Living Alone With Alzheimer's Disease

by Bev Janisch

I had someone ask me the other day how one reconciles the fact that someone they care about is living at risk with dementia. Their immediate thought was that risk needed to be eliminated and that the person needed to move from their home to an assisted living facility. This is always a very difficult decision and one of many that requires that risk be weighed in the context of quality of life and the disease progression. The Alzheimer Society of Canada, provides valuable information about the things that need to be considered when making the decision about living at risk.  The article provides a balanced and thoughtful approach to the issue of living alone and managing risk.

I think the other important consideration is in relation to our dialogue about the decision.   In the process of decision making, we often find ourselves trying to rationalize and explain to the person with dementia the reason we feel we need to make a difficult decision.  I like the approach in Rabins and Mace's book, The 36- Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss.  They make the distinction between making the decision, "which you may have to do, and participating in the planning, which the person who has dementia can be encouraged to do."  Trying to explain, rationalize, and have the person with dementia fully support the decision is usually not a realistic expectation.

It is also interesting to note that people usually wait too long before making these difficult decisions. It is understandable why this happens, as the person with dementia is rarely going to agree to a change, even if they're not coping,   Family members then struggle to balance that knowledge, with what they can see as increasing risk.  I think one way we can make ourselves feel better about the decision is recognizing when the person's world with dementia is made smaller and more aligned with their strengths and capabilities, they feel more comfortable and peaceful.   So often the struggle we observe in people living alone with dementia is a symptom that they're not coping, even if they're not able to articulate it.

This was very apparent with my mother in law, Jessie, when the time came that we needed to look for another living arrangement.  People in the family kept trying to explain to her why it was necessary and no matter how logical the argument was she wasn't going to get it.  I think we did this so that at some level it would reduce our guilt about having to make a decision that was against her wishes. However, if we just focused on the symptoms such as repeated phone calls, medication troubles, the house not being kept up, more anxiety, just to name a few, we might not have been as influenced by her convincing arguments. Attempting to involve her in the decision really wasn't fair to her and in the end made it more difficult for all of us.

At these times when big decisions are being considered, it is always helpful to gain some perspective.  It can make a world of difference to reach out to others who can provide some objectivity and support.  This is one of those times in the dementia world that others can help us make the best possible decision and feel more peaceful with whatever we decide. The local Alzheimer's Society is a great resource for offering support groups and helping with these difficult decisions.

Share your experiences with these difficult decisions. What have you found to be most helpful?