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Jojofoy101 Asked December 2019

What is it that makes me dislike my husband with dementia? He was so normal and wonderful to live with for 20 years and now has dementia.

I married a great guy with a wonderful disposition. We have been married 27 years and the first 20 were the best. His memory started with mild cognitive impairment and has now moved to full blown dementia. He is still able to do daily activities by himself. He no longer drives, still goes to the gym and is walking a lot since no driving for him. He watches TV during the day, gets up and walks a lot without getting lost. He tries to help me around the house. I do everything from A to Z to keep the house on top of working from home for a health care company. He can't carry a conversation even though he reads the paper daily. I want to be more loving and kind, which is hard. I sometimes think he is my ticket to heaven. The way I treat him will be what the universe watches and expects from me. Does this sound crazy? I love your answers and read them daily. I am trying to have quality connections with eye contact and make him feel loved. I am life in the fast lane and impatient so we are no longer a good match. Thank you for your reply.

Maple3044 Dec 2019
I empathize with you. I found I was so angry that my husband has dementia. We had all these plans for when we retired, travelling here and there. We were diligent about saving for our retirement, so at least we have the funds to pay for a caregiver for four hours a day to give me a break.

I am not a very religious person, but every day I ask God to give the grace and patience to realize he didn't do anything to get this &-*%!?# disease. I have found if I think of his actions as those of an 80 year old toddler, I'm much more patient. Right now, he woke up, thinks it's morning, and is in the kitchen making toast. He will probably toast the whole loaf of bread. But it makes him feel productive and it's not really hurting anything.

I understand about not having anyone to talk to. That's what I miss the most. Gary has (had) a very warped sense of humor and he could always make me laugh at the dumbest things.

So, just take a deep breath, remember your husband can't help what's going on in his brain, and remember all the wonderful things you fell in love with. Hugs

Jojofoy101 Dec 2019
Well I have to say this post brings me such peace of mind. Your answers are better than attending dementia groups, I attended one. When I read all the posts, which I do daily, I have learned so much. My husbands dementia could be much worse, he has always had a great disposition and hope that stays the same. I have learned not disagree with some of the crazy things he says. Tonight he told me his car was ruined in an accident and that it was red, which it was. I sold his car in September. I just said gee thats really too bad. He can be so normal in so many ways and then just way off with what he says. It's like he has a brain circuit that does not work, and then he is somewhat normal again. I am taking care of myself, I love my work, have girl friends I lunch, text and talk with and a wonderful family. However, I can't imagine them being hands on when when I need that. Best thing I did was not to try and hide his dementia which I did at first. We go out with friends for dinner and they are kind to him, and we still have a good time. I am finding that I am having to fill in words or thoughts for him at times. I am saving money, we have two years plus of LTC and if and when I need a care giver I will reach out. I refuse to let him get me down, and I am trying to be as nice as I can. I talk with a person at Kaiser once a month who my doctor recommended. I worked for an assisted living company for two years and learned a lot about assisted living with the memory units. I would not put him there until I had to, but I know that my life comes first. Thank God I know that. I keep myself busy with fun Netflix movies and reading at night. I also have a 2 !/2 year old German Shepherd who brings me a ton of joy. We walk and play ball a lot. I am blessed and ask God for more blessings at mass, which I deserve. I was brought up Catholic so that is where the quilt comes in for my ticket to heaven in taking care of Bill, which you explained was not the best way to think. I am so glad I have you to turn to for good solid advice when I need it. What started this, was me feeling why in the heck does it bug the hell out of me to be around him. I am a good fake, I am a sales person. I am LOL sort of.....Life is still good and I will make life stay that way. You have to be more positive than this ugly disease.

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lealonnie1 Dec 2019
My mother will be 93 in January. She has always been a difficult person; very unlikable, very anxious, so anxious in fact that she cannot even carry on a normal conversation without throwing out all her worries and concerns, making it impossible to have a relationship with her. Now, with dementia, take ALL of those attributes and multiply them by one-thousand, and that's what's left of her personality. To say it's a total disaster is a gross understatement. I love her but I can't stand her.

