It is rare to meet someone who has not had experience with a family member with Alzheimers. It is something completely different to serve as primary caregiver for someone struggling. Maybe we are just more aware these days, but it seems I encounter families dealing with some form of dementia symptoms earlier and earlier in life. The story below... a wife struggling to care for her 30 year old husband brings the reality a bit closer to home. While we have no solid theories for what is causing Alzheimers, it is clearly affecting the lives of more and more Americans and I would suggest, at earlier ages. When I started in the senior living industry twenty years ago, it was rare to have someone under 65 living in a memory care setting. Over the last ten years, I have encountered no less than a hundred such cases either living in my communities or families with which I have worked. This story brings to mind a physician whose family I worked with who was diagnosed in his early fifties. I worked with the family as, at 59 years old, he moved into a senior living community. The struggle was not just with his wife and him but with the caregivers at the community into which he moved. The expectation that, as professionals, they should be able to engage him in activities and routines appropriate for 85 year olds, left the staff feeling hopeless and some might say, even negligent. This brilliant gentleman was bewildered enough to be surrounded by nurses calling him by his first name, not DR. Not to mention, eighty and ninety year old residents everywhere in common areas. His wife wanted him to be engaged,have new interests and increased quality of life. Remember this is a physician, only 59 years old. We had to take a new perspective in helping the family transition. Success started with creating a personal space where he felt comfortable... not immediately engaging him in the routine of people thirty years his senior. We worked with him to rearrange and exert control over his own closet first. He had always organized his clothes by color, shoes placed by function, etc.... much like someone would prepare an operating room for surgery. We didnt force him to go to communal meals at our urging. We took the approach of creating a condo for him inside the senior living community. We had his meals delivered. Asked the staff to address him as Dr. and spent the first few weeks finding a way to give him ownership and control of his own space. I share this story to relate that when dealing with early onset Alzheimers, traditional strategies for 24 hour care may not fall into our ideas of what success may look like. Often, smaller care communities with specialized neighborhoods designed for the appropriate cognitive impairment level, may be a better alternative than larger, medically oriented communities designed for very frail, medically complex elders. Certainly, when someone is dealing with the disease at early ages, we have to help them hold on to any identity that remains.... doctor, photographer, father... surround them with environments that allow them to retain their identity for as long as possible. Nothing can be more jarring than someone with early onset, finding themselves not only cognitively frustrated but struggling to adjust to a living environment that contributes to further bewilderment. Whether that involves making a computer the center piece of daily routines or organizing a closet as an anchor for identity, keep what works and try to avoid creating a new identity that feels like successful care but leaves your family member
Posted on: Mon, 29 Sep 2014 01:39:19 +0000
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