No matter how creative we are in developing housing for Lauren, if she doesn’t have competent, loving, respectful care – 24/7 – her needs cannot totally be met. Lauren has spent twenty-five years in a loving home environment. Her care has either been provided by her parents, or caregivers overseen by her parents. In order to build a care “network” around Lauren that will provide the same level of care in my absence, it will have to have certain qualities.
It will need to be Stable – Lauren ‘s care requires physically handling her, performing very personal tasks for her, understanding how she communicates, and understanding her need to have the caregiver help her live her life. There cannot be undue turnover in staff and her staff needs to work as a team.
It will need to be Respectful – Lauren is a daughter, niece, granddaughter, cousin, and friend. But most of all, she is an individual who deserves the same respect and consideration that every citizen in this country deserves. She has always been included in her community and must continue to be allowed to live a life where she is valued.
It will need to reflect Love – The care that Lauren has received all of her life has come from a place of love. She is and will always be my baby. I watch my eighty-eight year old mother with my sixty-three year old brother and muse, “Wow, she still thinks of him as her baby!” Intellectually, of course, we know differently. But, emotionally, the love that we felt for our babies never changes. Maybe, for those of us whose child never outgrew many of the care needs that they had as infants, we feel it even more. Even if her caregivers do not love her as I do, their care of Lauren must reflect the knowledge that she is loved by others.
I need to build a care network around Lauren that will be successful in my absence. Oh, I will most definitely still be around. But, the network must be developed bearing in mind that I won’t always be around. I feel that the quality and security of Lauren’s care thus far reflects my constant oversight and influence. I need to replicate that. One person came to mind that had all the qualities and skills necessary – Lauren's current first shift caregiver, N. But, we needed more than just a caregiver, this person needed to be someone who could share her life, oversee the quality of her care, and basically be my surrogate. N has agreed to take on this role. And, N comes with a bonus – her wonderful husband, L – who Lauren adores. N and L are in a place in their lives where they are ready for a change and have agreed to move into Lauren’s new home and be her housemates.
N will continue as Lauren’s first shift caregiver, do some overnights, and supervise staff and Lauren’s home. Lauren will continue to have a second shift, and weekend caregiver. And, we will add an overnight shift a few nights a week. Even when Lauren is sleeping well, you do not sleep as you need to because you are listening for sounds of a seizure or distress. I will never ask anyone to do what George and I have done for twenty-five years – sleep with a baby monitor every single night. L will join in Lauren’s care as he oversees the “mechanics” and care of her home, and will continue to be her supportive “buddy”.
Putting together all of the pieces of Lauren’s future, for the most part, has taken creativity, knowledge, and a calculator. However, finding the perfect someone(s) to step into this very special “housemate” role took far more. It was nothing short of a blessing, a gift, a touch of grace that has so infrequently been part of Lauren’s life, that we found who we needed, already a part of our lives.