I love the Timehop application on Facebook. It allows opportunities to look back in time and reminds me from where I have come. This week, I was reminded that 5 years ago we received my husband’s cognitive evaluation from the Brain Center. We had escaped from civilization and were spending some time in Florida with our son and his family. We were just 48 years old. I remember feeling relieved that we had received answers, yet terrified.
A whole lot has changed since that point in time. We have met with many specialists, joined support groups, put our affairs in order, and learned a whole lot about the world of Disability and Social Security. We were financially fractured, and are only now showing signs of recovery.
There is a lot of sadness that comes with a dementia diagnosis. Honestly, I struggle with preparing to lose my husband and becoming a widow. My biggest fear is being alone. Yet, I know that it is going to have to be part of my journey. I fear the financial impact. Will I be able to sustain my standard of living on my own? I’ve spent 5 years trying to whittle down our debt so that when the time comes, I don’t lose everything. I don’t know where I’ll live, but I know I can’t stay on the mountain. It’s too much for me. My prayer is that the next family will love it as much as we have.
So many unknowns. I feel like he’s the weight to my helium balloon and when I lose him, I will become weightless and simply flutter off with no real purpose.
On average, people diagnosed with Frontotemporal Dementia live for 7-8 years from the time of diagnosis, and his diagnosis was retroactive to April, 2013. Every person is different because they all have their own unique medical tangles. My man is what doctors label as “complicated”, so this means that on average, we are down to the last couple years.
That being said, we have been absolutely floored with what he has been able to do this summer. He decided to build on to our north deck and repair the front steps. He watched some YouTube videos and then designed an absolutely gorgeous deck. It was totally not in our budget, and will take us a very long time to pay off, but it is absolutely amazing. He’s still putting on the finishing touches, but it looks incredible!
These are the repaired front steps with a railing.
This is the addition to our north side.
What impresses me most, is that despite obvious deficiencies, he is still able to do what he loves. He doesn’t recognize most people any more, although he can tell stories about them as we pass by their homes. He has not been able to tie his shoes or drive a car for years. We can’t take him out for long periods of time, because he tires easily. When overstimulated or overtired, he becomes debilitated- shivering, rocking, stuttering, and staring. Yet, he can still mow the lawn, fix the car, repair the porch steps, and build a deck. He cleans the house, washes dishes, and does the laundry.
I am honestly in awe, and I thank God for His blessings. Mostly I thank Him for His mercies and providing clarity so that my husband can still do what he loves to do best. The more we can keep his mind active, the longer we keep him with us. I’ll get the Home Depot card paid off eventually, because what this has done for my husband, far outweighs the debt. I just want him to be happy.
And he is.