Home Safety Checklist
RSS Feed Print
Dilemma on where to live
Myriam
Posted: Sunday, April 1, 2012 12:45 PM
Joined: 12/6/2011
Posts: 3326


I have a dilemma and would appreciate your thoughts. I live alone and am moving from a somewhat rural community to the city of Seattle. The main reasons for my move are the transportation system, I have friends there,  and there is so much more to do (theater, museums, dancing, attractions, etc.). I looked into senior apartment buildings, but my income is either too high to qualify for some, or to little to afford the others. 

  

So it looks like my only choices are a regular apartment or a residential community with memory care. Again, I do not qualify financially for most of the residential communities, but I am speaking with a housing counselor tomorrow to get more information on what is available for me. 

  

My dilemma is I am only between stages 2 and 3 (and hope to be there for a while) and don't believe I will be comfortable in a memory care community. Also, because all meals are provided, the monthly payments are high leaving me with little for discretionary spending and medical costs, and believe I will feel housebound. 

  

I'm leaning towards getting an apartment and using tools for reminders, such as a pill box with an alarm and other systems I can devise (so far I have not had problems remembering to take my meds, missing appointments, getting disoriented, etc.) 

  

The other problem is I have a cocker spaniel (Joe Cocker) whom I love and will not give up, so that also limits my choices. 

Mimi S.
Posted: Sunday, April 1, 2012 4:18 PM
Joined: 11/29/2011
Posts: 7027


Myriam,


I'm very fuzzy on stages. Would some consider you MCI?


Meeting with a housing councelor is a great idea.


In Seattle, there should be Continuing Care Communities. You do not want the ones that require thousands of dollars pre-payment.


Look for some that have Independent, Assisted and Dementia at the same site. The one I have chosen for myself has this. That way, you would probably enter as Independent. When managing meds, even with the pill sorters you speak of, become too difficult, you could just get that, for a price. The one I want provides one meal a day for Independents. There are probably are some where you can opt out of that. It is a way of ensuring socialization.


Here is what a relative in the business wrote for me when I was looking:

 http://alzheimers.infopop.cc/eve/forums/a/tpc/f/375102261/m/293306053

 

The place I chose has many group trips to the type of cultural opportunities you mention. They probably benefit from getting a larger number of tickets and there is a bus that takes the group there. 

 

The advantage I see that as you decline (hopefully years from now) you won't have to move. You will be gradually assimilated into the Assisted Living phase.

 

I think if I were planning a move, that's the route I'd take.


Geegee
Posted: Sunday, April 1, 2012 6:54 PM
Joined: 11/29/2011
Posts: 514


Mimi, that sounds like a wonderful solution for Myriam.  Does your facility allow pets at the Independent stage?


Myriam, I guess the only deal breaker could be if you can't find a Continuing Care Community that will take Joe.  I know how you feel about a perfect companion like that.  


If I need a place, that would be the best solution for me.  Good luck finding a place where you and Joe will be welcome!






Myriam
Posted: Sunday, April 1, 2012 8:44 PM
Joined: 12/6/2011
Posts: 3326


Thanks Mimi and GeeGee. I'll let you know what the housing counselor says. Yes, Mimi at this time I only have MCI. I diagnosed myself and sought help. Am very involved in my community and very open about my diagnosis. Often get comments on how I don't show any signs of AD.  
Mimi S.
Posted: Sunday, April 1, 2012 10:00 PM
Joined: 11/29/2011
Posts: 7027


Myriam,


Please get yourself a valid diagnosis. 


Have you read The Alzheimer's Action Plan by Doraiswamy and Gwyther.


Suppose you have one of the conditions that mimics dementia but is not?


Suppose you do not have Alzheimer's, but another dementia!


Yes, you might have MCI or Early Stage AD, but please make sure!


Iris L.
Posted: Monday, April 2, 2012 1:28 AM
Joined: 12/15/2011
Posts: 18333


Myriam wrote:
  I diagnosed myself and sought help.
Myriam, you know we won't let you get away with this!  All the time we urge patients and concerned family members to get a THOROUGH EVALUATION from a neurologist who regularly diagnoses and treats dementia patients.  Anyway, I thought you already did have an evaluation.  Who did your genetic testing?
I'm in the same boat as you.  I have to figure where to live too.
Iris L. 


