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Old 08-31-2011, 04:56 AM   #1
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It's all a bout me.

Wow.

I've noticed that for the most part my rants seem to be all about me.

Perhaps I should join a caregiver forum.

Yesterday I was just horrible to my mother yet she had no clue. I baited her, corrected her, insisted she understand, blah blah, and I knew I was doing it! Then I had a meltdown in the evening crying only wishing I had my mother back.

She only got confused and combative when I insisted she had not taken a shower "last night" nor the day before or the day before that. She is a tricky one with every excuse in the book as to NOT take a shower while becoming combative if she in fact is "convinced" to take one.

We had a doctors appointment for her chronic itch which was finally diagnosed and treated. (Lichen sclerosis) All morning she ranted about "why she had to go back to the doctor" (as she fears they will notice her decline). Her insistence that her itch has been gone for over a year (not) and that she did not need to see her doctor again went on for hours until her appointment, where she promptly told the doctor her itch was still there and she wanted more "cream", which he gave her several refills for. All the drama for nothing.

Drama. Thats the word I have been looking for to describe her world. Something I had systematically cut from my life and to now face on a minute by minute basis.

It is also distressing to notice that she truly has no regard for any other than herself, in every conversation and every instance, and she can't help it. It is part of her disease as she was the most compassionate person, a born caregiver, but that is gone. I spend most days listening to her delusions which are only presented to build her self esteem, i.e. she has worked for the FBI, she was a doctor, she ran a large corporation, she was a teacher, etc. none of which are true. So I guess I just blew when she started again about her life which is completely false.

I did this to save my own sanity, I know I should go stand in a corner for this, but I am only human.

Just ranting and rambling, hope that is OK, I just feel compelled to write...

Sincerely...

 
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Old 08-31-2011, 07:01 AM   #2
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Re: It's all a bout me.

Hi, I have an elderly husband and I get frustrated too when he looks out the window at the neighbors after I come home from work and he doesn't talk to me. He is in his own world and I'm glad he is still home with me but I still wish I had a husband to share my thoughts and feelings with. If I really need to talk to someone, I call my girlfriends who will listen to me and encourage me. He makes up stories too and doesn't like to be told what to do and also hates showers. We tell him it is a state law that he has to be showered once a week. It has worked so far. Dementia is difficult to see in a person who used to be vibrant and sociable. I am sorry you are having a hard time. I yell at my husband too sometimes and then I can hear myself as he looks at me blankly and asks why are you yelling. Boy, then I have to leave the room and take a deep breath. Take care and be easy on yourself. We all get frustrated and they can't help it.

 
Old 08-31-2011, 07:19 AM   #3
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Re: It's all a bout me.

Annie,

I understand your frustration. Don't feel bad that you blew it off. I did it at times and my husband did it a few times back home. Sometimes I still get mad at my FIL as he was not doing justice to my husband - he never cared about my husband's career and insists we care about his past career??? (My FIL was married to his career.) At times, I saw that my husband tolerated it, so I blew it off at my FIL last year. Now I don't bother. Yet once I made a mistake talking about him not walking in his face although not to him.

It is human. Women are more emotional and affectionate so I expressed my feelings... Now I avoid my FIL if I cannot help it to make it calm.

The thing about her delusions is quite common... Does she still watch news?
She should not watch bad news or she would think the bad news has to do with her. She thinks she is FBI and a doctor - this must come from the TV or news. Alzheimer's/dementia patients don't get delusion out of the blue like a mental patient who is literally crazy. They get the clues from the past and the surroundings. So if you make corrections on the TV, the news and etc, she would have less delusions. Of course, if she does, you just have to ignore her. My FIL still thinks he is "working" in the residential home. He thinks he is doing experiments there. He thinks the blood test is for work (it is for his checkup)... He also thinks the neighbors are his caregivers and can give him money back home!!

About the shower, if she is at the point that she refuses to be helped, just let her have the shower once or twice a week. Give her sponge bath if necessary. If you can, go to the bathroom with her - draw the water for her, wipe her and give her soap. She can no longer do it herself.

To say a shower is required by law is funny. Yes, we told my FIL it is a law to hire a caregiver or the neighbor would call the police... Use all the excuses you can come up with.

We have been there so I understand your feelings. It is not all about you. I think it is in fact all about her. Just like my FIL, it is all about him.

Hugs,
Nina

Last edited by ninamarc; 08-31-2011 at 07:59 AM.

 
Old 08-31-2011, 12:24 PM   #4
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Re: It's all a bout me.

