This story is very special. It is a story of forty-four and a half years of love.
The caregiving needs do not end when your loved one passes away and the FTTF team knew a special case like Laurel's was inevitable. Where a need is still so great but the person does not 100% fit the traditional criteria of the program. (Current, live in primary caregiver). 2021 was a pilot year for our CFTC Grant to understand how to best execute the program and a "special case CFTC grant to Laurel was the least we could do after everything she did for her husband.
Laurel was a wife and live-in caregiver to her husband, Jim for decades. He had FTD. He was a gifted pianist and accordion player that eventually lost his ability to read, write and speak from FTD. His passing this year came with sadness, relief (for the alleviating of his suffering) and with a lot of bills.
How long did you care for Jim?
"From the beginning - long before [official] diagnosis. Until the end: The end of communicating, the end of knowing and then, the ending of breathing. To the very last heartbeat."
What was the most important type of support you needed during the caregiving journey?
"I needed someone I could talk to who then wouldn't hold it against me. [For example,] I want to be able to say, I am so tired I can't take one more step...and not have them jump in and try to "save me" but instead listen and not judge me for expressing my inner thoughts and understand that I still loved my husband, still wanted to be his everything he needed."
What words of wisdom do you feel would help other families?
"Get passed your own grief and feelings of loss. Remember, your loved one has lost more than you ever will to this disease. They have lost who they were and who they had the potential and plans to be.
You will slowly become their whole world, but even that degrades. It is exhausting but it will probably also be your only chance to be everything to a person you loved and admired. Step Up. Stay Strong. You can only serve in the Now.
Laurel's grant helped pay bills and a chance to see her grandchildren for the first time in years. If that's not relief, we don't know what is!