FTD – Happy Anniversary, you bastard

wedding photo

Today is the 38th anniversary of our wedding. In 1976, we were bright-eyed and eager to see what life had in store for us. I am so glad we didn’t know that FTD was going to invade our lives and destroy what we had built for thirty-six years.

I cried today. That’s not really unusual. I was sad and my dog brought me his bone. That made me cry. I guess it wasn’t far away, under the surface and that simple act of innocent kindness brought it out. It was then that I realized that our anniversary is still significant to me, even though my husband died two years ago. I realized that nothing –time, distance or circumstances will ever change that. People ask me if I’m dating – “You’re still young!” and look at me strangely when I say that it never crosses my mind and I don’t see a time when it ever will. Spending almost forty years with someone that you love so unconditionally and they you, makes that unthinkable.  The things one has to do and endure when caring for someone with FTD  have somehow made me more detached from reality. I can engage in the stuff of life – fun, laughter,smiles, sadness and joy. But I am so changed by my experience that I am almost a different person entirely than that hopeful, full-of-dreams girl that I was in 1976. People have been on the receiving end of this new person and are sometimes shocked I think, by how different she is from the old me.

FTD destroys lives and dreams. But it never destroyed my love. Somehow, I was able to separate the love from the horror. At times, it was as if everything that was happening was not happening to us. I have written about love and FTD many times. It was a driving factor in my FTD experience.  I cannot imagine how I would have coped without it. My own love for my husband, the love I knew that he still felt for me, even though it was masked by the bastard disease, and the love I had for our family as I witnessed their pain. The journey was like walking a path to a destination you never want to reach. As painful as it is, you know that reaching the end will be even more so. And there is nothing you can do to stop the relentless onward march towards your destiny.

In 1976, I imagined my destiny to be somewhat different. White dress, first waltz, flowers and cake. Handsome husband, first home, fun, fun, fun. He only forgot once, after about 3 years. He remembered after he had dropped me off at work. I got the best bouquet and champagne dinner that day 🙂

A year before he died, FTD made him forget too. The bastard disease created another hole in his brain and our anniversary slipped through. That last anniversary we were together, our son came round with a card for us and my husband was devastated that he had forgotten. So my son gave him the card to give to me. That made him feel better that he thought I thought he’d remembered.  Even in the depths of his confusion, he felt the love. One month later, he moved into his first residential home and ten months after that, he died.

Of course, the thirty-eight years were not all fun, fun fun, even before the FTD. We had challenges, just like everyone does. At first, when FTD came along, we carried on as ‘normal’. As you know, the onslaught is so insidious, it is shocking at times to realize that things have changed. Then suddenly –Bam! Your groom/bride can’t speak properly anymore. Or they’re hiding things, or spending all your money. You are inexplicably broke and getting thrown out of your house. Or you are bailing your loved one of out of jail. Thankfully, those last two things did not happen to me, but they do to someone who cares for a person with FTD. The bastard disease has a blatant disregard for propriety, respect for others or socially acceptable behavior.

When you make those promises -“In sickness and in health”, wedding-rings-on-handswhen you’re twenty years old, you don’t really understand exactly what it is you’re signing up for. So when the ‘sickness’ is FTD, those promises are really put to the test. But for me, it was not something I had to think about. Maybe I have innate qualities that I didn’t know about, I’m not sure. But I really don’t think I did anything heroic, or anything that all of you are not doing for your loved one.

