I am ready to throw in the towel again...

Care4Mom2

First, I screwed up. I was talking to my sister-in-law on the phone and she asked how things were going with my DH. I told her a few things that have happened. Nothing that my DH doesn't know about or I haven't talked to him about. Little did I know, my DH was listening to my conversation. I guess he felt a need to eaves-drop. He was/is pissed. 

I understand that no one likes to hear someone talk about them. I get that. But, he is 74 years old and should not act like a teenager about it. Also, what I said was not that bad. I mentioned to my SIL that my DH could not hang a curtain rod the other day and I had to call a handyman (again). I try to give my DH an opportunity to do something so that he feels useful, even though he has had issues doing simple things. He has a big ego.

After I marked where the curtain bracket should go, he just stood there. I asked him what he was doing and he told me he was waiting for me to tell him what to do. After he was unable to figure out where the stud was, I told him to leave it and I would call a handyman. Which is what I did.

I also told my SIL that we had a fight on a recent trip and didn't speak for 2.5 hours of the trip. Even though, I don't let him drive much, I was tired and he had to drive. But, I had questioned something he was doing. He didn't like that. I mentioned to my SIL that the doctor was glad I was not letting him drive often. Again, all this my DH knew about before he heard me tell my SIL. It was probably more of an ego deflater, I think. 

After all that, he told me not to speak to him. Even though I have apologized twice since then, he still is not speaking to me. And, I have nothing to say to him. If I say anything it will end up in a fight and I am tired of fighting.

What my DH told me was that what I told my SIL "was personal." Was it, though? There are certainly more "personal" things I could have told her about his behavior, but didn't. But, there is something that has happened a few times this week that has be wondering. A few times this week I have said something, and my DH has heard something totally different. 

One thing had to do with hanging a flag. I bought him a USMC flag that I told him we could hang during holidays, like Veteran's Day. Then, he said something completely different, like I said we could hang it along with our US flag. (The community will only allow one flag flown at a time.) He said, his mind was saying that. I told him that what his mind was saying was not what I said.

The other incident had to do with something he said but thought I said.

So, I am thinking that his mind is telling him that what I said while I was talking to my SIL was something completely different than what I actually said. (Not as "personal" as his mind is telling him.)

I don't know if this is all related to Alzheimer's (he has not officially been diagnosed with that, though one doctor thinks that is what he has), or if it is some sort of metal illness.

My DH's only friend feels for me because he knows what type of personality I am dealing with. My DH refuses additional testing, though I am going to tell him (the next time we talk) that I would highly recommend he do that for the sake of our marriage. I am really growing tired of it all. I have also wished of my life to be over, which is not a good thing. Not only will my DH be completely lost without me, but I will never have an opportunity for true happiness.

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Ed1937

Victoria always makes good common sense posts that should be considered. Please do that.

And please check to see where he is if you are talking to someone else about his shortcomings. Nobody, even though we realize our own shortcomings, wants to hear someone else talking about them to another person.

One other thing. if you don't correct him when he says something that you know is not true, that will work in your favor. Arguing with a PWD is a losing battle, and one you don't need.

This disease is hard for both of you, but you need to see things through his eyes. When you do that, it will become a little easier. I am not trying to berate you, but trying to make it easier for you.

M1

CM, we all know how hard this is and can empathize enormously.  The fact is that you are losing your spouse--probably already have--and with that comes so many losses, not only in ability to do things, but also the loss of the person you've always counted on and has always been there, and that you knew how to talk to and what to expect.  And it is so, so lonely when that happens.  This is part of the transition from spouse to caregiver.  It's not a two-way street any more.

And yes, all your conversations about what is happening have to be out of his earshot.  Mine were nearly all by text or computer-like this forum--because she lost the ability for those things early.  Couldn't talk on the phone if she was in the house, and couldn't talk to other people in person unless she wasn't around.

So I agree with Victoria and Ed, don't beat yourself up, chalk it up to a learned experience.  The good news:  he's going to forget what happened, I can almost guarantee it.  But it is worth a look at where your supports are for caregiving.  This forum can be a big part of that.  I couldn't have survived the last two years without it.

MaryG123

Yes, as has been well put, chalk it up to experience and move on.  I have to forgive myself for something I did or said nearly every day.  My DH is in the early undiagnosed stage of dementia as well, and I find it so hard to remember that he is no longer the person he was.  I don’t ask him to do things around the house, and even cleaning the floors had him confused the other day.  Like your DH, he said that he couldn’t remember what to do.  I think that’s where the anger comes from, but we become the target.  He can help me if given clear simple instructions like “Please hold this.”  Thanks to the advice I have received on this forum, when he gets upset with me I try to remember to apologize, fake a smile, tell him I love him, and distract him.  A drive or a food treat usually improves his mood.  You can do this!

Joydean

CM, you truly have received great advice here. I can only add my 2cents worth. In the beginning it is extremely hard, they still look the same and mostly act the same, that’s what makes it so hard, or for me it did. The truth is their brain cells are being destroyed. They know something is not “right “ but they don’t know why. They get very frustrated. My dh could do anything that needed doing around the house. I am grateful for the fact I always wanted to learn how. For the last 7 years I have been the handyman around our house.  I have also learned how to do things I had no interest in doing, thank God I do! 

