Lessons I am learning

Anna2022

I've been taking stock these days and as I note my DH's progression, I decided also to take notes on my own progress. Here are 3 notable lessons I've learned in the last few months:

1) I learned that DH should always win the argument. It's impossible to argue like we used to (we are two retired lawyers), so now, I try to stop sooner than later and let it go. It's easier on us both.

2) I have learned that I make the big decisions now. That has been fairly easy to do as I can be quite assertive and bossy. 😀 Even tho I make the decisions, I recently realized that I was still discussing these already-made decisions with DH, thinking he might want to know what I was up to. However, I've learning not to do that. What he doesn't know won't hurt him and if I fill him in, it invariable leads to him telling me to do something else (usually something outlandish and not remotely appropriate) or telling me how and why I made the wrong decision. Ugh. But this lesson has an ugly underbelly: As I make the big decisions and don't involve him, I realize that this is yet another layer of distance between us and indicative of the loss of our partnership, one where we both made the big decisions. This equal partnership, supported by love and forged by rigorous honesty, has been the bedrock of our relationship - We were a team! Now? Now we are something different.

3) Sometimes I feel sorry for myself, for these losses, and this slow sad journey we are on. But I'm brought up sharp by the fact that he is the one who has the illness - not me. That brings me back sharply to reality.

I wonder what he is feeling/thinking about all this - although he seems to have anosognosia, I think he must know, at some level, that he is losing ground?

Just a few thoughts tonight. Thank you for sharing your hard earned wisdom - it has helped me and DH so very much.

Gthoma

Hi Anna2022. I especially like your 3rd learning and I would do well to keep this more at the forefront of my mind. Thank you.

GG06

Anna2022, I love your post. Each time I read someone's experience that mirrors my own, I feel less lonely. I have learned the same lessons. So, thank you for sharing your progress.

I have been trying to figure out my husband's level of awareness of his dementia (FTD). He definitely has anosognosia, but he does recognize that he has trouble with his memory. Although last week he told me his memory is getting better. Broke my heart.

cdarrington

I appreciate your transparency in sharing here. I’m new to this world of Alzheimer’s caregiving and the adjustments to my relationship with my sister. I can see that that will be one of the hard parts of being one of her caretakers.

She has trusted me. We’ve been friends our whole lives and now I’m receiving argumentative, uncooperative responses from her instead. It’s happened so quickly and I find this new role I’m in sad, challenging, but also a privilege. I hope if I’m ever in her situation there will be someone there for me who is patient, kind, and has endurance.

God bless you and each of us in our journeys.

Davegrant

Anna2022,

I have learned some of the same lessons. My DW will ask the simplest of questions, then do the opposite of what I say. For me, it is so hard to understand memory loss, but I am learning one situation at a time. Moments after something is said, it is forgotten. This reminds me to always follow up to see what she actually did. Sometimes this can be a safety issue. We are not alone, one time we were in the emergency room, the nurse gave my wife the remote and told her to push the button if she needed help. I went and told the nurse that she will not remember to do that. The nurse said that they would move her near the nurse's station so they could keep an eye on her.

I always told my wife what I had planned to do for the future period but by trial and error learned that I was only adding to her confusion to meet my need for support. I had to change. I've changed a lot in the last six years. Each new downward movement creates a new challenge both emotionally and practically. I go to my support system for mental support and problem solving. This last week my DW wandered in the middle of the night, fortunately, a neighbor who brought her back. But this opens up a whole new set of circumstances and situations. This is truly a horrible disease.

Dave

toolbeltexpert

Anna very well written. These were the same lessons I had to learn as well. I found I wouldn't share anything about what was going on because it always lead down the wrong path. Less was better.

@cdarrington welcome to the forum that nobody wants the reason to join. As you noted there is transparency here and every possible subject has been posted and if they haven't somebody will!

You mentioned that " it happened so quickly" you might want to have her checked for a uti. Any time there is a sudden quick change a uti is the first thing to rule out. Keep posting and reading check out some Teepa Snow videos they are very helpful.

Stewart

Ed1937

Anna, that's a good post. There are many things we all had to learn. One other thing we have to learn to make it easier for us is that we have to fully accept the fact that they have a brain disease that will only get worse.

Cdarrington, welcome. I just want to second Stewart's advice to always check for a UTI when symptoms suddenly appear. It is pretty common for PWD to have "silent UTIs", which just means there are no typical symptoms showing, but other symptoms can occur in very different ways.

CindyBum

Great post. Thank you for sharing. Your #1 has been, for me, one of the most miraculous and sometimes funny bits of learning for me. When I realize the ridiculous things I used to get annoyed by with my SO and I feel it pop up now and can just let it go with a chuckle? Truly one of the only bits of relief I’ve felt on this journey has been letting go of some of my own silly gripes about my partner. Like, why in the hell did I ever get so annoyed by where she put things in the fridge? Lol. Most of my thoughts now are just about the love we have and how I can squeeze as much of that out for her, and me, while we still can. That’s quite a wonderful gift within this sadness.

Howaboutnow

Anna2022-

Those are lessons i know to be true but i have to relearn semi-often 😏. Once in awhile I’ll decide to share some tale about something i need to do, or fix, or a work story etc,,,partly just to have a reason to talk since we don’t have “conversations”. But the responses don’t make sense, or the repetition of questions that illustrate he didn’t comprehend and has become needlessly stressed ends up in me regretting talking. Same with any disagreement or desire to explain something he misunderstands. No point.

