Undiagnosed for years and desperate

Dear Jeffsmock,

Here's another big hug and a comment heading your way.

Sometimes when I have a problem, I only want to be heard and to hear some sympathy. I don't really want or need to hear solutions. So let me start by saying that you really do have my sympathy. You and your wife are in a difficult time of life, a time that our society prefers to ignore, so we all are so unprepared when we have to face it...It's seems almost cruel to tell someone whose heart is breaking that they should try to find happy things. But those hospice people know more about it than anyone else in our society.

I've been reading and rereading your post thinking...I'm sorry that looking at the photos made you both so sad and made you cry. It makes me wonder if a good, hard, all-out, wailing cry together might be a good thing? Especially together. You know, get all the sorrow and anger and frustration out of your systems for a little while? Maybe (I'm not a therapist so I don't know), it would help to confront the negative feelings together?

I read somebody say that, if your heart is full of hate, there's no room for love. Maybe it applies to sorrow, too. If your heart is too full of sorrow, there's no room for anything else. Maybe you can empty some of the sorrow out by having a good cry now and then, so there's room for some present happiness?

I'm not sure how old you are, but let me be bossy and tell you that you men are allowed to cry : ) -- no matter what they told you when you were a boy. And you don't have to hide in your room when you want to cry. A lot of women have known for a long time that a good cry, especially when you share it with someone, is cathartic, and it makes you feel better for a bit.

I'm not sure about this upcoming suggestion, but here goes. Are you two trying too hard to "Be strong!" for each other? Maybe just be "weak" together once in a while? I guess that brings us back to having a good cry together, or something like that.

Well, Jeff, I'm sorry this got so long. I do hope it helps a little, and that it wasn't so far off base as to be discouraging or hurtful in any way. I hope you can have a good day today.

Anne ,thank you so much for your comments. You are correct. I do try to be strong and hide my emotions in front of my wife, so she doesn't get upset. We have had couple of crys together, before hospice was brought in. So it's been awhile. I Love that, be so full of sorrow there's no room for happiness. I will be 60 this month. This is not what I expected. My wife has always been the caretaker when she was able. I'm trying to do the right thing. I don't get to hangout with her as much as I want to. She is a smoker and I had a lung removed a couple of years ago. So I have to retreat to the bedroom if she smokes I'm used to that but when you're trying to spend what time you have left getting even closer. It hurts a little when she lights up to chase me out. I'm trying to reunite her with her family, at least her sisters . I don't if I should just have them come over with out her blessing or what. I could use a little advice on that. I'm not thinking real clear. I really appreciate your response. Thank you, Jeff.

Hi Jeff,

There is a section here in Mayo Connect for caregivers. They might be able to help with the "not what I expected" part. I am the sick one in my marriage, but I know that my husband is right there with you. For me, my chronic illness kinda takes front and center of my mind all of the time so being disappointed kinda gets pushed back. I guess for the "well" partner, there's more space for disappointment about the turn life is taking. You have taught me something today- thank you!

I'm going to put the sisters and family into another reply. Might take me a little while to think it through and type it up...

Hi, again, Jeff,

About the family reuniting...
The hospice folks might be able to help you fastest with suggestions. I'm sure they have seen it all before.

Any advice you get on this point would have to depend on why they are apart. And what your wife thinks about it all.

If the family members just sort of drifted apart, then, yeah, now might be a good time to reach out to them-- with your wife's agreement. Same advice if there was a fight over something stupid in the past. But sometimes in families, the fights over "stupid" things are really a way to separate without addressing something big or serious. You gotta check with your wife here. There may be things in her family that you don't know about.

If there was any kind of abuse or something else really serious, then it might be a good idea to NOT contact them. Again, you have to check with your wife. She may not come right out and explain her reasons, either.

I'm kind of wondering why you think you should try to help them reconcile.

Would seeing her sisters increase your wife's "right-now" happiness?

You know your wife well...Do you think that the separation might be weighing on her conscience in some way? And maybe she doesn't have the energy right now to recognize it or do anything about it? Do you think that, when your wife was healthy, she would have thought that the "right" thing to do was to at least give her siblings a chance to reconcile before it was too late? To me, it seems like a good idea to help your wife do what she would do normally, if she still could think and do normally, not sick. It seems like you would be helping her to be herself. You still need to ask her, though. Plant the seed of reconciliation.

If your wife is religious, then you might be doing her a big favor by helping her to reconcile with (non-abusive) family members. And I guess that depends on her religion, too. Using the Golden Rule lens (treat other people the way that you want to be treated), would your wife want to know if her family member was really sick? If your wife answers "yes," then help her to tell her family about her illness. Then it's up to them to respond. And you, or the hospice person, to be the doorkeeper.

Here's another angle-- it's kind of harsh but just in case: If you are trying to get them to reconcile, when your wife does not want to, ONLY in order to avoid potentially nasty confrontations with her family later, then that is NOT a good enough reason to disturb your wife now. Later, you can tell them the truth: That she didn't want to see them.

Don't forget to consult the hospice people. Some of the long time hospice people-- like the mom of my son-in-law-- have seen so much and have so much wisdom from their experience to share.

About the smoking...She isn't rejecting you in any way, I think. She is just succumbing in that moment to that terrible, powerful physical and mental addiction. Maybe she could chew on a nicorette gum or mint once in a while instead of having that one smoke.

Gee, sorry this got so long! You take care now.
Anne

Anne, thank you again for some sound advice. My wife knows I have been in contact with her sisters. They know she is very ill. I talked to my wife about it. She has agreed to see the sisters. Just not yet. She has had meds change again, so not in pain all the time. She doesn't want to see her Mom. I'm not pushing that at all ,our oldest was trying to get that going, but he doesn't know things that I know about that.We haven't told him, probably never will. Now I have Dr. Appointment and my sister is here ,so that I can go. I hope it's nothing major on my end. I have to be able to take care of her. It was a little hard to do this morning. I was hoping it was nerves but hasn't stopped for about 48 hours. I think it is probably a hernia or something like that. I'm sorry you're ill. I pray for comfort and care. Thank you, Jeff.

HI Jeff,
Hope you are doing ok. I've been under the weather- hence the tardy reply.
Anne

Hi Anne, I hope you are feeling better. I'm doing ok and my wife is holding her own.
One of her sisters have been over it was a good visit. Her sister came back again with her daughter and that went well. Hospice has been awesome. They have helped me. They let me know if I was doing things right or not. Thankfully I was. They have comforted me as well as my wife.
I hope you are feeling better. Thank you Jeff

Hi, Jeff,

Well, that is really nice news. : )

Blessings!