Walking the tightrope

CStrope

Some days I feel like I'm walking a tightrope. Most of DH's sentences are like playing some sort of game like Scattegories.  I have to try and figure out what he's talking about, without asking too many questions.  There's that fine line.....I can ask questions, and risk him flipping out on me, or I can just fake like I know what he's talking about and hope I get close to the right topic.

Then there are the times when I'm tired, so very very tired, and I make the mistake of saying something stupid like "I'm sorry I have no idea what you're talking about".  That for sure gets me a barrage of insults and harsh words.

Today I committed mortal sin number 1.  DH mentioned that maybe he should start substitute teaching again (he did for almost 5 years after retiring from teaching).  I said I didn't think that would be the best thing right now.  When he asked why (and here's where the mortal sin comes in!!), I messed up and said that I thought he might have some difficulties with the "memory issues" he has now.  First I got the insults, then the silent treatment for a few hours, then he finished the night with more derogatory comments.

It makes me so fearful for all that still lies ahead.

TyroneSlothrop

CStrope: I am sorry to hear your situation; and I’m in a similar one. I find (when I’m able to be patient) myself interpreting what DW says, and responding to that instead of to her actual statements. “My son hasn’t called me in months!” means “I miss my son a lot!”  (He lives very near by, and is quite attentive.)

We can discuss her memory weaknesses without conflict in the morning, but not in the evening. I do think that window will likely close sooner or later too. 

Rick4407

I have similar problems with my DW.  I have used two familiar explanations, first because of the virus we can't do that, followed by a short paragraph about how people are getting sick and dying all of the country and its why we wear masks.  Or my second explanation is I just say my memory is getting worse as I get older so I just don't remember.   My sympathetic responses, repeated literally dozens of times a day, defuse her frustration.  I bend the responses to the circumstances...

Hope this helps.  Rick

harshedbuzz

CStrope-

I'm so sorry. Be gentle with yourself- you are a work in progress.

My dad had a tendency to say the sort of ridiculous things that initially triggered an incredulous reaction from both my mom and myself. Over time I learned to respond with well rehearsed scripts that belied what I was really feeling. It really helped to sit down and come up with responses ahead of time as some where really hard for me.

Dad, too, wanted to go back to teaching. My response once I realized he just wanted to be useful or a 45-year-old again? "They'd be lucky to have you". 

HB

Ed1937

This hit a sore spot with me too. Every day she has periods where she can't find the word, and sometimes she thinks what she says makes sense, but I have no idea what she means. Many times I'll get "Let's go to the three to elevens". If I say I don't know what that means, she'll say "You don't know what three to elevens means?"

Mint

Ed just a thought as I have never been in this situation with my mom.  Could you say to her what would you like to do there?  This is something I have seen a few other people on here mention.  Tried it on a few patients at work after reading it here and did seem to work fairly well there.

Jeff86

That’s a big challenge you’re facing, CStrope.

My DW alternates between lucid understandable comments and sentences that trail off into vagueness or meaninglessness.

I have two thoughts for you.  When you can and do understand your DH, agree with whatever he says.  No matter how impractical or illogical.  We can’t reason with PWD’s—their brains are working right.  So we can’t convince them, and we can’t bring them to some objective reality.  If your DH wants to return to teaching, just tell him that’s a great idea.  Maybe we’ll look into it tomorrow....

When you can’t understand your DH, also agree!  I have a whole slew of vague concurrences I can say to my DW when I don’t know what she’s trying to say.  “That sounds good.”  “I think you’re right.”  And so on.

What doesn’t work for me and my DW is asking her to elaborate, or explain, what she has said. She either can’t do it, or she forgets what she was trying to say.

Let us know how you’re doing.  You’ll have ample opportunities to practice!

French

I feel similar, but my partner is very easy.He never insulted me.

When I am not too tired, I try to understand. Sometimes it upsets him a little if I aske questions to understand.

When I am tired, as you do, I can answer frankly and then I receive a dark glare and he stops speaking. Then I feel guilty.

In reality, he doesn't often speak. He is more and more introverted with me. But what he would have to tell me ? He does nothing when at home and what he does when he is to the daycare or with the caregiver, he doesn't remember.

Battlebuddy

Cstrope,  I am right there with you . My husband for a year would ask about going back to work. It was hard because he really wanted to go back to being that healthy guy he was when he was working. I just would remind him that he’s retired now. Or change the subject.

   He used to be sweet and agreeable. Now he doesn’t like what  I say or how I say it. I have to be very careful to not have the slightest bit of frustrated tone to my voice or he gets offended. He talks more and more in a way that I don’t understand. So I find my self agreeing and nodding, and saying” huh imagine that? Ok. Sounds good “etc. where as before I would spend more time decoding the message or asking questions to understand. 

   Very sad because good communication was really our thing and my husband was a master at it. 

Ed1937

Sayra wrote:

Ed just a thought as I have never been in this situation with my mom.  Could you say to her what would you like to do there?  This is something I have seen a few other people on here mention.  Tried it on a few patients at work after reading it here and did seem to work fairly well there.

