THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

Feb 19/13  Southwood Group meeting welcomed a few newcomers.  One caregiver has just had her partner placed in long term care over an hour away from their home; first bed available.  If you don't take the bed that is offered, what are the consequences?  Once you have made the decision, how long can you wait?  But over an hour's drive?  Who will visit? The extra strain on already busy families becomes more so - again. 

Another new diagnosis - years to finally come to this.  A certain sense of being grateful, at least someone is now seeing what the caregiver has been seeing for a long time, there is a name to it and rationale for behavior.  So helpful, and not, this road is not an easy one.  This family has children at home so discussion in the group again - how to get the kids here.  Particularly those still in their teens.  We think it would be helpful, have a terrific facilitator but the fact is "my 17 year old son will NOT talk about this". 

Guest at the meeting: Pam Roach from UofC. She attended in the fall and came to give an update.  The resarch is about the effect of dementia on families, priority on early onset and younger familes.  Pam is interviewing families in Calgary, Edmonton and Lethbridge.  She works with families affected by any kind of dementia:  Alz, alcoholiism, etc.    The first meeting with Pam included the partner.  Most of the caregivers cannot be frank and open in front of the partner.  Too painful, awkward, difficult to be frank.  One caregiver said her experience was the opposit - it gave an opportunity to talk about some important issues.  Pam said subsequent meetings can be without the partner.  Once all the info is gatherd the goal is to provide info to AB Health professionals about the need for services.  She works for UofA and the funding for the research is from Alz Society of Canada.

Craig gave an update on the pursuit of a dayprogram.  He and Kim had gathered letters from caregivers and presented them to Home Care.  Everyone acknowledges the need and says "they" are talking at lots of levels but no money and no plan to date.  It is "on the radar".  Everyone is urged to be registered with Home Care and to ensure that they request assistance if needed.

Discussion about partners getting lost.  Safely Home - you can register for this through the Alz Soceity of Canada. They have some info about locating devices etc.  When you register with Safely Home, you get a bracelet to wear.  On the front is says "Urgent medical information - see other side".   it says "memory loss", the partner's first name, and to call the police.    Another alternative to this would be just to get a silver bracelet and get it engraved with the caregivers name and phone number. 

The newcomers knew of us through ad in the paper and our poster at the doctors office.  Lots of good general discussion. 


Like us on Facebook