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

eeyore birthday

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. mazeYou 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.

love champagne

TGIF! – Not in the world of FTD…….

So, Friday has rolled around again. The weeks go by so quickly, it’s hard to keep up sometimes. When you’re floundering around in the quagmire of FTD, one day flows into the next, with little difference between Tuesday and the weekend. So, just like the Dowager Countess from “Downton Abbey” you don’t even really know what a weekend is anymore. Of course, her excuse was that she had never worked her whole life, so there was no reason for a division between the days of the week. For you, living with someone who doesn’t even know what day of the week it is, will make you feel that it is irrelevant too.

Time is often irrelevant in our FTD world. It is meaningless to our FTD’ers, and our own timekeeping is reduced to when the next meal/diaper change/toileting rendezvous is to take place. Even though I continued to work outside the home when I was caring for my husband, once I was back in the safe confines of our house, my world was completely different. It was important to him to maintain his world so that he felt he had control. As the disease progressed, his control and obsessive behaviors became a lifeline for him. He clung to familiar routines and patterns because they brought him comfort. But although he would “tidy” the house, most things were not in the right place. I didn’t mind. The state of my house was never quite as important to me as the state of my husband’s mind.

Since I work in a hospital, I am well-accustomed to orderly chaos. We refer to our work as “predictably unpredictable”. All the things we love about it – the wide variety of people we meet, the multiple skills we are required to use on a daily basis, the “no-two-days-are-the-same” part are also all the things we dislike about our work. It’s an amazing dichotomy of a love-hate relationship. Of course, it’s all about control. Nurses are no different to anyone else in that regard. But our world is changing fast, and as healthcare consumers (pretty much everyone) are becoming more knowledgeable, so we must change our approach to caring for them. No longer can we say “just take this pill/do this/go here” anymore, because people ask “Why?”. I think it’s a good thing, but it’s hard for some nurses who have been around a long time. Nurse Ratchett

People should be more inquiring. People –you –should want to know everything you can about things that affect you. When it comes to FTD, you probably know more than most of the clinicians you meet. So, when it comes to trying to make sense of what has now become your new “work week”, and the trials that it brings, it is necessary to define exactly what now divides up your time.

If you still work, you may have to find a daycare center for your loved one to attend, or someone to come into your home. If you are able to stay at home, you will need to have a plan as to how you will maintain some kind of order among what will at times be chaos.  A schedule to organize and help your FTD’er to maintain some kind of control for him/herself. Holding on to dignity and a little control will go a long way to helping them to feel respected and valued. Even when they may not be able to talk well any longer, holding on to the last vestiges of something they understand and feel comfortable with will help you too. As the FTD progresses, this will become more and more important to both of you.

You can still have that Friday feeling. You may need to tailor the events of your week a little, but you can make new rituals to share –having special coffee or foods only on Saturday and Sunday, for example. A walk in the park, or going to church as long as your loved one’s behavior will permit. Just find something special that you both enjoy. When it comes to food of course, it is likely that you are going through a phase where your loved one will only eat one kind of food. And that’s ok. Give them their M&M’s or their ice cream, or whatever it is. But make sure that whatever it is they’re having, you’re having your special “Saturday treat”.

Le weekend, as the French say, has long been revered by the working classes as a special occasion. Not having to go to work for two whole days is a treat indeed. But when you care for someone at home, the pleasure of that break is denied you. When you live with someone for whom days of the week no longer has meaning, it takes a special effort to stop the days from running into one another.

To Do  Imagine having nothing to do. Nothing! I’ll bet you can barely remember what that’s like. Before FTD, lazy Sundays reading the papers in bed, strolling aimlessly, calling in at the pub. All seems like a long-forgotten dream now. Your FTD days are full. Your FTD weekends are full too. Try to make them at least a little bit full of something for you. If you can make them full of nothing by having your loved one visit someone else, even better. Spending time alone in my own house is a pleasure that  I longed for many times when in the throes of FTD. Just being alone in my own house. Heaven.

Anyone who has never had that feeling cannot even imagine the yearning to just be in your own space. Alone. It can be draining. The 24-hour vigilance. The 24/7/365 “attendance”. The constantly being on call at every hour of the day and night. We need help. Don’t ever turn it down, even if you’re feeling ok today. Because tomorrow you might be in your yearning mood again. Grab every offer with both hands and run. And don’t look back, at least for a few hours anyway. Your loved one will survive. Even if they’re upset, it won’t last long. They’ll get over it and quickly. And if the person who offered is enlightened by their experience, they may offer again. (Or not!)

Even though you know it won’t last forever, you are only human. You need to time to yourself now. I know from personal experience that there will come a time when you will be by yourself, sometimes more than you would like, even yearning for those chaotic FTD days. It’s a double-edged sword.