Disappointed in myself on a daily basis

tigersmom

Hello, fellow travelers. New poster here, though I have been reading for months. DH DXed 6/21, and I have been struggling since then with something that does not come naturally to me: patience. I know how important it is, and every day I wake up vowing to do better. And almost every day I have lost it by 11 a.m. It does not help, I think, that I never had children -- not in this marriage, not in the two that came before. So my question for those with much more experience than me is, how do you find the reserves to get better at this? DH is my forever husband -- we met later in life, and have been married for 26 years. I always joked that I just kept throwing them back until I found a good one. Now my brilliant, funny, congenial husband often seems more like a precocious eight-year-old, and we are only in the mild-sliding-into-moderate stage. Any suggestions or resources to help me be more patient would be deeply appreciated.

Ed1937

First, welcome to the forum. Glad you finally posted. It doesn't sound like you have totally accepted the diagnosis. When you do that, you will be able to see things from his perspective, and that will help.

MaryG123

Hi Tigersmom,

I too have not had children and have little to no patience.  I found that reading the discussions on this forum has given me more patience, as I now accept that he is unable to make decisions or take initiative because his brain is damaged.  It truly is not intentional.  That being said, I’m grouchy much of the time, and have to fake smile and make up excuses, apologize for sharp words, and tell him I love him when I’m not really feeling it.  We are grieving.  Have you read this article, attached?  I found it very helpful.  You can find the strength to do this, and one last bit of advice from this awesome group, try to focus on what you can still do together, for as long as possible.

Quilting brings calm

Please remember that you are human.  Also that most of us here don’t have infinite patience either.  There are lots of posts that echo yours if you look back far enough.   All you can do is try to remember how you want to behave, and take a deep breath before you respond to him.  Walk away when you can to another room.   If he takes naps, then rest and relax.   That is what new parents are told to do.  Because 24/7 is a lot.

Also remember that this is your journey - not your friends who tell you that you have to keep him at home.   Not all of us are able to be full time caregivers.  There us no shame on holding g up your hand and asking for a time out. 

Joydean

Welcome Tigersmom, excepting the diagnosis is understanding that this disease is taking your dh from you. It takes and keeps on taking from him and from you. Patience is hard at times, for me it was because he still looks the same and sometimes even acts the same, but only for a few seconds. It’s not like any other disease. We are all human and we will make mistakes. Just do the best you can and be kind to yourself. The early stage is an adjustment for you both. He knows something is not quite right but doesn’t know how to fix it, and yes I believe they are scared too. As MaryG said this is the time to do all the things you both can do together. Enjoy your time together while you still can.

jfkoc

I believe that patience and expectations are closely related. I found that lowering my expectations really increased my "patience."

Another componant is flexibility and a key to that is simplification. Many days I had to keep telling myself nothing much is going to "get done" today so relax and enjoy. 

tigersmom

Thank you, Mary! Your description made me smile in recognition. I'm grouchy, too, some days. I have indeed read the attachment you suggested; I found it on this board pretty early and sent a copy to his sister (talk about someone who hasn't accepted the diagnosis) and to both of my sisters. I will read it again; sounds like I need a refresher course. Quilting, thank you for your advice. Waiting before speaking does not come naturally to me, but it is good to remember. I can work on that. And Joydean, you hit the nail on the head. He still looks so much like my husband, but he acts so differently already that sometimes I look at him and wonder, "What have you done with my husband?"  It does not help that he has anasognosia (had to look that one up and learn). He thinks there's nothing wrong with him but that he's older and forgets things sometime. Can't tell you how much I wish that that was the case, but I've read every word of his PET MRI report and I know that it is not. Thank you all for welcoming me. Until now, I have tried to muddle through with support from my long-distance family, but I think it's true that no one understands what it's like to care for someone with this disease unless they have walked in these shoes.

ImMaggieMae

Welcome to the forum, tigersmom. Joydean and jfkoc said exactly what I was thinking. It is so difficult in the beginning (and even into later stages) because they look the same and even have many of the same personality traits, but their minds are being damaged by the disease. I was not at all patient in those early days when my DH would repeat the same question over and over very 5 minutes or less, for hours. I would get to the point of screaming, “Just stop!” He was totally confused and then frightened and upset by my outburst because he had no idea why I was upset and that he had been asking the same question. Or when he got to the point of urinary incontinence, I would be sitting on the floor, trying to remove his pants to change his wet Depends and he wouldn’t lift his foot so I could get one off and the other on. I’d have to struggle to lift his foot myself, all the while yelling at him to please cooperate with me or I wouldn’t be able to continue to  for him at home. Again, my yelling and being extremely upset only upset him more and it was like he just shut down, not understanding or knowing what to do, probably just wanting me to stop yelling.

