Friday, May 11, 2018

Recognizing When You Need Help

There are no  medications that help FTD nor any that prevent it. What we can do, however, is to use medications that can treat the symptoms. One of the common symptoms of FTD is depression. I often say, and probably have in previous posts, "How can you have FTD and not be depressed?" Just knowing you have a life-ending disease is enough on its own. All of the many frustrations and irritants of the disease can lead to depression as well.

Personally, I have been on an anti-depressant for quite a few years now, even before my diagnosis. Was the need for the medication related to the undiagnosed FTD? Truly, there is no way of knowing. At the time of diagnosis, I was taking Wellbutrin and it seemed to be working quite well for me with no real side effects. Up until recently, it was enough and kept my depression in control.

Six weeks ago, I went to see my doctor for a routine check up. When she walked in the room, I looked at her and said "I need help!" She is a great doctor and a wonderful person. She is the one who insisted we keep seeking a proper diagnosis even after several doctors had said it was depression or that the symptoms of FTD were all in my head. Before that she saw me through a year of dealing with Hodgkin's Lymphoma. In other words, she knows me very well. 

Hearing my plea for help, she immediately sat down and, so very kindly, asked what kind of help she could give me. I knew I needed another or a stronger anti-depressant. I had recognized the symptoms of not wanting to do anything, yelling all the time and being just plain nasty to just about everyone. I would fly off the handle and then spend the rest of the day feeling horrible about it. So, I had asked others with FTD what depression medications they were taking and I read several articles that recommended the type of anti-depressants was most effective and the least dangerous for those of us with FTD.

We decided to add Zoloft and started out with a very low dose for a week and then doubled it the following week. Within two weeks, I was feeling so much better, like my old self. Well, my old self with FTD. I have not been yelling much at all and things are much more peaceful in our household. I have also found just enough more energy to actually accomplish some things. Certainly not to the point of pre-FTD, but I can do one or two things a day. I can also have a conversation with my husband without flying off the handle at him.

Today, was my six-week check-up to see how the meds were working for me. The doctor walked into the room, looked at me and said "My Cindy is back!!!" I couldn't say it any better myself. She told me that as soon as she walked in the room, I smiled my great smile and she knew the meds had worked. She went over all the things I should watch for to know if we needed to increase the dosage and any possible side effects. She did not have another patient waiting so she took some time to chat and discuss how everything is going.

The past few weeks have been extremely stressful. There were two deaths in my family which was bad enough in itself. It was an aunt and uncle whom I was extremely close to and I miss them terribly. That part, I could deal with. It is what came next that was really hard to accept. It led into an apparent family feud. It seemed like I was being left out of the loop and not receiving any information as to the status of everything. I worked around that though by calling the nursing home, the estate attorney and others. It was like pulling teeth sometimes to get information and I was very stressed and, I must admit, angry. But, I was able to talk to my aunt almost every day on the phone and, even on days she no longer had the strength to talk, I was able to tell her I loved her. I guess I should explain that they lived over 100 miles from me. Since I can no longer drive, it was horrible to not be able to get in the car and drive up there.

Now that they have both passed (my uncle died in February, then my Aunt died in mid-April) and both memorial services have been held, it is obvious that there are fractures within the remaining family that might never heal. It is such a shame that these things happen in families, especially at the time of deaths when we all need to lean on each other. I suspect part of the issue is that I was named in my aunt's will and none of the other nieces and nephews were. I did not ask her to put me in her will. In fact, she used to joke that I was not in her will so I could quit being nice to her.

Okay, I have gone into way more personal information that I probably should have. The reason I am telling you all this personal stuff, is to point out that if I had not gone to my doctor and admitted that I needed some help, I would have had an extremely difficult time surviving the past few weeks. I had no idea that it was all going to happen the way it did, but if I had not gone into my doctor and admitted to her, and to myself, that I needed help, it could have taken a huge toll on me. In fact, after talking about all this stress with my doctor, she said she was certain that, in the shape I was six weeks ago, I would not have made it through.

The point I am trying to make is that you, both those with FTD and the caregivers, need to recognize and admit when you need help. There is absolutely nothing wrong with admitting that you are suffering from depression, especially knowing that there are medications that can help.

In addition to the medication side of depression, I do still see my psychologist who specializes in dementia. Between the medications and having someone to listen to me and suggest ways of coping, I am doing pretty darned well. Recognizing that you need help and support is a good thing. Doing something about it is even better.

Again, the feelings of depression, frustration and irritability affect both those with FTD and the caregivers. We both need to "be the best we can be" if we are to face this disease together. I strongly recommend that if you aren't feeling like yourself or realize that you are irritable or depressed, please see your doctor and ask for help. If you don't and you wait until it is a crisis situation, it can be much harder, or even impossible, to fix.

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