SCARES THE BEJESUS OUT OF ME, BUT IT IS CAUSED BY HIS FEEDINGS...ONCE HE BRINGS UP THE PHLEGM HE IS OK AGAIN FOR AWHILE...ONE DAY AT A TIME, SWEET JESUS...…..I THINK THAT'S HOW THE SONG GOES...…….ALLEGRO (JAN)

@allegro Thanks, Jan. I am doing OK now. It was the hardest 2 years of my life, but I had more time to spend with my dad at the end of his life which meant a lot to me. My parents never had to take care of their parents in old age and really just saw their own side of the issues. Loosing control of things made them a bit demanding, but my dad did see how much physical pain I was in and worried about me. In my negotiating with him about getting a feeding tube placed, I promised I would get my spine fixed. The problem with that is no local surgeon would help me, and after the 2 years with my parents and 5 refusals, I sent a request to Mayo. After my dad passed, I came to Mayo and had the spine surgery I needed. Even as I was recovering after my spine surgery, I was getting complaints from family members because I couldn't drive to go help my mom and take her to appointments, and I said that I needed to be cleared by my surgeon.

I wanted to make you aware about aspiration and you might want to discuss the choking during feedings with your husband's doctor. It might not just be phlegm. My dad also had a nebulizer he used with asthma medication to get his lungs clear. That is easy to use and it helped. My dad reached the stage where he was unable to swallow anything correctly and had aspiration pneumonia a few times. It even happened from swallowing his saliva into his lungs. He had a feeding tube through his stomach wall and wasn't allowed any food by mouth which of course frustrated him since he didn't believe it was a problem. When a patient stops eating solid food the stomach shrinks, and then has less ability to accept a liquid feeding, so feedings become a slow drip with an IV bag. If my dad started coughing during a feeding, he could cough up his stomach contents, and there were some times when he started coughing and choking that I opened the stomach tube like a drain pipe to empty his stomach to keep it from going up into his throat and then to his lungs. He had to remain upright for an hour after a feeding before laying down to allow the stomach to empty. I understand your concerns and it might be a warning sign. Aspiration can cause a fatal heart attack.

,@allegro Hi Jan from reading @jenniferhunter ,s,post I just remembered there is something that we used on patients that had a swolloing problem I can't think of the name but the Dr will maybe @becsbuddy knows the name you would put it in the food or drink ,darn wish I could remember the name I will later ☺️

I remember using Thick-it which can thicken fluids to make them easier to swallow. While I was in rehab, the therapist used an electrical stimulation device on my throat. Not fun, but it helped! Get a referral to outpatient therapy and ask to see a speech therapist. Worked for me., good luck!

I remember using Thick-it which can thicken fluids to make them easier to swallow. While I was in rehab, the therapist used an electrical stimulation device on my throat. Not fun, but it helped! Get a referral to outpatient therapy and ask to see a speech therapist. Worked for me., good luck!

@allegro Hi Jan. A speech therapist can help with retraining swallowing. My dad did that and it may have helped a little. They do swallowing tests like a moving X-ray to watch how it works. We did use Thick-it (dry powder) when my dad could still swallow and another one called Simply Thick which worked better because it was a gel in a pump bottle. Here are some links.
http://thickit.com/
https://www.simplythick.com/Bottles-Pumps
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3660277/