When I finally got it into my thick head that he was doing the best he could to control so many things that he really could no longer control, and that my loss of patience was making things a LOT worse, things started to actually improve. My loss of patience was tied to my sadness and horror of the situation. He couldn’t help it, he didn’t understand. He didn’t want these things that were happening to him to be happening either. I believe he still loves me (since he tells me often) and my being upset was horrifying to him too within his own understanding.

I changed my behavior around him. At first it was a matter of “Fake it til you make it.” But his reaction and behaviors changed accordingly. When changing his Depends, speaking kindly about lifting one foot and then the other while placing hy hand on his foot and often just talking about other things at the same time, brought cooperation from him that has now become more of a routine for him I think. I’m calm, he’s calm. He lifts his feet when needed. The change goes simply and smoothly. He also goes into the bathroom himself and uses the toilet much more often. The bathroom isn’t a scary place with me yelling in there. 

The same thing with dressing him. When I used to be impatient because he wouldn’t raise his arms so I could pull off a T-shirt, he just froze and made things worse. Now when I kindly say, “Up with the arms.” Or usually even before I say anything, he raises his arms. He also dresses himself much more often now. I know he probably doesn’t understand half of what I’m saying, but I babble on constantly like I always used to do before dementia, about anything and everything. I think my calm voice is good for him. 

Now, medications have changed over the past year and some of his changes in behaviors can certainly be attributed to that because he isn’t as agitated and his cognitive abilities seem to have improved, at least for the past 7 months or so. But I’ve learned that staying calm around him results in cooperation from him. No, he isn’t the same man he once was, but there is still a lot of him left, it’s just a matter of my being quiet enough to hear it. I love this man, no matter what.

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tigersmom

MaggieMae, thank you for this helpful and eloquent reply. It is such good and practical advice! I will try to keep my tone pleasant, no matter what. Our experience sounds similar -- for more than a year, he has asked me multiple times a day where the cats are, and it drives me crazy. They are  indoor cats; where are they going to go? I am striving for a short, simple answer, sweetly delivered; "Don't know. Go look!" And you are right -- he is still in there. And I still love him to pieces.

tigersmom

Victoria, you are so right. These are really wise words. I hope I can find my way to a similar place. Some days it feels like I don't know who I am anymore. I am a stranger in a strange land.

bigfoot2you

I struggle with this each and every day.........no matter how many times you speak it goes right out the window.........hard to swallow for sure

KathyF1

Hi tigers mom, your struggle is my struggle. My DH is stage 5. I know it will get worse but this seems sometimes like all I can handle. I find that the more rested I am, the more patience I have. If I’m under stress for other reasons I’m not a good wife/ caregiver. I pray every day for patience. I read a devotional that helps me. And yes, keeping life as simple as possible helps a lot. We have our farm in the market. Trying to move near family so I’ll have help. Last week had two showings. Thank God I had a friend here to help. 20 minutes before showing he was tearing clothes out of the closet, shoes he “needed”- rearranging decor. Talk about losing my cool! Clock is ticking and he’s impossible. So- I know how you feel. I struggle with guilt for not being understanding all the time. It’s not his fault. But I’m human. And you are too. We all “ lose it”. Bottom line though, your husband is so blessed to have you. I believe God chooses us at times to be caretakers for our spouses. I try to look at this as my “special assignment “. My husbands kids will have nothing to do with him. If it weren’t for me, he’d have no one. So give yourself some credit! You are his blessing!

PlentyQuiet

My DH is early stages as well, possibly moving into stage 4. I've found I'm using a lot of the skills I learned when my kids were young. 

1. Never ask a question if "no" is not an option. For example do not ask if they want lunch, ask if they want water or juice to drink. Don't ask if they want to put on their shoes before you go out, ask if they want to put on the left shoe first or the right.

2. Try to say yes instead of no. If there is not a safety issue try to say yes, or reframe the request in a way that yes is possible. Example - they want to go for ice cream but you need to go to an appointment (or wait for a plumber, get some work done etc). Reframe it to asking if they would like a cone or a dish after the appointment. The next time they ask (probably 10 minutes later) you can answer that yes, you will go for an ice cream cone after the appointment.

