Why do you torture me?

Whyzit

I gave DH the choice of coming with me to an appointment or staying home. After thinking for a moment, he said “why do you torture me? You keep doing it!” I guess it is his way of saying don’t give me choices, I’m not capable of figuring it out anymore. I’ll take it as his permission for me to navigate everything for us on my own. I hate being the decision maker on everything. It’s like being married singles or more like a single parent.

Ginastl

Dear Whyzit, 

I use that same verbiage so often.  Single parenting/single living - but still have a husband.  It's so hard.  Thank you for sharing this.  Keep your head high and find the joy everyday!  

White Crane

Whyzit, I know it's hard but the fact is you are the decision maker now.  Sometimes even giving DH the choice of what kind of sandwich he wants brings a pained look to his face.  Most of the time it is best for me to just go ahead and fix what I know he likes.  That's a small decision.  It's so much harder with the big decisions.  I have recently had to make the decision for us to travel several hundred miles next month to attend our grandson's wedding.  After much agonizing, it hit me that the only time I felt at peace was when I thought of him going with me.  Do the best you can.  Make the decisions you need to make and go on.  It's sad and yes, sometimes it feels like being single and married at the same time...or being the parent.  That is the nature of this awful disease.  Sending hugs.

toolbeltexpert

Whyzit yep I am learning that with my dw, what would you like for breakfast. I don't know, I mean everyday every meal, I never was allowed in the kitchen, now I am doing more and more. Asking any question is I don't know. So now I just start doing it cooking cleaning. I can't  imagine how a pwd must feel. Everytime we go out to eat I ask what do you want to eat,the age old question married folks ask and never agree even without dementia. You made me think how hard this is on my dw.  I am gonna remember those words youre dh said before I ask again. Sorry your having to go thru this.

Stuck in the middle

My wife prefers that I order her food, saying "Just get me something I like to eat."  Making her read the menu and make choices is like requiring her to solve a Rubik's cube as the price of dinner.

I don't like having the one functional brain for three people, but I don't get a choice.  I wish you didn't have to join us.

Jeff86

Why it, you have it exactly right.  Your DH is telling you, as unsubtle as it is, that he is incapable of making choices.  

It’s an unenviable position, having to make all decisions, large and small.   But then, everything about AD is unenviable.  Please know you are not alone in being in this uncomfortable situation.   Many of us are walking this same road.   

jmlarue

Beyond being a single parent, I've often described this as someone stealing my husband and leaving me with the sole care of an autistic 5-yr-old child. I finally had to accept that he was incapable of making the simplest choices for himself and asking him to do do was torturous for both of us. Don't be surprised, however, to find that you get the odd push-back.. I took DH to Olive Garden last week for lunch. I tried to ordered for him, but he shot me an angry look and demanded to look at the menu. He'd drawn a line in the sand and pretended to read for a good ten minutes before saying, "I'll have what you're having."

Rescue mom

I also use the “single parent of a large toddler” often—but without the expectation  they will progress and improve in a couple years. We only have decline ahead.

Making every single decision is really hard, but they simply cannot. I hate it too. You don’t ask anymore, you just tell them. Some people think that sounds easy. It’s not. I hate it, I’ve often said it’s the worst thing of this whole ordeal, but we have to do it. Mine would yell “don’t make me decide” about all kinds of things. I finally learned—mostly here—that’s what has to happen, we decide everything. Even the big stuff.

 A very early signal for me was when DH, who used to be a big foodie, stopped looking at menus and just said “same as her” even when I knew he didn’t like that dish much. I don’t ask him anything much about meals anymore (or much of anything else now) I serve and he eats it regardless.

NylaBlue

Jmlarue, I’ve seen that pushback lately myself, in a different way. My husband will ask me what he should do (eg., “Should I take my cap off?”), then whatever I say, he will do the opposite. As long as his choice is not harmful or disruptive I go along, but it’s mildly exasperating.

LauraPaul

I am the parent of a child who is diagnosed with Autism.  My LO has dementia.  I can't help but think that I am parenting another child with Autism as my LO declines.  

He tells me...Tell me what to do...I realize today that he does not know what to do.  He is relying on me to make the decisions.  This is so very sad.

Joydean

I completely agree. I took DH to a restaurant last week, the waitress gave us both a menu, he was trying to look at it, so I ask do you know what you want? I noticed he had the menu upside down. He replied what I always get. I could have just ordered anything for him and it would have been “what I always get.” Some days I think I can’t make anymore decisions, and yet there is always one more to be made.  It is a very sad road we are on!

Arrowhead

My wife is no longer capable of making her own decisions. Most of the time she doesn’t even understand that there is a decision to make or what the choices are. Now I just make all of them on my own; not something that I’m used to doing. When we are out in public, I have to tell her and to show her what I need/want her to do. I’ve never been one to try to control her, but now I don’t have a choice. I’m sure that my controlling of her is obvious to anyone observing us. I just hope that they can tell that there’s a reason for my actions. As caregivers, we don’t always like to do what we must do, but we have to it anyway. 

Bob in LW

These posts have caused me to see the subtleties in my SO's behavior that I had not noticed before.  She still is able to make many decisions herself, but when I ask her what she wants to watch on TV, for instance, she always says, "Oh, put on anything that you want".  I do most of the cooking and when I suggest what we are can have for dinner, she always agrees.  When we are in the car with several stops to make, and I ask her where she wants to go next, she always says that she doesn't care.  Her reluctance to make decisions is a progression that I had not been aware of.

