Venting (again)

JC5 · March 28

DH has been in a mood all day!! Started when I asked him to wash the knife he left on the counter. Sure he said, came in and put it in the sink! Can you just please wash it? Off the wall yelling he’s always wrong. Trying to calm him down didn’t help. Decided to leave for a bit ( he’s ok alone so far). Came home and no memory of what happened! Cleaning his room ( BTW, worse than a 13 year old boy!) Asked him to bring 9 full bottles of water/propel downstairs as it would help me , again the I do everything wrong yelling. I get it but seriously how do you get a thick skin and just let it roll off? Washing sheets, mattress pad blankets now because he sits on bed after using the bathroom and doesn’t clean himself well. ( And yes I know this is better than what can come). This just is not right for anyone! God bless us! 🙏🏼

ThisLife · March 28

Off the cuff here sharing experiences with my H.

Wash the knife: he put it in the sink. He no longer knows what wash the knife means. He does know it has something to do with the sink. In his world he did wash the knife.

Bring the Propel bottles downstairs: Multiple layers possible here. PWD field of vision narrows; he may not see all of them. It takes a lot of cognitive energy to complete all of the steps this entails. Gather nine items and he has probably forgotten after 2-3 what he's supposed to be doing. Simplify the task. Hand him a bag full of bottles to take downstairs. The question then will be will he know what to do when he gets to the bottom of the stairs?

Messy room: A) He doesn't know where items go. B) Needs to have everything out in view as he no longer knows where items are. C) Again, field of vision narrows, and he doesn't see the mess. D) Probably all of the above.

I feel like for each skill they lose we end up having twice the work. e. g. Washing bedding.

He is telling you by his anger he is confused about what to do. The choice is his anger or do it yourself. And I know, you have this person who appears physically capable and you're working so hard!

PWD are very sensitive to emotions long after they no longer understand anything else. You can hone your acting chops by being Missy Suzy Sunshine. It is exhausting! We have to swallow a lot because it is the disease, not him. I feel your frustration coming through.

Yep, it isn't right! It sucks! I'm so so sorry. Sending you (((hugs))) because there isn't anything else. 😢

M1 · March 28

agree with above. He doesn’t understand what you’re asking. Probably the best thing is to quit asking. You have to give up your expectations that he can do anything. It’s hard I know.

trottingalong · March 28

I have been where you are. Life is much simpler if you simplify. I like what ThisLife had to say. The people here are who helped me understand my DH wasn’t doing things on purpose and his frustration with me was because I was angry when he did or didn’t do what I wanted him to do. He eats a banana and lays the peel on the cabinet near where the garbage can is. I just pick it up and toss it in. I used to say “why can’t you just put it in the garbage?” And the argument was on. I don’t ask him to get the clothes out of the dryer, but I do ask if he would like to help me fold them when I bring them in. I don’t care anymore if he doesn’t fold them correctly, I just carry them upstairs and refold anything that needs it. I don’t mention any mistakes he makes anymore or remind him of something he said he would do. In the beginning I would repeatedly have to tell myself it’s just his broken mind, it’s not purposeful. I still have to do it at times. It’s rare for us to bicker these days. Am I tired? Yes. Everything falls on me. But, by changing how I think and how I work with my DH, I’m in a much better space. I really hope you can get there. Anger can eat us alive. Believe me, I think all of us understand what you are going through and feel your pain. It’s just not fair, and that’s all there is to it.

concerned_sister · March 28

I like the quote, he's not giving you a hard time, he's having a hard time. Sorry you're dealing with this.

LaneyG · March 29

It’s kind of weird. Once I learned all that was said above, things became much easier. I have no expectations. For the most part I do whatever needs to be done myself. It is a real bonus when he joins in to help or when he does take initiative to take care of something himself. I remind myself to keep expectations low and that because he can do something one day doesn’t necessarily mean he can do it the next.

trottingalong · March 29

https://alzconnected.org/discussion/comment/203747#Comment_203747

you said it perfectly.

