Recluse

[Mrs C]

My husband is very weak to where he can not walk far or steadily at all...he will no longer attend any of our social or personal events. He has refused to leave the house since mid-August. How do I dress the wheelchair issue with him? He says he doesn't want to be "that guy." how can I nicely remind him he IS "that guy"? or should I just leave him to his own choices? he used to be fine with a cane for assistance.

Another issue related to that is my friends tell me I need to do things even if he does not want to. I have, but it is not enjoyable for me since I just worry about him while I am away. Besides, I did not couple up with him for the last 7 years, then marry him this past January, to go places alone!

Thoughts anybody?

 

[Katie C]

You might try turning it into a favor to you: "Y'know honey I'd like to get out more but I worry that if you took a tumble I couldn't help you. You don't have to use the wheelchair all the time, but maybe we could try it and see if we both had a better time while we were out?"

 

[HelenL]

can he use a scooter? I love the freedom mine gives me, and don't use a wheelchair unless I absolutely have to... I take my dog for walks with my scooter, just to get out of the house and into the neighborhood did me a world of good. I'd start small like going outside with it around the house and yard/street... when he feels more comfortable, maybe he'll venture further. I even took my sons and a friend of theirs to a classic car show this summer, it was a lot of fun zipping around in it. I always bring my cane with the scooter as well.

 

[penny1]

Right now he is that guy sitting on the couch, he could be that guy in a wheelchair fishing, hunting, flipping burgers on the grill, walking the dog, watering the garden. my husband was an unstopable force. Yes we had the wheelchair stuck in the mud, slipping in the snow and once or twice running over a friends toes. Life as you knew it has changed, and it will change many times in the future. At some point you may need to feed him, John always said if the rest of the world doesn't want to see it they shouldn't look, I plan getting out there and kicking butt as long as I can. And he did, it takes a big person to let friends see you at less than 100%. The important part is live your life any way you can, it is all anyone can do. Pride is funny thing, be proud you are still out there kicking butt.
Penny1

 

[abbas child]

Mrs. C, how long ago was your husband having problems? Is he progressing quickly? I ask because when we have enough time (however long that is!), we seem to be able to accept these progressing losses with much more ease. That said, he does of course need to begin using adaptive equipment, and realize there is no shame attached. I found when out in public in the power chair, people were so very kind to me, opening doors, making eye contact and smiling.

As you know, we're all different in how we handle each aspect of the disease. Each change is much easier in actuality than it was in my "thinking ahead". The advice given above is all good. I'm in the hospital bed stage, myself--and don't mind the somewhat sterile look of my room one bit. Being comfortable wins every time, but I didn't have that mindset whatsoever the first couple of years.

Ann xo

 

[rose]

Gosh, I hope this does not bring down a fuhrer, and please don't be offended; everyone's relationships are different, and some are more playful in spirit than others..... BUT, what I would consider, is having a very special "moment" (hopefully longer than a moment) with him in the chair. It really might help him view it as something that is not stripping him of his identity and/or possibly his masculinity.

 

[abbas child]

Good idea! Go for it!

 

[HelenL]

yeah Baby!

 

[rose]

Whew 8) Sometimes I think people may be looking for "serious" answers to serious problems. However, I was, indeed serious, as in "sincere" about the suggestion. (Kind of like breaking in the new car (not that I'd know about that) it is, after all, a new set of wheels.

PS, it really irritates me that I misspelt furor in my earlier response. That's spell check for ya :|

 

[abbas child]

Well, Diane, I just thought the fuhrer was a fascist who hated remotely racy comments, and never doubted your spelling! And I think your comment was serious. In fact, I have thought in the past that it's a shame as a woman we can't be arranged differently in the power chair. And we can't use a condom catheter...thought I'd add that also.

 

[Barbie]

My hubby did the same thing and nothing ever made him go back to being social. sadly and my own fault, I joined him out of wifely respect(?). I doubt there is anyway you can make him realize that he needs to keep living his life and he is the same man he always was. What I mean is he has to realize it himself. It is hard to do things alone when you would rather be with him but you should. I do try to do things once a month or so--he is always invited but never attends. Also, I agree-- a scooter is a good half way item and are not that expensive. he won't worry about falling and embarrassing himself and most people are very accepting of them. one other thought--depression or anxiety drugs? they do help and he is dealing with a lot....(you too)

 

[Miss]

