As I hold my Mother’s hand, memories of reaching for her hand as a child arise. I specifically remember the feelings of love, comfort and safety that her gentle touch gave me. Now here we are, 40 plus years later and her eyes reflect the same feelings of love, comfort and safety as I gently hold her hand to reassure her. Mama (Granny as she is affectionately called) is in the midst of end stage Dementia. We are on a journey that few are prepared for and the road has not been smooth. I don’t think it is for anyone living with a loved one with a degenerative illness.
My siblings and I have had to make many difficult decisions. And as her condition changes (many times without warning), we have had to change, alter and make even more difficult decisions. However difficult those decisions, our agreement for Mama to live at home (with us) and not in a facility has never changed, altered or wavered. I honor that this decision is not right for everyone and it is certainly not easy, but it is the decision that we have made.
Mama lives with me and my family. Daily, I balance the love, patience, resilience, sacrifice, and sadness that is required to care for a parent with Dementia. This means living with the reality that the person that you tuck in at night (yes, I tuck her in at night just like she used to do for me) may be drastically different from the person you greet the next morning. In fact, the demeanor and disposition can change temporarily or permanently from one moment to the next. Our home is filled with both slow and rapid transitions that require the entire family to commit to doing the best we can, to make as many moments as we can, in Mama’s day, loving, caring and safe. As a wife, a mother and a daughter, it is my cherished task to keep all the parts moving. This is no small feat, Loved Ones! What does it actually look like? Days filled with more laundry than you can imagine, two washing machines constantly in motion, four caregivers rotating days, employing uber logistics skills, arranging schedules, changing schedules, sacrificing, budgeting, unbelievable utility bills, laughter, tears, lots of prayer, and learning to give myself grace because I am going to miss some things.
Throughout this journey, I have searched for resources (it is expensive caring for a loved one), information (there are so many needs), referrals (caregivers are so hard to find), community (difficult–especially during COVID) and support (is selfcare a realistic option?). I want to invite you to join me on this journey, share your experiences, gain information, embrace community and most of all know that you are not alone.
A Love Sandwich was birthed from the need to create a space to share, support, resource, celebrate and connect with others on a similar journey. The layers of my love sandwich are made up of my husband of 18 years (Larry), our daughter Nandi, our son Pierce, our daughter Olivia (Livi), our dog Cookie Elizabeth (a feisty 3lb Chorkie) and the leading lady in our home, Mama (Granny). There are complicated, hard days and wonderful, joyful days but at the end of them all I find myself grateful that I am lovingly nestled between two beautiful generations. I will share the layers of my love sandwich in a weekly blog as well as share links to information that I have found useful. I promise to be transparent and honest about the layers of my love sandwich and I pray that this will be a space that you feel safe to do the same. I am so excited to share this journey with you and I pray that it Blesses you in the way that you need it to.
I want to invite you to join me on this journey, share your experiences, gain information, embrace community and most of all know that you are not alone.