Night Out

[JohnnyMags]

Well I got my wife to go out tonight but it wasn't easy. I can't believe how much she is against going out. One of her fears is going to the bathroom and/or having an accident before she can get to the rest room. The other fear is getting up off a low toilet (we have high toilets in all our bath rooms at home). We went with a couple we use to go out with almost every weekend. As it turned out the band wasn't that good and the other couple decided we should leave around 9:00 PM. During the night the gentleman we were out with mentioned a good band was playing about 20 min away. I think he was waiting for me to say let's go there. When we left I suspected they were going to see he other band with out us. Naturally I felt bad that we couldn't act like we use to. I am trying so hard to live as close to normal as I can but it's nights like this that kind of remind me of the old days and what we can't do ... it has to be so hard for my wife feeling like she can't do anything and I think she blames herself despite me telling her I don't mind whatever I have to do for her and it's clearly not her fault.

 

[lgelb]

This seems like a glass half full thing, Johnny.

If this couple are your friends, they should understand that you might not want to be out all night (to avoid any misunderstanding, you can nonchalantly say, "I think we'll call it a night, but go for it"), and if they went on to see the other band by themselves, does that really change anything? There were a lot of people out tonight, but not everyone followed their friends to every stop.

Though you might want to scope out the band more next time (most have something posted you can check out), nothing in what happened seems like it should put you off going out by yourselves or socializing some. I for one am glad you got out and I hope your wife despite her misgivings ultimately feels the same. I would take care not to project your regrets on to her, to make sure she can put it all in her own perspective. You got out, you hung out, maybe not the best outing ever, but nothing really bad happened, is a possible take-home.

 

[rmt]

It feels like you are trying very hard to have your life be the same as before ALS. It isn't. Your wife can't do things she could do before, and some things that were fun for her before, probably aren't fun anymore. It sucks, for everybody, but it is true. And I'm sure she senses that you are sad and disappointed that things are changing. I'm sure she is too. This isn't the life anyone would choose.

It would be interesting to know what she wants to do these days. Maybe there are things she would be happy doing, that you didn't used to do. Simple things at home, that aren't stressful for her. And maybe you can go out with friends without her to do the things you want to do. Does she have friends or family that she would want to spend time with so that you both can be having a good time, just not together, for an afternoon or evening?

The lifestyle changes are so hard. Soul crushing, really. And the thing that I thought was the worst, was knowing that eventually I would be able to do those things again, but my husband wouldn't be there with me.

 

[annlee]

It's great that you got out and gave it a go, even if there was some disappointment. I have the same issues as your wife regarding bathroom concerns away from home. Only God knows what a "handicap bathroom" is going to be like! (Will a powerchair even fit in some of them!) I am determined to not let that stop me. Although, I do understand the stress. Giving up hobbies and dreams is a challenge, but it can clear the way for new things. I have worked my entire adult life. This IS my retirement, (which came earlier than I had planned.) This is not the retirement I expected, but it's the only one I will get! I'm determined to find a way to enjoy it some each day. I have found some new hobbies and failed at even more. I've made a few new friends, and lost others. I've had some tears along the way, but found a great deal of joy and laughter in the process. It's hard to let go of "the way things were", but it is possible to do so and move forward. Change can be a challenge, but also an opportunity. I can't "beat this disease", but that does not mean "it's going to beat me" either. Hang in there and don't give up. Good memories can still be made.

 

[JohnnyMags]

Thanks for all the advice I will try to find things to do I know finding things to take our minds off of the reality helps a lot. Despite the things I was unhappy with last night it was still nice to be out. Part of my problem is worrying that the other couple isn't having fun and then feeling it's our fault. I will say that's more in my head they don't say anything like that. We are attempting to improve Marie's ability and desire to go out by doing this:
This week we are moving ahead with something I know some people on this site are not in favor of. That is knee surgery. Her PCP cleared her for surgery, The ALS doctor as well as the ALS nurse said her arms and legs are strong and breathing was also strong (we will see if that's still true when we see Temple clinic again May 20) anyway they said she was ok for the surgery. My wife currently complains about the pain in her knees extensively so the hope is an improvement in her mobility and making it easier for her to go out along with other things. Her PCP who is usually very conservative said if they won't do surgery how are they going to treat her pain? He also said it will be harder to deal with down the road and if she lives a long while that's a lot of knee pain.
Now the run around. We had an appt with the surgeon April 4th to see if he felt she could handle the surgery. First we got a call canceling our consultation then two days later they called to tell us the doctor was canceling all surgeries for now. Our doctor has a highly regarded associate that I managed to get an appt with for this Wed. My worry now is if he says he will do her surgery is he going to say 6 month wait? (That's how long we were waiting for the first doctor). I only want one of her knees done then we will see how things go. This is not an easy decision on our part ... it's a risk/reward decision.

 

[lgelb]

Re the fear of accidents, you could always role-play that exact scenario -- it happens, you make excuses, and leave. Or you bring a change of garments. Or she wears pull-ups that night.

As for toilet height, you can certainly bring a portable inflatable cushion or make sure the venue has a handicapped stall -- whoever answers their email or phone is usually happy to tell you. Or you could bring a folding female urinal for use in the bathroom for a shorter delay.

Sooner or later, you are going to end up in the ladies' helping her. I'm guessing that might be one of the elephants in your room. It really seems much worse than it is.