When my husband was diagnosed, it was very clear that he was experiencing a fast progression. At first, he wanted to hid his disability. He didn't want to appear less than "whole". So, I sat down and talked to him about who he wanted to be - a man dying from ALS or a man living with ALS. I reminded him that there was a high school graduation, the beach, football games, holidays and friends. So many, many friends that wanted him to stay a part of life. I could not force the living. I could only commit to him that I would do everything in my power to keep him a part of the world and life. That's really all I had to offer my husband. He chose to live with ALS, and he lived well and with purpose. His life gave him joy even though he was a complete quadriplegic and could not talk. He went to the local tavern with friends on a Friday, hung out with our 17 year old son on Saturday, watched a Cowboy's game with his twin on Sunday, woke up bright and cheery on Monday. Suddenly and peacefully, he slipped away while we were getting him bathed and dressed. He wouldn't have traded the time he spent with friends and family for anything. Certainly not to sit around the house waiting to die. I'm not going to pretend that it wasn't hard work for me to get him where he wanted to go, it was. It was hard on him sometimes, too. But it was worth it.

 

[Mrs C]

Miss, I like your approach. I I'll give it a try. You really have to decide if you are going to live with it, or die from it. GREAT POINT! tonight I talked to him about the scooter nd he replied that he is not ready yet. It has been a year since diagnosis....time to take our lives back! God bless you.

 

[KKay]

I dont know that I have helpful advice... When my husband was diagnosed our social life changed as well as our priorities. He didn't want to go out because he didnt want to see/ talk to alot of people. Even though the only noticable thing about his illness at the time was a limp and an occasional trip and fall. But I did understand, well meaning and caring people asked "How are you? How do you feel? Let me know if I can do anything." Well the answers were "Great, Really good, Thanks we're hanging in there" The real answers>>> "I'm dying, Feel like S*&% all the time, Do you have of a cure?" So being out around friends and socializing was difficult. What we did was have friends(and their kids) over to our house. And when I invited them I flat out said We can talk about anything but the elephant in the room, he doesn't want to talk about it. And guess what? We did have a lot of laughs and fun. I didn't go out on my own much, it made me sad to be out without him and knew that where I belonged was with him, for better or worse. And it wasn't always happy and fun being at home because he was going thru a very difficult time, he was very much to himself during those years (yes, years). Now he is wheelchair bound and going places is very difficult for him( and he has NEVER wanted to be THAT guy in the wheelchair), but I dont think he regrets not doing more the last few years. As long as he has no regrets... and we did talk about that over the years, and he has said this is what I want to do. Not everyone wants to "live like they were dying", some people just want to do what they feel like doing. And who am I to tell him what he feels like doing or should be doing? To a certain extent of course, we do talk about things that are good for him/us to be doing now that he is comfortable doing, those priorities have changed. I have just tried to keep it light and somewhat fun. And I include him in all that is going on, even if he doesn't participate. I do go out a little more now, mostly with the kids. And I can leave for a few hours without breaking into a sweat and feeling like "I HAVE TO GET HOME!" But I also know that things are getting worse and before it gets really bad I need to give more to my kids and recharge myself. When people ask where I have been and why I'm not out more and how I have to get out more, I just honestly say.. Yes it is good to get out sometimes, I enjoy it. But I'm taking care of my family and that is my time well spent - No regrets. My advice, go where your heart tells you to be and be honest with yourself about what you need.

 

[HelenL]

Since I can't walk from the house to the car without being afraid of falling... and then not being able to get up... I also limit my trips out... but I so enjoy the freedom that my scooter has brought to me! I don't want to be that person in the wheelchair at the store, restaurant, etc., but I cannot rely on my legs, they wobble. (I know I'm not a Weeble, 'cause Weebles wobble but they don't fall down!). I also use the rollator walker alot, so I have a seat if I need it, but am nervous about that in situations as well. If you don't go face those fears about getting out, and dealing with people, you won't be able to LIVE your life.

I would suggest contacting your local ALS group and see if they have a loaner scooter (and lift for the car if at all possible!), and ramp for the house. I make it a point to have fun when I'm in my scooter, I take the dog for a fast walk, zip around the yard/house, chase my kids down the aisles at the store, etc. Yes, I have gotten myself stuck a couple of times, but there's always someone around to push the darn thing out of the ditch I though my little tires would work in. So my suggestion would be to get a free one if possible, or a cheap one off the internet and have it there for him. And go for that walk around the yard with it. Make it a fun time, he's a guy, deck it out like a harley or something!

Good luck!