Tuesday, September 28, 2010

Thoughts on Anonymous' Response

Anonymous said...

I think maybe you should adjust your view of "she denies." How about "sadly, she has lost the memory, so for her, it did not happen"

I have been mulling this over since I read it. I am taking a look at my attitude about what is going on in our lives and how I feel about it. I am also trying even harder to be empathetic to what is going on in my mom's world. I aapreciate the remarks, because they have really made me think.

I know this may seem strange to some, but I am still going through the shock and awe of what this disease does and how it has changed and is changing my mom.

Yes- it is sad that she has lost the memory so for her it did not happen. Its more than sad.

It is also puzzling and disturbing to me when these things happen and I am forced to realize, again and again and again that reasoning powers leave the mind of someone with this disease. And so even though they can see a picture of themselves at an event, they can't accept they must have been there.

I'm not upset with my mom that she can't remember. Perhaps using the word "denies" makes it sound accusatory. I can see that.

Everyday I look at my mom and remember all of the wonderful attributes she had. How much I loved talking to her, going out to lunch, playing cards. How I used to go to her when the kids were sick for advice. How we could joke and laugh and have fun together. How she comforted me when I needed comforting.

And now when we talk, I can't help feel the loss. I can't do any of those things with her in the same way. We can still go out for lunch of course, and if Mom had her way we would do so every day.

I had hoped going through pictures would be a good thing. I had hoped it would bring some memories- good memories to the surface and that she would feel good about those times in our lives. But instead she looks at them and sees times she doesn't remember and so she thinks she wasn't included.

She says, "I must not have been invited." Over and over again, even when she herself is in the picture. And that is terribly sad! Who would want to look at pictures of events and feel as if they were left out?

Yes- she denies being a part of the event , even when she herself is in the picture. And it is sad, and scary, and awful, and in a sense amazing tho obviously not in a good way.

I love my mother. And sometimes the woman I see on a daily basis isn't anything like my mother. But I still love my mother.


joypeterson said...

We're ANGRY.
Most often we say we are sad or shocked or disappointed or in awe or heartbroken... or we feel forgotten... but the bottom line is "we're angry!"
The person (mom and/or dad) who thought more of us than anyone else on Earth has forgotten us. The first time they fail to send us a birthday card is traumatic! So we ARE angry. We can dilute that word with paprika and parsley, but it's still boiling—it's still the 2nd phase of grief. Acceptance will sometimes not come before the grave.

joypeterson said...

I apologize for my abruptness. The anger issue is real, and I guess you're learning that; but, for me it transferred to the medical industry which abused and tortured both of my parents. PLEASE do the legal legwork necessary to assume a CARing position for your loved ones, and ADVOCATE LOUDLY for them. Never let "the system" neglect or abuse them, or drag out their suffering. Okay—TRY to never let that happen. If you try, angels can do no better.

Daughter said...

Thank you for your comments Joy. I understand exactly what you are saying about the anger. Don't apologize.

I am trying so hard to do the right things- but how do we know what that is? The medical field at this time give us nothing but a lengthening of the process. There is no cure at this time. And while I understand doing all you can... there comes a point when you will wonder, what is enough and what is too much?

With cancer or other illnesses, the person who has the illness has the final say in treatment. The AD patient doesn't have the final say. A loved one does. And what a burden that is! Especially when you have always gotten mixed messages from the AD patient about what they would want done.

My mom has said whenever there is life, there is hope. But what about quality of life?

Right now, I am trying to take one day at a time. I DO have POA for medical as well as financial matters and will use it when I need to.

Again, thank you for your comments. It is good to connect with others who are either going through or have gone through this. Blessings to you...

joypeterson said...

I have GOBS of hindsight. Let me try to tidy it up: When an AD patient develops congestive heart failure, or other life-threatening condition, it is my feeling that such conditions should not be treated. PAIN, of course, should always be treated. WHEN we treat other conditions in an AD patient, they survive, but the AD goes on, and eventually they become SO immobilized that their hearts & other systems can function for YEARS, because there is no stress. They even appear to stop aging. So if we treat their illnesses, we are just keeping alive a body without a person in it. And we too suffer. "The System" will OFTEN encourage us to use all available treatments. When my mother refused to eat, I asked them to stop forcing her but was told they would not put their nurses thru that kind of stress... ooooh...