Whyzit

Thank you everyone for sharing your responses. This morning we went out for breakfast and when asked if we needed a menu DH said no. The waitress asked for our order and I told her what I wanted. She turned to DH for his order and he looked at me and said, ok what do I like? Enough said?

jmlarue

Hi Bob in LW - Thought you might be interested to know that one of the earliest symptoms in my DH was a complete failure at making decisions. His executive function literally disappeared overnight. Big problem since he was not yet retired from his job as a quality control inspector for an aerospace company. One simply cannot do that job and not be able to come up with a good or bad, yes or no, pass or fail answer. I never heard from the company, but did hear from colleagues that something seemed "off." When the aphasia (inability to find his words, like a stroke patient) reared it's ugly head, that's when I initiated the search for answers from his primary doc and specialist referrals. It took nearly a year to get a firm diagnosis of vascular dementia. During that time, I learned that there were multiple early symptoms that I had largely ignored. It was only in retrospect that I realized his cognitive decline had been evident for several years.

Rescue mom

Jmlarue, kind of similar here. My DH was senior partner/CEO of his firm, and did a lot of the same work as his employees. I saw things happening at home, but assumed he was fine at the office. (Denial isn’t just a river in Egypt, and you know what they say about assume)

Then he started mentioning how he thought he was being “left out” of work matters. And getting worse at home. Like you, it took about a year to get all the appointments and tests done for Dx of Alzheimer’s.

Turns out he *was* being left out at work. They saw him slipping, but couldn’t figure out what to do, largely because he was boss, and they didn’t want to “cast aspersions.” (Others did, but that another matter). But his work also involved legal standards, and potentially huge damage.  I wish they’d told me, but that’s hindsight now. Maybe others can learn something from it.

CStrope

So many things to respond to here!!

Whyzit and JmLarue -- I had small little cards made that I slip to wait staff and others when necessary, they simply say, my husband has dementia, thank you for your kindness and understanding.  I have found them to be very helpful, especially in restaurant situations.

NylaBlue -- I agree, I try to make as many of the decisions without consulting DH.  When he asks me questions (which some days is quite often!), I try and give the simplest answer possible, usually just Yes or No.  It helps for there to not be extra words for DH to have to deal with.

Bob in LW -- Looking back pre diagnosis, there were so many ways DH managed to function without letting on he was struggling.  He'd give me the TV remote and always tell me to pick something, or when deciding what take out to get he'd say I should decide.  So many little ways he was able to circumvent making even the smallest of decisions.

We all have different stories with so many similar paths........

LosAngeles

I am 53, my Partner, is 77, has Parkinson's and started showing signs of MCI in 2020. We have been together 20+ years and are now registered domestic partners but have our own bank accounts. Late 2020 we went to his bank to cash a check, a rebate check from our insurance company made out to both of us, for the whopping amount of $23. We'd gotten a couple of these checks before and had learned from experience that we both have to be present to cash them. I didn't have an account at that bank at the time, and he never had an ATM card, always banked face-to-face. 

The teller pointedly ignored me during the transaction and turning to my Partner, asked him, "What do you want to do with the money?" 

He turned to me and asked "What do I want to do?" "Cash it." I said. 

So he repeated "Cash it." and she gave us the $23. He tried to divide the money, and gave some to me, which I handed back to him and said "You keep it for your lottery money."

A couple weeks later there was a voice mail on his phone from APS! She'd called at 4pm on a Friday. We worried about it all weekend, wondering what had prompted this. Nothing made any sense. I did wonder if it was the teller, because her behavior had been so odd. He was able to return her call and left a message on her voice mail, asking what it was regarding and requesting to be called back before 3pm. Several days went by before she called back, and when she did it was again late afternoon. Still he was able to hold it together and spoke with her, then I spoke with her. She admitted it was the bank who'd reported us because the teller "thought it was strange" that he wasn't talking and asked me what to do with the money. She also mentioned that after reporting us, the bank looked up his account, which is in the name of his trust set up then 11 years ago, and noted that I am a trustee. 

She didn't end up filing a case, but this experience had caused extra stress for me, if something so trivial as us cashing a piddly check made out to both of us could warrant APS getting involved. I imagine many husbands, without any cognitive issues, turn to their wives in banks and ask what to do with the money from a check. 

Kevcoy

CStrope, I like the idea about the cards.  This past weekend while walking our dogs in our local park they would want to meet and greet the other dogs.  When DH would be talking to the dog's owners I could tell by the look in their face they had no idea what he was talking about.  I thought wouldn't it be nice to have a sign I could hold up behind him that said he has dementia so the people he is talking to could understand what is going on but that would be a little clumsy to carry.

Jean loves wildlife

Just came across this message board that has been up for several days. I am having the same experiences with DH. So puzzling and frustrating sometimes. Unable to order in a restaurant then "I'll have what you're having." Or asking what shirt I want him to wear, whether he will need a jacket outside, and so on. Responds to questions or choices with "whatever you want" or "I don't care." Thank you to all who have posted for your insights into this. I am finally realizing it will be better to offer something for dinner or make what I know he likes rather than asking what he wants for dinner. Asking him to do something like empty the dishwasher works fine. I am working on taking the choices out of the conversation.