Family caregivers of people living with dementia know all too well that as dementia progresses, the demand on their role as primary caregiver can become overwhelming. It is both “normal” and understandable to still very much love the person [with dementia] and at the same time, need to take time off and get respite from their caregiving responsibilities.

The Problem – Deborah’s Anxiety When Her Husband is Not with Her  

Frank is the primary caregiver to his wife, Deborah. To help give his Dad some respite, Josh comes over to spend time with his Mom.

However, as soon as Frank leaves, it doesn’t take too long before Deborah shows signs of anxiety. She would repeatedly ask Josh “Where is my husband?”, “When is he coming back?”. The longer time is away the more anxious Deborah gets,

To calm Mom down, Josh would call his Dad, disrupting Franks’ respite time. Talking to her husband always seems to calm Deborah down. This causes more distress for Frank. As his wife’s primary caregiver, he is showing signs of caregiver burnout. 

It’s upsetting for Josh to see his Mom become anxious around him. He feels helpless for not being able to properly support her. It also makes him feel guilty having to call his Dad each time, to help calm his Mom down. 

The Explanation Behind Deborah’s Anxiety 

Frustrated and disheartened by being unable to adequately support either his Mom or Dad, Josh requested to meet with me.

Hearing the details of what happens each time Josh visits, I’ve come to believe that Deborah may be experiencing a form of prosopagnosia also known as “facial agnosia,” or “face blindness.” 

She gets anxious when Frank leaves, because she is afraid or uncomfortable to be alone with the “stranger in her room.” She doesn’t recognize that “the stranger in her room” is actually her loving son, Josh.

Understanding now that the reason behind his Mom’s behaviour and reaction was due to not realizing who Josh is to her, he was able to breathe a sigh of relief. Most importantly, knowing what’s going on with his Mom, helped to relieve him of heartache and feeling helpless. Knowing “why” made it easier for Josh to not take her reactions personally.

Josh accepted that this is now the “new normal” in their relationship. He now has a starting point of reference to rebuild and re-define what a meaningful relationship would look like for their family.

The Solution to their Problem and Re-creating a New Normal in the Family 

The next time Josh came over to visit Mom, we planned for him to wear his work shirt that clearly shows his name on it. He noticed that Mom would often look at the name on his shirt and every so often she would say, “Oh! You’re MY Josh!” 

These moments make Josh feel good.

Josh and I also came up with a plan to come prepared with a list of activities that Mom enjoys doing. These activities helped distract Mom from repeatedly asking about her husband. 

The plan worked! 

These small changes made a huge difference in reducing Mom’s anxiety. It allowed Frank to spend his respite away from his wife uninterrupted and in peace. Last but not least, this allowed Josh to spend quality time with the Mom he loves.

Together, they discovered a “new normal” to maintain a meaningful family relationship and create good memories of each other.

Disclaimer

This story is based on a real client’s dementia journey although the names and details have been modified to preserve confidentiality and protect privacy. Our “Meaning Behind the Behaviour Stories” are meant for informational purposes and to share best practices in dementia behaviour management. Each person is unique and what may work for one person, may not necessarily work for another. 

If you are in need of advice on how to keep routines or needing help on understanding ways to have successful interactions, contact us for our no-cost 20 minute phone or Zoom consultation for new clients. We promise and assure you that this is not a “sales call”. We cannot responsibly give advice over text or email as each case is different. We would like to provide you with the most appropriate and personalized dementia solutions you and your loved one deserve.