RSS Feed Print
Let's Create a Dementia Village for EO families
Lonna
Posted: Thursday, September 26, 2013 3:02 PM
Joined: 5/12/2013
Posts: 75


I seriously think we could get this to work in many parts of the country. Thoughts? What can we do as caregivers, supporters and victims to make this happen in the next five years?

 

http://www.youtube.com/watch?v=LwiOBlyWpko


John50
Posted: Sunday, November 3, 2013 9:57 PM
Joined: 3/14/2012
Posts: 140


Hi Lonna,

I am diagnosed and you don't have a clue how many of us that are early onset have talked about this type of thing and how much we wish it was done in this country. We have talked about all the positive things we learn going on around the world and wonder why the supposed richest, most powerful country in the world is so far behind on so much with dementia and caring for those with the disease. It is slow changing perspectives and attitudes. It is very frustrating, I salute you for throwing the idea out there but it is discouraging just to see that no one has even replied. When I first found out about this community it really excited me but unfortunately the US is all about profit and there isn't a lot of profit in doing things like this. If quality of life for people was as important as corporate profits it would already be done but unfortunately I am not holding my breath about this idea going widespread in this country.


Mimi S.
Posted: Sunday, November 3, 2013 10:48 PM
Joined: 11/29/2011
Posts: 7027


Maybe we need to get a talk show host or some other well known person (maria Shriver? to take it on.

If I recall correctly, the claim is it costs no more than a regular place.


Lisa428
Posted: Monday, November 4, 2013 11:06 AM
Joined: 12/5/2011
Posts: 795


What about Oprah's network???

 

 

 

 

 

 

Peace and Hope,

Lisa


Jo C.
Posted: Monday, November 4, 2013 12:02 PM
Joined: 12/9/2011
Posts: 13462


Isn't that just the most beautiful concept and so right for so many reasons.  I have seen this several times now, and it never fails to bring tears to my eyes as I feel the management's and staff's compassion and valuing of humanity very deeply. 

However; as we watch the film, the director speaks to how they are funded.  They are in the Netherlands; the government pays for ALL of it.  The residents pay nothing.  The village gets a fixed amount of money per year, the same as all other residential homes or nursing homes. 

 

The woman and others who together conceived of this and carried it to fruition and continue to see to it and their charges, are nothing less than saints in my eyes.

 

On that note, it must also be said that taxation in the Netherlands is extremely high; that is how they fund  their healthcare and eldercare, etc.

 

Here, we would have no ability to build and run such a place; much less one that is to that degree of quality which is nothing short of amazing -  AND if someone did build something similar, it would be extremely high end private pay and not accessible to many who could benefit so much.

 

The costs of running such a place would be horrendous.  Staff outnumbers the residents several to one.

 

I would love nothing better than having this concept become a reality, what a dream that would be.

 

It was also interesting to hear that folks with mild dementia could not become residents, the residents must have a severe dementia to be admitted.  Their long term goal there, if they could get additional funding, would be for the spouses of the residents to live there too, but at this time, there is not sufficient funding to absorb such costs.

 

It is always good to dream, sometimes dreams do come true.

 

Jo


bluestarmom
Posted: Monday, November 4, 2013 6:44 PM
Joined: 11/4/2013
Posts: 2


I just joined alzconnected an hour or so ago.  I am so lost. I jump into this discussion because it is the most exciting idea. Where do we start?  Seriously. Grants?
Mimi S.
Posted: Monday, November 4, 2013 7:11 PM
Joined: 11/29/2011
Posts: 7027


Hi Bluestarmom.

 

Welcome to our world.

 

I did read your profile and in my opinion, your immediate job is to get yourself stabilized.


Do you have a good medical facility for dementia in Urbana? (I have 3 UI grads in the family.)  if you have to go to Chicago for some good doctors while your meds are being adjusted that should be OK. Once you get stabilized one usually sees the neurologist twice a year.

 

You do need to figure out what and how you can tolerate the meds. At this point you are declining at a certain rate. Proper meds can slow this down. And you can't recover what you are losing each day you are not on the meds. I know this sounds like tough Love.  It is.

Next, get involve in Best Practices.

1.Take meds as directed. [I went on a lactose free diet and it helped with the FGI problems of Aricept. Some people take it in the morning if they experience sleep disturbances.]

2. Strenuous physical exercise. You want to get that heart pumping. You said you were a gym rat but don't feel like it. That's natural, but you have to fight. 

3. Strenuous mental exercise. Urbana is a great place to find different things to do that involve using your brain.

4. Mediterranean diet. I also take antioxidants and Omega 3. No smoking. Limited alcohol. Some red wine or grape juice is excellent.

5. Keep up with or increase your social life. Most of us don't do noisy crowds well

.

Do get involved with your local Alz. Chapter.

Get your life under control and then come back and dream with us.

 


Iris L.
Posted: Monday, November 4, 2013 9:50 PM
Joined: 12/15/2011
Posts: 18342


Welcome to our online support group, bluestarmom.  I'm sorry you have to be here, but this is a great place to be given the circumstances.

I've been on Exelon patch and Namenda for four and a half years.  They have helped me a great deal.  I also follow Best Practices and I used PositScience to stimulate my brain at the adult school.

There was a post about a YOAD support group at Rush Medical Center in or near Chicago.  I searched but couldn't find it.  I'll keep checking, but if you search a few of the recent threads you may find it.  It would be great to attend an in-person support group.

Keep posting, and keep us updated as to how you are doing.

Iris L.

Lonna
Posted: Tuesday, November 5, 2013 8:48 AM
Joined: 5/12/2013
Posts: 75


Im working on this, everyone. Call it my life's work, but I will get this village built. And I'm very, very serious. The only caveat: It'll be in Moorhead, MN. Brrrr!