THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

The 3rd Tues of each month is scheduled to have a children’s night.  Patricia has arranged for an extra facilitator for this.  Ron and Patricia asked that caregivers advise if their children will be attending so that they ensure a facilitator is available.  The facilitators are volunteering their time so if there is not going to be children attending one month we need to let them know.  The feedback from those who had attended previously was that it was very helpful and they wanted to meet regularly.

Discussion – Disability tax credit:  some caregivers reported that when they first applied for the Disability tax credit they were actually able to go back a couple of years, but it is dependent on your income so check with your accountant/Service Canada.  To apply you will need the doctor to fill out part of the form so plan ahead.  

Long term care is a medical expense so make sure you request a receipt for all care costs. 

CPP for disability – this is a very long and detailed process.  Also children under the age of 25 are eligible for $250/month.  Reported that they have to reapply every year.

Care discussions – sleep issues/sundowning. What do you do when the Partner needs less sleep than the caregiver?  Sleep issues affect everyone and not getting enough sleep makes it very difficult on the caregiver.  Some reported that anti-depressants help.  So does exercise.

Some discussion re anti-depressants led to talk about Ativan – some told NOT good for Alz, some have had it prescribed.  Also, Anticholinergicdrugs which are prescribed for bronchial issues (asthma, allergies).  How do they affect people with Alz?  Really important to have a good pharmacist.

Discussion Home Care – experiences?  One caregiver finding the home care workers NOT very helpful. And he thought they were there for an hour when actually there less than ½.  Are NOT providing companionship at all.  Another caregiver reported they are on home care worker #4 and this one seems to be working out very well.  Caregivers need to monitor and if the person attending Partner is not what needed, call your home care nurse. 

Von – meeting Dec 3 at 3:30 at VON to further discuss daily support program.   Anyone who can attend, should.  Also Alz Society of Calgary contacted Brenda and wants to meet and discuss options regarding programming for Early On-set. Very exciting. All the old staff (with whom we seemed to have issues) are gone.  But it is good indication that groups/agencies want to talk and are realizing that our needs are different than for the typically older diagnosed Alz person. 

Important dates:
Dec 3rd: meeting with the VON at their office at 3h30.  9705 Horton rd, SW.
Dec 4th: regular meeting at 7 pm at church.
Dec 18th: Potluck for the whole family at the church
Jan 1st:  Holiday
Jan 15th:  meeting church for the three groups: caretaker, spouse and kids.

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