So what is the point of my blog today? Other than catharsis, I wanted to share how FTD has uncovered things about me that I didn’t know before. In 1976, I wasn’t a nurse, wasn’t a mother, wasn’t a wife until October 30th. I was twenty years old. No-one even knew what FTD was then. I’m glad I didn’t. I guess the point of my writing today is to try to impress upon you how important being in the moment is. Usually I try to offer some kind of encouragement and advice about how to handle your own and your family’s emotions amid the turmoil of FTD. I don’t think I can do that today. Because some experiences and emotions are so personal and unique, that to tell you how to handle them would almost be an insult. You are you, I am me. I just told you that I am not the me I was. I am irrevocably changed by experience. You will be too. The transformation has already started. Your metamorphosis into the post-FTD man or woman is already under way. You can’t stop it,  just like you can’t stop the FTD. All you can do is go with it. Watch in wonder as it appears. I wish I could liken it to a beautiful butterfly emerging from a chrysalis. But I can’t. I can’t promise you will be a more beautiful you –outside or inside. But you will be different, that I do know. Your life will emerge as something completely new. Post-FTD, without the stresses and strains of the practicalities of caring for someone with a debilitating, terminal condition, you will probably be baffled as to who and what you are.

I wish I had an answer. I may never know the answer. I don’t even know if there is an answer.  I am full of admiration for those of you who are still doing what I did every day. My heart breaks for you because I know what is to come. Now I know. I didn’t know in 1976, thank goodness. I was able to have a full and happy life and marriage. We had many champagne moments. I am so grateful for that. My life is still full. It’s full of sons and grandchildren and other family members. I have grown closer to all of them as a result of what we went through. Going back to an earlier comment ” Are you dating yet?”, all I can say is –why would I want to expose anyone else to what our family has been through? How could they possibly understand our pain. They weren’t there, they don’t know. It would not be fair to anyone, an outsider if you will,  to expect them to understand.

I make no apology for the somber tone in my post today. It’s a sad day for me. Tomorrow is a new day and I will bounce right back and be the new me again.  These days are a reminder of what once was. Of what I had, what we had and did. So it’s all good. I have wonderful memories. Even some of my FTD memories are good or at least funny. But there are many more non-FTD memories. From 1976 until 2012, it was a terrific ride. From 2012 until today, I have been able to reflect and rebuild.  FTD could not take that away from me. I may have been down, but never out. My husband loved the feisty me. She’s still around as everyone around me will attest. Bastard FTD. Ha! Couldn’t take that away.

My husband loved champagne. We drank it at every opportunity. I will be having some later.

Happy anniversary to us.

love champagne

FTD – You deserve it!

No, of course I don’t mean you deserve to have or deal with FTD.

No one deserves the misery that is wrought when the bastard disease comes a-knockin’ at your door. But you deserve the truth. FTD will steal your life. It will steal your loved one’s mental being and by doing so, take away all that you hold dear.

Speaking of what we deserve, it has been some time since I was in the thick of dealing with FTD. Two years in fact. But in the last two years, and for about two years before that, I over-indulged myself to try and combat the horrible feelings and emotions that FTD generated in me. Over-indulged not with food or alcohol, but things. Like having more things would somehow make me feel better. Shopping and indulging myself. Buying “something nice” for myself because my husband could no longer do that for me. There was a sense of entitlement -“you’re going through a rough time”, “treat yourself”, take care of yourself”. It was all ok. If your husband/wife/partner/friend/parent is mean to you because of their FTD, you have the right to eat/shop/spa/pediwhatever.

At least that was what I thought then. It continues, but I am getting better. shopping

I think twice now about buying things I don’t really need. Even begrudge paying money for things. It got to the stage where i would be shopping and I couldn’t even think of something to buy that I didn’t already have. How ridiculous is that? Not that I am a millionaire or anything. I only bought things I could afford. I wear all the clothes and shoes -honestly! I didn’t go into debt to buy things. 

The “deserving” even extended to my behavior. I felt like my irritability, or thoughtlessness, or sharp tongue would be excused by the fact that I deserved sympathy because of what happened to us. I was wrong. No one that I behaved that way towards deserved it. There are no excuses. I’m sorry.

But I do feel that in the midst of the crisis, you deserve a little leeway.

