The decision to arrange for others to participate in meeting your loved one’s daily care needs is never an easy one.
By and large the most common concern I’ve heard from families who were considering facility placement, or the hiring of in-home primary caregivers, may surprise you.
Often the primary barrier to obtaining increased care didn’t come down to overcoming feelings of guilt, or even financial considerations…instead it was something harder to articulate and even harder to overcome.
There was an inexplicable sense that after their loved one moved into a care community, the gradual erosion of the relationship with their loved one would suddenly be accelerated to the point that any hope of further connection would forever be lost. The fear is that what remained of a once powerful bond would slip past the point of recognition to be retrieved again only in frozen moments captured in old photos or relegated to the occasional retelling of family stories. Those feelings are real. Those feelings are completely understandable.
Even when you are the face your loved one sees most often, the disease process may mean that recognition does begin to fade. It’s only natural to worry that when your loved one lives away from home, in a different environment, or is cared for by other people, that this fading away may happen more quickly. However, ensuring that your loved one receives adequate care to meet their increasing needs is likely your overriding priority, even if that comes with the potential for some additional hurt and grief.
Below are some tips about how to feel connected and stay an important part of your loved one’s life no matter where they are or who is helping with their care.
Share stories
You most likely sought care outside the home, or hired professional care givers to come in, because they possess an expertise with Alzheimer’s and dementia that you feel would benefit your loved one. But, their expertise is with the disease not with the person.
There is no one else who knows your loved one better than you do and you’ve had a front row seat with which to view and be an important part of their life story, their biography.
Your voice is needed to communicate your loved one’s history, preferences, likes and dislikes when they are no longer able to do so. This information is critical in assisting the care team meet daily emotional and physical needs.
Give advice
It’s okay to share with others your caregiving successes, routines and preferences. You’ve been at this a while and as anyone with any experience in dementia care knows, what worked one day can be totally ineffective the next. The more ideas and approaches you can share with your new caregiving partners, the more choices they will have when needed as different situations arise.
Consider what is most meaningful and then share your own needs
Be honest about what you need from this experience. Most primary caregivers are excellent at communicating what they feel their loved ones needs are, but many have gone so long without making their own well-being a priority that they may not be accustomed to thinking about what they need and want.
Think about the times during the day that you feel most connected to your loved one, the times or activities that bring you the most joy or satisfaction. Let the caregiving team know that you’d still like to be the one who washes your Mother’s hair, feeds your Dad Sunday dinner, shaves your Husband’s familiar face or plays your Wife’s favorite songs from the days you courted.
Letting the care team know that this means a lot to you can help them create space and time for those experiences to continue. It is an all–around win-win situation as it’s enriching for your loved one, meaningful for you, and a chance for the caregiving team to take a little break.
When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer's and Dementia Caregivers
Mara’s passion and life’s work has been to learn the best practices which capable caregivers (both professional and family member) use to find success, joy and hope in the face of this devastating disease and find a way to share that information with those who deal with dementia on a day-to-day basis. She is the 2015 Jefferson Award Recipient: Outstanding Public Service, and the 2015 Jacqueline Kennedy Onassis Award Recipient: Outstanding Public Service on Behalf of and Throughout the United States. She continues to be an active speaker and advocate for those impacted by dementia worldwide. Learn more about her work at: www.whencaringtakescourage.com.
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