3. Don't ask open ended questions. Ask if they want to wear the blue shirt or the red shirt, not what do they want to wear. 

A big caveat: even with all of this taming some of my frustrations there were still really hard days, and days where I yelled. I don't think anything makes all the frustration go away.

Be gentle with yourself.

toolbeltexpert

I had to learn that my attitude was the problem, Maggie you said it well,you all said it well. I am greatful for everything I learn on here, even though I have placed my dw I still need a refresher. Some of you have it so much harder than I did.

storycrafter

The day the neuropsychologist gave us his report, with a name for the disease - and was the first doctor willing to finally say the words out loud - was hard, but was a blessing for me. It was then I really and thoroughly, was able to finally get a handle on what it means to "separate the disease from the person." It was like turning a switch in my case. Ah yes, now it all made sense and I could stop second guessing myself.

I thought I knew all about that idea, had heard of it a long time before, "separate the person from the disease," etc., etc. But to truly put it into regular practice and use it as a tool took some time to hone and make it mine. When the doctor acknowledged out loud and shared his report with the other doctors, "Yes, dh has this disease," it was the affirmation and validation I needed to move deeper into acceptance of the strange reality we'd been living.

I came to also realize that it is true with anything (for me) ... if you mentally separate the behavior from the human being ... it's easier. We are all human beings dealing with the human condition and I can have empathy for that. Does it have something to do with my own belief that we are all spiritual (not religious) beings having a human experience on this earth? Maybe so, but even when I just pretend it's true, it somehow helps me take a step back from taking his behavior personally.

Hang in there. It's not easy, but it can get easier. Eventually one begins to find and cultivate tools that are helpful. I can only do it with the help of others as we share our experience, strength, and hope with each other along the way. We shine lights for each other in the darkness, taking turns doing it when we can.

Dio

Sadly, I lost my temper today...definitely not proud of myself, but it was a much needed release of steam. Nowadays, yelling doesn't seem to have any effect on DH. He ignores my screaming and yelling, remains stoic and just keeps on looping. He's in a different zone for sure. The looping was what drove me to the brink of madness. I have to find a new way to get through to him.

CStrope

I often say I've become a Stepford Wife....and that is sooooooo not me!  But in the long run it helps things remain calm.  I found it interesting that you stated that you will tell him that you love him, that is something I find I just can't do anymore.  I do not "love" the man that I live with that has Alzheimer's, he may look like my husband, but that is about it.  I do love him and will always love him, but not in the same way as I used to.  I feel like separating myself in that way allows me to look at the situation differently.  I can be a caretaker for this person, have little expectations of him, and continue to watch the steady decline because I don't view him as a partner any more. I wrote on the message boards over a year ago about a discussion I had with my therapist on how I deal with this.  I try to think of everything in 3 stages. Before Alzheimer's, now, and after Alzheimer's.  If I compartmentalize things like that, I can better cope with the problems of today.  If I allow myself to consider my married life as a whole, then I bring feelings from the past into what I am dealing with today.

I hope this helps.  

Paris20

Tigersmom, welcome. My first piece of advice is please don’t beat yourself up. My husband, who was diagnosed with AD in 2015, is frequently irritable and vulgar He can become belligerent,although Seroquel has helped there. He’s in a facility now after suffering a stroke but I can tell you that my self control was never tested as intensely as it was when he was on a tirade. And there were times when I flunked that test. Knowing that it’s the disease talking can be useless when you’ve heard the same remark 20 times or you’re the recipient of some horrible  words. We are only human and words matter. So, yes, I lost my temper at times.

I have children, grandchildren, and now a great grandchild but I don’t think my skills as a parent were particularly effective with my husband. The only exception was at the supermarket, where he wandered like a toddler and filled the basket with sweet and salty junk food. I was able to use my parental experience to tell him no.

The lesson I’ve learned is try to be patient with your spouse but also be patient with yourself. Over time you develop strategies for dealing with specific problems but there will never be perfection. The only sure thing is that he will get worse so your skill-building and, most important, acceptance can help get you through.

toolbeltexpert

Thanks tigermom for starting this thread, I am sure others have said these same things but hearing others and how they deal with so much helps me out. 

Dio hang in there. We all loose it, the looping can be hard to keep to hearing. When someone visits my dw they learn the loop and can do it for 1/2 hour, but they leave and escape it. 24/7/365 folks have to learn to deal differently cause they don't get to leave. I know my dw is now in mc, but for years I just repeated the same answers again and again. Now dw says every day daja vu, it's ground hog day and it is!

