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How to handle visitor requests when daily activities get difficult
My ALS progress: I have lost use of my left arm. I can still talk but sound like I am drunk :). Eating is getting difficult. I have to place food on the right side and if it gets out of place, I have to tilt my head to move the food around. When swallowing doesn’t work there can be much coughing/gagging, etc. Right arm and legs are ok.
Question: I have given up on eating out because it causes mental stress for me trying to think about what to order that I can eat with minimal problems, then thinking about how what to do if I need to cough/gag. Now people want to come visit for a few days and now I have those concerns and how I will handle talking all day, etc.
My gut reaction is just to turn off all visits and limit communications to email/text to keep things simple.
How did some of you ALS veterans handle this and how would you do it differently if you were starting out?
Thanks
Doug
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16 Replies
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Hi,
I’m a social person; limiting visits to one hour works for me. I often excuse myself, say that I need to rest or need to use the bathroom. True friends will understand.
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Maggie:
I think what bothers me subconsciously is the thought of altering the usual flow of a group dinner because I can’t keep pace for whatever reason but you are right, my friends / family will completely understand and want to do what’s best for me.
I do need to keep reminding myself that my friends will fully understand the situation no matter what comes up. Thanks for the thoughts.
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Though I enjoy visits from friends, I do get very tired simply by talking and sitting. I find myself committing to visits when I know I have a specific reason to cut it short, such as days with doctors’ appointments, or my infusions. I am totally unable to comfortably have a visit with open ended timing. I do find that friends are very understanding and quickly go with what the timeframe is that I tell them. It then is an enjoyable time together, since it is within what I can tolerate and not feel overstressed or overtired.
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Carolyn:
Establishing practical time limits and combining the visits on days with other commitments are great ideas. I need to realize they will understand and just relax.
Thanks
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Hi Doug, your progression so similar to mine. I lost my left arm first. I was diagnosed 4.5 years ago and likely 7 plus years with ALS. My eating become just like yours starting 6 plus months ago. I have tongue atrophy. I really fought it and lost too much weight as I just couldn’t eat enough. A month ago I got a feeding tube and now get enough nutrition. I lost a lot of strength getting there. I wonder if my strength loss would have been slower if I got tube earlier.
I don’t know the answer for you for visitors. You’ve got to protect yourself so as not to overtax yourself. I have no problems with guests eating regularly while I can’t. My guests are family and all are protective of my welfare.
Good luck to you!-
Bill:
1. At a larger family dinner (family, their spouses, etc.) do you sit at the table with the others and not eat? Does the conversation flow as usual? I guess if I tell them not to feel like they need to draw me into the conversation they would, of course, respect that. With me I think there is this subconscious desire to not be the reason for any uneasiness on the part of others since I’m just now getting to the point where I won’t be able to participate as usual. I just need to realize that they will fully understand any adjustments.
2. I have a clinic visit in a few weeks. I will be asking about feeding tubes. Eating is getting to be a real chore and take a lot of time. Each swallow is work. So far, I am maintaining weight but I can see that I won’t be able to keep this up at some point. Looking back at your experience, when would you have ideally started the feeding tube:
Before weight loss began and eating was very difficult?
At the first sign of weight loss?
Would you tie it to coughing and gagging frequency?
Some other sign or combination of them?
Thanks so much.
Doug
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Hi Doug, I appreciate your thoughts and it helps me to feel not so alone in these types of situations with friends and family. I have always been the kind of person who likes to fully explain to others when I can’t do what they would like me to do, but I find that it’s best if I keep it to a few simple words. Then it seems they do understand, knowing I have ALS, which most people know very little about. Thankfully they do take it well, and I end up feeling so relieved and clearly better physically, since I haven’t put myself in a situation where I end up feeling exhausted and depleted of my energy. It’s hard to accept and realize that it’s not a matter of being selfish, but rather it is self-preservation for my health, and nothing more than that. I hope your times with friends and family can go smooth, especially as you are dealing with issues surrounding meals. Thank goodness we all have each other on these forums to share and understand. It is a lifesaver!
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Carolyn:
Thanks for the additional thoughts. These kinds of details were just what I was looking for.
Thank you
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Doug, I usually sit and not eat or pick at something soft. They understand. My speech is tough so spontaneous back and forth with group is frustrating. My weight loss was slow as chewing issues developed slowly over a year. Snuck up on me . Finally got too much so I went for tube. I went from 181 to 169 getting tube and slowly ramping up amount. Up to 172 now. One of my problems is I went into hyper metabolic stage needing more calories asi consimed less. I probably needed tube a month or three before I got it.
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Bill:
That is just what I needed. I was fearing sitting at the table doing nothing and maybe making the whole thing awkward. Or group meals are usually so fun that I didn’t want to bring things down. Hearing your comments reinforce that I just need to chill out and go and they will understand.
I will definitely be asking the doctors about the feeding tube earlier.
Thanks so much.
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Staying present and in contact with family and friends is important to me. I don’t invite people over as frequently as I did in the past it’s much to tiring. When I extent an invitation I explain that I will make one dish ( still can do some cooking ) and food will be buffet style. People do understand and usually bring a dish. Always informal and if I excuse myself it’s understood. It’s important for me to stay current with family and friends, ALS is isolating enough.
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Elizabeth:
Thanks for the thoughts. Very helpful.
Doug
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Our forum members amaze me daily. You all ask and answer some tough questions daily! I’m so proud that I am part of such a unique online community. It’s a bitter sweet experience to be honest. I’m sure you can all understand that sentiment. Carolyn, I cannot even begin to put into words how much I have learned from you. Grace to begin with. That’s the first thing I think of when I think of you. From our messages to your comments. Sometimes I just stop to think, and Grace is what comes to my mind. I’ll never understand why there has to be diseases like ALS or cancer (or any of the other terrible things out there.) I suppose it isn’t my place to understand why. It’s my place to live while I can, and to make everything I do the best I can do. To make every interaction I have with a person, as positive as possible. I read some of your posts and I think to myself that if you can focus on the positives, find the humor in a situation, find the time and the heart to support and encourage another pALS or caregiver, then I have no reason to not to the same. It’s a ripple effect 🙂 Keep making waves my friends, keep making waves!!
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To everyone that replied:
Thanks so much for taking the time to reply. Even though I have read about and know what is coming, the aspect of being a burden on others has been haunting me. Hearing all of your details from real life have really made a difference. I think it moves it from theoretical future stuff category to concrete details. The details give me something I can plan for and most importantly get my mind correctly thinking about and not over extrapolating.
Thanks so much
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My partner Jon is either in a motorized wheelchair or bed. He has urinary issues and has no control over his bowel movements. Legs and arms are paralyzed and hands almost there. He loves company but we are careful to make sure he is able to go for a period of time, usually an hour, and then we ask company to leave. We find the direct approach works best since company can often have mixed feelings about how long to stay. So far everyone has been respectful and I think grateful that we took the lead. We feel that if they love you and care about you they will follow your requests. We are the same with COVID. We directly ask folks if they have all the vacs. If they aren’t, we thank them for coming but ask them to return when they are vaxed. Jon is going through enough to not be direct and have guests understand his challenges. So far no grievances.
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George:
Thanks for the advice. I will pass the direct approach tip to my wife. Luckily, she is not the shy type and will have no trouble with this.
I agree with your vacs approach as well. I had to do that with my own brother. He still wouldn’t get vaxed so I met him on the back porch, separated by a long distance, wearing masks but I think we will adopt your zero tolerance advice going forward.
Thanks again.
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