No, nina, it is all about her past. when she took Kemp Karate, she was registered with the FBI as a lethal weapon, something required by law to do. (shes FBI)

She worked for doctors as a secretary. (shes a doctor)

She went to accounting school. (shes a teacher)

Etc; Anything she has done is elaborated to seam busting proportions.

The only TV here has 4 channels. She cannot comprehend a TV show except for Americas funniest videos pertaining to cats.

I'm in a bit of a dilemma. She calls for me to come and sit down and talk, immediately picks up the guitar or mandolin and begins to play and sing. I have heard the same songs for 4 months and am about to explode. Compliments are showered to her but I cannot take anymore. Left the room telling her that every time she asks me to come in and talk, she does not talk but plays her guitar so I leave.

I somehow know this is wrong but how much can one person take???????????

 
Old 08-31-2011, 12:26 PM   #5
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Re: It's all a bout me.

we have all done that. its not worth the negativity. take deep breaths and try to settle yourself down. uou have to take care of yourself and remember its one day at a time.

 
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Old 08-31-2011, 12:33 PM   #6
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Re: It's all a bout me.

Annie... this is the world of dementia that we live in. Our loved ones can't change who they are so we have to find a way to cope with what they give us. We are the ones that have to change our thinking for our own sanity because they are helpless to help us.

As for your day yesterday... yep there are those days when you just don't even want to pretend to deal with the drama let alone actually deal with it. Stand in the corner if you must, for your own well being, but I am not going to put you in a corner. You are human! You do have emotions!... valid emotions. This disease takes away everything we thought we knew about life and smacks us with it relentlessly. The good thing... Mom doesn't have a clue what yesterday was like. It is only you that holds all the emotions that day threw your way. Each day with Mom is a fresh start.

Yep, Mom is trying to hold on to her sense of self, her identity, her dignity, and her grasp on what she believes is reality. When I think about what goes on in Mom's mind, with the confusion, loss of self, and disconnect from life in general, I have to feel a little differently than I do when I am overwhelmed with what I am letting go through my mind. Yep, Mom's world is all about Mom and she can't connect with you at all... so we have to connect with our loved ones, change the way we think, and change our expectations.

I have had days just like your yesterday. Then you throw yourself into the guilt spiral which only makes it worse. Then I found one of the best books I have read since my journey with my parents started. I have mentioned it before but you really need to order "Coping with Alzheimer's: A Caregiver's Emotional Survival Guide" by Rose Oliver and Frances A. Bock. It is the first book I have found that deals with the caregiver's emotional roller coaster that we all life with and what to do about it. It sure has changed my thinking and therefore changed the way I deal with Mom and my mental well being while dealing with her. The foundation of the book is .... "You feel the way you think!" I 100% believe this and said it long before I found this book. It is within us, the caregivers, to change the way we think and therefore improve our emotional well being.

You have done one really good thing... ranted and vented. Each of your emotions are totally valid. It is frustrating, disappointing, scary, and difficult. But it is not impossible. You survived tomorrow so we know you can do it. Even on the really bad day you got through it. You just need to change some of the thinking process that goes into your day to make it better.

Self-pity is considered an overreaction. It doesn't help you and it makes things worse for you... as you saw! It is a way of saying I must have what I want, when I want, and if I don't get what I want, I must make myself entirely miserable. It is nice to have what we want but MUST you have it? In this situation can you have it? I learned that self pity only makes things worse for me and doesn't do anything to help me or Mom. Mom doesn't even care any more. The trick is to accept all those negative emotions but to know in your heart that you can deal with it. It is not going to be the end of the world if Mom rants and raves and feeds her emotional fantasy that she needs to retain her sense of self. You need to retain your sense of self and don't let her define you. Once you know you can deal with all that she throws your way, you can deal with it better because you are not an emotional wreck.

Please get this book and read it Rant and vent all you need to here and save the best part of you for your Mom. It's going to take all that you can muster to deal with her long term. When you find your peace with yourself and her disease... it does get easier. The best advice I can give is expect the unexpected and go with the flow but don't argue with her, expect her to react to your expectation, and know that you can do what is necessary for you both.

Love, deb

 
Old 08-31-2011, 12:42 PM   #7
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Re: It's all a bout me.

I'll get the book. I need the book. When I think I am doing so well, serene, accepting, I crumble.

Thank you.

 
Old 08-31-2011, 12:59 PM   #8
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Re: It's all a bout me.

