Thanks to FTD – (un)Happy Birthday! Cheers! (with just a little dash of sarcasm)

Birthdays don’t have the same meaning once FTD takes a hold. For you or your loved one. Somehow the apathy, lack of insight and total indifference to anything once joyous overwhelm all concerned. Despite best efforts, it is difficult to enjoy those high days and holidays (more to come on that topic in the next couple of weeks).

Anyway, tomorrow is my birthday. My birthday three years ago was a significant turning point in our lives. Not least my husband’s. It was the last day he spent at our home. At three o’clock that afternoon, after waiting around the house all day making phone calls, faxing papers and hiding my anguish, I took him to an inpatient psychiatric unit where I left him, never to return.

So, as hard as I might try, it is difficult for me to “celebrate” the day of my birth anymore. The day comes tinged with sadness and a sense of disbelief that it was three years ago. A feeling of shock that I actually went through with it and took him. Despair (still), that I had to do it for the sake of all our safety, not least his. You may come to (or already have) a similar point in your FTD journey.

It is such a personal, individual moment, just like a birthday really. It belongs to you and you alone. Your feelings as you take those steps to changing your lives forever will be unique to you. Painful, baffling, fearsome, but unique. For me, that turning point shaped the next three years and still does to a certain extent.  If you have been together for a long time, as many of us have, or your FTD’er is your parent, making the decision to move them out of your home is devastating. Then, once the decision is made, you have to actually do it. That’s the kicker. Physically taking them and knowing they are not coming back. They are blissfully unaware of course. Well, if you have played your cards right and not told them. Please don’t tell them. Don’t discuss it with them. Don’t ask them. They are no longer your partner in these kind of decisions. You have become a parental figure and must make these agonizing choices for them now.

They won’t like it of course. Anything that changes their routine, their comfort zone, will not be popular.  That’s why you are not going to run it by them for approval. It’s like choosing your child’s elementary school. You don’t really consider their preferences when they are five after all. It’s the same for your FTD’er. Not capable of making informed decisions or good choices.

You may find it hard to find a “good” place. Of course “good” is an entirely subjective term. A psychiatric inpatient unit is only a temporary measure. After that you will need to find a more permanent residence.  One of the most difficult things is not having the person who previously shared these decisions with you at your side. Hopefully, you have a family member or good friend who will help you. Someone who can remain objective and is not swayed by the emotion of actually doing what you’re doing. Rushing around town to look at suggested places is, at the very least, stressful.

You don’t really know what you’re looking for or at. You don’t really want to do it, so you still hang on to the faintest hope that even now, there may be, just may be, the possibility that it will all be ok and you can take them home after all. Depending on where you live and how much financially you have to contribute, there are other stressors too. Finding $6-8,000 a month is no mean feat. And believe me, not everyone has your best interests at heart. Don’t assume that because they claim to be healthcare facilities that they actually care about you or your FTD’er. It’s big business, residential care.  Choose carefully and don’t give in or give up. Don’t believe everything you are told and don’t settle. Make it very clear from the outset that you know what’s what (even if you don’t, you will find out). Speak authoritatively and make it clear that you are the one in charge of your FTD’er’s care and they are merely working for you. Which they are. And for $6-8,000 a month, they’d damn well better be good.

So, now you’ve actually got them to their new digs – now what? What does that mean for you? Thanksgiving 2011 was a quiet affair in our household. We spent the day at home, each of us internalizing what had happened and thinking about how things were going down at the psych unit. I called of course, but my husband was still raging and unable to understand what was happening. He was quite dangerous at that point, throwing furniture and trying to escape at every opportunity. After a few days of medications, we were able to visit and talk to him on the phone. But he never understood that he would never come home again. So, for the person with FTD, the transition from home to residential care means change, uncertainty, fear and insecurity. All the same things it means to you. Your life has taken on new meaning. New horizons.  A different life.  Regardless of your relationship before, moving your FTD’er into care is unsettling for everyone. But it has to be done sometimes for safety, for peace of mind.

So, my birthday brings mixed emotions. My husband’s birthday is ten days after mine. This year he would have turned sixty. The fact that many of our friends are celebrating this milestone too over this past year and into next brings feeling of envy and sadness. The parties, the cruises, the trips and other celebrations all serve to remind me that we will never experience those things together again. I am happy for them of course and don’t begrudge them any of it.  I just miss my darling at this time of the year more than any other. From October to January, we had our anniversary, both our birthdays, and his favorite time of year – Christmas and New Year. So, I approach this upcoming holiday season with more than a little heaviness in my heart. It’s my favorite time of the year too, at least it used to be. I still like it but it no longer holds the same excitement.

So, Happy Birthday to both of us. I’m sure that wherever he is, he is raising a glass of something in a toast.

Is there anybody there? OH YES!!

In the last few weeks, I have been looking around and finding other blogs and writings about FTD.  I was amazed at how many of you are out there! And excited too. It means that awareness is on the increase. It means that more people are shouting about it.

I have been moved to tears by more than one account of the daily life of a caregiver for a loved one with FTD. I am amazed by the strength, the courage and the tenacity with which these people hang on to the fragments of  someone who is so dear to them.

I want to reassure, hug, make it all right. But of course I can’t.

I want to tell them it will all be ok, that their sacrifice will be worth it in the end. But I can’t.

In the year that has passed since the bastard disease stole away the last vestiges of my husband, I have become aware of a growing movement. Dementia is in. The ‘aging population’ as we are known – Boomers, the Sandwich generation, call us what you will, we know it’s around. We don’t want it.

