Thursday, February 07, 2008

171 I need your help!

I would like to develop some kind of flyer, a PDF for downloading, about things to say and do when someone you know has Alzheimer's. How to treat the afflicted person, how to talk to the family, etc.
So send me your suggestions, anything you can think of, however obvious it might seem to you.
If you want to be credited, tell me how. I have no problem with putting links to your (relevant) blog or website. This will be free--I don't plan on making money from it in any way (although I will plug the Unforgettable Fund of course).
Comment on THIS post or email directly to me (geverabert at yahoo dot com).
I just feel like I have to do something. I'll collect ideas for a few weeks and then put it together.
Thank you.

7 comments:

Patty McNally Doherty said...

What a great idea, Bert. I have many, many things I would like to put on your list. I think there are as many good ideas as there are people with this disease.

WHAT TO SAY OR DO WHEN SOMEONE HAS ALZHEIMER'S.

1. Be brave always. It takes a lot of courage to support someone through this disease.

2. Be honest. Don't pretend to be what you're not. If you can't handle it yourself, ask and INSIST UPON getting help. And don't be polite about it - you'll sink like a stone if you don't put on your swimmies. GET HELP.

3. Be patient. It's a long haul of a disease.

4. Be understanding. You will never unravel the mind of a demented Alzheimer's loved in. Instead use your OWN memory to recall their qualities.

5. Be agreeable. Don't argue, you can't win. Insteand, agree agree agree. Yes, you want to take a walk. Yes, it's the middle of the night. Yes, we'll have a snack instead. Yes, this is perfect. Yes, you can sleep with your shoes on. Yes, you're exactly right about this. Yes, I love you, too.

6. Speak respectfully. These are grown adults, who have lead long, challenging lives. They are NOT children, they are NOT idiots, they are NOT to be spoken to like children, they are not to be spoken to like idiots.

7. Don't yell. Just because someone can't understand you doesn't mean they're deaf.

8. Touch, hug, hold hands, pat, rub, kiss. Touch again, hug again, hold hands again, pat again, rub again, kiss again. Repeat often. Again and again and again.

9. Smile. Laugh. Smile. Laugh. Be the light that walks into a dark room. Be the smile that eases anxiety. Be the cause of laughter.

10. This is NOT your disease. You can breathe and run and plan and remember. Stay attached to the world around you.

11. There is nothing shameful about this disease. And anyone who doesn't get that cannot serve as a swimmie. You'll sink if you lean on someone who has no buoyancy.

12. Resentment will eat you alive if you have siblings that don't care. Release them. You have enough to carry right now without the added weight of "he was mom's favorite and he doesn't even return my calls". Let it go for now. It's a weight, that's all. Deal with it later, for now, if you're going to stay above water, you have got to kick off the old, smelly, waterlogged, boots. Let it go. Kick your feet. SWIM! You can do this!

13. Stay sober. I mention this because it's a really easy time to self-medicate. This disease hurts a lot. But you stand a better chance of actually helping if you're actually standing.

14. Be proud of what you're doing. There is no higher standard to hold oneself to than this - honor your parents.

15. Love never fails. This disease will show you what you're made of. And if you're anything like me, you'll be surprised how inadequate, incompetent and unqualified you'll feel. No one walks into this willingly. Not the person with Alzheimer's, not the spouse who survives, not the kids who find themselves shoved into the role of parental advocate. We're all attached and we ALL go into the drink when Alzheimer's pushes someone in. The stronger the tie, the more certainly I can say, you're going off the deep end. There are no landmarks, there are no buoys, just lots and lots of water - in the middle of the living room! In the heart of our homes, we're submerged!

It takes time to learn to swim in this water. Five million people have Alzheimer's, and figure most of them are attached to at least one other person. THAT'S TEN MILLION PEOPLE!!! One minute you're on dry land, the next minute you're really wishing you had built a boat.

16. Help the boat builders. Fund Alzheimer's research. Find scientists who are doing Alzheimer's research and get as much money DIRECTLY to them as you can. I started The Unforgettable Fund to do just that. After I washed ashore when my father died, I looked back at the ocean I swam in for eleven years and said - THESE PEOPLE NEED FRIGGIN' BOATS!

17. Do what Bert, and Mike, and Mona, and Gail Rae, and Deb, and Jewbu, and so many others do - tell the tale. Keep telling the tale. Keep spreading the word. Keep talking. Keep shouting. Keep remembering.

That's it for this morning. Please take what you can use, and leave what you can't.

Great idea, Bert.

Love,
Patty

Elisabeth said...

I googled on alzheimer and came to your blog.. my english is not so good, but i just wanted to tell you that i wisit your blog a lot now!
I come from Sweden, and my husband has Alzheimer`s! He is 51 yers old, and i am 47.
It´s really hard... but i have tried to give him all my help, support, and love, for this 2 yers, but now he is waiting for a place on a home for younger people with Alzheimer´s.
Our daughter is 16, and she is very hurt... and struggle with her feelings against her fathers sickness every day!

