FTD –the Guilty Party

Let’s just get one thing straight. Guilt is not something people can tell you not to have. How the hell can you erase guilt? It’s an emotion over which you have no control.

“Don’t feel guilty about going for a manicure/taking some time for yourself/eating your dinner”

That’s all well and good, but one voice in your shoulder says “Yes! You deserve it!. Go ahead and do something for you for a change”. The other voice says “What? You’re doing something for yourself? Are you kidding me? You’re a caregiver, for God’s sake. What about him/her? Come on, you shouldn’t be doing that. You’ve got (substitute any caregiving task here) to do”.

Angel and devil

So clearly, telling you not to feel guilty isn’t going to work is it? One half of you wants to do what you want to do, because, well, you haven’t done that in a long, long time. The anger and resentment feeds  the part of you that needs, yes needs, something dammit. The other half, the rational side, wants you to do what you do for the other twenty-three hours a day/seven days a week. The stuff that you do for other people. Because let’s not kid ourselves here. You don’t just take care of your FTD’er. Oh no, you feel it necessary to take care of the rest of your family too. Granted if you have small children or teens, then you have to somehow figure out how to give them time and what they need too. But if you have no children or they are grown and gone, then they and your other relatives and friends need to figure out for themselves how they are handling this issue of FTD

Sure, you can help them to understand what is happening and help them to come to terms with it. But you can’t do it for them. They have to figure that out for themselves. That’s where the guilt comes in. You feel guilty about not being able to make it right for everyone else. You feel guilty that you can’t fix your husband/wife/friend/partner. You feel guilty -well, just because. There doesn’t need to be a reason. People can try to make you feel guilty. But actually only you can allow that to happen. You can explain till you’re blue in the face what’s going on. But at the end of the day, the guilt can either break you, or lead you to a way of thinking that will make you a little more free.

Accepting that the guilt belongs to someone else and not to you is a breakthrough. If you can reach that understanding, your life with FTD may be a little less fraught. A little less heavy. Because guilt certainly is a heavy burden, that’s for sure. It can make you yield to suggestions or actions that you don’t really think are right. But pressure from other people can do funny things to you. The heaviest pressure of all is from yourself. Your expectations of how you think you will manage the bastard disease will never come to fruition.

FTD is cunning and clever. It can give you delusions about your abilities. It can make you doubt yourself a thousand times a day. But guilt? Guilt is one of the jewels in the crown of the bastard disease. Jewel in the crown

FTD, while affecting the mind of your love one, will do its best to guilt you into becoming a cooperative partner in its dirty deeds. It will try to take your independent thoughts and replace them with FTD-centric ones. It will scream “Me, me!” and guilt you into not going to the wedding/party/spa/vacation. just so you can spend more time acceding to its every demand. It’s not your loved one making the demands, it’s the bastard disease.

I can now see how guilty I felt every minute of every day. Every time I enjoyed something my husband would have enjoyed. Every time I held our grandchildren. Every time I watched a movie that I know he would have liked, or laughed at or cried at. I felt guilty, but now I see it was because I was afraid. Afraid of what I knew was to come. Enjoying things without him, living without him.

Of all terminal diseases, FTD can be one of the most cruel. For so long, there seems to be little that has changed. Then one day, you have to remind someone how to put their pants on one leg at a time. You have to order their food in a restaurant because they can’t get their tongue around the words. You have to buy adult diapers for your 45-year old husband/wife. You have to hide the car keys. Guilt blossoms because you feel like it is you that is taking everything away. You that is depriving your loved one of whatever it is.

It’s not you. Just like the behaviors and the speech problems and the mobility issues are not your loved one, they are not you either. The bastard disease, while chipping away at the brain, likes to chip away at yours a little too. Whittling away at your resolve and strength. Piling on the guilt, as if it’s all your fault. Well I’m here to tell you that it’s not. Can you control guilty feelings? No. But maybe you can accept them. Maybe you can see them for what they really are. Feelings. Guilt is only one of a myriad of emotions that you are experiencing as you travel this FTD journey. I can’t tell you not to feel it. Even if I did, you couldn’t. But maybe you can keep it subdued. Maybe you can let other feelings override it a little. Feelings like pleasure, comfort, sadness, anger. It’s not easy.

I talk a good fight, but I felt guilt too. Guilt about “therapeutic fibs. Guilt about taking away the car keys, money and all kinds of independence which had become dangerous to my husband. Guilt about placing my husband in residential care. Guilt about going out to a nice dinner, or the theater or a trip. I couldn’t not feel it. But I found a way around it. A way that allowed me to say “I deserve it”. You do too. But no amount of me telling you that will work. You have to be able to tell yourself that. You do deserve it. Really.

 Spa

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