BlogHer - alzheimers - Comments

Yeah she was always paranoid..

Crunchy Carpets — Sun, 07 Sep 2008 22:29:43 -0500

and the dementia has made it worse and she will carry a grudge like NOBODY'S business...THAT she can remember.

She just also refuses to look after herself...which is why she ended up in care in the first place.

So the dementia has made her old traits worse...maybe that is how it works...

Nobody was sure she had dementia as she has acted 'flakey' for as long as I knew her.

It wasn't until her daughter was ill and then died that I had to lay it out for her..that if she couldn't feed or take care of herself we would have to put her in a home..(I have small kids - was not going to take her on)....

I don't think she really realized it all till we had her assessed.

So she has gotten even more stubborn and more distrustful and we are all out to get her...very tough.

And thanks about the pic!!

hehe underwear..youz doin it wrong!

Look for me at http://crunchycarpets.com or check out the ladies at www.wetcoastwomen.com

So Glad You're Here

midlifemuse — Sun, 07 Sep 2008 21:51:00 -0500

Laurie--

I'm so glad you're in this discussion thread bringing much-needed advice and valuable resources. How to communicate with dementia patients could--and maybe--should be it's own lengthy discussion.

Karen

Visit me at Midlife's A Trip.

Visit Caring.com

midlifemuse — Sun, 07 Sep 2008 21:41:46 -0500

NurseBarb--

Thanks for the heads up on Caring.com. Just stopped over there and found an amazing wealth of info that caregivers can use. Will add this to my blogroll. Looking forward to your feedback on the podcast.

Karen

Visit me at Midlife's A Trip.

Thanks for Your Acknowledgement

midlifemuse — Sun, 07 Sep 2008 21:30:05 -0500

You know, I often find myself writing things in my blog posts that I haven't said out loud. It's helped me find my voice. So thanks for acknowledging my comment about my mother. I haven't really shared that with anyone and now I shared it with the world. Go figure.

Thank you Comfort Keeper for the much-needed, often under-appreciated work you do to help care for Alzheimer's and dementia patients. It's God's work.

Karen

Visit me at Midlife's A Trip.

Caregiver Are Everyday Heroes

midlifemuse — Sun, 07 Sep 2008 21:23:23 -0500

Cynthia--

I know what you mean about that worrying. Recently my daughter-in-law said that if I was ever not able to care for myself, she and my son would step in. It was oddly reassuring but who wants to be a burden. So like you, I take fish oil and try to keep my brain really active.

People like the family you mention are truly everyday heroes as they step in to do the "heavy lifting"--the day to day caregiving of aging parents. That's how I feel about Mary Ellen and others like her.

Thanks for your insights.

Karen

Visit me at Midlife's A Trip.

Dementia Behavior

midlifemuse — Sun, 07 Sep 2008 21:09:54 -0500

Wow. I'm so glad you mentioned the behavior issues with your husband's grandmother. Do you think it's more personality changes from the dementia than her just being stubborn? It's something I don't usually talk about but we've seen the same thing with my mom. I hate to admit it, but she can be incredibly difficult. And she can remember more negative stuff than anyone I know. Somehow the dementia took away more good memories than bad. I really wish she could be more at peace at this point.

BTW--love the nap picture and no I don't think your daughter will hate you :-)

Karen

Visit me at Midlife's A Trip.

Thanks for your wisdom

midlifemuse — Sun, 07 Sep 2008 21:02:05 -0500

Laurie-

I'm printing your comment and making a copy for both my sister and me to post on refrigerators (we're big on using that white space for important reminders). Your advice is something we need to remember - and remember again. Doesn't all this make you wonder how our society is going to cope as millions of Baby Boomers move into the wicked grip of dementia?

Karen

Visit me at Midlife's A Trip.

Solidarity is such a gift!

midlifemuse — Sun, 07 Sep 2008 20:51:32 -0500

Fee--

You are so right that in dealing with someone with dementia, you have to focus on the positive. The negatives of dementia and Alzheimer's can drag you down. When my mom first went into assisted living and I would visit, I'd sit in the car and cry afterwards. And with the stats you just shared about the coming impact of dementia, I feel like crying right now. It's like a tsunami.

But back to the positive--I'm so glad you wrote. Hugs back from Michigan!

Karen

Visit me at Midlife's A Trip.

How Do We Lose the Guilt?

midlifemuse — Sun, 07 Sep 2008 20:41:59 -0500

One of the toughest parts of having a loved one with dementia is that you always feel guilty about taking the next step for their care. Don't. Just trust, Jupitersinclair, that what you do will be the right thing. And just for the record--I'm still learning to do that.

