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Dementia is a Game Changer-Promises and Guilt- When Should We Begin to Look at Options for Care?

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Guilt is ugly, and powerful, especially when in intrudes on the decisions we face as a caregiver of a loved one with dementia. There are many layers that make this task difficult, both in our heads and in our hearts.

When times are good, it’s easy to make promises like, “We will never put you in a home,” or “Till death do us part.” But there are problems with making these sorts of promises. At the top of the list is the fact that no-one plans on dementia, and there is no way to know that we have made a promise that we won’t be able to keep. It’s hard to anticipate the challenges and unexpected changes that impact a person’s ability to navigate their world. Your loved one likely has no clear conception of what round-the-clock care looks like. If they did, would they really expect you to be able to handle it?

It is imperative that while we examine our hearts as loving humans, we also face up to the reality of the disease. Sometimes a different perspective can provide clarity:

  • "Don't ever put me in a 'home'": there are specific images, smells and memories that come to mind when these words are spoken. ‘Home’ is equated with ‘institution.’ However:
    • The environment and approaches to care available have changed and shifted with the needs of our aging populations.  
    • Senior living looks very different from the way it used to.
  • “Till death do us part". There wouldn't seem to be a lot of room for interpretation with this phrase when we make this promise as younger people. But life is full of uncertainties, and to expect this promise to be kept literally is not only unrealistic and unfair, it can have unintended negative consequences for everyone involved. The stress that the disease put on loved ones is much more dangerous and detrimental to the rest of the family than is openly discussed.

So, we have to change perspective and assure ourselves: the best way I can care for my loved one is to get the very best care that I can.  It’s not abandoning my loved one, it is honoring them.

Keep in mind:

  • Health care workers are specifically trained to support people who are living with dementia.
  • Many Dementia care communities provide shared living spaces, which may seem questionable to us, but in practice we have learned that it can help decrease anxiety for the person living with dementia. We find that many of our residents don't necessarily interact with their roommates, but they take comfort in having someone close and it does not create the social problems that many families fear at the start of the process.

As has been described in countless books and conversations about this topic, dementia is a form of metaphorical journey. As with any physical journey, there will be twists and turns and unpredictable occurrences. Since we are not the ones experiencing this journey ourselves, all that we can do is be the supportive, loving person that our loved one needs.

Acknowledgment, love, and grace are key, as we strive to do the very best we can. This means for our loved ones, and for ourselves.

A final word:  If there is one thing that we have heard more than any other from family members, it is: "I wish I hadn't waited so long". Waiting can make the dementia journey much more difficult and unpleasant. We understand that it is scary and painful to acknowledge the reality of what your family is experiencing, but it’s much more dangerous to wear blinders and wait for something catastrophic to happen (which undoubtedly will happen).

Waiting can leave you making this huge decision in a crisis, in addition to limiting the options you may have as far as what you would like your loved ones environment to look like. Do your research, explore your options. Develop a plan, and make the decision. Once you do this, the rest will begin to fall into place.

ASK FOR HELP when you need it. Above all, be gentle with yourself. Dementia is not something anybody asks for. No-one is to blame.

With Love,
Leslie Elvebak-Powell
The Lighthouse Keeper