How's your wife doing?

RobertsBrown

We all get a version of this, and we seem to start with 'fine' in the early stages, and then maybe some of us get fatigued by the question and get snarky in our responses,

That's my history, but now I have crossed this new line, and honestly I'm a little stuck.

I hear people ask me how my wife is, and they sincerely want to know.  The only connections we have left are the ones that actually care, but things are so far off normal that I just have no idea what to tell people.

Some of you may recall that I have posted here as things progressively got harder for me to deal with, and every adjustment to a 'new normal' was followed by some new shock that required the whole denial-bewilderment-adjustment cycle.  Now, we are so far from normal society that the only people that can actually understand are *some* of you on this board.  I say some, because we are all on different parts of the curve.

The strong temptation is to just avoid the question, but that also just increases the isolation and feeling that we are alone.  Or I am alone, I guess.

Mint

When people ask me this about my mom I feel like they are trying to be kind, and I appreciate that .  There are so many different emotions I would have to express to answer that question.  I don’t feel comfortable expressing them with many people for various reasons. The answer I use is, it is challenging.  Once in awhile, depending on who it is might elaborate on one thing.  I realize they cannot understand and I’m probably better off to be quiet as I might be misunderstood.  That even holds true on here to a degree as my journey has been quite different than some on here.  Once in a while someone posts something that is similar to what I experience.  Still learn a lot here though and appreciate many of the posts.

Rick4407

Hello Roberts.  

I seldom actually see people.  In correspondence to family and distant friends I only say "Pat continues."  It's enough, several have had first hand experience with dementia, others don't ask for more.

Ed1937

When people would ask me, I'd just say she is progressing.

Just Bill

My standard response is "good days and bad days, more good than bad" to end the answered question with a positive note. No one really wants a long detailed answer. It is like when someone asks "how is it going ?" My standard response is "It's just another day in paradise." I have been saying that for decades. If people really want to know how you or your wife are doing you will know and you will be aware of when they are done listening and you close with something positive.

Joydean

I have finally realized that the few friends, we have left have started only asking how am I doing. The truth is I don’t know how I’m doing! My whole world is wrapped around taking care of my husband. I go nowhere nor do anything that’s not centered around him. I was kinda surprised to honestly realize this because I’ve never taken the time to think about it.  Some how I’ve lost me. Don’t know if this even makes sense.

toolbeltexpert

I sometimes am just blunt, I say Alzheimers doesn't get better. Some folks continue to ask anyway. Depending if they have visited I will pass on anything that they might understand. Progression is so slow and she still knows me I think.

Joyce I get that. I was losing my identity, I have been fighting to hold on to me. That's sounds crazy I know but that's what happens when your whole reality is throw out of wack for such a long time. 

Mint

Joy it makes sense to me.

Sligo177

I most always say, "Oh, he's doing OK but the disease is progressing".  If they want details I answer their questions.  But I agree, it's mostly kindness and maybe they don't need much of a response.  I have to bite my tongue sometimes when I am feeling upset, which is fairly often.

GTPremium

First of all (special note to Roberts): DO NOT feel you are alone. Call one of the Alzheimers Association professional counselors; they are amazingly good (I've spoken to them twice.) Attend one of the webinars or virtual conferences (I've been to one and will log on to another next week, under the guise of "doing a Zoom call for work" so my wife doesn't melt down. And keep logging on to this site for advice and comfort. It's here in abundance!! 

To the question of "the question": 

 When the family and I first suspected that all was not right with my wife, we kept "the news" to just three or four of us closest to her. But as other family members -- younger generations too -- began to ask "Is [she] OK? She seems a little, um, different" -- I began to disclose, believing they too have a right to know. The same with friends who would ask a version of the same question; they would then join the circle of information. 

My theory was -- still is -- that just by sharing this emotional and very tangible burden with them, I would not be so alone in bearing it -- and that has indeed been the case. In fact, some people have really stepped up to help, with everything from sending other useful resource information to taking my wife to church, out on shopping trips, etc. The circle of information has become a circle of care, to a good extent.

I also feel it is my duty to inform family and friends -- at the very least, in order to help them "accommodate" her without wondering what the heck is going on with her, or (worse) upsetting her because of an inadvertent remark in cases where they might not know what's going on with her. 

At the beginning, I felt super-guilty "sneaking" around talking about her behind her back. But then I realized that her privacy is less important than the group's responsibility to care for and understand her situation. Besides, her short-term memory is so compromised that privacy feels like much less of an issue now. That said, all conversations and communications still need to happen out of earshot of my wife and beyond her line of sight -- increasingly difficult now that she's into more of a clingy phase. 

But with people who are checking in more out of politeness or sympathy than because they want to sign up to help, I usually say something like "It's not improving" or "Not a great day today, to be honest."  I never sugar-coat it, and unless they're close friends and show genuine curiosity and concern with follow-on questions, I don't elaborate. On the other hand, I don't wallow in the daily awfulness, because (a) nobody really wants to hear that; and (b) I don't want false sympathy from anyone. 

One other key point: my wife (whom we in the family believe is somewhere on the dark side of "mild cognitive impairment" but still able to sort-of function on her own) has not yet been formally diagnosed; that happens a few days from now at the neurologist appointment, when the MRI scan should speak volumes. So I've tried not to use the "A" word or talk loosely about dementia because, for all of the indications, we still do not know for sure.

Does any of this make sense? 

Mint

Yes GT this makes sense.  

RobertsBrown

Good points all around, yes Joy I get you, and appreciate the reference to the hotline.

I was a little cringy reading my post.  I can sure tell when I am posting something when I am down.

What I generally say to people is that from her perspective things are OK.  She is safe, and warm, and fed and loved.  Which is clearly a dodge.  What is more true is that she is lost, and often scared, and when she can't look right at me she doesn't know where I went or if I am coming back.  This can happen in our house, or in a store, or just out walking.  She can look away and lose me and start to panic.  We are now a known couple in the grocery store.  The staff are very kind, and have steered her back to me a few times, with great patience.

We live on a farm, and animals need care.  I get barn help half the week, but I still have to leave the house for between 20 minutes and 45 minutes, twice a day.  In wet or very cold weather, I don't take her with me. During that absence, her de-arranging of everything is in full force, and I always come back to unstacked paperwork, unsorted laundry, strange arrangements of food and shoes, and a bathroom issue.  Her need to relieve herself appears to be tied to my presence.  If I am around, no need to go.  Leave for any reason, gotta go.  I think it must be part of her fear of me being 'gone', like it's not even a choice.  Fight or flight preceded by evacuation.

So, how is she doing? Fine man, just fine....

White Crane

I used to struggle with this question, especially when it came from a casual acquaintance.  Now I just say he's progressing and leave it at that.  If they ask how I'm doing, I say I am hanging in and leave it at that.  Close friends know how we're doing and some of them pray for us daily.  For the rest of the world, I am hanging in.

RCT

I can totally relate…my response is usually… he is good..we are both doing the best we can and and smile leave it at that. Nobody who is not going through this can understand. I am honest with my support groups who get me!