You deserve whatever smidgen of a smile that someone or something throws your way. Grasp it with both hands and hold on for dear life. It has been said that we cannot let each case of FTD take two lives – the one who has it and the  one who manages it. It will wear you down. you deserve better than that. Your loved one does too, but their needs are different now. You on the other hand, have to somehow maintain some kind of a life. Some kind of sanity amidst the maelstrom. It’s easy to get sucked in to the daily drama. The everyday battle between what you used to do and what is considered ‘normal’, and the reality that has now become your life. Constant accommodation of the needs of another is draining to say the least.

This accommodation is vital so that you can preserve some kind of order in your daily life. FTD’ers rely on habit and schedule. Sometimes they revert to old habits, but FTD has modified what they recall about their habits, so they might only partially do them in the same way, or do them completely differently. An example of this would be when my husband insisted on continuing to “maintain” (and I use the term loosely) our pool and yard. He had been taking care of the pool as it it were another of our children for many years. Once FTD took a good chunk of his brain, he kept the schedule but not the quality of the work. So, in order to accommodate his need to continue and maintain some kind of impression of independence and choice for him, I would let him continue his version of cleaning the pool. I would go out early on a Saturday morning while he was still sleeping and take care of the real work myself – sweeping, chemicals etc. so that he did not know I was redoing it. I would move inappropriately stored items from the kitchen cabinets and replace dirty items from the cabinets back into the dishwasher.

Another way I accommodated his dignity and independence was to surreptitiously give money to the assistant at adult day care and she would ‘pay’ my husband for his help that day, as he was leaving with me. He always thought he worked there and was helping people less fortunate than himself It gave him a sense of purpose, pride and humanity to give back in this way.

Wanting the best for everyone is not altruistic, we do all really deserve the best we can give and receive. I’m not talking about designer handbags or Mercedes-Benz here. Just the peace of mind that letting go of what we have previously considered our just deserts brings. We all deserve that. Accepting what is and relaxing about chores not being done or your loved one wearing weird combinations of clothes (or none at all) will bring you much more of what you deserve – peace of mind.

Peace of mind is priceless in the FTD world. Letting go of the need to maintain the old status quo as far as being houseproud, appearance-centric or proud of material things pales into insignificance if you can just spend that time loving and accepting the new stats quo. Having accepted belts and ties hanging from the bedroom curtain rod and cowboy boots filled with rocks outside my backdoor, it was easier to focus on spending as much time with my husband as possible. Yes, having to redo things is exhausting, but believe me, when it’s over, you will wonder what to do with all this free time you have now.

Accommodation does not come cheap in the emotional sense of the word. It is exhausting, but it is less stressful if you place less emphasis on those things that have little or no value to an FTD’er. If you accept their standards instead of enforcing your own. Their standards are not so bad really. Well, anything involving poo is. Poo is not counted in accommodations. Just clean it up and move on would be the best advice.

Your FTD’er, as you have come to know, is not like a child to whom you can teach good behaviors. They have many years of learned habits and behaviors that are hard to break. You can teach your five-year old that it’s rude to point, or speak with their mouth full, or not interrupt. But your FTD’er? Not so much. Their capacity for learning is pretty much gone by the middle stages. Reasoning and rationalization won’t work either. They can’t do that anymore. So don’t frustrate yourself by trying to explain something.

Make a plan, do what you need to do and don’t try to explain in anything other than the simplest terms. And tell, don’t ask. Instead of “Let’s go the doctor’s/grocery store/restaurant”, tell them “We are going out in the car”. Instead of “Could you please shower/put on your coat/eat your dinner?”, tell them “Get in the shower”. Don’t ask –tell.

You deserve to have the smoothest life possible. FTD will throw every kind of wrench into your plans to divert you. Keeping things as simple as possible will give you some space to keep things moving smoothly.

You deserve to love and be loved. You deserve to have the highest quality time with your loved one as is humanly possible within the FTD environment. Don’t expect too much. Be happy with what is. And if over-indulging gets you through the dark days, so be it.

.Macy's bags

Chocolate or Macy’s, choose your poison.

indulgence2