Jan524

Anna, your comment " This equal partnership, supported by love and forged by rigorous honesty, has been the bedrock of our relationship - We were a team! Now? Now we are something different. " broke my heart. My husband was diagnosed with AD less than a year ago but every day another part of us disappears. I've known him since I was 16 years old and we've been married for 48 years. I'm learning the lessons you mentioned but the most difficult is that I'm in charge of everything and beginning to feel very alone. So thankful for this group.

SDianeL

Anna, thank you for this post. I too have learned those things but didn't really think how important they were until your post. I keep slipping up and reverting back to old habits and it never ends well. I try to be a better caregiver to him each day. As you stated perfectly, as each behavior happens with my DH there is more loss of our partnership. I know exactly how you feel.

cavenson

Anna, thanks for sharing your insightful lessons learned. Your first one is something I keep having to relearn. Life is much smoother if I can avoid arguing in the first place. Something related to that is correcting. In the big scheme of things, it doesn't matter if what he said isn't correct. And, there's trying to reason with him, which will invariably turn into an argument. Number two--making the big decisions isn't too hard--I can do that. The hard part is making them without upsetting DH, because sometimes he has to be involved. I was reminded of that this morning when we were at his appointment with a neurologist. A decision on having some surgery had to be made, and after we left my DH angrily said the doctor was talking more to me than him--though I thought the doctor was trying to listen to him. And that brings us to number 3--probably the most important, I need to remember that he's the one with the illness, and it's not something he would ever have wanted. This group is so very helpful.

annie51

Thank you so much for this post, Anna2022. It put into words the exact feelings I've been having and as others have said, that makes me feel less alone. I have learned those lessons also, but forget them from time to time! Thanks for reminding me that this is what life is now.

Jeanne C.

Great lessons, Anna. I try everyday to be the best caregiver I can be. And you're so right: now we are something different. It hits you like a train over and over again. Partnership, being cared for, and even conversations are over. I'm struggling a little today. But it helps a little to see you all out here. Thank you.

Anna2022

Thank you all for your comments! It seems that while our loved ones' journeys may be different, the lessons we are learning along the way are universal. We are not alone!!

GothicGremlin

@Anna2022 Very familiar lessons, especially #1. In my case I'm the bossy older sister, but since my sister Peggy's diagnosis, she's always right. Always. 🙂

In the early days of Peggy's diagnosis, I tried to learn everything I could about Alzheimer's since I pretty much knew nothing at all about it. Wendy Mitchell's book, Somebody I Used to Know, was recommended to me. It gave me some insights that have helped me interact with her and preserve her dignity at the same time. Even though it's Wendy Mitchell's own experiences with early onset Alzheimer's, there's a lot of other stuff there to help us navigate this disease whether it's early onset or some other form of dementia. And, perhaps most importantly - it's not a depressing book!

The other one is Understanding the Dementia Experience by Jennifer Ghent-Fuller. It used to be pamphlet length, now it seems to be much longer, but even the shorter version I read was so very helpful. It helped me to sort of walk a mile in Peggy's shoes so that I have some understanding about how she perceives the world now.

I highly recommend both.

Ed1937

@GothicGremlin said "In my case I'm the bossy older sister". And all this time I thought you were the brother. 🤔 I don't know why. Sorry about that.

GothicGremlin

@Ed1937 Ha! You probably thought that because of my bossiness. And probably because I've mentioned wearing combat boots (but only to goth clubs). 😄

brooklynborn123

@Anna2022 : thank you for this post. each of those three lessons really resonates with me, especially numbers 1 and 2. I am also a lawyer by the way and it is very difficult for me to learn that I don’t need to argue or correct my DW’s many errors most frequently the result of a failure to remember or some other feature of her illness.

Number 2 is the one that makes me feel the most lonely, particularly the realization that it is so counterproductive to try to discuss decisions with my DW or to try to lean on her when I am feeling unsure. The loss of balance in the relationship is very profound. And unfortunately number 2 makes it very hard not to feel sorry for myself somedays even as I know that I am lucky to be the healthy and cognitively intact one. I allow myself to feel that way sorry every once and awhile, but then I read my serenity prayer and it gets me back on track…..for awhile.

tgeno

Great post Anna! Caregiving is about learning. Learning how to give care. Learning how to care for ourselves.

Anna2022

https://alzconnected.org/discussion/comment/182101#Comment_182101

@Kappy55 Thanks for your post, Kappy55! I'm 65 but I do remember my mom's generation when the husband made all the decisions. As I take on this decision-making role, without help from my DH, I realize how hard it might have been on men/my father to shoulder that responsibility, ever unending. I have new found respect. Also, I use the serenity prayer a lot as I trudge this road!

brooklynborn123

@Anna2022 i hear you about men once making all the decisions. We never had the option of doing that since both my DW and I are women!😂 I don’t blame you at all for assuming otherwise….that’s another thing that has changed over the years and at a pace I never dreamed of. I am 67. My DW is older, 76. We have been together 38 years and have two daughters together.

This is not at all how I hoped we would spend our “golden years.”

oh well. Onward!

Anna2022

@Kappy55 So sorry to assume anything!! And yes, this is not how we hoped to spend our retirement years together. Trying to forge a new future all the same. Letting go of what might have been is a lesson indeed.

Arrowhead

Three lessons learned, many more will follow.

Jxrich

Just trying to figure out how to post.
I’m new here, I need some points on how to cope with wandering? Any ideas?

Kevcoy

Anna 2022,

It feels like you were reading my mind. I have learned exactly what you have written. I have also learned another rule that I broke the other day which is about quizzing. My DH asked me if I knew what his name was and I answered. He then asked me what my name was and instead of just answering I said, you know what it is, can you tell me? Well his answer wasn't only wrong, it was a name I've never heard of so no more quizzing, it doesn't do any good.

Dio

https://alzconnected.org/discussion/comment/187729#Comment_187729

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