Myriam
Posted: Monday, April 2, 2012 1:46 AM
Joined: 12/6/2011
Posts: 3326


Mimi and Iris, what I meant to say was I experienced my first sign of AD when I came to a 4 way stop near my home and didn't know whether to turn left, right, or go straight. Because AD runs in my family (my father, 7 of his siblings, and a couple of older cousins). So within a few days I saw a neurologist and underwent a whole battery of tests. Nothing was found. I scored in the 98th percentile regarding memory. 8 months later, I had another incident, went back to the neurologist and told him I knew I had AD. The only option left was DNA testing, and it found I had the presinilin 1 gene. The neurologist agreed to put me on Aricept (later changed to Exelon) and Namenda even before the DNA test results came back. So it was a REALLY early diagnosis.
Mimi S.
Posted: Monday, April 2, 2012 8:35 AM
Joined: 11/29/2011
Posts: 7027


Myriam, You still haven't convinced me.

 

And part of the problem may be with the expertise of the person doing the examination.

 

You obviously are way up there on the IQ scale. So you can actually lose a lot and still be way above average.  That's also Iris's problem. 

 

Did you receive a copy of the results? What were your strengths and weaknesses? For example, did you do block designs? How did you do on that?  Nothing related to memory on that?

 

Did you do any other drawings or non memory related tasks? 

 

And I do agree that the situation while you were driving was a big red flag. Are you still driving?

 

Did you have the Pittsburg PET scan or the spinal tap test? 

Another point. In my opinion drawing the line between MCI and AD is an art. What one may call MCI another calls AD.  For example, from one definition I have heard of the distinction between MCI and AD, you and I both have MCI because we are both OK still living alone. Iris admits she has trouble, only uses the microwave, so that would put her at AD. 

 

The person who does my neuro and I have had this discussion. He points to the M in MCI and says: Mild Cognitive Loss!. He says mine was not a mild but a major cognitive loss.

 

Discussion anone?


Myriam
Posted: Monday, April 2, 2012 11:42 AM
Joined: 12/6/2011
Posts: 3326


Mimi S. wrote:

And part of the problem may be with the expertise of the person doing the examination.

 

Did you do any other drawings or non memory related tasks? 

 

Did you have the Pittsburg PET scan or the spinal tap test? 

 

Another point. In my opinion drawing the line between MCI and AD is an art. What one may call MCI another calls AD. 

 

 
 
Yes, I had the Pittsburg PET scan and the spinal tap test. I'm also involved in 3 research studies, including DIAN (Dominantly Inherited Alzheimer's Network). I'm tested once a year by two of the studies. In the DIAN study, AD Researcher Dr. John Ringman at the UCLA Ronald Reagan Center conducted the tests last June and told me I had MCI. I will see him again this June and undergo another 3-4 days of tests. I expect he will find a decline from stage 2 to 3, but will let you know when I return from Los Angeles.

Mimi S.
Posted: Monday, April 2, 2012 1:46 PM
Joined: 11/29/2011
Posts: 7027


So were you told the specific results of the PET and the spinal tap? Those two are supposed to show indications long before behavior is evident.
Myriam
Posted: Monday, April 2, 2012 4:18 PM
Joined: 12/6/2011
Posts: 3326


Mimi S. wrote:
So were you told the specific results of the PET and the spinal tap? Those two are supposed to show indications long before behavior is evident.
 
No, Mimi, I wasn't given the specific results, but will make sure I get them when I go back in June. Thanks for bringing it to may attention!

Oh, by the way, I'm meeting with a Senior Housing and Care Advisor on Thursday about finding a place to live where I'll feel comfortable. 

Iris L.
Posted: Monday, April 2, 2012 5:38 PM
Joined: 12/15/2011
Posts: 18333


Myriam, are you still driving?  If not, do you have a disabled transportation card so you can use Dial-A-Ride or Access in your area?  You are allowed to bring a companion along if you need someone with you.  Disabled transportation is for people who cannot function with regular public transportation.  Tell them that you will get turned around and lost on public transportation and you need transport to your doctors appointments and other places. 

 

As far as housing, look for a place that is close to your medical care.  As you progress, you won't be availing yourself of museums, and the highlights of city life. 

 

Yesterday, for the first time in over 25 years, I rode Metro Rail to the Convention Center.  I had to look up the schedule online, and figure out where to go.  I had trouble with the vending machine that they use for ticketing, but I figured it out by myself.   

 

Also look for a place where grocery shopping and small shops are close by.  Preferably in walking distance.  I have a supermarket, post office, drug store, big box store, laundromat,  bank, restaurant, and other small shops and a park within three blocks of my home.  I could function here without a car for my daily needs as long as I can walk three long blocks. 

 

While you are still ambulatory and independent, access to transportation will be a major factor.  When you become house-bound, you will need someone to drive you places.  Then it won't matter where you live so much because you will be driven around. 

 

Iris L. 


Myriam
Posted: Tuesday, April 3, 2012 12:01 AM
Joined: 12/6/2011
Posts: 3326


Thanks you, Iris.
 
× Close Menu