I thought I might explain some of the content of my book. Part memoir and part research-based, it talks about resources we found, as well as what it is like to sit beside someone who is dying. I wanted this information and found little while acting as caregiver.
We looked for a diamond every day.
A diamond is a sparkling moment when your loved one reappears - it might only be a moment, but it might be the day Dad called me 'sweetie' the way he always used to. Or a simple "Thank you" after he ranted about something that bothered him, or an apology after he got upset. Or the way his face would light up on good days when he saw me.
There is a place for humour, as one blog reader suggested, but there is so much information to be imparted for those choosing to find some answers! We laughed when we could. Some days you need to cry though. The tears heal and wash the scars that extreme caregiving imparts. I would not have done it differently, but would have liked to have felt less alone.
For those caring for dementia patients, the stress often revolves around the lack of control be they caregiver or care recipient. My late father was often angry, as are many who suffer from dementia. This is 'normal' and you take on as much as you can, and let go the rest, including guilt about not doing enough.
There are many books out on the topic of dementia. We know that writing a memoir helps relieve the stress around personal issues. The difference between my book and others is the research I did on dementia, caregiver stress, burnout, depression, cancer, lymphedema. I included information on navigating your way through the Ontario Health Care System, based on the LHIN, CCAC model. The only way to get into a LTC home is through the Community Care Acess Centre application process. This process is governed by Local Health Integration Networks (LHIN), there are 14 regional networks that provide regionally-based services. To find your LHIN, and CCAC department, you must find it on a map, or in the phone book.
Our LHIN and CCAC research recommended a basket of services seniors may access. Unfortunately, caregivers are left out of the loop. Due to misunderstandings around the privacy acts, we cannot easily intervene when we know our parents are at risk. Many adult children are afraid to bring up sensitive issues, such as alternate living arrangements or extra home support.
It is a delicate balance as the tables turn and adult children become responsible for the IADL, and, eventually, the ADL of aging parents with deteriorating health.