Hi Sayra. I have used that when she wants to go to see her grandmother or her parents because I don't know if she wants to visit the graves, or visit with them. But much of the time when she gets like that, she means something locally, and for some reason it just never occurred to me to use it there. Thanks for the reminder.

Lynne D

I do that too, weary of a nonsensical world. I usually support his ideas and leave him to pursue them, which he is unable to. It is sad. I, too, reach the end of my rope.

gonegirl40

CStrope Thank you for posting this. I too face this all of the time. I just have found it nearly impossible to stay on my game at all times, for sure evening is the worst as I am tired from work and DH's failing faculties seem to both  be at their worst while he simultaneously is hyper aware of it. I had to go stay with my SIL and daughter for a few weeks as they were expecting our second grandchild and alone in another state and when I came home of course I was in shock at how far things had progressed with my DH. I kept finding myself asking him a question and I got used to being around normally functioning brains and expected I would receive a fairly coherent answer, but instead am met with a game of Scattergories as you so eloquently put it. Finally, I lost my patience and started asking questions in what I call corporate speak which is a bad name for it, because really it is just asking a concrete question where there are only a few choice responses available. Well, you can imagine, that threw my DH into the exact loop that you mentioned. He sulked around for about 30 minutes before I finally asked him what was wrong and he yelled "you know what you did" and that was sad and I felt terrible. But I mean sometimes I just get so frustrated. He forgot about it of course and would argue with me now if I told him that he ever did it. But I hear you and it's hard. Also, not sure about anyone else but my DH runs more toward the FTD spectrum and has a strong family history of FTD and I was sad to see upon my return he has started making racist comments. It is the most absolute uncharacteristic thing in the world for him and it is heartbreaking. My kids are just so sad about it. I thought we were going to skirt it and get more of the sexual innuendo slant as my father in law had, but alas no....looks like our filter is coming off over here. I miss the days when I was worried about him eating off of one of our friend's plate at dinner. Now it's like I have turret's patient over here and I have NO idea what is going to fly out of his mouth. Lucky we have the pandemic happening so it's socially acceptable for me to shut us in over here. Haha. Anyway thanks for listening. On another note, has anyone's spouses gone through a weird sleeping thing? Mine has developed twitching in the beginning of the night every 20-25 seconds like clockwork for about an hour (I have googled and think it's PLMD) and then he goes to sleep and literally does not move, doesn't turn over, doesn't scratch his leg, used to be a heavy snorer and I wore earplugs, and now nothing-total silence. I can barely hear him breathing. Also, he had developed this reynauds syndrome where his hands turn white and blue and are all stiff and his nose is constantly runny and his body temp is like 96 at all times! Def think we are moving to some physical symptoms now maybe when for so long we just had behavioral and cognitive difficulties. So scary!! Thanks for listening.

Gonegirl

CStrope

@GoneGirl40 and Battlebuddy, the lack of meaningful conversations has really gotten me down.  I want to be able to discuss my work day, I want to ask DH what happened on the news while I was working, or just discuss what is going on with our kids or my sister.  But that can't really happen anymore.  I talk....I tell about my day sometimes, but I know there's no understanding and definitely no interest in anything I'm saying.  DH is completely committed to the fact that he is fine and just forgets a word once in a while.  It makes it very very difficult to question him, or try and "guess the topic", because if I say it just wrong, then I'm degrading him and being mean.

M1

Yes cstrope, the loss of companionship is heartbreaking. I am blessed that my partner is less angry and frustrated now than she used to be, and for the most part she's tractable. She has a sense of humor, too, which helps, but she's going downhill pretty fast and the wordfinding difficulty has progressed a lot. We're introverts, too, so I tended to lean on her for the majority of my emotional support, and now I can't. I've transferred most of that to this forum for sure. It felt like a betrayal at first, but not any more. It's just necessary for me to stay sane and keep functioning.

Tonight she was bored watching the news and wanted to know if we had a Netflix DVD but couldn't come up with DVD-you know, one of the little round things that are like records.  That was one of the easier ones to decipher because of the content. And no, I've cancelled our subscription because trying to watch a movie just frustrates her. But I didn't tell her that.

We celebrated her 80th birthday Sunday with our best friends (who introduced us) but she already doesn't remember it. She commented today that we hadn't seen them in a long time.  I need to take a lesson from Lickety and find the humor (so as not to cry).

karwiy

Yes, I too am acutely feeling the loss of companionship and conversation with my DH. It's tough to adapt to this new role absent all of that. My DH was a litigator for over 50 years and opinionated on many issues. Sadly, he really doesn't have a handle on what's going on anymore. We used to share many common interests; again, very little common ground. It's a profound loss. I've learned all about anticipatory grief - death by a thousand cuts indeed.

ElaineD

Dear Cstrope,

Can your DH actually organize the process of 'going back to substitute teaching'?  He probably just wishes he could teach again. I imagine that he cannot actually make the calls, fill out the forms, etc.

Maybe if you just say, 'OK', he will just forget about it the next day?

Just a thought.  

Elaine