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    NELLJONES   232,651
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Mom and Dementia


Wednesday, February 06, 2013

My mother has been diagnosed with two syndromes, both causes of dementia.

One is called cerebral amyloid angiopathy. I'd never heard of it. Thank God for the internet. It is progressive, caused by the same amyloid proteins that cause alzheimer's, but in a different pattern. Her MRI shows little blood bursts all over the outer third of her brain. This is the cause of her short term memory loss. It also explains why she sometimes feels pain that has no physical cause,or has bouts of vomiting. She can't read and know what she read. She can't remember how use the microwave or a cordless phone. She'll say the same thing over and over. She can't remember anything anyone tells her. We can expect seizures and strokes sometime in the future, next week, next month, next year, who knows? But when they start they will continue.

The other problem is Korsakoff's syndrome, caused by years of drinking. The primary symptom of this is the loss of accurate long term memory. She makes up stories about her past.....and believes them. She has rewritten everything that ever happened to her, and invented a lot of things that didn't, and believes them all to be true. It's called confabulation, a word I've always thought to imply an intent to deceive. She isn't trying to deceive anyone. According to her she has lived the most fascinating life with herself as the heroine in many events that never happened. She drinks far more than she says, but it isn't denial, she believes it, and she no longer has the mental ability to look at empty bottle of wine and know that one glass of wine a day doesn't add up to even 1/5 of the volume of empties she puts out to recycle every week. We have explained in ways my little grandkids would understand. She simply can't.

I guess that's the benefit of dementia: she doesn't know she has it. There is nothing wrong with an 85 year old living in a fantasy world, I guess. It's just sad. She still knows who we are all, just not the lives we have lived.

Her doctor has asked that we three kids decide if we want a "Do Not Resuscitate" order, and I think we do. Obviously if she falls and breaks a bone, sure, we do whatever we can. But when the seizures and strokes begin, there is nothing to go back to, so what is the point of all available medical intervention. They need to know in advance, before the tubes get hooked up.

It's a terrible choice to have to make when she is still moving around just fine, if slowly. But we have to be realistic about the future. It's hard, and I feel like I'm holding my breath each day. The CAA is not her fault, the drinking is, but there is nothing any of us can do about any of it.

I can accept it hard or accept it easy, but accept it I must. Doing nothing can take as much effort as doing something. Now I know why some religions light candles. At least THAT is doing SOMETHING.
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Member Comments About This Blog Post:
LOPEYP 2/9/2013 5:48PM

    It's so tough to see our parents age. my mother was diagnosed with demetia a year ago. For the most part, she's been okay. Does get confused about dates/times of appointments. Lately she has been having hallucinations, which is part of the disease - Lewy Body disease. My heart breaks when she tells me about them or asks if I was in her room that night. Right now she's not getting aggitated by them so she's okay otherwise, I've been instructed to take her to the hospital. Most of the hallucinations are upon waking.
There is nothing that you can do about the situation other than to continue to be supportive and do what you can do to make/keep her comfortable. emoticon

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SOPHIEDO13 2/9/2013 5:16PM

    My Mother was diagnosed with dementia 3 to 4 years before she died. She didn't have the drinking problem, but she would kid about going out for drinks (never drank at all), so we would have to tell the Doctors it was just her humor. But she had a problem with her heart where blood clots could form (I can't remember the name of it now), she took meds for this. But she had a Stroke, we had Power of Attorney we obtained that when we first learned of this and it had Medical POA after her 1st stroke she had another within 3 days, and they told us she would never be responsive again, so we took her off all life saving things and put her in hospice, and she died 7 days later she was 87.5 years old. and we miss her but feel up until the end she had a pretty healthy life and a fairly long one at that. Hope all goes well with your Mother and I hope she doesn't suffer very much. emoticon

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CELIAMINER 2/9/2013 2:11PM

    Nell, how very sad, but thank you for sharing your burden with us. It's very hard to make the decisions you are faced with, and my heart goes out to you.

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ZEEDRA 2/8/2013 9:14AM

    Nell,
You studied the whole situation and made your decision and are comfortable with doing the right thing which most people who really understand the situation agree with.
Now the trick is to not live with it during every waking hour but to live with it only when you're in the midst of it and can do something about it.
All the best now and in the future!

