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Advice for a care partner
abeautifulwaytolive
Posted: Sunday, September 6, 2015 12:37 PM
Joined: 8/17/2015
Posts: 86


Hello, my mother has been diagnosed with dementia earlier this year, and I've had a harder time than I'd like to admit with figuring out ways to help her. I figured the best way to find advice is to go directly to the source and ask people who are struggling with this disease what helps and what doesn't.

If you know of anything that really works with you that you would enjoy sharing with me, it would be greatly appreciated.


Mimi S.
Posted: Sunday, September 6, 2015 12:48 PM
Joined: 11/29/2011
Posts: 7035



wow, I'm not good at long response. Search the internet for: Understanding the Dementia Experience. Download ad study.

Go to alz.org keep reading.

Creating Moments of Joy by Jolene Brackey is worth the purchase price.

naomi Feil and her Validation Method is a difficult read, but so important if behavior problems surface.

Unforgiven
Posted: Sunday, September 6, 2015 2:47 PM
Joined: 1/28/2013
Posts: 2647


Teepa Snow's videos are really good too.
Mimi S.
Posted: Sunday, September 6, 2015 3:42 PM
Joined: 11/29/2011
Posts: 7035


Yes, Forgot those Thanks.
The_Sun_Still_Rises
Posted: Sunday, September 6, 2015 4:08 PM
Joined: 7/24/2015
Posts: 3020


Here is a good list of Teepa Snow video links, she also has a book on her website.

Intro https://www.youtube.com/watch?v=Yd7uycTX7mg

Accepting The Challenge: https://www.youtube.com/watch?v=i4pQaZykZls

Making Visits Valuable: https://www.youtube.com/watch?v=gCAAy53cZDQ

Care For The Caregiver: https://www.youtube.com/watch?v=jEFnIFvvQXM

What Is Dementia: https://www.youtube.com/watch?v=t--mkzfHuIE

Activities Matter: https://www.youtube.com/watch?vWheW1MR4Q8

Common Issues: https://www.youtube.com/watch?vWheW1MR4Q8

How To Recognize Pain: https://www.youtube.com/watch?v=-na0bx0KGAo

Hope that helps.






abeautifulwaytolive
Posted: Sunday, September 6, 2015 4:15 PM
Joined: 8/17/2015
Posts: 86


Thanks all so much! It's really great to talk to other pwd and care partners to hear their experiences and helpful ideas, tips, and tricks
The_Sun_Still_Rises
Posted: Sunday, September 6, 2015 4:39 PM
Joined: 7/24/2015
Posts: 3020


I had to think about this for a bit.

Usually the first step is getting her affairs in order. Things like a will, a heath directive, long term care insurance, and getting a power of attorney is a big one.

Next is getting in to see the specialists to see what kind of dementia it is, and to get treatments.

The third step, I would take, is really get to know your mom. What kinds of things does she like. Foods, activities, music, etc. This will help you more later on, but is good to find out now before she can no longer tell you.

The next thing, I would do, is realize that the process of dementia can take many years. Your mom does not suddenly become incompetent. There is little on the subject of helping people retain their functioning...but if you can, see what your mom is struggling with...and rather than taking it away from her, find ways to help cue her to keep doing it. Like, is she having trouble with math? Maybe a calculator. Does she have trouble remembering what order to do things? Then maybe print out step by step instructions.

My daughter and I do that, we work together to come up with solutions that allow me to stay functioning...that way I can do the task as long as I can, AND, when I can no longer do it even with the best cuing we can think up...then I am more than ready to let it go.

In order to help you better help her, it helps to read up on the different functions of the brain that get damaged...they are working memory, executive function...and omgosh, I am so forgetting the rest now (sorry, maybe you can look them up, sorry).

As well, another step is to familiarize yourself with dementia and its progression...you might want to read some books on it. I really liked Dancing With Dementia by Christine Bryden...and the Everything Alzheimer's Book.

If you are really medically geeky (I am) then you might also like Neuropsychology And The Dementias by Siobhan Hart and James Semple and The Myth Of Alzheimer's by Peter Whitehouse.

Once everything is in place and you have a fairly good handle on what to expect in the coming years...then it is good to focus on helping her to socialize. They say that is really important to keep her mind functioning. There is a really good video chat through Dementia Alliance for people with dementia only. The Alz Association MAY have a group in your area, but they also may not which is why I mention the video chat one. The other big key, is to keep her doing all she can as far as function goes...because it really is true, use it or lose it.

Lastly...this is the time to think of helping her check off her bucket list items.

Hope that helps.


abeautifulwaytolive
Posted: Sunday, September 6, 2015 4:58 PM
Joined: 8/17/2015
Posts: 86


Thanks so much! My hopes from this sight are to do exactly that, learn how to best care for my mom, and what works and doesn't work for pwd and care partners alike.

I really like your ideas about putting together lists of things she likes so when she can no longer say what she likes, I can still know! That's so helpful!!!

Thank you so much you guys, it's really great to know that we're not alone


alz+
Posted: Monday, September 7, 2015 9:49 AM
Joined: 9/12/2013
Posts: 3556


Hi and welcome!

I took care of my dad years ago with no books, no internet advice. I was main assistant to my Mother, and we hired a man to shower and shave my Dad.

Not really a one person job so stay open to help available, get used to not being the sole support early, best for both of you.

The only 100% treatment for ALZ is proper care and environment. Means accepting they have brain changes and will speak and act differently, but they do not lose who they are - ever. Even in dying I communicated with my Dad.

Believe your Mom, even if she is speaking metaphorically or poetically. Each person remains themselves, yet brain function changes mean functional changes.

smile often. do not come at the person, slow down time, give her a chance to respond, do not ask "do you remember?" Make her feel safe, wanted, and fill in the rest. Some people are not cut out to be care partners, some can learn, some are naturals. Don't expect people to be ... adept, let people grow into being with your Mom. If they upset her and will not change their behaviors, keep them at bay.

Remember most of what you will be told is based on guessing, fear, and ignorance. You just learn to understand your Mom and she learns to trust you.


abeautifulwaytolive
Posted: Monday, September 7, 2015 2:00 PM
Joined: 8/17/2015
Posts: 86


alz+,

Thank you so much! For the most part, I've just followed my mother's lead with her care. As in, I just kind of do when the need arises. I haven't read a lot of books on it yet (she was just diagnosed earlier this year and I still have a hard time taking it all in).

I'd like to say that I understand her and can meet her needs quite well, but she hides a lot of her struggle. No matter how open she is about her struggles, she wears it well and does the best she can. She's always been a fighter!

All in all, I trust her and she trusts me, and as of now things are going great.

Have a great day