Wife not into what's best for her

[JohnnyMags]

Here is something that just popped into my head and I intend to ask her about it as soon as I am done here.

My wife shows little in the way of helping herself and she doesn't seem to be very interested in anything that might help. She has exercises from her PT & OT but I don't see her doing them. She has been told what to eat but she doesn't do it. Same with the BiPap she only uses it a few hours in daytime and not every day. She basically falls asleep in the recliner most of the day. She has no interest in support groups which seems odd to me.

Here I am asking questions and reading about others but she never says how do I join in. I participate in multiple support group meetings but here again she never says she wants to participate. When she was diagnosed my first thoughts were to find support groups. I have spent the last 7 months doing all ALS, looking stuff up, buying equipment, making and going to doctors, support groups, befriending an ALS patient that I talk to often Etc. Etc.

I don't understand how I can be doing so much which she says she appreciates but taking care of herself she doesn't care. I will add she does cry to my face at times so I know this ALS thing is heavy on her mind but she almost seems to act like she feels she has a chance of getting better. That is heartbreaking as is seeing her ignore what she should be doing. Why dosen't she seek help in support groups or just getting on this forum?

 

[Nikki J]

I am really sorry for both of you. Of course we can’t know why. She may be depressed, she may have poor coping mechanisms, she may be in denial ,she may have ftd Maybe it is something else.

I do need to ask is the tkr still on the table? Even without als, having someone who is non compliant with prescribed exercises preop does not auger well for a successful recovery. Rehab from tkr is hard work and painful.

You are trying so hard and I know you are frustrated and only want the best for her

 

[rmt]

JohnnyMags, I spent so much time researching, reading, and asking people for their opinions on how to make things better. My husband was not interested in much either, especially the more his FTD progressed. I spent the last 4 years of his life trying to find solutions, and for a while he tried some things. I desperately wanted him to be one of those people with ALS that seem to fight like hell to keep living life to the fullest. But sadly, that wasn't his path (I blame his FTD). I spent the last 2 years of his life so frustrated that he didn't seem to want to try anything anymore. He thought a new drug was going to come out and magically fix everything. I wish I could go back and just live that time on his terms. I wish I had just tried to enjoy him as he was, instead of trying to turn him back into the man I knew. I was never going to get that man back, and I wish I had accepted that sooner. It is the biggest regret of my life.

My advice to you is to find support for yourself, to accept what is happening. You have tried so hard to make things better for your wife. We all hear the stories of ALS patients that are still living life and getting out, and fighting for every second. That isn't the story I got, and it isn't the story you are getting. And I'm so sorry (for both of us).

 

[Landis02]

My husband is the same. We’ve been in this for 4 years and he still has his head in the sand (and he fully admits this). He has no interest in doing things to help himself. He told me once that he is doing this his way, which he knows is different from how I would handle it.
I still look for things that might make his life better, but I no longer get mad when he immediately rejects the suggestion.
I participate in support groups and talk to a social worker to help keep me sane. But it’s very frustrating to see him wasting away his final years by staying in bed all day.

 

[JohnnyMags]

I talked to my wife last night and when I asked why she isn't interested in support groups she told me she is too scared to hear about the future and what lies ahead for her. Telling me this brought her to tears. She says it's not so much the end (but I'm sure that's part of it) but more what this disease is going to do to her. I take that to mean paralysis, loss of speech, feeding tube, trach all that stuff. As I said she can't discuss it without breaking down in tears. That in turn has me tearing up ... I feel so bad for her. I imagine not seeing her grandkids grow up falls in there too. I told her we need to find things that will get her out of the house and living outside of the recliner and TV. She says OK so we'll see how that develops. I noticed FTD mentioned and that is something I am concerned about too. I guess this is all part of what makes dealing with ALS so hard.

 

[KAD]

I’m weighing in as a pALS. While I understand that partners may have ideas about what’s best, what’s most important to me is my autonomy and respect for my decisions. I don’t attend support groups because I’m not interested (not my thing) and limit going out due to pain and fatigue. My decreasing abilities have shifted my priorities. I don’t mean to discount the pain felt by cALS or the complicating factor of FTD, as this is about your lives, too. Perhaps think about some shared goals, whether they be in or outside the home; her perspective may change with this ever changing landscape. Sending you my good thoughts.

 

[lgelb]

To be fair, with most PALS + CALS couples, one or the other is on the forums, not both, and not just to avoid overlap reading.
Often, that's true of support groups as well.

Up to 75% of PALS have cognitive issues because of ALS, and up to 45% have them to the FTD level. So we cannot say that these are all conscious, fully-informed choices, either.

If she is still crying a lot, Johnny, did you guys discuss Nuedexta at the clinic?

 

[JohnnyMags]

Laurie I don't know how much crying she does when I can't see her. I try to hide my crying from her. Discussing her fear brought the tears rapidly which transmitted to me and that's really kinda bad.
I'm not sure what Nuedexta does or how it effects people.

 

[Nikki J]

Nuedexta helps with emotional lability inappropriate or excessive laughing or crying. I don’t think you can hide that kind of crying. In my experience it is really different than normal crying. And of course you both are entitled to cry. This is sad and scary If you think it is excessive or unusual though for her. Tell the neuro. Let him know.

 

[Serenity]

Hi Johnny. For me, even though I wouldn't say it was at "inappropriate " times, I just couldn't even think about certain things, let alone say them out loud, without the crying just being too much. The Nuedexta has helped me SO SO much, that I am just at a more even keel, if that makes sense. I of course still cry at times, but it is more controlled. I was beginning to have a hard time too being around other people because if it, and it is so much better now. Wish I was there to give both you & Marie a big hug.

 

[JohnnyMags]

BTW the TKR is not off the table but I'd say it's unlikely at this point

 

[KimT]

Aside from the possibility of FTD, it might be depression. Depression leaves you hopeless, tired, sad, and feeling like there is nothing worth fighting for. I had clinical depression many years before ALS. I nearly had to quit my job as a university professor because of it. Once the depression was medically managed, I was back to normal. I still take an antidepressant (Remeron), so don't rule out situational depression due to ALS. It can snowball into many other health-related issues.

When I was depressed, even the smallest thing seemed impossible or I wasn't interested. I remember looking in the refrigerator for something to eat and bursting into tears because I just didn't have the energy to scramble eggs. I was open to both counseling and medically managing the depression.

 

[lgelb]

Yes, I thought we had covered Marie's possible depression earlier, but maybe not. Kim's point is well-taken.

Depression in ALS can take the form of apathy and avoidance very easily, with or without cognitive impairment. If your wife is not eating/sleeping/breathing well, Johnny, she is also expending so much energy on survival that there may not be much left past that. It can be a vicious cycle that way.

 

[Nikki J]

Energy is a great point. It takes me an unbelievable amount of energy to do anything and long recuperation periods to recover. There are times when doing something even if I want to is not worth the energy cost. It is almost physically painful

 

[JohnnyMags]

Well these replies contain a wealth of information most of if not all is very helpful. I think you hit the nail on the head with the depression. I can also see how the depression can lead to the way she is feeling. Also the discussion about lack of energy I can see that in her so now the issue becomes how do I know when she is using too much energy? I really have to think about these replies and how I can use the information to make Maries life better. - Thanks All