THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

March 5/13

Open discussion.  First question of the evening was “any burning issues?”  Caregiver P is attempting to deal with issues involving shared property.  As they are the only ones who live on site, she does all the work.  It is very stressful and another owner is putting on a lot of pressure.    The big question is that when our plates are already so full, one more big issue is so overwhelming.  And the caregiver is alone to deal with whatever the new issue is.  We are responsible for all decisions, all the work. 

How are children doing?  Teenagers don’t talk, and in some cases pulling away from the family.  Adult children range from coping well to complete denial. If your child does not accept the reality how much more stress is that on the caregiver?  We keep encouraging them to attend the meetings with Christene but many refuse to come. 

Drug talk:  do the Alz drugs really work?  Are they worth the side affects?  Al has lost consciousness 5 times in the last 8 months.  3 trips to ER, heart monitor, endless tests.  Luckily the specialist he sees was at the fundraising event we were at when it happened again.  He says Al’s heart is slowing down because of the Exelon.  So now, another 24 hr heart monitor and off to another specialist at some point. 

What about vitamins/supplements/etc?  There are no benchmarks.  Even with the Exelon the caregiver is unwilling to take him off anything that  may be helping. 

Lots of caregivers are struggling with prescriptions.  Blister packs or no?  The blister packs don’t allow that you manage any changes in terms of vitamins/supplements.  Even with the doses of prescription drugs, you can’t manage anything if they are in blister packs. 

Example - the higher doses of some Alz drugs may take time to get used to.  The caregiver needs to be able to slowly increase as the body gets used to the drug.  This is something you may retest weekly.  In blister packs you would be running back to the pharmacy continually.  Better to buy the dosettes and do your own.  Of course, in care, and with some agencies who provide care, they insist on blister packs. 

How much can the caregiver deal with?   A quick survey around the room brought a bit of a laugh:  lots of antidepressants.  When do you put your partner on the list for care?  The wait list is long, reportedly 18 to 24 months in Calgary and you may get a bed within 100 km.  No one wants to go but how much can we do?  At what point is it them or me? 

Caregiver R takes his spouse out a lot but it is difficult to take her back.  Family visits are often disappointing, friends hardly come and family visits often very short.  It is difficult but we want more for our loved ones. 

Discussion long term care – how much?  $1250 to $1500/month.  Some is subsidized, some not. What happens if you can’t afford it.  Province may pay but then do you you lose in the decision making process?

Caregiver B is considering quitting work and staying at home full time to take care of partner.  Yes I’m stressed, Yes I’m depressed.  But have been like this all of my life.  My doctor has given up on me.  I just survive. The health of the caregiver seems to take a backseat to Alzheimers.  We manage because we have to. What is the cost?

Partners in care. Caregivers took a holiday and returned to “he REALLY missed you.  You need to come more often.  They are lost when you aren’t here”  One caregiver is still working full time, they visit several times a week and take their partners out on the w/e.  The other caregiver has quit work, sees her partner every day but has, at last, taken an actual vacation for 2 weeks.  She must trust the staff will ensure he has juice not just water, will take the time to sit with him and ensure he eats, will not manhandle or drug him if he is “hard to manage”.  It’s a holiday, but Not. 

Next meeting – childrens meeting.  Please encourage your children to attend.  Email Ron if they are going to come. 

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