Saturday, February 9, 2008

What a great idea my friend Bert had. She asked us to list things to say or do when someone has Alzheimer's. She's going to put suggestions together in a pdf so people can download it and print it out. For free. Add your suggestions at her site or add them here and I'll get them to her.

I have many, many things I would like to put on this list. I think there are as many good ideas as there are people with this disease.

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 one. 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.


  1. Patty,

    What a great idea this is!


  2. I agree Mona!

    My name is Kathy, and I am the primary caregiver for my 79 year old Dad who has Alzheimer's disease and lives with me in North Carolina.

    I am writing a daily blog on my Alzheimer's caregiver website that shows the lighter side of caring for someone with dementia.

    I have also added over 100 pages of resources for caregivers that I have gathered over the three years Dad has lived here.

    Please pass this link along to anyone you feel would enjoy or benefit from it.


  3. Really good list!

    I have a subcomment to add, from experience, to number 12...actually, it should probably be added as a subcomment to every number on this list:
    Forgive yourself, every day, every hour, every minute, for not, for instance, being able to give up resentment right now; for failing, every time you perceive that you've failed; for losing strength, every time you feel weak; for sometimes not being able to smile; for sometimes being overwhelmed with treacherous thoughts; for everything you do that you feel isn't quite right. Forgive yourself in arrears; forgive yourself in advance; forgive yourself in the present; forgive, forgive, forgive yourself. Never stop forgiving yourself. Know that, if you are where you are, in the presence of a demented one, doing something, anything, in that person's life, you deserve forgiveness for being overwhelmed, when you are, because you're there!