Work – that four-letter word that everyone says they hate.
Facebook is peppered with jokes, cartoons and statements about how everyone can’t wait for Friday when their work is done. And how Monday is unfortunately just around the corner.
Even though all the evidence points to the fact that work gives us purpose and meaning in our lives.
Most of us have to work for some or most of our adult life. Even before diagnosis, the bastard disease FTD is working hard and taking apart a life. Breaking down axons and neurons. Destroying gateways and pathways to normal thoughts and actions.
Work for most people means going somewhere outside your home and doing tasks for which you are rewarded monetarily. The money gives you control and a degree of power over your life. Depending on how much money it is, it allows you to make choices and decisions about what you have and what you do. For some people it even defines who they are.
Some people build their whole lives around how much money they have. What it can bring them. In the case of Frontotemporal Degeneration, it cannot bring treatment or cure. Money means nothing to FTD.
Some people build their lives around their work for more esoteric reasons. Being a doctor, attorney, priest, working for a charity or organization that does good in the world. The work itself can be meaningful or simply a means to an end. Being able to feed your children or go on a world cruise. Or solve world issues. The younger age of FTD patients often means they have dependent children. The point is that work can be about choice and FTD takes those choices away.
Continuing to work after diagnosis of FTD can bring about some of the most agonizing situations.
At first, you and your loved one may not even be aware there is anything wrong. Quite often, it is work colleagues and friends who bring bizarre behavior to your attention. In extreme cases, there may be gross negligence at work – inappropriate management of funds for example. If your FTD’er has a responsible position, it can be some time before mistakes come to light. Then there may be accusations and humiliation. Anger and even dismissal. Your loved one’s brainwork, or lack thereof may result in immediate loss of income and even prosecution.
FTD often attacks highly intelligent, educated people. Medical professionals, and financiers for example. Entrepreneurs and judges. The removal of something so important in a person’s life can be devastating in itself. But the lack of insight into why they cannot do the thing they love the most is catastrophic. They will continue to fight. To continue the work they love so much. To hide their inadequacies as long as possible. Obviously in some professions, this can be dangerous to themselves and others.
We are conditioned to achieve success. To ‘work’ at work. To be the best that we can. As an onlooker and a caregiver, it now becomes your job to take that away. Like driving. And control of the money. Control of just about everything else that your loved one holds dear.
There comes a point when your FTD’er is no longer capable of carrying out their work. Whatever that is. Trash collector or obstetrician. FTD knows no boundaries. No class distinction here. You will have to make plans and decisions about how they will spend their day. If they are passive and sweet and you can stay home and take care of them, this may work. If they are aggressive and fidgety, they may need to go to an Adult Day Care Center for supervision. Maybe you have to work full time just to keep the both of you. Either way, their day will need to be occupied with some kind of “work”. You may want to:
- Invest in a set of jigsaw puzzles. (This will work until they cannot figure them out anymore.) It sounds rather insulting I know, to offer jigsaw puzzles to what may be a rocket scientist, but believe me, by this point, it may be all they are capable of. There will come a point when they cannot even do that.
- If they have always balanced the check book, give them some bills etc with other financial-type paperwork. It doesn’t matter if they do it correctly, you will be doing the real ones. Make sure the checkbook is an old one. The bills not real, or already dealt with. Tell them you will put them in the mail.
- Sit them before a pile of various ‘unsorted’ papers and ask them to put them in order. The junk mail is great for this.
- Do what I did and tell them that they are going to work at the Day Care Center. Although this may cost you – in our case, $20 a shift, in addition to what you pay for them to go there. (More on the money issue in a later post) The self-esteem raised in my husband by this was immeasurable for me.
- Give them household tasks to carry out. If you present it like it’s a favor to you (because you are so inadequate that you can’t get to it) this may help.
- Make certain tasks ‘theirs’. Only they can do it. It can be taking out the trash, washing dishes, making beds. Or a combination of all those things.
- In the later stages, you can give them a pile of clean laundry to fold. (It can be the same one 2, 4, 6, 10 times a day.) Just a pile of towels or washcloths.
(You may notice there is a recurring theme running throughout many of my articles. Deception. You become an expert at this throughout the course of Frontotemporal Degeneration in your partner. It can be called “Therapeutic fibbing”. What you are trying to achieve is peace and tranquility. This deception may be difficult after 30-plus years of openness and trust.)
If they are physically fit and able, they can do simple things for a long time into the disease. My husband took great pride in keeping our house neat and tidy. To the point of obsession. Doing laundry 5 times a day. (Huge water bill!) Vacuuming the carpets 2-3 times a day. (Worn carpets!). Even when it wasn’t clean anymore, he thought it was and I did not destroy that illusion. I would surreptitiously clean behind his back. Replace things in the right room, or clean the pool early in the morning while he was still asleep. It was exhausting for me, but his dignity remained intact. He still had worth. That was the most important thing. That he felt worthy and useful. Because I knew it was so important to him. His ‘work’ had meaning to us. His contribution was vital.
My own work was obviously important during these times. Financially and for my own sanity. Luckily, I have flexibility and understanding at my job. I would go to work at 4am so that I could be home by lunchtime to care for my husband. I could work from home a little so that I was around. (Although he indicated I was in the way of his work!)
Work – or the meaning of it, is clearly important for our sense of well-being. Academic evidence tells us that. But in my experience, it is more deeply rooted than that.
My experience shows me that a person’s very essence of self-esteem can make or break their spirit. Even in the depths of a cognitively degenerative disease, that spirit remains. That intangible need to be needed. That desire for praise, even in the midst of a disease that robs you of empathy for others, or an understanding of what needs to be done.
Old habits die hard.