FTDCaregiver1 · March 29

JC5 - Going to straight to the point, time to adjust your expectations. I'm sure many of us, were in your shoes. Early on, I tried to get DW to do stuff, explain stuff, I only ended up angry and her scared/confused. Your DH is not being obstinate, he's not being uncaring, he has dementia and its very important accept the fact that it's not his fault he can't do the things he once did. Acceptance of this disease is a process, doesn't happen overnight, but it does get better, over time. You are so correct is not right for anyone to go through what you are going through, it's absolutely devastating, you are not alone, yet here we all are, clinging to each other because we all "get it", get comfort and learning from each other. I hope you can get help with caring for him sooner, rather than later I couldn't go it alone, got help, hope you do too. Hang in there, you're doing great.

Pdxnewbie · March 29

My wife has no idea what drying the dishes means even though she wants to help. As others have said, I have to constantly adjust my expectations and reactions to avoid triggering an episode of mania. It is part of the learning process that all caregivers must go through.

Iris L. · March 29

I would keep all knives and sharps away from your PWD.

Iris

AnderK · March 29

Hi. I have started a mantra that I try to stick to, and usually have problems when I am extremely weary (not just weary, which is almost always). It is "Its only just…"

It is only just carpet. It is only just my favorite cookie jar that my sister gave me that got broken (my fault for using it,btw). It is only just urine or feces or blood. It is only just another bed change. It is only just…

That one is followed by "He really doesn't know/remember…"

He really doesn’t know that his clothes are in the man's chest he has all his life. He really doesn't recall that we have a 90 gallon water heater so he can a have a shower right after mine. And one of the hardest…he doesn't know what we talked about 5 minutes ago. Who was here yesterday, why a nurse is coming today. Why I need help from outside sources.

And I have to remember…he isn't the man that I grew to love, that I spent 7 months living on a sailboat with while traversing the rivers and lakes and gulfs between Minnesota and Florida.

So what I do now is try to pay homage to the memory. Sometimes I succeed. Sometimes the fury builds up in me and I drive my car to the mailbox a half a block away and scream in my car's solace.

I am glad you are on this forum. It provides so much support, because what we all are experiencing cannot be understood by bystanders.

The old saying Tomorrow is another day... in our world, it could translate to the next five minutes is another day.

Kathy

White Crane · March 29

JC5,you have received some really good input. I hope it helps. As others have said, we have to lower our expectations because our dear ones really can't do the things they used to do. When I did laundry, I would quietly ask my DH if he would help me fold it. If he agreed, I would place a few towels in his lap and then continue folding the rest of the clothes. Those towels ended up being folded differently each time…but they were folded. If I was making soup, I would ask him to cut up the potatoes. Those potatoes were cut into small squares and some big cubes…but they were cut. The main thing is to maintain his sense of self worth. He needs to feel needed. We all do. Hang in there. Sending hugs.

ImMaggieMae · March 29

ThisLife said, “PWD are very sensitive to emotions long after they no longer understand anything else. You can hone your acting chops by being Missy Suzy Sunshine. It is exhausting! We have to swallow a lot because it is the disease, not him. I feel your frustration coming through.”

This is so true and I think it was one of the hardest things for me to grasp in the beginning. I would yell at him for doing things he no longer had any control over. Or some days he did and some days he didn’t. Showing frustration or outright anger (me, not him) had the opposite effect I was aiming for. It made life miserable for both of us. His emotions definitely mirrored mine. My learning to suck it up and act more calm, even when I didn’t feel that way underneath pays off big time. He isn’t the same man he was before. Our lives are completely changed. But I still love the man he is now. I feel protective of him and try to find things that will make him more content.

