Priorities??

[Chewy302]

Hello everyone,

I haven't posted very much, but I need to vent a little today. My BF was officially diagnosed with ALS Dec 2016, but had symptoms for at least a year prior to that.

Now that he is becoming less mobile, I find it very frustrating that he is not taking steps to make arrangements for finances, arrangements, etc before he is no longer able to do so. We do not live together and both own our homes. His house is not in great condition and will be hard to sell. Sometimes I feel like he is being selfish and stubborn and not thinking of his family (his parents are 80+) and me who will be responsible for things when he can no longer care for himself. When I try to bring up these subjects he doesn't want to talk about or gets upset and then I feel guilty for ruining his day. I feel like he is still in denial even though he knows the diagnosis is real. For example, he says the extra mucus and throat closing up is due to allergies and doesn't even consider the possibility that his ALS is progressing.

Also, he has lost roughly 40-50 lbs since December because he does not eat the way he should--never has. BUT what really angers me is he stopped taking the appetite stimulant because he "thinks" it was interfering with his sexual performance. It may be my priorities, but that would be one of the last things I would worry about if I had ALS. And he isn't maintaining very good hygiene because it takes too much energy--even though he has a shower stool and grab bars. He still tries to stand in the shower and fell a few weeks ago. Am I wrong to feel like he should just use the stool!?

I am starting to feel resentful and have thought of leaving the relationship on several occasions but always feel guilty that I would be "abandoning" him.

 

[gooseberry]

Here is the thing...no one with als wants to accept the diagnosis but rather, thru time most do accept it.

Living in denial is easier than having to make the end of life plans. When my husband was diagnosed, I made an appointment with a lawyer. Said he could come or not but it was important to me that my son was taken care of in the future. We went and he made decisions I didnt agree with but they were his decisions.

Als robs people of control. Even though you may want what is best for him, he may have different ideas about what is best for him. You have to respect his decisions. Many times pals and cals dont agree but if you have a disease shouldnt you be able to decide how you are treated?

I used information to get things addressed. I researched FL law and estate planning and talked with my husband about it. Short conversation because he didnt want to have the discussion. But I left the information for him to look at which he did.

Hygiene is tricky. Sometimes getting up from a shower chair is trickier than standing. Do you help him bath!? Can you? Water flossers and auto toothbrushes are helpful but sometimes they causes spasms in the face or jaw.

You say he isnt eating right. He has a limited time on earth......getting calories in needs to be the goal. Smoothies, soups, crockpot meals can all be good choices. Do you prepare him meals or help with it? Sometimes it seems easy to fix but once you are in the detail side of an issue it is much more complex. My husband stopped eating when I wasnt homebecause he was afraid of choking. Something he didnt tell me for a long time.

 

[Atsugi]

Just my view.

In a committed relationship, two people have the ALS problem. One will die, the other will carry on. So the question the survivor needs to answer is this:
- After his death, will I be living the best life I possibly could? Are we arranging for that?
One person's life is being destroyed by the disease. Don't let the disease destroy your life, too.

One more thought:
You guys are not committed. Does he have parents who can help him?

 

[lgelb]

Chewy, you need to say to him what you have said to us in abbreviated form. You might take stock and decide the one or two things that are really driving your resentment and thoughts of leaving. Then you should tell him just that. You might decide that you are willing to stay, but he should know why you are thinking of leaving. I can't guarantee that it will change his behavior in any way, since you probably have told him just that, but at least give him the facts in full.

As to your considering leaving, am I wrong to wonder if you have considered that even before ALS? This disease is not a good crucible. It's not a matter of your "commitment," since half those in "committed" relationships aren't really, but where you are right now, in this moment.

His relationship with his parents especially now is not yours to control. [Mike, Chewy mentioned the parents are in their 80s so they are not going to be caregivers, likely.]

1) if you want to leave, do it with forethought and communication, but in a timely fashion, and 2) don't stay out of guilt.

Best,
Laurie