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would you want to take care of you?
Posted: Monday, July 13, 2015 3:51 PM
Joined: 9/12/2013
Posts: 3608

I wonder if we are as helpless as we may be led to believe in regard to changing our behaviors.

Reading about relationships a few years ago and the question was asked, "Would you be happy to be greeted by you at the door after a long day?"

And "How do you want to be treated? be that way to the person you want to "change"

Your dog greets you at the door with all kinds of excitement and love and well wishes. I aspire to be more like my dog. She makes people feel welcome and appreciated and gives them space when they are not feeling so good.

When my husband seemed resistant to becoming more gentle with me I tried to convince him by being unhappier and angrier. It was hellish for us both. My priest kept telling me "You can only change you, and don't think that is not enough.".

I remembered that article. How would I feel being treated like I was treating him. Would I want to come home to me? I figured I would probably take care of me, but it would not be fun.

So I practiced making my face smile. I taught myself how to laugh again. I started giving him encouragement, thanking him, complimenting him, it started to feel real.

I could not give him massage like when we met, but I could rub is feet. I would do some dishes when I knew he was tired of it. I remembered how handsome he is and told him. I let him sit with his computer instead of complaining.

I stopped being mad the tub was not washed out and washed it as a present for him. I spoke well of him to other people. I invited him to go for walks with me and the dog and if he did not want to, I stopped taking offense and sulking.

When he would leave for a day or 2 to help his mother I would smile and hug him when he left, and when he got home even though I missed the safety of having him here. I invited one of his friends over and helped clean up the living room.

Anger drives people away. Being self righteous creates distance. Self pity over too long a period starts to smell bad. It was the right thing to do to. ask how he was feeling. Ask if I could help him in any way. Ask what would make life better for him, and to listen and respond, not argue that I was the sick one, I was the one who should get special treatment.

I think we can learn to behave better even with dementia. I don't think a diagnosis of dementia makes us difficult there after, but we may be difficult. We may be driving away the one person who would help us. If we quit complaining and demanding maybe they won't do things exactly as we would wish, but was that so terrible to learn how to loosen my grip a little? No, once I practiced letting him do his best his own way and appreciating that, our world changed.

I wonder if other people have found they needed to soften and give some space to the ones who now carry the burden? How did you do it? Did it work?

I am in love with my husband again. Back from the hollow grave!

I hope this helps some one struggling with what seems like bad CGvr or a CGvr who does not understand. If you can help them help you instead of being angry about how it is going, your world could change. Possible?

Posted: Monday, July 13, 2015 6:44 PM
Joined: 6/6/2015
Posts: 55

Alz+, you are such an inspiration! I wish you would make videos like Teepa Snow, putting your "Do Unto Others" practices out there for all of us to see you in person, romping with your dog and doing dishes with your husband.

Yours are the first posts I check when I log on. I treasure each of them, even though I sometimes disagree. (I like the old saying, "We can disagree without being disagreeable.")

Peace be with you...

Posted: Monday, July 13, 2015 9:46 PM
Joined: 9/12/2013
Posts: 3608

beth - I am ringing one bell on this street corner. You do not disappear, you do not become worthless, the best treatment is proper setting for living with dementia and hugs, rubs, and interesting things to do.

I want to know more about you.

Michael Ellenbogen
Posted: Tuesday, July 14, 2015 6:50 AM
Joined: 11/30/2011
Posts: 4500

I original tried to push my ways of doing things with me wife to make up for my failures. I realized after two years she die not like my ways and keep complaining. I backed off and tried to let her do it her way and let her put things in place her way. Now that is even worse failure as everything is falling thru the crack until it becomes a urgent matter. Has no understanding of bas lines if things. Easy to do if you have system. I completely understand when one does not like my system but what do you do when they cannot find there’s. I am at a point that I don’t want to get her more aggravated so I just watch things continue to fall apart hoping she with finally get it to do it a better way. This is one part I can not seem to get an understand on what I can do.

Mimi S.
Posted: Tuesday, July 14, 2015 9:20 AM
Joined: 11/29/2011
Posts: 7027

Welcome to our world, Beth. Do tell us more about yourself.
Posted: Tuesday, July 14, 2015 10:02 AM
Joined: 12/8/2011
Posts: 33

Thanks for your post - I went through similar things - When I first couldn't do certain things I thought they should still be done my way - but my Priest told me - just say "thank you".....and he meant about all things that are given or done for me and it made it clear - I still mess up sometimes because I am kinda a control freak and losing control of my health can make that come out -

But most of the time I say thank you and I am grateful and I am truly! My husband does his very best to give me dignity and help me and it's a fine line to walk for him. Thanks for reminding me to smile and greet him more warmly....I need to work on that....I appreciate your post very much.

