Sandwich Anyone?
I guess I am part of the “sandwich” generation, a group that is simultaneously caring for our children and parents. I don’t think the notion of taking care of my parents ever entered my mind when I was a young person embarking on a career and family life. But now, more often than not, my friends and I find ourselves talking about the needs of our aging parents, several of whom have received a dementia diagnosis or are displaying concerning symptoms.
As horrible as advanced dementia can be, I find the early stages to be the most challenging because the person living with dementia is still quite capable in many areas while lacking awareness in others. Studies have shown that a person with mild dementia has brain function similar to a teenager. Sure, teens may be able to survive on their own for a while, but they also tend to overestimate their abilities, not anticipate or recognize mistakes, use poor judgment, and not respond well to criticism or advice.
If we don’t pause to consider the way we bring up our concerns, a parent living with dementia is apt to receive our well-intentioned advice like our teenagers do…with pure annoyance or worse.
Members of the sandwich generation juggle work and family and tend to jump quickly into problem-solving mode because we have little time to spare. Understandably, our parents may resist our fast-paced approach to addressing what we perceive are their shortcomings especially when their independence and competency feel threatened. Coming at them like a child with a list of things we think they need to do or put into place right now often ends in disaster. So how do we approach the situation when we know the time for more support is needed?
With kindness and compassion for them and for us.
For us…Trying to strike a balance between caring for our loved one and caring for ourselves is key. The path ahead is going to be bumpy and filled with unknowns and mistakes. We are dealing with the unpredictable blend of people and family dynamics along with dementia which has an amazing ability to catch us off guard.
For them…How, when, and where we deliver our concerns is key. From my perspective, there is no magic phrasing or formula which is why I work 1:1 with families to help them start and continue difficult conversations.
Here are a few tips that I recently shared with a client who knew the time to address cognitive concerns with his dad had arrived:
Be patient. Don’t expect everything to fall nicely into place with one conversation.
Approach difficult topics with a respectful, calm and caring tone. Your loved one likely views themself as a family leader and an adult and it’s important to try to preserve this role as much as possible.
Have the conversation in an environment where your loved one will feel most comfortable and you won’t be interrupted.
Consider what time of day is typically best for him/her. Afternoon or evening can sometimes, but not always, be a time when confusion can increase.
Try to frame the conversation to be less about you helping them, and more about them helping you understand their wishes so you can honor them down the road.
Speak slowly and allow only one person to talk at a time. People living with dementia need extra time to process information.
Lower your expectations for initial conversations. Your aging parent is unlikely to see things exactly the way that you do.
Allow your loved one time to express their thoughts without interrupting which can cause them to lose their train of thought and become frustrated.
Try to gain permission to attend their doctor visits. Offer to be a notetaker or explain your desire to learn more about their diagnosis.
Avoid arguing and do not take critical comments personally. In most cases, it’s the disease talking.
Take things one step at a time. If you’re worried about driving, talk about driving, not selling the house.
Have an agenda but don’t lead with it. Coming in hot with accusations and worst-case scenarios will result in resistance.
Watch and wait for your opening if you have been met with anger or extreme resistance in the past. If your parent mentions a topic of concern, recognize your opening to agree with them and ask if you can begin planning for the future together.
Back off and apologize if feathers are ruffled. Arguing with someone living with dementia is almost always futile.
Try again later if they get mad. Your second (third, or fourth) attempt will go better because you will get better at this and be able to adapt your approach.
Ask medical providers to deliver bad news. Blaming the clinician for a loss of independence can help preserve the relationship. “Your doctor says so” is a handy phrase to use when they need to stop driving, turn over finances, sell their home, etc.
If needed, call or email the medical provider ahead of an appointment to communicate your observations and safety concerns.
Avoid self-criticism. Calling dementia difficult is an understatement. Frustration, mistakes, losing your cool, and feeling inadequate happen to the best of us!
Learn and repeat this phrase often, “I am not perfect, I am human” to ward off feelings of guilt and shame.
Educate yourself about the disease so you can try to be as proactive as possible.
Accept support from others and delegate as much as you can early on. Dementia care is not a 1-person job.
For help starting a conversation with your aging parent or navigating the many phases of dementia please reach out to schedule a Dementia Coaching call.