Re the surgery, if you are convinced that no less invasive procedure will accomplish what you seek, and that the associate is the person for the job, don't hesitate to play the ALS card in scheduling if you need to, and the ALS clinic can likely add support for that if you ask.

On the other hand, don't jump at the hook if this guy and also, critically, the coordinator that you would be dealing with don't grab you -- it's pretty important that both be willing to prioritize not just scheduling but pre-booking rehab, PT, etc., customizing the protocol given her ALS, making sure you have equipment, and coordinating with the ALS clinic if/as needed to jump start recovery as much as possible but also to keep her safe.

Not knowing who all's in your network, this might be one of the times you look past Temple if necessary to have a larger candidate pool. There are many excellent orthopods who chose not to lead the academic life.

 

[JohnnyMags]

Thank you Laurie your advice has been invaluable. My wife will find something wrong with all the solutions you mention. That's were I come in convincing her that these are workable answers to her no's. As far as me being in the ladies room we already did that two weeks ago when I convinced her to go to the movies. Here's what is confusing to me she walks with a walker (knee pain) and walking distance is hard for her. We have both a manual and a powered wheel chair. When we went to the movies I gave her a choice of either wheel chair or the walker and she chose walker. The only reason I can think of for preferring the walker over the less effort wheel chair is a vanity issue. I have to convince her certain venues a wheel chair just works better.

As for the knee pain we have consult this Wed. with surgeon #2

 

[Landis02]

Johnny, it could be that your wife really, really doesn’t want to go out. Last year, I had a discussion with my husband concerning staying more social by going out more. He told me that he’s handling his disease how he wants to handle it. Since then, I’ve quit pushing him to do more. It’s not how I would chose to live and I hate our isolation, but it makes him comfortable so I stay quiet. Maybe you need to have an honest talk with her to see what she wants to do.

 

[JohnnyMags]

Landis - You may have hit the nail on the head ... She was comfortable staying home even before she got sick but she always had a good time which she confirmed after we went out. I guess another thing that contributes to her feeling different. Before she wasn't a fall over drunk but she/we did drink when we went out to a club. Now she just drinks soda (which is fine by me) because she doesn't want alcohol in her body plus she fears it would contribute to her sense of falling (balance). We will work it out I guess we have no other choice and like you say it's the sick spouses choice.

 

[annlee]

Is it possible you could still have a couple (or two) over for simple dinner or simple dessert (pizza delivery, frozen cobbler etc. ) and an activity like playing cards, or other games? Something like that may let you stay connected and not feel so alone without having to do a great deal of work. That would also allow your wife to feel more comfortable regarding bathroom concerns.

 

[EJC]

Have a jolly good cry in private?

 

[JohnnyMags]

EJC ... I've done that ... several times!

 

[JohnnyMags]

OK here we are moving ahead to May 17th during that time we went out to dinner twice. That was nice and I think my wife enjoyed that but it takes encouraging to get her to go. I've asked her 3 or 4 times if she wants to go to a movie (the latest being tonight) and she says no every time. I'm pretty sure I could convince her to go if I persisted but I just say OK because that's her desire. I've seen numerous people on this forum say how they are going to live the best life they can and it makes me feel like my wife is missing out. I don't want to see her just waiting to die. I'd like to create more memories for us both and not just watch TV 24/7.

 

[KimT]

Is your wife in physical pain? I know that puts a damper on my going out more. If I'm away from my lift chair and bidet for more than a couple hours, I feel it. I also have a routine.

My situation is different. My progression is super slow, but I also have another condition that causes very bad pain and other symptoms (Ehlers-Danlos Syndrome.). I compensated by buying myself an 82-inch TV during Covid and a 62-inch for my bedroom this year.

I also have no living relatives nearby except a SIL and she is 83. I'm thankful she can still care for herself. I have no spouse or children, so when I can't take care of myself, it'll be all out of pocket except maybe some errands from friends and shared expenses from my housemate.

I did decide I wanted to go back to church so beginning next Saturday, I will go as long as I'm not in too much pain. I'll take my walker.

I still cook but it takes a lot out of me. I've never been big on processed food, so it's time consuming. Good thing is I love leftovers.

Looking back, I wish I had done more when I was first diagnosed. I worked for awhile, then took care of my brother's needs for about a year before I moved to the beach. There was a two-year window when I socialized a lot with people, but didn't travel. I wish I had.

If I had a husband, I''d want him to go out with his buddies, go to games, play golf, or do whatever made him happy. I hope you and she can find a place where you are both accepting and content with how things are and how they will be.

 

[JohnnyMags]

Kim my wife only has pain in her knees but her main objection to going out is the bathroom fear. I followed a suggestion on this forum about getting a folding urinal but what I didn't account for is her standing issue is balance meaning she has to be holding onto something when standing and that means she can't hold the urinal ... unless I held it for her ... is that practical? Another thing about her just watching TV from her recliner ... When I'm not watching with her she watches the same comedy shows over and over again and she admits she's kind of tired of that.
As for you Kim I'm sorry for your pain that can really make life tough ... I am surprised you have no husband because you are such a likeable person and for the most part very upbeat. When it comes to caregivers I'm like you I have no living relatives except my two sons who both have very small children and they need attention so I am also pretty much alone in the care department. As for the religion I wish I was a believer, actually believing there is an after life would be very comforting for both me and my wife but that's not something you can just turn on.