Living with Purpose After a Dementia Diagnosis

Finding meaning, preserving relationships, and knowing when to ask for help

A diagnosis of Alzheimer’s disease or another form of dementia changes life, but it doesn’t mean that a meaningful life has ended.  In fact, one of the most important things individuals and families can do following a diagnosis is focus not only on what may change in the future, but also on what is still possible today.  This can be especially important for people diagnosed with dementia at a younger age. They may still be physically active, engaged in their communities, and enjoying retirement, or perhaps haven’t even reached retirement yet. Suddenly, the future they had imagined looks very different.  The diagnosis also profoundly affects a spouse or partner, who often gradually transitions from husband, wife or companion into the role of caregiver.

Focus on What Remains

In the early stages of dementia, many people continue to participate in activities they have always enjoyed. Exercise, gardening, music, art, volunteering, spending time with friends, attending classes or simply taking a walk together can continue to bring pleasure and purpose.  The key is adapting rather than automatically eliminating activities as abilities change.  Someone who has always loved gardening may no longer be able to manage an entire garden but may still enjoy planting flowers. A lifelong cook might help prepare simple ingredients rather than make the entire meal. Someone who loves music may continue singing familiar songs long after other activities become difficult.  The goal isn’t accomplishment. It is connection, enjoyment, and the feeling that I am still me, and my life still matters.

The Other Person Living With Dementia

There is another person whose life changes dramatically following a dementia diagnosis: the spouse or partner.  At first, caregiving responsibilities may be relatively small…helping with appointments, finances, medications, or transportation. Gradually, however, those responsibilities can expand.  Without realizing it, the caregiving spouse may begin giving up pieces of his or her own life. Travel becomes more difficult. Social engagements are declined. Hobbies disappear from the calendar. Friends may not know how to help, and leaving a loved one alone may no longer feel safe.  Over time, the relationship itself can change. A partnership that once involved two independent people can become increasingly centered around the needs of one person.  That can be emotionally and physically exhausting, even when caregiving is done with tremendous love.

Caring for yourself is not separate from caring for your loved one. It is part of it.

Bringing in home care, arranging respite care, asking friends or family for help, participating in a caregiver support group, or finding an adult day program can allow a spouse to continue exercising, seeing friends, attending appointments and pursuing interests of their own.  Maintaining that independence isn’t selfish. It can help make caregiving sustainable.

Don’t Wait for a Crisis to Make a Plan

One of the greatest advantages of an early diagnosis is the opportunity to plan together.  While the person living with dementia can still fully participate in decisions, couples can discuss finances, legal documents, healthcare wishes, caregiving options, and where they would eventually like to live if remaining at home becomes too difficult.  These aren’t easy conversations. But having them early allows the person with dementia to have a voice in his or her own future, and can relieve the caregiving spouse of having to make every difficult decision alone later.  Planning doesn’t mean a move needs to happen tomorrow. It simply means understanding the options before they are urgently needed.

You Don’t Have to Navigate This Alone

At Franke Tobey Jones, we often meet couples who are somewhere along this journey.  Sometimes they are simply gathering information. Sometimes a spouse is beginning to feel overwhelmed. Some families are using in-home care successfully and want to understand what additional resources might be available. Others are beginning to wonder whether a senior living community could eventually provide the support they need. 

Our role doesn’t have to begin with a move. Our team can listen, help families think through their situation, share resources, and help them better understand senior living and care options. Sometimes the best decision for a family today may be to remain at home with additional support. At another point, a move may offer both individuals something they need…the person living with dementia greater structure, engagement, and care, and the caregiving spouse the opportunity to once again be primarily a husband, wife, or partner, rather than a full-time caregiver.

And if dementia progresses to the point that specialized residential care is needed, having explored those options ahead of time can make a difficult transition less overwhelming.

Keep Living the Life in Front of You

There is no single roadmap for living with dementia. Every person, every relationship, and every diagnosis is different.  But a diagnosis doesn’t erase someone’s personality, history, relationships, or need for purpose.  Continue the walks. Play the music. Meet friends for lunch. Take the class. Sit in the garden. Laugh together. ACCEPT HELP. Give the caregiving spouse permission to have a life outside of caregiving. And plan for what may come, not because you want to live in the future, but because having a plan can give you greater freedom to live fully in the present.

At Franke Tobey Jones, we are here to be a resource along the way…whether you are just beginning to ask questions, looking for guidance and resources, or considering what the next chapter of care might look like.  Please feel free to call us at 253-752-6621 or go to https://www.franketobeyjones.com/living-options/memory-care/ftj-care-center/ to find resources and questionnaires to help you understand where you re at on this journey.