Being kind to one another has helped me and my husband more than anything to understand one another better.....I am very fortunate to have a husband who stayed after my diagnosis and is committed to growing together....whatever comes...

best wishes all.....

Posted: Tuesday, July 14, 2015 10:12 AM
Joined: 9/12/2013
Posts: 3608

Out of my over long post above the thing to try is this:

Ask your husband or wife, daughter, son or other care provider

"what can I do to make this easier for you?"

"how do you feel about our situation?"

"do you still love me?"

do not interrupt them or tell them they are wrong.

actually think about things from their perspective.

Foremost become willing to help THEM.

show them you heard by giving them what they ask for.


It is not all about you (me, us)

The first time I had this thought I shocked myself.

It felt so strange - that is how far off base I was.

It feels like we are all alone in this but our animals, children, friends, and siblings are affected. Everyone we meet is affected by our bad mood, anger, our sense of entitlement.

Having dementia and knowing I do has been a humbling experience, and what I feared has become a saving grace. Just think it over to see if it makes sense.

Posted: Tuesday, July 14, 2015 3:57 PM
Joined: 6/6/2015
Posts: 55

Your title on this thread asks who we would want to take care of us. Alz+, I sure would like to have you on my team!

You and Mimi asked for a little more info. about me. As I think I said on one of my first posts, I don't really know that I belong here, as my symptoms are not, for the most part, caused by the degenerative neuro problems you all are dealing with. While my MRI showed evidence of some TIA damage, most of what I'm experiencing is caused by heavy duty chemo for an aggressive form of cancer. It has a pretty high rate of brain metastasis, so high dose brain radiation will probably be the next step, and that can cause significant problems as well.

So far, my memory has been most affected. I was supposed to go to another department after today's infusion, but I couldn't remember which one; then when I got there I couldn't remember what I was there for. Fortunately, I had paperwork with me and the receptionist figured it out. Sheesh. I'm also having a lot of trouble with word-finding and trying to express myself face-to-face, so I use email a lot.

So, that's me. I do tend to blab on. But I've learned so much from this forum, especially from your can-do, we'll-find-a-way attitude. It makes such a huge difference in dealing with any of the difficulties life throws at us, but especially for those that are often viewed as "hopeless."

Peace and hope, back at ya!

Posted: Tuesday, July 14, 2015 4:11 PM
Joined: 9/12/2013
Posts: 3608

Cancer treatments can be so horrible to deal with, and then the memory problems on top of that.

Even if you do not consider your memory issues "dementia" this is a place for any one struggling with similar problems.

You may have insight we do not have. Please share when you feel like it!

I am number one at BLABBING ON. So far the politeness given me here has encouraged me to go on, and on - and helped me rethink the care part.

Glad you are here. Hope a new treatment comes for you very soon, and peace to you during all you are going through.

Posted: Tuesday, July 14, 2015 4:24 PM
Joined: 9/12/2013
Posts: 3608

TONYA - thanks for kind words and your example of remembering to be grateful.

The shock of being diagnosed lasts a long time and during my initial grief I did not want anyone telling me what I go on about on the boards now.

These boards gave me a lifeline. There was a woman named Iris who was a presence almost every day and she told me to cut the STRESS as that takes away 50% of mental function.

Hard to cut stress when you blame your husband and children and the world for not being what I wanted. So in order to have a better life and to not be scary to my grandkids I decided to look at myself as others saw me. I was called "morbid" by my daughter in law. That scared me! I thought she would not let me see them if I did not shape up and resented it.

I always have loved taking care of the injured and wounded. It is lucky for me my husband had no place else to go!

We also had our spiritual practice to turn to, I did not want to go first though in learning to be kind again. I have a hard time letting go of stuff, and not earning a living still makes me feel like I will starve some days.

I asked for help from the Divine and slowly things turned around. I think I was a really fun caregiver for my Dad when he had ALZ, and for my Mom after she had a stroke. Not every one is cut out for it though and I respect that now, a huge difference in attitude for me. There is no guarantee my husband will outlive me, I did not want to waste the chance to be in love again.

Hope to read more from you about your way of handling this stuff. It is really hard but much easier if we learn to enjoy what we can and be kind.

Posted: Tuesday, July 14, 2015 10:58 PM
Joined: 12/5/2011
Posts: 795

Hi bethNC,

Sorry to hear about your chemo and aggressive cancer. Hang in there, it will get better in time. I'm so glad you found us.

WELCOME to the AD/Other dementia's Message Boards. We do have a 24/7 toll free 800-272-3900 Help line if you need assistance anytime.

These boards are filled with wonderful people who are her to learn and help and lift spirits!

I hope you have lots of help with you taking chemo and feeling very crummy!

Please, keep posting as often as you'd like to.

You will be in my thoughts and prayers.

Good Luck.

Peace and Hope,