Living with Alzheimer's: Who Decides?

It’s imperative that we take responsibility for our senior ‘living situation’.  If you don’t want others making this decision for you…be pro-active.  With a little advanced planning it is possible to stay in your home even with Alzheimers as there are many additional support services available.

Having been regarded as competent, intelligent and able throughout my life I would hate to be relegated to only being allowed to make decisions as to what color to wear, where to place my furniture or where to keep photos and mementos…wouldn’t you?

Adult children should not have to shoulder the burden of ‘a decision’ their parents should have made or at the very least should have acknowledge as the ‘elephant’ in the room.  They have lots on their minds these days and may forget to take into consideration that you (who might have some diminished capacity) may want to continue living at home. Although it is true that a balance must be found as to the family’s ability (financially, emotionally and physically) to accommodate ‘aging’ at home the problem is whether you or your family know what ‘aging at home’ means and have you given any consideration (even marginally) to the factors involved.

So, I ask you to begin considering where and how you would like to ‘live-out’ your years.  Two questions, “What does quality of life mean to you?” and “What safety issues may be present?”  It would be helpful in situations where you may need assistance if you consider whether the action you decide to take supports or diminishes your self-sufficiency and resilience. Diminishing either of these two important emotional tools of well-being does not bode well for a happy existence. Minus an extreme situation, thoughtful, non-judgmental communication with your family will enable better choices.

As ‘budding’ seniors we need to take a hard look at and address our most basic human needs beyond food, shelter, personal care, i.e. the need to give, as well as receive, feel of value to self and others, autonomy and control over outcomes, and what causes us to have meaning and purpose in life. I know I want to continue to play a vibrant role in society…I want to know that I am making contributions as I age (even if it means with assistance) to have a say on the "big" decisions…I also want and need my freedom and independence for as long as possible…I do not believe that ‘getting older’ is a good reason to let yourself be ‘corralled’ …we are not children…so I plan to prepare for my senior years as a responsible adult…you should too.

It is well known that people live longer if they are happy, and have an active life with others in it. Sure, if you stay at home you may need some help with snow shoveling, yard maintenance, and travel issues especially if you can't drive etc, but pre-planning means you and your family has prepared for and recognizes and accepts the risks and drawbacks...you can always change your mind and update…people change their wills many times based on various life circumstances.

It is also important to understand what risk (if any) your decision places on others? If the consequences of your plan can adversely affect the lives of your family, you must be willing to accept that they may want to ‘negotiate’ some changes so as not to put their lives at odds…your freedom and independence should not inhibit or negate the independence of others. This must be HONESTLY addressed.  Perhaps if we had these senior-care discussions in advance, everyone, including our children wouldn't be so fearful of what the future ‘plan’ should be.  

I am suggesting that ‘remaining at home’ is ONE option, and that if you, along with your family take the time to plan ahead for your senior wants and needs, the journey will be much more palpable to everyone involved. Open family communication has to start much sooner, before there are any ‘health’ issues. Setting benchmarks, acquiring a knowledge of services available, family members deciding in advance what roles they will be willing to play, making home accommodations and adaptations the norm and realizing there may be changes and additions to ‘the plan’ will help make ‘senior living’ discussions less dreaded.

If you are 50 or older I urge you and your family to start your education.