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Old 12-08-2011, 07:16 AM   #1
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Its really hitting me...

my mother, in her mid 62, has dementia.

The last time i seen my mother was April 20, 2007. We had a huge fight because she was being completely unreasonable. (at the time my husband was deployed and i went home to stay with her) She would yell at me for no reason at all, storm out of the house and speed away in her car. When she came home i told her i was leaving and she needed to go to the doctors to get checked out because she clearly had serious issues. I also told her to not call me till she got help. I left her on the floor crying and drove myself back to my house 24 hours away.

I didnt talk to her for over a year. It wasnt until May 2008 that she finally called me and told me that she did go to the doctor and that they ran many tests and it came down to her having dementia. They started her on some meds and had her doing some mental mind game things and she said that she was doing much better.

August I moved to Italy. My mom tells me that shes doing so much better and that the doctor can really see a difference. I dont know if thats true or not. Some days when i talk to her she sounds clear and doesnt repeat herself all the time. Other days i cant take being on the phone with her to long because she repeats herself so much.

From talking with my sister, i think if anything its getting worse. She said anytime something new is introduced to the house it gets worse. Such as my step dad just bought a new computer, she said once she got that it seems like the dementia is getting worse again.

Today i called her. She said that she got the Christmas present i sent. Which was a digital picture frame. I had already loaded the pictures on it, so all that needed to be done was put the plug into the frame and plug it in the wall. I was on the phone for an hour with her trying to talk her through it. I almost wanted to tell her i would call her back because i was frustrated and wanting to cry, i mean how hard can it possibly be to plug it in? I remained as calm as possible because i know in the past when i let it show that i'm frustrated she just gets more upset. She finally figured out how to plug the plug into the frame (mental note, next time just make sure if the plug is not attached, attach it for her before sending out). Then it took another 10 minutes for her to plug it into the wall. She actually asked me where to plug it in at and said something about unplugging the tv. I told her that wasnt necessary and to just plug it in to the outlet on her kitchen island. She finally got it to work, but it really hit me today that shes not the same person she once was and this is clearly getting worse.

I dont know much about this disease, i've been researching online. I just really hate seeing what its done to her. And i'm worried about a lot of things with her now, especially after out chat today about how to plug something in.

 
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Old 12-08-2011, 02:37 PM   #2
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Re: Its really hitting me...

so sorry to hear this. dementia is a horrible disease. you need to find a liitle patience within yourself to help you thru this. its easier said than done. if you take care of yourself it will help you thru this journey. i hope that helps and keep venting. we are all here for support.

 
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Old 12-08-2011, 03:58 PM   #3
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Re: Its really hitting me...

Momo, what you described is classic dementia from start to finish. Her temper tantrums, unreasonable behavior, and behavioral changes you saw so many years ago are often times the first changes you will notice. At that point they can compensate for the other changes but the emotional changes and rational logic goes out the window. Because of the brain changes, she doesn't have a clue what is going on. To her, her actions are rational and logical. She is sure it is you that has lost your grasp. Yes, she will tell you that she is fine, better, ok, nothing wrong at all. She doesn't know that what she is saying is repeated 20 times or that you just told her that a few minutes ago. That is what short term memory loss is.

The inability to understand anything new is definitely a problem. If it is old and familiar they can use past memories to help them function. If it is new they have no idea what to do with it... as you saw. Electronics seems to be a source of distress because their abilities to use those new gadgets is recent. Mom didn't have a computer until she was in her 60's. She was a wiz until Alzheimer's set in and that was one of the first things to go. It didn't take a new computer, it only took a new computer program to send her into a tail spin. A window dropped to the tool bar would take hours on the phone to make it reappear! Mom would call because she couldn't get the TV remote to work as she pushed the buttons on the phone. We also got Mom one of the new fangled picture frames. She kept it unplugged because she couldn't make it stop. She never did figure out the cell phone!

Yes, the disease is progressive. It is not going to get better or go away. It is what it is despite what she says. Is your sister close to your Mom? I assume Mom lives with your step dad? What does he have to say? What type of dementia does she have?

Listen to the repeated stories and hold them as a treasure. At some point she will lose her ability to answer the phone or even speak with you on the phone. Yes, it can be frustrating when you listen to the same tale over and over unless you understand it has to be something important to Mom. Just let her ramble. I truly wish my Mom would call and ramble for a while... or even talk to me when I am there. Not trying to be scary but just put it in perspective. Treasure what you have now because it will go away all too soon.... even if it does make you want to babble!

Being so far away I am sure it is difficult. Hang in there! This is a great place to vent and find real experiences that will help. Knowledge is power and understanding the disease is the first step. So keep typing. Sorry you need to be here but glad you found us .....

Love, deb

 
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Old 12-08-2011, 10:52 PM   #4
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Re: Its really hitting me...

Thank you Deb for that. I have no one really to talk to about this. My husband doesnt get it. My friends who know ask how shes doing but again they dont get it since they have never dealt with it.

I have no clue what kind it is. Up until a couple weeks ago i had assumed there wasnt different kinds. I'm not sure if my sister knows, i'll have to ask her next time i talk with her. She lives close to my mom but i wouldnt say they are super close. I think its hard for her to be around her plus my mom will blame her for a lot of things. Like one time i sent pictures of my daughter home but not my son to my sister to give to my mom. My mom was mad at my sister because she believed my sister was keeping my sons pictures from her even though i had told her that i didnt send pictures of him.

I dont get to talk to my step dad much because of the hours he works and there is 6 hours between us. But i dont think he would say anything to me about anything anyway because my mom would be there and i know he wouldnt want to upset her.

I'm going to email my sister and see if she can call me before work today or something.

Again thank you for listening to me.

 
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Old 12-09-2011, 12:21 AM   #5
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Re: Its really hitting me...

