Report from the home

Today was the fourth full day at home. The transition has been tough for mom, dad and I. We are hoping once we get into our rhythm things will go smoother. We do like our main hospice nurse but have already fired our social worker.

At this point this is how hospice is working. We have a nurse, a nurse's aid and a social worker. The nurse comes over 2-3 time a week for 1-2 hours and the nurse's aid comes on different 2-3 days a week for 1-3 hours. The social worker was a joke and offered us little resources.

Yesterday seemed to be a breakthrough for mom. She even asked two of her friends to speak at her funeral. She did so without having a major meltdown. In fact, I do not think she cried once today which is a record. It warms my heart when I can see glimpses of mom feeling at peace with her life nearing its end.

I cannot keep track of how many people have come to visit her at the house. She of course is looking forward to even more traffic. I also cannot say thank you enough to all of her friends. Since hospice is not here around the clock, the visits from friends provides a HUGE amount of respite for my dad and I to do all of the things we need to in order to give optimal care to mom as well as take care of ourselves.

As I have mentioned in previous emails, mom has swam through the array of emotions all week. One minute she is breaking down crying fearing her impending death, then she is sweet as pie, then she is incredibly confused, then she is demanding and wants to crochet or quilt, then she tells a hilarious story and then she passes out mid sentence due to fatigue.

As of today Mom has slept for nearly 30 hours. She woke up briefly in a very confused state.

I learned today that it is not uncommon for this type of brain tumor in this stage for the patient to have a string of days of alertness and a string of days sleeping.

Our goal at this point is to assist mom with days filled free of anxiety, pain and discomfort while achieving the highest state of alertness. This of course is the purpose and goal of hospice care.

Thanks a million times over for the love and support that you are all sending in your individualistic ways.

Mom has tried to explain to me the intense and indescribable love she has for her children. I am not sure if it works reciprocally, but the other day when mom demanded me to snuggle with her in the hospital bed and as I curled up next to her and watched her drift off to sleep, I felt deep in my gut love for my mother that is so intense and indescribable. I suppose the love has come full circle. There is nothing I won't do for my mom (except look for fabric in her stash upstairs - that is what her friends are for) just as there was nothing my mom wouldn't do for me my entire life.