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ABQSUE 2/7/2013 11:31PM

    Thank you for sharing your story. Caretakers of folks with dementia or Alzheimer's have many challenges and often get burned out. Your words will help others who are in a similar place by reminding them they are not alone.
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Comment edited on: 2/7/2013 11:31:43 PM

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--KREN 2/7/2013 11:17AM

    Nell, I'm glad you have her in a good place for this last part of her life. The decisions are hard, but I agree with yours. Not easy but necessary. I've put my wishes in writing and told my sons and DIL many times - If you have to agonize about when it's time to "let me go" then it's time. I have had a good life and am much more concerned about living in agony than I am about leaving this earth.

Karen

Comment edited on: 2/7/2013 11:18:20 AM

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SUZYMOBILE 2/7/2013 9:33AM

    Nell, thank you for sharing this with us so honestly and completely. May I ask: Is your mom living with you (which would make things all the more difficult)?

The DNR decision is hard enough, but I understand how much harder it is to live or deal with someone with active alcoholism, oncoming dementia, and the complication of Korsakoff's. My ex-FIL had Korsakoff's, and disease it may be, but the anger that a self-induced disease generates in us can also be debilitating to US. Please take care of yourself above all. I've recently been advised by some of my best SparkFriends to look into Al-Anon. They provide an excellent source of strength, support, and ideas about how best to take care of YOURSELF first in situations like this one.

You're such a strong woman, I know you'll find strength and comfort to keep you going through this. My prayers are with you!

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NASFKAB 2/7/2013 4:42AM

  so hard & sad for you all the best

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LIBBYL1 2/6/2013 10:54PM

  So so hard and sad for you. Makes me remember that I must sign that living will that my 86 year old mother has indicating that she does not want to be resuscitated or have any major medical interventions to keep her alive makes it so much easier for everyone that loves someone to have the decision taken so clearly by the person affected. If it is any solace, my mother (who of course has short term memory loss but otherwise is incredibly healthy and strong) worked in hospitals for years as a physio and had a heart attack that she survived 26 years ago. She says often that we must all know that when she realised she was having a heart attack there was initial panic but while waiting for the ambulance incredible peace. She says she knows it is not a horrible way to die now - and although she says while she knows it is selfish as none of us would have had time to really say goodbye, she hopes that that is the way she dies eventually. Her telling us this doesn't feel selfish at all - and I really really hope that her wish comes true rather than her spending weeks, months, years in pain in a bed or unable to really really live the life she loves.

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CARRAND 2/6/2013 9:13PM

    I'm so sorry to hear about your mother. It's hard to let go.
My 99 year old father was put on "hospice" status at the VA home recently. His kidneys are failing, but obviously they are not talking about dialysis or transplant. They are just keeping him as comfortable as possible. He has short term memory loss, and is easily confused, but remains pretty cheerful and is as sweet as ever.

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ANGIEN9 2/6/2013 8:57PM

    Thinking of you!! emoticon I know your decision about the DNR will be difficult, but it will spare her pain at the end. If you make the decision with your siblings, it will be easier now then later. Sorry to talk matter of factly...just trying to help. My Dad had cancer and dementia and we didn't know he had dementia until the week before he died. My stepmom didn't tell us. We didn't know how bad he was. I know it isn't easy, but I will be praying for you and your family. emoticon

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GABY1948 2/6/2013 8:51PM

    Nell, I'm so sorry. My heart truly goes out to you. My mother died in06 of Alzheimer's Disease as did her mother in 86 before her. Old age in such circumstances is certainly not pleasant for the surviving children. I had the same decision (DNR) and I made it because I knew her wishes from her taking care of her mother, but I also knew what my own wishes would be. It's not a death sentence for her...it just doesn't allow unusual measures to be taken to bring her back in the event it is needed.

Again, I am so sorry and will be praying for your family!

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FIT4MEIN2013 2/6/2013 8:32PM

    emoticon

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MAIZEY 2/6/2013 8:31PM

    So sorry for you and your family in getting such terrible diagnoses. I hope you have some supports to help meet her needs. I hope this isn't too personal, but I work in the long term care field and have directed my family that I will want do not resuscitate orders if I have dementia or a terminal illness. This doesn't mean you don't get good medical care or daily care, jut no heroic efforts.

Take care of yourself and be gentle with yourself on the choices you make in such difficult circumstances.

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POINDEXTRA 2/6/2013 8:02PM

    Wow. My heart goes ou to you.

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