The System

 It was not much of a shock when we were told about Dad's diagnosis. We knew that he was really struggling with conversations. We also knew he was having difficulty driving. When he had an accident both mom's and my first question was 'Did he cause it?' I guess we both hoped it would be caught by the police and that would start the process. That did not happen - Dad was not in the wrong in the accident, although we are not sure what had caused the problem.  

I finally made a phone call and asked for some help. I am not sure of the sequence of events but I know it started with a phone call. I contacted LHIN (Local Health Integrated Network) and they arranged for someone to visit my parents in their home to test dad. The tester recommended that dad stop driving (she could not take his license - only the doctor could do that) and sent the report to the doctor. When we saw the doctor, who came to my hometown from a larger centre, we were given a diagnosis of Alzheimer's.  We moved on to the next step, a nurse came into gather health and medical information regarding my father and discuss an eventual placement in along Term Care Home. Dad gets reevaluated every six months to note any changes and to arrange additional support to keep him at home. 

Mom chose one home and a basic room, which was a bad decision as my Dad has been on a waiting list for the past three years. I do not blame the LTC process, I mostly blame COVID  I wish someone had explained how to play the LTC game to me up front. Choose multiple homes and request Semi Private or Private as a room choice. At least in my area this will cut down the waiting time for placement in a home. Once you are placed in the system you can request movement, a change from a semi-private to a basic room (which is now semi-private as wards have been eliminated) and movement between homes. It may not start out the way you want but you will eventually get there!

We also got additional support through LHIN which have helped with some of the expenses my parents now have to face. Dad no longer cuts his grass or cleans out the driveway. We hired workers to do this and got reimbursed the full cost. I have been able to set up cameras in their home to 'look in' rather than running over to see what is happening. We also have respite and assistance for my mom, who is starting to have problems of her own. Watch for future posts regarding these issues.

Another support I was slow to access was the local Alzheimer's Society office. I think my biggest issue was I did not want to involve too many organizations and I know mom did not want to admit the problem was that big. hey were kind and let us move at our own pace. We got follow up calls in six month intervals and were always told that we could reach out for support as needed. My frustration was mom not accepting what was happening and seeming to think when Dad had a good day he was getting better. This is the reason I finally called this organization and we began attending monthly workshops.  These have been very good as a place to share our story and hear others. At first it is awkward but eventually it becomes comfortable. They are very informative and touch on various topics support the families involved. It is usually a safe place to share but today was not good. Something was said that set me off and I do not know if I will return next month. I no longer feel that it is safe to share and why should I go if I cannot share. I may share more but right now it is a bit sensitive  They are a great source of information - there is a great lending library if you are into reading materials. They have a wonderful web site! Make use of them early - they are valuable resources.

There are resources out there - I am sure I have not touched them all. This is a new journey for me - I will continue to share. Leave a comment - share your journey!