Annie... you didn't crumble!! You just wavered a little bit in your thinking One of the things I learned is not to put that devastating words to my emotions. I don't crumble, I waver. I don't fail, I make a mistake. I never say "I can't take this" because I know I have and I will again. I just say it's a bad day. We are what we think and we let our thoughts take us in a downward spiral to places we don't want to be. Sometimes I just have to say to myself ... well there you go again and change a word in my thoughts to change my outlook. Then other times I have to have a real "Come to Jesus" revival meeting with myself. The first thing I do is close my eyes, clear my mind, and breath. The stress and tension will send you into that bad thinking. By stopping and clearing out the stress and anxiety you can get yourself back on track. It works. I actually walked out into the courtyard yesterday and just stood in the sun breathing with my eyes shut. I wasn't clearing the stress and anxiety from dealing with Mom... but from dealing with staff It gave me what I needed to go back in and have a good afternoon with Mom despite the swirl of drama I found myself in. Before I left I had an answer to what was stressing me out... so what could have been a bad day became a good day. It is all within our power to make life what we want it despite what we are given....

Love, deb

PS... my book is torn up with the pages falling out from hauling it around with me. I can't seem to leave it be. I read it at stop lights .... oops I didn't admit that did I!?!?! I will be getting me a fresh copy before long. But I hate to lose all my highlights

 
Old 08-31-2011, 01:06 PM   #9
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Re: It's all a bout me.

Every day is a good day, some are just better than others.

Thank you.

Sincerely...

 
Old 08-31-2011, 01:44 PM   #10
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Re: It's all a bout me.

I`m really new to all this but you just gave me a good chuckle when you described your mum playing and singing every time you sit down to talk to her.I`m sure it`s not funny for you but at least you brightened my day!

 
Old 08-31-2011, 02:35 PM   #11
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Re: It's all a bout me.

She is going to the nursing home tonight to play the cymbals in a band, a welcomed reprieve of today. It has taken her 2 hours to find just the right outfit which is the original outfit she chose 2 hours ago. I know, I am complaining.

As an intellectual, it is hard for me to be, no, remain compassionate after a prolonged period of time.

I need my own place, space to bring her to, to swim, to invite her for dinners, to do my own thing with her by my side.

Her space is too.............her with memories which hurt her. I mean this by saying she needs to branch out from the Tierney she has lived.

Let me take you to have your hair done, nails polished, a massage. Lets do lunch, I don't expect anything from you but to show up, and if you don't thats OK too. I need MY place to bring her.

She has too much power against herself here.

Does anyone understand this?

OK! I'll get the book!

Last edited by travelgrl; 08-31-2011 at 02:37 PM.

 
Old 08-31-2011, 03:12 PM   #12
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Re: It's all a bout me.

Quote:
Originally Posted by aviovaimo View Post
I`m really new to all this but you just gave me a good chuckle when you described your mum playing and singing every time you sit down to talk to her.I`m sure it`s not funny for you but at least you brightened my day!
I know I will wish for a day she can do this as she will stop some day.

No guilt. Just tired.
Crazily thinking, love you all who deal with this.

Sincerely...

Last edited by travelgrl; 08-31-2011 at 03:14 PM.

 
Old 08-31-2011, 03:59 PM   #13
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Re: It's all a bout me.

You can try distraction. Maybe you can find some activities for her to do so she does not play the guitar all the time. She is bored and she forgot that she sang already...
Telling her that does not make her understand, but I know you had to say it. It is the limit... You can try distraction or find other sitters to help you so you can do other things and she has a companion. Try day care center so she can do things with the seniors there.

Hugs,
Nina

 
Old 08-31-2011, 04:52 PM   #14
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Re: It's all a bout me.

Annie... no expectation except to expect the unexpected. Dealing with their bizarre behavior is difficult. It breaks every rule we have based our lives on. Why can't Mom make a decision? Just pick on? Does she not know that she just repeated herself for the tenth time and it makes no more sense this time than it did the first time? Your brain knows the answer to all this but your heart is slow to catch up.

What you want is your Mom back and a bit of normality in a situation that will give you neither. Just change the location and what? You have a Mom that is not surrounded by her familiarity and is more confused. You can invite her to swim and she can't find a bathing suit, won't put it on, or is afraid of the water. You can invite her to get a manicure and she will be terrified of what the lady is doing to her. Yep, take her out to lunch and the menu will panic her then she will swear she didn't order what they bring. You expect Mom to show up and Alzheimer's will show up instead. Where you are right now was probably the most difficult part for me to navigate. Mom was sort of there so I expected more than I realized. It is when I learned that sometimes it has to get worse to get better.

You do need your space. But your Mom needs her space as well and she also needs supervision and help. Talk about the colliding of worlds. When the daughter becomes the caregiver and collides head on into planet dementia that hold Mom in a bubble she can not escape from.... it's difficult. What you need right now is a respite... I wish they had caregiver respite at a spa and an adult day care for Mom!! Maybe that's a new business idea?

Love, deb

 
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