You have a very warm and nice blog...

Elisabeth

karen said...

hi, I also stumbled across this blog doing some research.

I have just developed a line of puzzles - that meet the needs of Alzheimer's and other memory loss diseases. I did a lot of research and discovered that the puzzles that are on the market don't meet all the needs of Alzheimer's.

>For instance, very few storytelling themes to encourage conversation.

>If they found a puzzle that had just a few, large pieces, most likely it was a childs puzzle. . .they aren't children.

>Adult themed puzzles had too many pieces and were too difficult, patients become easily frustrated.

Our puzzles have themes of Norman Rockwell - The Saturday Evening Post Covers -

>Feedback - the activity directors love them and say Norman Rockwell themes make it easy to engage the residents in conversation.

>The lap size puzzles are great for laps or bedside tables, light, easy to hold.

>Few large pieces for easy handling.

>Our final puzzles are a 6 pc for middle stages of Alzheimer's and 12 pc for the early stages. They are wonderful for all ages and a timeless piece of art, that many of the patients can relate to.

I have a 1-webPage up (informational), the full site should be up within a week or so, with shopping cart. If you could put this notice in your newsletter, I would appreciate it.

Sincerely,

Karen Miller
karen@memoryjoggingpuzzles.com

puzzles said...

hi, I also stumbled across this blog doing some research.

I have just developed a line of puzzles that meet the needs of Alzheimer's and other memory loss diseases. I did a lot of research and discovered that the puzzles that are on the market don't meet all the needs of Alzheimer's.

>For instance, very few storytelling themes to encourage conversation.

>If they found a puzzle that had just a few, large pieces, most likely it was a childs puzzle. . .they aren't children.

>Adult themed puzzles had too many pieces and were too difficult, patients become easily frustrated.

Our puzzles have themes of Norman Rockwell - The Saturday Evening Post Covers -

>Feedback - the activity directors love them and say Norman Rockwell themes make it easy to engage the residents in conversation.

>The lap size puzzles are great for laps or bedside tables, light, easy to hold.

>Few large pieces for easy handling.

>Our final puzzles are a 6 pc for middle stages of Alzheimer's and 12 pc for the early stages. They are wonderful for all ages and a timeless piece of art, that many of the patients can relate to.

I have a 1-webPage up (informational), the full site should be up within a week or so, with shopping cart. If you could put this notice in your newsletter, I would appreciate it.

Sincerely,

Karen Miller
karen@memoryjoggingpuzzles.com

Paula from Caring said...

Hi--I really enjoy your blog & you've received some great answers. I edit the Alzheimer's/Dementia section for a new website on caring for aging parents called Caring.com. There's an article up there on communicating with parents who have early dementia that might be of use: http://www.caring.com/articles/how-to-communicate-better-when-your-parent-has-early-stage-alzheimers-or-dementia
Best,
Paula Spencer, Caring.com

Mauigirl said...

Patty's list is great - I agree completely. My father-in-law refused to get help (we've been trying to get him to have someone come in to help with my mother-in-law for a year now) and then he got sick and she had to go into a nursing home temporarily. Now he admits he needs help. I just hope it isn't so far gone that it's too late for her to continue to live at home. We shall see.

Number 5 is very good advice - my mother-in-law no longer makes any sense when she talks but my father-in-law sometimes still tells her he doesn't know what she's talking about. That just makes her feel bad. I always make a point of agreeing with whatever she says and making a comment back that fits in with her words. She seems to appreciate that - I'm not sure she knows what we say any more than we know what she says but at least it's a form of communication.

As for other advice for people whose family member gets Alzheimer's - beyond the caring for them part, diagnosis is important. Here are my suggestions:

1) When symptoms start, go to a neurologist for evaluation - before the person is so far down the road that they can't even be properly evaluated (my mother-in-law didn't get evaluated until she was so bad that she couldn't lie still for a CT scan or MRI).

2) Plan ahead! Once the person diagnosed, consult an eldercare attorney to understand all of the financial implications for the person's future care, and what services are available to care for the person.

3) Not only don't be afraid to ask for help, but don't be shy - participate in a support group of some sort to understand what other people go through with this disease and how to manage things better.

4) And always, always make time for yourself away from the patient. It isn't cruel, you need the time to regain your strength and patience.

Hope that is helpful. Thanks for doing this, Bert - it can be an excellent resource for people facing this terrible disease.

Marvel said...

Nice idea Bert and I'd like to contribute. Please check out this link: http://www.squidoo.com/alz . I have written an article about medications that you may use with proper credit. Or just add a link. Let me know if there is anything else I can do to help.