What It’s Really Like to Live with Dementia: Pt 2 from the perspective of a spouse


The stress any health crisis puts on a relationship is no laughing matter – but when it’s memory loss your partner is dealing with, sometimes maintaining a sense of humor is all you can do. Our last episode was with Joe Dolan who is personally battling early-stage dementia. This is Pt. 2 with Joe’s spouse, Maureen Barnes, who shares how she has come to terms with this illness in her life and has learned the best ways to support her spouse with dementia.

Both Maureen and Joe have such a gracious way of seeing each other, as they deal with the challenges of dementia. This is certainly a lesson we can all implement in our lives – offering our partners more grace, and space – a tactic that can lead a relationship – in spite of challenges – into a stronger, happier place. It’s such an inspiration to see people, who are experiencing dementia in their life and embracing it; talking about it, and sharing strategies that help promote independence while still supporting in areas that maybe need a little extra help. Most importantly, I greatly respect both Joe and Maureen for not begrudging the fact that this has happened, but accepting that life is just a little different now. Let’s revisit some of the wonderful tips they talked about.

  1. First – It’s all about acceptance. Sure, it’s not fun accepting things we don’t like or disagree with. But it doesn’t do anyone, any good, to argue over the right and wrong. As Maureen stated, where do you go from here. Acknowledging uncomfortable circumstances actually allow us to step back and see the bigger picture, and we can then discover new pathways to walk with, absorb, and handle the situation.
  2. Next, Simplify things, by keeping things organized and in specific locations. Have a spot where the keys and shoes go, every time you enter or exit the door.
    Use a master calendar to refer to and keep it in an easily accessible place. You hear this piece of advice for busy families with children. There’s a reason it works.
  3. When it comes to supporting your partner: Find the balance in providing assistance and still allowing space for independent decision making. In Pt 1, Joe mentioned how that sense of self gets very shook up with this diagnosis; how it rocks your self-confidence and makes you feel “less than” what you used to be. By putting simple safeguards, reminders, and minor methods of assistance in place, you can lift up your partner’s sense of self which actually promotes their ability and capacity to continue doing things on their own. Having a sense of purpose and knowing someone believes in you, can go a long way for routing around roadblocks.
  4. Make sure to brush up on your communication skills and techniques and really lean upon them. Finding ways to agree, and not argue was a big piece of this couples advice. As Maureen so beautifully highlighted: the fact is that both persons opinions and realities can “hold weight”.
  5. For building a network of support, make sure to Nurture the current relationships in your life and start building your support system, NOW. You never know when you’re going to need it.
  6. Be present and aware, by living IN the moment. This is a large piece of advice from many voices out there, who share tips for managing a diagnosis of Alzheimer’s and dementia.

We’ve shared a few extra resources below, to help you and your partner whether you’re just embarking on this journey, or have been on the path for a while. We know you can never have too much love and support.

Join us next time on Life With Dementia, the solution-driven podcast sharing relevant research, personal stories, and practical tips for living well with dementia.

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Show Notes:

Music by Blue Dot Sessions

Photo by Nathan Walker on Unsplash

Additional Resources:

Alzheimer’s Society. Living With Dementia/Staying Connected/Impact on Couples www.Alzheimer.ca 

Bright Focus Foundation. Being An Alzheimer’s Caregiver  www.brightfocus.org/alzheimers/being-caregiver

Habits for Wellbeing: 9 Effective Communication Skills www.habitsforwellbeing.com/9-effective-communication-skills/

Bright Focus Foundation. Managing Caregiver Stress www.brightfocus.org/alzheimers/article/minimizing-caregiver-stress-tips-coping-frustration-and-anger

Alzheimer’s Association. Living In the Moment Module. www.alz.org/in-moment-module/index.html