This Takes the Cake, and the Pie, and the Cheez-Its

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This Takes the Cake, and the Pie, and the Cheez-Its

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drop-of-water-401326_640I have had a rough 24 hours. I wanted to post this here, because what happened to me can happen to any of us, and I want everyone to know they can rise above this.

On Tuesday, I took my husband to his previous place of business to give them the COBRA check, as we always do, once a month. He gets to visit for a few minutes and it seems to make him happy. On Wednesday morning, I got this correspondence from his employer.

"Sharon-
In seeing Rod yesterday, so many people here were upset after he left. A few people this morning are still talking about it. It is hard for us to see him self destruct as we all really care about him. To gain that much weight in a few months is just a death wish on his part.
It seems like he has giving up – if he has an estimated 10 years, it could be 15 years – who knows if any medicine will evolve over time. But if he keeps up like this, he will only have a few years.
Please consider taking all the food/beer money going towards him and getting him some help - counseling (giving him back his will to live), dietitian, and joining a gym. You will need to take on a parent role (as you already have in many areas) and he will fight you on it. But if the food/liquor is not in the house, he will have to eat what is available."

After much crying, screaming and anger, I wrote this response:

"Linda:
I appreciate your concern for Rod, but I think you may need some additional information.
Rod has an untreatable, incurable, progressive, terminal brain disease. Although progress is being made in Alzheimer's, not much is being done on the frontotemporal degeneration front, due to the rare nature of the disease and lack of contributions to such a rare disorder. If they found a way to prevent this disease, it is too late for Rod, he has lost parts of his brain, they can't be regenerated.
FTD is a difficult disease for healthy people without first hand experience with it to process. The patients look the same. They have the same voice. But the essential 'they'-ness is gone. They are not self-destructing, rather, their brain is quite literally wasting away, and precisely at the place that contains the brain cells in charge of caring. No amount of counseling will bring those brain cells back. No medical breakthroughs will bring them back. They aren't 'sick' brain cells -- they are dead and gone. It is a degenerative disease, a neurological one, not a psychological one. And, unfortunately, well-intended but misinformed advice only puts added stress on an already stressed caregiver by implying that his symptoms -- which the experts at Emory agree are the symptoms of his disease -- are somehow brought about by something I did.
No one misses Rod more than I do. No one wants him back the way he was, or happy, or full of joie de vivre the way he used to be as much as I do. I promise you that if there were a way to make that happen, the expert doctors, nurses, psychologists, and social workers at Emory would have already discussed it with us, and I would make any and every attempt to make it happen. But it can't. It won't. that's a sad reality, but it is a reality, and if I get two more good years with Rod, I'll be glad of it.
My goal is to keep him safe and make every day happy. My goal is to make our home as peaceful and accepting as long as humanly possible. It is why I travel with my 94 year old Mom and Rod, who can get quite frustrated in new situations, because I want him to live as happily as he can for whatever time he has left. He is not giving up, he is enjoying what he likes. If Rod died of a heart attack tomorrow, those of us who love him the most would be very happy. We would be happy that he did not lose his ability to speak, that he would not become incontinent, that he would not wander off and get lost, he would not need to forget how to swallow and die of starvation. Making Rod's body healthy, will do nothing to cure his diminishing brain.
He goes to a premiere center for FTD, Emory. All of his care is managed there. I refused to go anywhere but the best possible place for diagnosis and symptom control available to us in the area.Rod is no longer Rod. The Rod I married is gone. I will be here to care for him, fight for him and protect him every step of this journey.
If you want to help Rod, donate to AFTD Business Partnerships. Spread awareness of this horrible disease that robs people of their personality, their dignity, their life. Educate people to be kind to those with dementia causing brain disorders. To not assume that someone yelling in a restaurant or grocery store is a jerk, they may have FTD and have no control over what part of their brain has died. Reach out to caregivers who isolate themselves because the public treats their loved ones with disrespect and lack of understanding. Push communities to become dementia friendly cities. Dementia is not contagious. Dementia slowly robs a person of themselves.
Rod is in very capable hands. I have learned everything I can about this disease. I have talked to experts in this field around the world. I take the sage advice of those who know about this disease. I attend support groups for caregivers. I go to facilities and educate them on FTD. I started a new support group so people do not have to travel to Emory, but can attend closer to home. I took Rod to the AFTD conference to learn and for him to share with others with this disease. I have started a podcast with an expert in the field to help caregivers understand how to handle this disease. I have done my research. I know this disease. If you want to learn about FTD, let me know, as I speak to groups to educate them on how to detect this disease and get proper diagnosis.
Rod has not given up, his 10-year comment is being VERY optimistic, most die within 2 years. He already has lost the ability to understand conversations, as his comprehension has fallen to 50% of the spoken word. His brain is deteriorating in the temporal lobe which controls his language center. No one knows how long or when parts of his brain that control bodily functions will erode. That is why he lives every day to its fullest. WE live every day to its fullest. If sitting and watching movies on his Kindle while eating his Cheese Its makes him happy, that is what he will do.
I encourage you to place the energies of your concern into education and awareness. I appreciate -- more than you know -- how much you want the old Rod back, even if it is just a piece of him. But he isn't coming back, and we all have to mourn him in our own ways. If seeing what dementia does to a person is too much for people there, I will be happy to come with the check by myself and leave Rod with a friend."