We look for ways to avoid it. Diet, exercises, brain games. You name it. We will go the ends of the earth to avoid it. Alzheimer’s Disease is becoming the plague of the 21st century. But there are other plagues that chip away at the brain. Frontotemporal Lobe Degeneration, Pick’s Disease, Primary Progressive Aphasia, Behavioral Variant FTD. A positive myriad of acronyms and initials.

And that’s before we even start on the physical conditions – cancers, other neurological conditions – Parkinson’s, Motor Neuron Disease, diabetes, obesity. The list goes on and on. No single thing is more important than another. Until it happens to you. Then it becomes your life. Your whole world. The new world replaces the old one.

The world of the caregiver – and I can only speak from watching people through my work and my own experience – the world of the caregiver of someone with FTD is strange. Other caregivers may compare it to their own life. And I’m not saying it’s worse or better. I’m saying that it’s unique, mainly because of the young age of the affected person. FTD and Early-onset ALzheimer’s Disease affects people as young as thirty years old.

It’s hard to advocate and lobby for a single group of people. Everyone thinks their cause is the most deserving.

Because they are closer to it.

Because it touches them every day.

You might think that would make them self-serving. Uncaring of the plight of others. You would be wrong. Because they all know how it is for anyone who cares for another human 24 hours a day, 365 days a year. They are kindred spirits.

I am truly humbled by what is going on out there. I took care of my husband for three years before the kindness of others allowed me to spend time with him, loving him, being his wife instead of his caregiver.

People with FTD need people who understand and love them. I have been reminded of this during my excursions into the blogging world.

Raising awareness is another tool we can use to fight the bastard disease. The writings of caregivers give us insight into the progression of the disease. Not just the disease, but the love that goes into every day.

The love that overcomes the frustration, the anger, the resentment. Right now, it can’t conquer the disease, but it will not be for lack of trying.

 articles

• Help for Caregivers in the Form of an iPhone App (homeinsteadetobicoke-blog.com)
• Dementia striking 30 year olds (Video) (examiner.com)
• Pages of Pain (lynnbowerdementia.wordpress.com)

FTD the magician, now you see them now you don’t. MIA but still here – handling the Black Hole.

Perseus Black Hole

Photograph courtesy NASA/CXC/IoA/A. Fabian et al.

It has been a year now. A year of missing. Missing my husband, missing my life, missing what could have been. Should have been.

There is a hole in the fabric of my life. A hole where there used to be so much love. Love is still there of course, around the hole. Love from the rest of the people who fill your life.

But the hole seems bottomless. A deep dark hole. A Perseus galaxy – grade hole.

Not to be depressing but even after a year I’m not certain it can be repaired. I’m not depressed, just realistic. I’m actually quite happy considering. Not happy that he’s not here anymore, but okay with my life. Comfortable in my pain. I  can control it now. Can visit it whenever I like without it being overwhelming.

The hole starts to develop of course even before the end of life. My husband was MIA for quite some time before he actually left this mortal coil. The hole starts as a little fraying around the edges. Day by day a few more threads fall off. The speech, the emotion, the insight. Never the love though. At least not in our situation. The love continued until the very end. Even when the hole was huge, the love was still there.

The beginning of the disappearance was insidious and slow. A word here, a word there. An odd look or gesture. And so it began.

How you handle the decline relies largely on your relationship in the first place. If you learn about what is to come, it is still not pleasant, but at least you know what you’re dealing with. Don’t hide from it. It will find you. The bastard disease, as I came to call it, cares nothing for your love. Cares nothing for the hours, months and years you have spent loving, arguing, kissing, irritating, laughing. Cares nothing for history. Or for present or future. Just steals everything away. And puts it down the hole.

So many people tell you things. They tell you to “take care of yourself”. They mean it too. You want to, but the bastard disease gets in the way. Taking care of yourself requires effort and energy. These two things are in very short supply when you are taking care of and watching out for someone else’s interests.

Handling the Black Hole is tricky. So much depends on so many things. Finances, work commitments, family, your own weariness.

• Once you succumb to the bastard disease and accept its power, you are able to move forward through hard times.Not easy, but doable.
• You have to accept its omnipotence and inevitability. Your human spirit will still twinkle with the tiniest spark of something. Maybe hope, maybe denial. Just like a hole in the fabric of space.
• Be realistic. Don’t expect too much of yourself. Heroism has no place in caregiving.
• Don’t make yourself visit a facility just out of duty. Take a day off for goodness sake. Especially if your loved one doesn’t know you’re there.
• Let go of guilt. That one’s easier said than done I have to admit.
• The missing begins long before they are gone. It starts when they no longer call you by your name. I was “Wife” for quite a while. It happens on occasions that you used to enjoy together – holidays, sporting events, family gatherings.
• You will miss even those irritating little things that you couldn’t stand but put up with because of love. You will miss just calling during the day to talk about how yours is going. Watching banal garbage on TV because you’re both too tired to care what you’re watching. Missing stupid stuff that doesn’t seem stupid at the time – just normal.

So, a year on, the feelings of  missing are still there. The bastard disease is gone, but so is my husband. The hole isn’t any bigger, but it isn’t any smaller either.

Last weekend, we had a small family gathering in celebration of our son’s 30^th birthday which happens to coincide with the anniversary. I hate that he has to celebrate his life’s milestones on the anniversary of his Dad’s death. Our small family group did fun stuff and hung out together like families do. We played games, went out, enjoyed each other’s company. The hardest part was trying not to think about those last few days one year ago.

We were all aware of the hole. But we included our missing member by remembering and talking about him. Not in a morbid way, but lovingly. We have to think back a few years and remember the times when we were not missing anyone. Make fun of things he did before the bastard disease took over. It wasn’t easy, but these things never are.

We love you, we miss you, we will never forget you.