Oh I understand, been there, done that, and know exactly what you are feeling.... times two! Dad had Vascular Dementia and Mom was his caregiver until she was diagnosed with Alzheimer's. At this point I have been on this path with my parents since 1998. Before that I worked in long term care for years because my grandmother also had Alzheimer's and stayed with us on the weekends. I wish I didn't know as much as I do!

My hubby doesn't get it either. Actually he is an avoider. His Mom was showing signs of dementia the last years of her life and he was one of those clueless siblings. He never complains about what I did for Dad and now do for Mom but he doesn't want to talk about it. You are right, those that have not lived with it just don't get it. They ask but they really don't want to know!! That is what is so great about this place. We are all in the same boat and we keep each other afloat because we do understand!

Just be sure that Mom is being well cared for. Many times a long married husband and wife will cover for each other until the situation is not good. Mom did it. She compensated for Dad as long as she could. Then Dad compensated for Mom. Then we were caught in a situation where neither of them were capable or able to take care of themselves or each other.... and it all fell apart so quickly that it was mind bending.

Yes, the accusations, the paranoia, the repetition, the cover up... it is all frustrating because that is not the way our parents are supposed to act. But it is up to those closest to be sure that all is well.

Make sure your sister understands that the accusations are because of the disease. What Mom says is the disease speaking. In order to survive this phase of the disease you have to find a way to not take it personally. I was chewed out, chewed up, disowned, threats of being thrown out of the will, and even had the police called They are right and you are wrong... always!!! You can't argue with them because you will lose. So you just smile, say you are sorry, distract them with a bowl of ice cream, and keep going. I think the worst episode that ever happened involved my BIL. Mom was crying and my overprotective Dad ask who had done something to her that made her cry. Mom, not recognizing my BIL sitting quietly in the corner, pointed to my BIL and said "HIM!". Dad picked up his dinner fork and went after my BIL who knew to RUN!!! Dad's bum knees couldn't keep up. He called my sister and I who were close by. I was able to disarm Dad and calm him down. To this day when my sister or I show my BIL a fork he shivers. I always ask if he is still eating with chop sticks!! Yes, it is intense in the moment but you have to keep you cool, deescalate the situation, and then find the humor!

Hang with us We get each other through the bad time and even find the smiles and laughs!.

Love, deb

 
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Old 12-12-2011, 12:12 PM   #6
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Re: Its really hitting me...

Well this is nothing new to the world of dementia. My father-in-law has severe stage of Alzheimer's. Back in 2007, he forgot about computer and could not use the word processor anymore. He could not use the electric shaver and etc. It is dangerous for them to play with electrics. Please ask the family to set up the digital photo frame or anything. It is dangerous if she causes fire.
It is typical. She forgot what it is like to have plugs. Where does she plug it into? Why? What is the wire for? What is in the frame? Is it a real photo? Is it a real person trapping there?

You thought she would get better as she told you on the phone. Well, it is the other way around. Yes, it is better that she got diagnosed and is given meds. But it will get worse in terms of her memory loss and the need of caregiving. Now she may be in early moderate stage when she starts not knowing about the appliances. She cannot cook alone because she will forget about the stove and cause fire.

Please get a book on dementia. I know some people prefer this book or that book. But there are many books on this subject. Please read some of them to understand dementia.
Yes, please find out if it is vascular dementia or if it is Alzheimer's. The meds are different.

We are also long-distanced caregivers but we moved my FIL to a state nearby. We are in Canada and he is in Vermont. Just 2 hours drive. Also, on the phone, it is hard to see what she is doing. Try to visit her often.

Regards,
Nina

 
Old 12-13-2011, 04:47 AM   #7
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Re: Its really hitting me...

One of the hardest things to do may be to realize that your Mom gets a get-out-of-jail free card with dementia. It's hard not to be irritated when she repeats herself, gets angry for "no reason," says mean or hurtful things, or forgets things that are important to you. It's hard to force yourself to try to be supportive or to change a relationship that you've had your whole life. You have to realize that she's ill and not to blame. Her brain is shutting down. The parts of her brain that control memories, perceptions, self-control, emotions, etc. are being damaged.

I went through a stage with my husband where I would get really irritated because I thought he wasn't "trying hard enough" to fight the progression of the dementia (smack myself).

Yes, it will be hard. It will be hard on you and you will feel a lot of guilt for blaming her for things that she can't control. You will feel guilt for not being with her to help her. You will feel guilt when you get irritated with her. It will be even harder on your mother's husband and perhaps your sister if she gets involved in the caregiving. Your mother will need all of you.

Please don't abandon her just because it's hard. Use this time to remember good times, and to let her know that she's loved. Forgive her for things that may have been done as a result of a brain illness. Realize that there's no longer any chance of a future in which your relationship can be wonderful. Begin to prepare yourself, since this is terminal. We all lose our mothers someday, and it's always one of the hardest life-changes that any of us experience even when we feel prepared for it.

One of my step-daughters stopped having contact with her father when he was diagnosed with Alzheimers, since "she wanted to remember him the way he was." Frankly, DH didn't remember that she hadn't called or come to see him. His world didn't include her, and it didn't upset him (not because he hadn't loved her, but because his brain was damaged). His daughter is the one who lost out by not being in touch with him. She lost the chance to talk to him about the memories he retained, to hear his final words, and to say her good-byes. She disappeared from his memories much sooner than otherwise might have happened.

There will be many ups and downs during the years ahead, and you will have a lot of time to get adjusted to this new reality. Hugs.

Last edited by Beginning; 12-13-2011 at 04:50 AM.

 
Old 12-13-2011, 11:33 AM   #8
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Re: Its really hitting me...

Well said Beginning

Love, deb

 
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