I then received this back from her:

"I know about the disease as a relative had it. That does not mean he has to eat himself to death - he will probably die from complications due to obesity as opposed to his disease. As you know, there are thousands of people with limited time left. They do not sit on a couch all day and eat to die. They make the best of their time left. It may make him happy to eat all day now, but he will not be happy when he has a heart attack and has organ failure and is stuck in the hospital for weeks or months.
It is really none of our business here, but we just care about him and to watch him eat himself to death is really sad and was just hoping he could get a wake up call and have a healthy life with the rest of his time - if he keeps going, he will not be able to do anything and will end up bed ridden for a few years and/or in an institution and you will certainly not be able to handle him at 400 lbs.
I was just putting in words what our employees said. We know he has mental challenges as you addressed below, but was just sad seeing the physical part of him in such bad shape."

I am posting this to this wider audience because as someone pointed out to me, if this had come to some people, they might have taken it to heart and decided to end their life.

I want you to know that these ignorant people exist. I will never take Rod there again, we will be sending our checks certified mail (they can't be sent to insurer, I tried going that route) and I will never speak to these people again.

Please, if you are ever confronted with this type of behavior, come here and lean on the wonderful caregiving community. They propped me up, hugged from afar, and supported me in ways that I have never known.

YOU ARE NOT ALONE. DO NOT ALLOW TOXIC PEOPLE WHO HAVE VERY LITTLE INTELLIGENCE TO AFFECT YOUR LIFE. NO ONE KNOWS YOUR CIRCUMSTANCES.

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Denise

I'm just so sorry, Sharon. I just can't understand why she thought her letters were appropriate in any way. The saddest part is that you and Rod just can't go there any longer. And, that's too bad. You both need love and support from all sources and all places. It's really just a shame that they don't understand that.

Goldie

Wow. And this is an employer? She obviously doesn't know how to read. \r\nHer comments_mysql are so out there, it's not hard to rise above it - intellectually anyway. Emotionally, I'd be ready to go down there and yell. .. and probably do more harm than good. You did well.\r\nI remember having challenges when our daughter was battling selective mutism. It didn't matter how many times I explained to some people that they needed to not call attention to whether our daughter was speaking or not, I'd still hear a teacher call to her in the hallway, \"When are you going to talk to me?\" \r\nSome people just never get it.

Anthony Zullo

Sharon,\r\nI'm so sorry these people have no clue what's going on even if they say they do.\r\nI totally understand this even though Tony didn't have the same diease .\r\nPeople thought Tony's problem was his weight not all the other stuff he had wrong. No one knows unless they're in the same situation. Even Tony's therapist couldn't grasp what was going on until her father became very ill and she had to step up and become the caregiver.\r\nSharon you are doing a fantastic job,you can be very proud of yourself.\r\nIn the meantime one day at a time and live and love in whatever is best for you.\r\nPrayers and thoughts with you always.

EllysGdaughter

Oh No THEY DIDN'T!!! I can't even fathom the restraint you must have had to write back!!! You are the kindest, most humble person I know!!! Sharon, I can't even think about those kind of ignorant people. Thank you for pointing them out and giving us the warning. Just can't even think how I would have responded....You are an amazing advocate!!! Lots of ((HUGS))!!!!

jan

So sorry and so sad to read this post. There is nothing I can add, except to say I support you and Rod where you are, right now,

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