Karen

Visit me at Midlife's A Trip.

Check with the local chapter of the Alzheimer's Association.

lauriewrites — Sun, 07 Sep 2008 20:06:25 -0500

Click on the map on their site to find it. They're a national nonprofit organization and check out really well on the charity checklists since the bulk of their money goes to research and advocacy/education.

They have a ton of material on the national site and in their local offices for caregivers. Dealing with this disease is really difficult and it can be terribly isolating. The behaviors are so unusual and people can stay physically strong for so long that it often really helped people I worked with to understand what was happening with their relative - Alzheimer's as a neurological disease rather than a random set of behaviors from a person who can't really communicate like they used to or "get with the program."

The chapters can also hook you up with support groups (even some for folks in early stages), care managers, financial and legal information - you name it - and most of their services are free or at reduced cost. A lot of my work with caregivers dealt with communication - ie, what to say when they ask questions, reducing arguing, going along with memory lapses that just weren't that important (like is it really necessary to correct them if they think it's 1984? No, not so much...not if it keeps things calm and stable.) Of course this is much more difficult when it's someone close to you, but it can be done - I've learned to do it with my grandma, which was very hard.

Millions of us will handle this disease in ourselves or a relative in a lifetime and it's a good idea to reach out for support.

Laurie

LaurieWrites

Check with the local chapter of the Alzheimer's Association.

lauriewrites — Sun, 07 Sep 2008 20:06:23 -0500

Millions of us will handle this disease in ourselves or a relative in a lifetime and it's a good idea to reach out for support.

Laurie

LaurieWrites

It's tough.

lauriewrites — Sun, 07 Sep 2008 19:55:39 -0500

Guilt is usually a part of this picture somehow. My grandma helped to raise me and I felt bad because I didn't move in and help her when she had a stroke, but the reality is that caring for a grown person with a progressive illness is much different - and arguably more difficult - than caring for a child (as challenging as that can be.) Most of us can't do it with the physical, financial and emotional resources we have.

I was a social worker for the Alzheimer's Association for several years
and saw many caregivers get sick and a few die before their person because it's a tough, stressful, full-time job. People can only do what they can do...and usually that means getting help whether it's home care or adult day care or a facility. It's not a failure. It's doing what you can in a really difficult situation. I feel for you - I've walked the road myself and I wish you peace with the outcome.

Laurie

LaurieWrites

Another great resource

NurseBarb — Sun, 07 Sep 2008 19:15:27 -0500

Thanks for a great post on a sensitive and difficult topic. I've found that families don't know where to turn to for help. I'm going to make time for the podcast.

I've been recommending a great resource to my patients and their families. www.Caring.com.

It helps families connect with and find all types of resources for their elderly family members and is especially helpful for people with Alzheimers.

Be well,

NurseBarb

www.NurseBarb.com

thank you

comfortkeeper — Sun, 07 Sep 2008 16:44:03 -0500

Thank you for you post. Alzheimers is a progressive illness that is very difficult for everyone to deal with on every level. I appreciate the way you said that you got to the point where you did not remember what mom was like. So often many caregivers cannot or will not express that. They feel guilty saying it as if somehow they should be responsible for the illness and often feeling powerless losing someone they love into the cave as you described. Yes, the services for Alzheimers clients are very very expensive as most of the care is assisted living or non-medical type services and those services are not covered by Medicare. Most individuals have to pay out of pocket to care for a loved one. Thank you for sharing.

Comfort Keeper

www.comfortkeepers.com -provider of in-home services for those suffering from the disease of Alzheimers and/or dementia.

HEROIC CAREGIVERS

Csamuels — Sun, 07 Sep 2008 15:24:47 -0500

Thisis a moving and timely pos Karen . As a boomer I worry all the time and follow all the prophylactic suggestions and am a long-time consumer of fish oil, etc. It's so scary.

The story you tell is a remarkable one. It's one thing to praise the commitment and I think heroism of someone like Geist, but it's much more than a convetional heroic act. This isn't just jumping in front of a car to push a kid to safety. This is all day, every day, for a very long time.

I just met an amazing family. They haven't been married long, and had a baby less than a year ago. But her dad isn't well so he lives with them. That meant they needed a bigger and therefore more expensive house which meant they had to live farther from the institutions that support their daily lives. They seem to have decided it together and are pretty matter-of-fact about it. It's so damned impressive - and inspiring. I can't stop thinking abou them.

Cynthia Samuels, Partner
Cobblestone Associates, LLP
Blog and Media Strategies and Content Development Online and on Television

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