My FATHER was "saved" at 85 by an operation for his abdominal aortic aneurysm. Needless to say, his last 2 years were NOT "quality," and his actual death took 4 agonizing months, when the aneurysm would have been so much kinder. In the end, he couldn't even have pain meds because "he might fall." And he DID fall, and fall... I did not have a healthcare POA for him, but I did for Mom--tho by then she'd gone into that live-forever-in-a-shell stage, and I just had to wait for an opportunity to refuse penicillin--took 3 years... (she was in the nursing home 8 AD years)

When friends say, "I miss my parents," I envy them. My parents' final years scarred me permanently. Rarely do I have a "fond memory."

I know all about your burden of final say. Still, I am so glad that it was I who had it and not my brother--he wanted to go with the penicillin in spite of the fact that the nurse said she didn't know where (on that skeleton) she might put a needle. It's not pretty, but you can take pride in your strength. I hope my kids are strong enough to do the right thing for me, "BOOZE & DRUGS!" They've been told!

When your mom said "where there's life there's hope," it was probably before we knew much about AD. We didn't KNOW much about it because most folks died from "natural causes," and AD never got much of a foothold. If she'd known what we know now, maybe her answer would have been different.

well... I wish we could email... I don't know how to share that with you here, but you have most of it, my middle initial is m, and I use ma bell...

Cher said... Reading and thinking.. I've often wondered about all these things that are doing now to prolong our lives..what happens then? People used to die of "old age" between 50 and 70 years of age.. at that time AD wasn't heard of.. Now that we are using science to prolong lives we are seeing new and often worse things happen such as AD... and Cancers..

I've talked with hubby about this alot recently after a close friend died of cancer and a friends parent died of Lukemia and now this...

I would rather live my last days celebrating my life, then feeling worse because of the treatment... or prolonging my life if I'm in a shell and can't crawl out.. yes it will be hard on my family to Loose me... but honestly.. When I could go Home and they rejoice or once every few days they come visit my body with out me in it... i would choose going home. Let them know my mind is at peace and they don't have to see me turn into a person I'm not... or see me suffer..

I hope that makes sense.. I understand what Gma means where there is Life there is hope.. but is it truly life?...

I've seen the suffering of those with AD and it hurts. oh how it hurt.. that's why I quit working the AD unit at the nursing home..

I didn't think back then anything could really bother me more... but a close loved on with it hurts more... Love you so much..

Anonymous said...

Daughter, you know that my Mom has VaD (Vascular Dementia) which, although not the same, can present many of the same "symptoms".

My perspective is a bit different; my Dad died a horrible death from cancer 20 years ago this month. From diagnosis to his funeral was exactly 90 days.

Now, some people may say that it is *better* to have such an aggressive cancer - there is "less" suffering. It doesn't "drag on" like AD.

Well, I disagree. Because, as "terrible" as this is, watching our Mothers slowly fade away... I still prefer it to the slow-motion train wreck that was my dad's last 3 months.

Joy obviously has a lot of anger. That's OK - it's part of the grieving process. When I lost my Dad, my anger became so thick and heavy that I was actually grateful that we didn't have any kids, because I didn't even recognize myself most days.

In due time, it passed, but I didn't like myself at all during that time. I'm still ashamed at how I behaved; even though my grief was very real, I "took it out" on others around me.

The lessons that I learned from Dad's cancer remain as sharp and focused today. I still try to make sure that Mom has the best possible quality of life. I know that I don't succeed 100% every day, but I try.

I make sure every day that I tell her that I love her. I kiss her goodnight, and I hug her. I tell her every day that I am glad she is here with us.

I have chosen to focus on what I *CAN* do for her, rather than on what the disease process is doing *TO* her. It isn't easy - there are times when I have to remind myself of that choice! - but it is my way of "beating the disease".

While we can't change the disease process - we can change how we react to it. We can change how we think about it, and how we present it to those around us.

We can "love them away" to our Father God. It won't be easy - but few things worth doing really are.

And we will have the peace that comes with knowing that we did all that we could for our Mothers.