This road has no u turns, just a one way.  I didn’t notice that anything was said so far about making sure you have all legal information taken care of. Will’s, DPOA, medical poa, and any others. These are very important for you to make sure they are done asap if you haven’t already.

This forum has some of the best folks here, they have been a life saver for me. It’s like an extended family so come anytime! 

Care4Mom2

In didn’t realize my DH was in the house when I was talking to my SIL. He had been in the garage trying to hang a rack. (He eventually did it, but it took him all day.) This morning, he took it upon himself to try to hang curtain rods. I didn’t ask him, nor did I tell him not to. He has spent two hours so far, trying to find a stud…

MaryG123

Heartbreaking.

Ed1937

Care4Mom2 wrote:

This morning, he took it upon himself to try to hang curtain rods. I didn’t ask him, nor did I tell him not to. He has spent two hours so far, trying to find a stud…

You mentioned that twice. Finding a stud should not be necessary for hanging curtain rods. Those small plastic inserts that you put in a drilled hole is all that is needed. 

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Care4Mom2

My DH finally got one set of curtains rods up. Now, he is working on two other windows. 

He is using a stud finder (I even bought him a new one after he complained the other one wasn’t working….) He is insistent on finding a stud even after I said the bracket has to be in the same place as the first one (1.5 inches from the edge of the molding.) He said, but there is no stud. I said then you have to use an anchor…. But, he is still trying to find a stud… I am just biting my tongue and I walked out of the room so I can take a deep breath and eat a muffin…

Joydean

Care4, I hope i don’t sound  rude, but you need to stop sweating the simple things, you can always redo hanging a curtain rod. Try just appreciating what he is trying to do. Enjoy the time you have with him, you can even have fun doing things together. You might be surprised at the fun you guys can have doing just simply little things together. I honestly do not mean for my comment to be hurtful. I’m also just sharing how much I did learn from working beside my dh, by letting him “still try “ it helped his confidence level and made him still feel good about his self. In other words, it helped keep him a happy camper! 

Best wishes for you and your hd. 

Bob in LW

Care4Mom2 wrote:

 Even though, I don't let him drive much, I was tired and he had to drive. But, I had questioned something he was doing. He didn't like that. I mentioned to my SIL that the doctor was glad I was not letting him drive often. Again, all this my DH knew about before he heard me tell my SIL. It was probably more of an ego deflater, I think. 

As has been discussed on different threads on this board, a person with dementia should not be driving at all, and you, as his caregiver, could be legally liable if he should cause an accident. You should probably consult with your attorney about this, because you certainly don't more grief than you are already dealing with.

Iris L.

Your DH will be able to do less and less.  You will have to forget about making him feel useful. Safety has to become a priority.  Also, read about "failure-free" activities.  Figure out how to provide easy tasks for him, even if you have to do them over again.  

Iris L.

ImMaggieMae

Care4, I agree with Joydean, don’t sweat the small stuff. These types of actions on his part will change - he will get worse. He has this horrible disease and cannot change, but you can. All of this is much more difficult in the beginning because you aren’t used to this kind of behavior or expecting it. He looks the same, probably sounds the same, but his brain is slowly being destroyed. After a while you get used to it and you get used to the idea that you have to pick up the slack. He is probably very fearful of all the things that are happening to him that he has no control over. He can’t change, but you can. Do everything you can to make him feel loved and supported. It isn’t easy, especially when it gets to the point where he needs constant supervision. I wish someone would have told me in the beginning that calmness on my part would make things easier, even when I felt more panic than calm. Fake it til you make it. It helps.

saltom

Care4, I, too am relatively new at this game.  It seems as if  you understand the rules and then they change.  I agree with all that has been written above and do want to add DON'T TAKE ANY OF YOUR HUSBANDS RESPONSES OR ACTIONS PERSONALLY.  It is not the husband you have known for many years, it is the horrible disease killing his brain.  And do find a way to take care of yourself. Take a walk, talk to an understanding friend, get someone to come in and relieve you a few  hours, whatever you do to reward yourself. And read the postings in this forum.  They are a wealth of information and support.

Just Bill

Last night I was talking to my brother on the phone and I was explaining how her brain is unpacking information, learning in reverse. Her brain is unlearning a little more every day. She over heard that. She got upset for about 5 minutes and it was completely forgotten in a half hour. She has made coffee every morning for 35 years. Recently she lost the ability to operate the Mr. Coffee. She has zero responsibilities. From paying bills to feeding the dog, I now do it all. It was an adjustment but I adapted. She doesn't react well to constructive criticism so I just say great job anytime she attempts to help me. She loves to help and I just keep giving her tasks that really don't matter. She feels needed and that is what is important. It's just another adjustment/adaptation. They keep coming, I keep adjusting and adapting.

storycrafter

What you describe about how he changed details regarding what was actually said or happened, sounds like what my husband does now and then - confabulation. It's comes with this strange territory of brain damage. They come up with details to fill in the gaps and don't even know they've done so. The brain is so complex and creative sometimes.

There is so much to learn especially early on, so much is changing in your relationship, and it can often be overwhelming. Give yourself A LOT of grace and patience because the learning curve is steep. Others have already shared so well what I can only add to with my commisseration and empathy, letting you know you're not alone.