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KERSTIN814's Photo KERSTIN814 SparkPoints: (0)
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4/29/11 8:37 P

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Hi welcome. Can't add to what Judy said. My mother is "semi" demented. She remembers things at the weirdest times, but doesn't remember doctor's appointments, what people have said, can't pay bills, etc. She doesn't live with me yet, but I dread the day when that has to become a reality. Frankly, she is too mean to go to a nursing home. Even the best nursing home personnel would be challenged by her suspicious, accusatory nature. I can't let her live like that. I don't know how alert your parents are, but you need some space between you if possible.

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ANGORA4's Photo ANGORA4 SparkPoints: (33,308)
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4/28/11 8:57 A

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So glad you've joined us. Oh, how I remember when I first moved in with mom to take care of her. I can SO relate to your frustration. I hadn't heard of this team yet, didn't know anyone that was caregiving, and had no clue how to deal with it, didn't even really understand why it wasn't working.

Then I found Spark, and someone gave me my most useful insight. They explained the power struggle that goes on. You were used to autonomy, you came and went as you chose, you decorated as you wished (as the budget permitted). You ate what you wanted, you chose what food came into your house, you chose your TV programs and your use of time. And your parents did the same. Now, those two philosophies of life are doing battle with each other.

Your parents are used to being in charge of you, of giving you orders. But the tables have been turned, and you are caring for them, you must make decisions for them, especially if dementia is involved. And now they are living with you, their autonomy totally lost, and may be trying to retain every last scrap of authority they can muster.

So, there is a power struggle, autonomy issues, financial issues, the common stresses of change, and of watching your parents, your rocks in earlier years, become dependent. On top of that, there are often medical issues. Dementia, in particular, has symptoms of it's own, including agitation and general frustration.

That's the why of it, and it sounds daunting at first. It is daunting at first. I cared for my mother in her home for seven years full time, and my first years were very difficult. Then I came here, learned coping strategies, learned that while mom was treating me like I was a bad little girl, this was normal. Learned others were in the same boat. As time progressed, and mom became less and less able to take care of herself, this battling stage goes mostly away. And I realized what a treasure it had been that she felt good enough to complain. Once she was curled into a little ball on the bed, I would have given anything to have her up and feisty again.

This stage will pass, this time together will pass. It seemed like I was mired in a dark pit when I first started full time caregiving. I finally decided something was going to have to change, and since I couldn't change anything else, it needed to be me. I started looking for good things in my life, however small. A ray of sunshine, a smile, a moment of peace. As I continued down this path, I found more and more to be grateful for, it gets easier with practice. When I kept my eyes on the good, instead of the bad, it helped immensely. The more I looked at all I didn't like, the more depressed I got, and the more I focused on the bad. It was a downward spiral.

But, the more I focused on my blessings, it made the other things easier to bear. My mom sacrificed 20 years of her life, of her freedom, to take care of me. She sacrificed her job, her time, her sleep, her money. . .this short time of caregiving was but a small refund of what she had invested in me. It's all perspective. And that was more important than what was on the TV, once I thought about it.

Mom is gone now, we lost her a few months ago. I can watch whatever I want on TV, but have found that the whole caregiving experience has left me with lasting treasures. And one of them is that I have discovered that 'happiness' and 'entertainment' are fleeting. They depend solely on the circumstances. As a caregiver, I've been privileged to learn something much, much greater, contentment and peace. And they are available despite the circumstances. True contentment comes from within, and cannot be taken from you when circumstances change. It is a deep, abiding gift, that lasts long after the caregiving has ended. And worth every single ache, pain, sleepless night, and sadness it took to arrive at this point.

Once I realized that I didn't need everything to go my way to be happy, to be content, the whole world changed. I could live in a smaller space, and be content. I could deal with foods I wasn't fond of, and be content. Because having everything just so, just didn't matter any more. It takes quite a bit of soul searching, as to what was most important, and prayer, and letting go of things that weren't on the priority list anymore. It takes finding other ways to feed your soul, your mind. It takes creativity some times, but again, the results are incredibly worth it. It has changed my entire life for the better.

If you go back through some of our Support Forum topics, you should find much helpful resources for dealing with caregiving in general, dementia, coping, etc. There are many coping techniques that are so helpful. But the best one is still the first one I learned: Someone has to be in charge, either it's your parents, or it's you. Once they need to live with you, under your roof, they are your responsibility. And you need to change hats. You are no longer their child. They are no longer in charge. You are the caregiver. Which means when they bluster and fuss, you no longer cower. Just like they had to take you to the doctor for your checkups when you didn't want to go, when they wouldn't let you eat candy or things you were allergic to, or stay up at all hours as a child--so you step into that role. You proudly hold up your head, and refuse to be sucked back into the 'baby' role, as far as caregiving goes. They can fuss, they can fume, but you no longer take it personally, just as a parent ignores a child's temper tantrum, and does what is needed.

You love them, you are kind to them, you do everything in your power to show them love and respect and the best care you can give. But you do not have to take their temper tantrums. I had to learn to just plain walk away when mom's dementia would make her difficult. I had to remember it was the disease, not the person. And I could choose whether or not to take the hard, mean words to heart or not. I chose to ignore them, like the parent and the child's temper tantrum. I could love her no matter what, but I didn't have to let her abuse my family verbally. I could walk away. When I stopped rewarding the tantrums with attention, they greatly lessened.

This is a new chapter in your life, full of small griefs as you watch your parents decline. But they will be rewarding as well, there will be many blessings. It is difficult at times, but it is even more worthwhile. I found that posting my difficulties here, on our daily chat thread, "Daily Check-In", was a lifesaver. By the time I got everything posted, it helped me sort things out in my own mind, and help defuse the frustration.

There is help here, others to laugh with, to cry with, to share. We understand, and we're here for you. I'm so glad you're sharing the journey with us. Welcome to your next great adventure!

"Life is more than food. . ." Luke 12:23a


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145HEALTHY's Photo 145HEALTHY Posts: 1,742
4/28/11 2:40 A

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Hello to all.

So glad to see this team. Both Mom & Dad moved in 8 weeks ago and the transition has been a challenge...no...it's been a living nightmare! Figured some folks here might have ideas to share that may help.



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