I have a future that I can’t plan for. Sometimes it keeps me up at night. Not often, but when it does, it takes me a while to shake it. Talking about it helps, and since I can’t really talk about it, writing about it is the next best thing.
Just before Christmas my husband had his 6 month check up with the Dementia Specialist. He is actually a Geriatric Psychiatrist and my husband should NOT be seeing him. We will be celebrating his 50th birthday in 4 weeks. It makes me want to to punch, thrash, scream, and stomp my feet. Inside I am frustrated and angry, although I am trying hard to control it for the sake of my husband and my precious children. They have to be my top priority.
Every time we go to his appointments I hold my breath and pray that everyone- yes I get it- specialists, have made one very horrible mistake and that he will recover, or at least not decline. I pray that his life expectancy has increased and that my husband is not dying.
The good news is that he has not progressed as quickly as the doctor expected. He is not a “typical” anything and has always been characterized as “complicated”. Why should I be surprised? In fact, the doctor said that he seems to have more symptoms of Chronic Traumatic Encephalopathy (CTE), which is a brain condition associated with repeated blows to the head. This got me excited and I let myself get my hopes up. Mistake.
I researched. http://www.alz.org/dementia/chronic-traumatic-encephalopathy-cte-symptoms.asp#diagnosis. It wasn’t a huge improvement to the old diagnosis, but it sounded a little better to me, and I began to feel hopeful. I shouldn’t have.
It seems that in the Dementia world, there is a whole lot of guess work and from what I understand, specialists will not know for sure what the diagnosis is until they perform an autopsy.
The bottom line is that he may have a combination of dementias: most likely CTE and FTD since the PET Scan and testing is more suggestive of Frontotemporal Dementia. I need to accept that the progression is not going to be predictable. Progression may be very slow, he may have periods of more rapid decline, or long periods of stability. Nobody knows and every person is different.
The latest change is that he seems to be having seizures. It looks like a stare. He doesn’t blink and I cannot get his attention. Last time it happened in church. I worry that it will happen while he is driving. As a result, he has agreed to stop driving and I agreed to no more testing and no more getting my hopes up. This means I have to accept the diagnosis and leave him alone to just live for however long he has left.
This means that I have a future that I can’t plan for.
What am I going to do? I cannot keep the house, even though in 12 years it will be paid for. I will not be able to afford to pay bills on my income alone. This means that I will either have to have a roommate(s), rent out the house, or sell it. As long as he is home and alive, we have his SSDI. So the goal is to keep him home and rely on family and friends to help me so that I can keep working. I must keep working.
He is already quirky, but he’s always been quirky. It’s like a magnifying glass is over him, accentuating his deficiencies. If this thing is CTE, the average life span is 51. If it is FTD, the average life span is 7 years from diagnosis. This means we have about 4 years. Will it be quality time or will we sit in silence? Will he be able to care for himself or will we have to care for him like a child? Will he become aggressive with me like he has been with the dog? Will people remember that we are on the hill alone and in need of help? It can be pretty lonely up here…and I am scared of the the future that is not what I imagined, dreamed of, and looked forward to.
What am I going to do? I don’t want to go on without him.
This is how I felt before church today. Have you ever noticed how church services often hit you right in the heart? The message today focused on PEACE. Colossians 3:15 tells me to let the peace of God rule in my heart and be thankful.” Matthew 6:25-34 reminds us that God takes care of even the wild animals. Why wouldn’t he care for me? When I worry, I am not relying on God or believing that he will take me through the valley. Matthew 11: 28-30 pleads with me to come to God so that he can make my burden light and allow me to rest.
I am not going to lie. Sometimes I am filled with overwhelming terror and then the peace that passes all understanding washes over my heart (Philippians 4:7), I get some reassurance from those that love me more than I understand, I see the blessings again, and am ready to face yet another day. One day at a time.