Healthcare organizations need to recognize and acknowledge the impact that placing a loved one with Alzheimer’s has on families and find ways to assist and support them.
I’ve seen it so many times it’s almost predictable, and it’s heart-wrenching to watch.
Their mom has missed a few appointments, forgotten to take her medications, (or have taken too many). Dad left the stove on again and put his keys in the microwave. The forgetfulness increases and becomes a daily concern.
There are phone calls to their loved ones at work or in the middle of the night, mom’s confused as to what time of day it is. They know its time, they have to make that phone call and set up that appointment.
Children of Alzheimer’s: Offering Supportive Services
The Weight of the World
Then it happens, the one conversation that children fear the most. Although they already knew it was coming.
The diagnosis is in, Mom or Dad has MCI (mild cognitive inpatient) or Early stage Alzheimer’s disease. The doctor recommends a different living situation, one with some additional supervision, moving in with them or finding an Assisted Living Facility. The hard decisions and the weight of them rest on their shoulders.
Moving a parent or loved one out of their home and into a facility, many times against their wishes, is not an easy thing to do. To be the one to take them away from a place where they feel secure and safe, (even when you know they are not) is a difficult position.
As achildor caregiver, you feel you are making the right choice, doing the right thing. It is a tough decision and one needed for an increased life quality, for necessary help, and for safety. No matter how many times you tell yourself all this, the guilt still tears you up and the words that you hear put a knife through your heart.
How could YOU?
This is the home where so many memories live, where they lived for decades, raised their children and held every holiday celebration possible. It is the place with that special chair, where they bounced their grandchildren, on their knees and you.
YOU, their child, are the one taking all that away from them.
It’s the home they have lived their lives in and the place where they wanted to die.
“Why did YOU do this to them? How can YOU be so mean? Your father would roll over in his grave if he knew YOU were doing this to me.”
- They will never forgive YOU for this.
- They begin to attack and say things that are hurtful.
Then there’s the one comment.
“I hate you and never want to see you again.”
The Guilt Sets in
It’s all too common and it happens to many families that have to make such a decision. This is the point where some children, take the parent out of the facility and back home. They question their decision, they begin to feel like a failure as a child and the guilt begins to consume them.
They don’t know this is normal behavior, they don’t know that it is out of fear. They don’t understand that the words they are hearing are part of a disease that has removed a filter and their loved ones no longer have control. They have never had to experience the caregiver challenges that Alzheimer’s disease so graciously and without warning, puts forth.
It is an emotional struggle for the parent and the child. Roles reverse, there is confusion on both ends and helplessness and uncertainty takes over. Not knowing how to react, cope, redirect or what to expect, the child often gets angry and lashes back. Sometimes they become distant or will even stop visiting. This is not helpful or conducive to an effective transition.
Many may disagree with this, however, it is the healthcare community’s responsibility to recognize these things and provide supports to families.
Don’t assume they know, don’t assume the doctors that diagnosed your parents and sent them away with all this information and answered their questions. Providing education, resources, and recommending support groups to the family, from the beginning, is vital to providing an effective admission and easier transition.
Ongoing support promotes trust and positive relationships with families. We often focus so much on the resident that we forget that the children or loved ones are experiencing the effects of Alzheimer’s too.
Becoming a resource and safety net for families and a providing a secure environment with supportive services for both their parents and their children, is an investment that will have a profound return for everyone.