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Holding Us Up
Jul 24, 2018 Latest post:
Mar 21, 2019
For the last few days I've been walking around in crisis mode. I consider myself a fairly strong person and even I am feeling the immense weight of this journey. Our beautiful family started almost 14 years ago. Brian was the most generous, kind, stable, loving man I knew. He was fun to be with and loved being outdoors. We fell in love, married, had a few adventures and then began our family. A few years ago everything began to fall apart. Eleanor was diagnosed with a beastly chronic illness and was in and out of the hospital, Brian lost a great job he had for years, and our marriage was really struggling. Brian deteriorated fast and was totally unwilling to go with me to see a doctor. Fairly soon after that he stopped leaving the house, stopped seeing friends and family... I felt like I was losing him, and I was. We were divorced a few months later and he had to be escorted away from our condo so I could sell it (he was never angry, never violent, always just very confused and refused to see that anything was wrong). Eleanor was incredibly sick through all of this. We moved in with my cousins for a few months and she was hospitalized every few weeks. I knew something was wrong with Brian psychologically, but I still felt rejected, brokenhearted, scared and alone. He went and lived at his Mom's house for about 6 months and continued to deteriorate (and continued to refuse to see a doctor or go to a hospital). His sister and I forced him to an ER about 15 months ago and they stated that he was indeed psychotic and likely schizophrenic. We asked about a brain scan and they said it was not necessary. Brian has spent the last 15 months living in a nursing home for people with severe mental illness. I visited once or twice a month. Eventually I would cut his nails and change his clothes. He was so, so sick. I hung pictures of the kids on the cold, institutional walls. I brought him a weighted blanket thinking maybe that would help calm him. I brought a small musical Christmas tree. I brought all his favorite treats and chips and soda. And I begged his family to help me get him on social security incase we could get him better psychiatric care. And then things got worse. A few weeks ago I noticed that his weight was declining at a much faster rate than ever before. He also had bruises from falling and being hit by other residents. Then two weeks ago he had a scary choking incident and the paramedics had to be called. Once again his sister and I said, "Enough is enough! Something else is wrong." We demanded they bring him to a hospital so that we could get a full medical workup. The news was terrible. His brain was severely deteriorated. He had been misdiagnosed. He has a terrible brain degeneration disease called Frontaltemporal Degeneration. It likely started 7 or 8 years ago and there is no cure. The fact that he refused to get help is a typical response for those with this disease, according to the neurologist. Worst of all, he will die within the next few months, maybe a year, probably not much longer. He is in the end stages and was put on Hospice.
As you might imagine my heart is broken into 10,000 pieces all over again. Each day has been a rollercoaster of emotions. I feel guilty that I didn't spend more time with him. I feel terrible that he was living in a run-down psychiatric home for more than a year. I am incredibly sad for my children, who are crushed and confused. And I am unbelievably sad that the love of my life is dying.
And still there are moments of gladness. I am glad that the good memories feel 100% good again. I'm glad to know that he truly never rejected me or the kids, he was just THAT sick. I am so glad that we can be with him in these last few months until he is at peace. I am glad that I never told the kids how mad I was at times. I consistently told them that Daddy's brain was sick and that he really did love them very much, he was just too sick to show it. I am glad that he can die with dignity and that I can hold and protect him as he goes.
One day at a time, sometimes one hour, sometimes one breath... we will get through this because of all of you and because of the strong memories of a husband and daddy who passionately loved us while he could. I will be posting here as our journey continues. Thanks for caring about Brian!