Frontotemporal Dementia: It’s Not You


You – you multifaceted thing you!

You, as a caregiver, are the sun, the moon, the stars to your partner, spouse or friend. You become their lifeline. Their link to all that is real. You are the person who feeds them, cleans them, loves them.

In the depths of middle to late stage FTD, you may wonder where “You” have gone. You may wonder what happened to that man or woman who was just blithely getting on with their life. Perhaps growing older with your life partner or friend. Minding your own business.

The slap in the face that comes with FTD is in slow motion. It happens insidiously over time.  It happens when you’re not looking. You’re so busy just dealing with the day-to-day, it sneaks up on you.

  • You are now your spouse’s parent, supervisor, antagonist extraordinaire
  • You are the housekeeper, cook and entertainer
  • You are the gardener, handyman, chauffeur.
  • You are the accountant, budgeter, banker
  • You have needs that come second, or even third – to just about everything

If you have young children, that is some balancing act. Even if you don’t everyone needs something from you – all the time. Or so it seems. You have no support from your spouse, so prioritizing is even more vital than before.

So,  You.

You still matter. You have to carve out time and energy for You. Everyone will tell you that. You know it’s true. You have spent your life in service of others-being a wife/husband, father, mother, daughter, son, sister, brother, coworker employee and everything else you are. There will be associated guilt with letting go. But your own well-being is at stake here.

You will have to continue after it’s all over. Today is the best day there is going to be. The deterioration rolls relentlessly on. FTD will leave you behind.The bastard disease will take everything you have and then some.

It will require all of your superhuman powers (you are invincible -right?) to hold on to everything that is You.

There is no ‘I’ in ‘You’ – ha! How ironic. You have to become ‘I”. Even when you have been ‘We” for a very long time. You were still there underneath ‘We’.

Just hibernating a little.

Try to begin this process before the end of one chapter of your life and the beginning of another. Transitioning at a natural change, such as your loved one going to Adult Day Care or moving out of your home into a facility can help.  I joined a gym, ventured a little further from home, visited family. Of course, if you are caregiving at home, you will need to arrange to for someone to cover for you while you are gone.

Do not make the mistake of sacrificing precious time that will save your sanity by trying to do it all. It won’t be appreciated and you will still feel crappy.

Every caregiver I have ever known, including myself, has gone through that guilt and martyrdom of leaving their loved one home while they went out or away to do something fun.

The first time is the worst. At the risk of sounding cruel, your loved one will probably not even care after the first ten minutes. Especially if you leave them with someone they know well. You love them. People know that.  If they don’t understand why you need time off -to hell with them.You don’t have to explain to anyone.

A friend of my husband’s would come and sit in our house sometimes between the Home Carer leaving and me getting home from work. My husband would go about his day, cleaning and laundry-ing and completely ignore Bob. His social skills were so corroded by this point that he never gave a thought to sitting with his friend.

Believe me, martyrdom will bring you no comfort. Do what you need to do. Do something that gives you joy.

A lady in the Support Group I attended was asking the group what they thought about her going away overnight to see a friend. Leaving her husband with a caregiver with whom he was very familiar and liked a lot. She was worried that her husband would not approve. We told her to go on her little trip and deal with any fallout on her return. She said  “But he will be upset that I left”. She was reassured that by the time she got back, he would have already forgotten that she had gone.

She went and the caregiver told her that her husband never even asked where she was. This is a great example of how we overestimate our loved ones’ understanding due to the longevity of our relationship with them.

Please don’t give your FTD’er too much credit for understanding what is going on. Give yourself the credit instead. There is no cost. Only to you if you don’t do it.

Use the credit for an afternoon to yourself. A pedicure. A dinner with friends. A trip to the spa. Or the gym. Or just by yourself having a quiet cup of coffee.

For You.

You will carry on. You will emerge. You are invincible.


2 thoughts on “Frontotemporal Dementia: It’s Not You

    1. Sorry I thought I had replied! Duh! I agree that different conditions have many similarities when it comes to caregiving. Terminal conditions require certain things of us and it is hard to capture, but those of who do or did it understand what it takes.
      Thanks for following…..


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