Connie thanks for sharing that. 

DJnAZ

The moderator of the Alzheimer's caregivers support group I attend posed a question recently: "What do you think you could be doing differently or better to support and care for your loved one".

Now that my wife is in MC and I have the clarity of hindsight, I answered that I realize now I did so many things wrong.  My mistakes were the result of frustration, lack of patience and not being able to understand or accept what was happening to her.

She has been in MC for 5 months and I miss her constantly. But I know we are both in a better place now.

tigersmom

Dio, so sorry to hear this. Please try to take the advice all the kind people here gave me and be gentle with yourself. I think what we are doing is about the hardest thing a person can do. I know it is for me. You are somewhat fortunate that when it happens, it doesn't seem to bother your DH that much. Mixed blessing, I know. I have to try to keep my temper because it does bother mine -- he gets scared, or shuts down, and sometimes even cries when I lose it. That is the worst. Wishing you a calmer, better day today.

JJAz

The only thing that we can control during this journey is our own attitude and our own behavior.  Check out this very good video by dementia educator Pat Snyder on this topic.

  https://www.youtube.com/watch?v=Wcx5L7Fw6WQ

ghphotog

IDK, patience isn't something you can't turn on and persay. It comes with time and a lot of time. I'm the most impatient person I know and in the early days it was an impossible task I was facing and patience for me seemed so difficult to have. I'm into it now about 4 years and although I'm still an impatient person, I am much more patient now with my wife. It takes a lot of time and I still have a long way to go but I try not to think too far ahead, just one day at a time

Drapper

I was looking at old posts today and found this one. Very useful advice in here. Thank you.

ghphotog

Been feeling so fatigued and all I want to do is rest but my DW will not leave me alone for 5 minutes. She is somehow triggered if I want to lay down or take a nap. Patience is so terribly hard to have when the "pestering" never stops. If I get even the slightest bit frustrated it triggers a meltdown for her until I yell at her. I want to say so many things like "Just shut the hll up for a few minutes!!" but that just makes me feel bad as well and as someone also stated she has not idea why I'm snapping at her and starts crying, begging me not to be mad at her, then I feel horrible. The cycle never ends and they have no idea from one minute to the next why we are responding the way we do and they also have no realization that they are driving us crazy and there's not a dmn thing we can do about it but accept it.

Denise1847

Dear Tigersmom,

I think we should have a contest for the most impatient person on our forum. I think I might have won it about a year ago. You are going through a traumatic experience where you are losing your DH, the life you hoped to have and your freedom. I think there is more to our impatience than just annoyance at repetitious questions or lack of cooperation. It is the overwhelming loss, daily grind, fear and feelings of hopelessness that build up and make us less able to cope. Our society has normalized anger as the primary emotion we go to when we are frustrated, disappointed etc. when, in fact, there is a repertoire of emotions we experience. I am learning to dissect what I am really feeling, which is usually sadness or tiredness and then I can control my words and actions better. It helps me separate my DH's behaviors from my reactions.

For me, I pray alot. It helps and I don't feel alone. Please be patient with yourself. Love yourself. You will be ok. This is a journey and we are all walking on it together.

Just Bill

There are type A personalities. Before this I was a type AA personality. Zero patience. After 3 years of watching my wife fade away a little every day patience is forced on me. It is amazing how adaptable our brains are. I really, really don't like the person I become when I lose my patience. I borrow from anger management, know your triggers and have a plan to not lose it when triggered. It is a constant work in progress and I still slip now and again but every time I do it is a warning not to let it happen again. I imagine long after she is gone watching a video of me losing it while she has no idea why and how bad that would feel. I think about that ever time I have to interact with her.

Howaboutnow

Just Bill, we are hard on ourselves. I know i am, daily. We are as human as our LOs are and we can give ourselves some grace, just as we give them. That’s what i keep telling myself 😊

upstateAnn

We all lose it. I did today. Had a nice time out at the grocery store.My husband grabbed two bags from the trunk and marched to the back door. He has balance problems and knows he must carry only one bag and keep a hand free so he can navigate the stairs (as do I). When I reminded him, he persisted. I yelled at him to put a bag down. (I only raise my voice in dangerous situations). He threw both bags into the bushes and stormed into the house. He is still furious at me. “He knows what he can do. I ruined his feeling of strength, etc.” I know he will forget, but I am seething at his bullying me and at his anger. WE ALL LOSE IT. Forgive yourself.