How, exactly, are you supposed to NOT dislike somebody who exhibits the difficult traits of dementia? Your husband is no longer the man you married and had a great time with for the past 20 years. He's now a different human being, engrossed in his own world, concerned with himself only (I would imagine, based on other people I know with dementia) and difficult to even have a conversation with! You're only being honest here, and that's a good thing. You're stuck in a tough situation and my heart hurts for you.

I don't know what you mean about thinking he's your 'ticket to heaven' and 'the way you treat him will be what the universe watches & expects from you.' You are a human being, doing the best you possibly can under difficult circumstances. Try not to put unrealistic expectations on yourself, or believe that the universe expects ANYTHING out of you other than being YOURSELF and giving life the best you have to offer. We're all going to the afterlife, no matter what we do or don't do here on Earth, so try to keep that in mind as you go through your days. Adding more stress to your life at this point is not a good idea.

In fact, find some things to do just for YOU! Get your hair done, join a book club, have lunch with a friend........do things that have NOTHING to do with your husband OR dementia, and don't feel guilty about it either! It's okay to take care of YOURSELF throughout this ordeal, in fact, it's a requirement! Remember that you do not have a disease; you are still alive and still in need of adult conversations and companionship from time to time. The entire purpose of your life is NOT to take care of your husband 24/7. Get some in-home help for a few hours a day and GET OUT OF THE HOUSE during that time. With God's help, you can forge a life of your own in addition to caring for your husband whom you love.

If you play your cards right, you'll get rid of some of the resentment you're feeling (which comes with the territory) because you'll have more of your OWN life to enjoy.

Best of luck, dear woman, and here's a big HUG.

OldSailor Dec 2019
Oh yes, I went thru so many things with Luz. She kept everything so clean and organized and then she stopped and this other person appeared.
She developed aphasia and lost her ability to speak clearly. She could read but could not talk about what she read. She could not write her name. She no longer knew when and how to stop pouring the coffee. Even when she forgot to get a cup for it. Then she tried to clean it up with her bare hands. If I did not extra lock the doors she would wander off, even if she was not dressed for leaving the house.
She knew things needed to be done but no longer knew how to do them.
I hate to say it but all of this drew us closer. Giving her hugs and talking to her helped some. Reassuring her that things were fine and I would clean up the mess helped both of us.

I don't feel qualified to tell you how to handle your situation but I wish you the best and ask you to look into hiring some one to relieve you once in a while so you can take a spa day.

AlvaDeer Dec 2019
Essentially he is no longer the man you married. While you may have a lot of understanding of that, this remains the fact. It is not to be denied. He is not a ticket to heaven, and I wouldn't believe that even if I believed in Heaven, which I do not. We are not Saints. Saints die shot full of arrows and spend eternity attempting to answer the prayers of humans. Bad job description; wouldn't apply for it. You do the best you can with the limitations you as a human being have. So sorry you are going through this, because honestly, dementia makes us grieve a still living being long before we should have to.

NeedHelpWithMom Dec 2019
I cared for my mom and not a husband. I realize this is very different from what you are going through. My mom did not have dementia and I think that has to be the worst thing to deal with.

First of all, I am so sorry you are struggling. Hugs!

I cared for my mom with Parkinson’s disease. She was no longer my mom that I enjoyed doing things with before the disease. Perfect relationship? No one has perfection but at one time we were close.

Everything changed for both of us. Some say tragedy brings them closer and others say it tore them apart. Sadly, it tore mom and I apart. Too much togetherness. I burned out. She now lives with my brother and SIL.

Are you concerned about your husband continuing to live at home? Do you feel it would be better if he was in a facility? Please share. We won’t judge no matter how you answer.

You are most likely exhausted. I would suggest to take breaks when you can. Do you have any help with caring for him?

I am sure you feel like you are married to a different person. He isn’t the same. You are grieving for the man you were once married to. That’s a lot to adjust to. Others who are in this situation will share their experiences with you.

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