This is probably one of the most helpful threads in this forum. Everything that has been said has turned out to be completely true, in my experience. I wish I would have read it in the beginning. It would have saved months of heartache.

jsps139_ · March 29

As everyone said … we all were where you are and sometimes we go back there. As I was reading this post my husband walked out of the bedroom with his winter big black shoes on instead of the white gym shoes that I put out for him. Years ago I would have said … why didn’t you put the white shoes on that I put out for you? (And the argument would have started and I would have felt sorry for my poor self for the next 3 hours). But today, I looked at his nice shirt and khaki pants with white socks and then those BIG UGLY BLACK SHOES and I just smiled. I know he doesn’t do these things to aggravate me so why would I make comments to aggravate him? Our lives really are easier when we just let things go - even if we are gritting our teeth while letting them go.

SSHarkey · April 1

Our frustration comes from setting irrational goals and then failing to achieve them. We have no power to change another adult’s behaviors or thinking process. The only power we truly possess is to change our own behavior and thinking process. We are accustomed to our peers behaving like adults, thinking rationally, and acting responsibly. We are NOT accustomed to an adult going backwards in their social and mental development. If we keep expecting the same behaviors from the past, we will be miserable. I’ve had to take over all of the responsibilities of the home and finances. I have to make decisions alone. I have to never expect my DH to recognize that I need help, or to see something on the floor and pick it up. His brain is no longer functioning that way. By not expecting anything from him any longer, I’m not disappointed. When he does something for me, I’m surprised and grateful. This is the only way I can continue to live in peace and remain loving towards him.

trottingalong · April 1

https://alzconnected.org/discussion/comment/204149#Comment_204149

I feel the same as you. Once I figured it out, my life became easier.

DTSbuddy · April 1

Thank you all for your wonderful comments!! And all my heartfelt wishes for the strength and compassion to carry on. 'The only power we truly possess is to change our own behavior and thinking process.' Yes.Two years ago, I felt like screaming several times a day. That hot anger/frustration was so bad for both of us. I have learned to 'chill out' as the kids say. I had to accept who he is turning into, and stop feeling like he had something to do with disappearance of my husband. He misses himself too. Tears help. Mantras help. Finding things he can do and I can appreciate help. And not being afraid to ask for help. Today we walked into a nail salon, and asked for a toenail trim. We had never done that before. I worried that he would make a scene. He loved it!! The staff were absolutely wonderful, patient and understanding, as were other customers. I so appreciated their smiles.

Phoenix1966 · April 1

https://alzconnected.org/discussion/comment/203772#Comment_203772

I had to be the morbid one, but when I started reading your vent and you asked him to wash the knife, I was so afraid you were going to say he tried to hurt you with it.

Please heed @Iris L. ’s advice.

When my mother and I were deep in the 24/7 caretaking of my maternal grandmother(who at this point had delusions that my mother had stolen from her[extension cords, a sweater and my grandfather’s ancient Gateway desktop computer] and she wanted to throw boiling water at her), there was an incident where I picked up some meds(which helped dull her furious outbursts) for my grandmother and needed to get home ASAP(which was a two hour drive away). I first texted my mom that I had dropped the meds on the doorstep and she didn’t respond. I then tried calling and she didn’t respond. Eventually, I turned around and went back and was in tears by the time I got there, thinking that maybe my grandmother had stabbed my mother to death in an angry outburst. My mother was fine, but we disappeared all the knives, which were in multiple blocks in easy reach on the kitchen counter, after that.

Iris L. · April 1

I was thinking more about the PWD hurting himself. Years ago when I was in the early years of my illness, which is not AD, but is neurological, I took a cooking class. The instructor had us cutting up vegetables. I always managed to cut myself and bled all over the counter. This was in the days when HIV/AIDS was in the news and people were terrified of blood. I was so embarrassed that I couldn't handle a knife properly. After a while I just let the other students handle the knives. Now, my hands function better, but I am still very cautious with knives and other sharps. Nevertheless knives and all potential weapons should be removed if a PWD appears agitated.

Iris

Venting (again)

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