Sunday, April 26, 2015

Caring for Someone with FTD

Today, I need to address the caregivers.  I often say that the only thing worse than having FTD, is having to care for one who has it.  It is pretty much a thankless job.  I often lament about how friends and family shy away from me because I have FTD and they avoid me as much as possible.  I have said before, I do understand why they do that.  It is difficult to see someone you love falling apart. But today, I was told that this happens to the caregivers as well.  Now, that is ridiculous!  Are they afraid the caregivers are now carriers and they will catch it?  More likely, just as it is with those with FTD, the others are uncomfortable because they don't know what to expect or what to say.  For crying out loud people, the caregivers need a break and may still be able to visit your home, go out for lunch, whatever.  I say shame on those who can't bear a little bit of discomfort to help out a friend, or just to keep up the relationship.  Interesting enough, after I blog about this subject, I usually get a couple calls from friends, I am assuming that it is from guilt.  To them, I say "Don't bother."  I can tell the difference if you are truly interested in me or not. Enough ranting on that subject!

Okay caregivers, I think that because you are so used to helping the person you are caring for, you can sometimes do too much.  This often results in the FTD sufferer feeling like a child.  Never talk to them like a child even though it might seem like you are caring for one.  It is belittling and insulting, please believe me on this.

I would like to also caution you about is don't take total control.  If the one for whom you are caring can still make some decisions, allow them that dignity. Do not make decisions that they are still capable of making on their own, even if you think you are protecting them.  Now, in some cases, you do need to protect them.  There is a woman I was acquainted with because she worked in a store I frequented.  She started calling me often.  Unfortunately, she is one of those emotional leeches... sucks out all your energy and leave you feeling depressed.  It used to be that I could get her to hang up by starting to talk about myself.  Even that doesn't work anymore, she just ignores it and keeps on talking about herself again.  Main subject, "Woe is me!"  I have to have my husband shield me from her.  She still calls, even though we have both explained to her that I just can't talk on the phone that it stresses me too much.  So now, I don't feel guilty not answering when we see her number on Caller ID.  I struggle enough each day to keep from feeling depressed because of the FTD and its limitations, I sure don't need to talk to her!

On the other side of the coin, if someone asks you if your loved one would like to, or could, do something, don't immediately shield them and say no.  Ask them if they would be up to it.  If they say yes, you might want to warn the person asking that if it gets to be too much, please don't argue with them when they say they can't do it anymore.  It's always good for the FTD sufferer to be able to step away from something that is stressing them.  But, if you keep them away from anything that might stress them, you might be shielding them from something they would enjoy doing.  If you let them decide, you might prevent them from feeling useless.

In the same vein, allow them to do some things around the house.  Give them some laundry to fold... even if you have to redo it later. Or, if you are getting ready to do  laundry, ask them to gather up the dirty towels. If you are cooking, if there is a simple task, (I would suggest skipping any that involves knives!) have them do it.  Everyone likes to feel needed.  I am lucky, I can still cook (and handle a knife).  Cooking was always one of my favorite things to do.  I have to break it down into tiny little steps now, and I have to rely on tasting things since I can't follow a recipe.  My husband is usually just a few feet away, ready to offer help if it looks like I need it, but he will also back down if I tell him I've got it.  He always checks to make sure the oven and stove are turned off and he reminds me to use a potholder, but he knows I need to keep cooking as long as I can.

Caretakers, after saying all this, I say. God bless you all.  I have been on the other end, I know how frustrating and exhausting it can be.  My biggest advice is that you need an occasional respite. Ask a friend or family member to sit in for you for a few hours so you can have some "me" time. Or, if you can afford it, many nursing homes offer respite weekends where they will take in your loved one for the weekend and allow you some time to yourself.  You need it!


Tuesday, April 14, 2015

I Can Still Have Fun!

I discovered something interesting over the past weekend.  I have no idea if it is true for everyone with FTD.  My husband and I visited the Philadelphia area, where we lived 17 years ago, and had not been back to visit for 10 years.  A lot had changed, so many more businesses have built up.  I could kind of remember how to get around, but got horribly confused if someone started talking about route numbers or names of roads.  I told my husband, "don't ask me how to get there, just go where I point."  He said that considering that one of my first FTD symptoms was getting lost in familiar places, that it might not be the safest choice.  So he was armed with a stack of maps he printed from the internet.  Between the two of us, we didn't get lost even once.

That was interesting but not what I was excited about discovering.  My FTD did not prevent me from visiting with our wonderful friends!  I was smart enough to only schedule one event or visit each day, so that we could go back to the hotel and I could have peace and quiet to recharge.  This helped tremendously.  I only had to leave one event, a retirement party, a little early because too much commotion was going on.  BUT, when we were out with friends, even in a noisy restaurant, I communicated much better than I normally do in a social setting.  It is something most people with FTD already know, but it was surprising to me.  It is simply that with these good friends, I didn't feel like I was being judged, pitied or ignored.  I knew that if I stumbled... over my own feet or verbally, I would still be totally accepted.

The only frustrating thing occurred when a friend was denying my symptoms with "oh, we all do that," or "I do that all the time."  This is a friend who is significantly younger, just a few years older than my daughter.  After hearing these platitudes enough times, it sunk in that she desperately doesn't want there to be anything wrong with me.  I "mothered" her from the point we met.  She was new to the area, no friends or family nearby and being the mother hen that I always was, I tucked her under my wing.  I think I invited her to our house for burgers the first time we met, which was at a horse barn where my daughter's horse was boarded.  Realizing why made it possible for me to enjoy our visit instead of becoming frustrated.

The four-hour drive each way was the only truly stressful part of the trip.  I relied on anti-anxiety medication for that part of it.  Anti-anxiety meds, such as Ativan or Valium, do not work for a lot of the people with FTD with whom I am familiar.  I am very lucky that for short-term usage, it helps me cope with stressful situations.  This disparity with the medication seems to be true of many meds. When comparing notes with others with FTD, the drugs that work well for some don't work for others.  Thinking about it, I guess that it true in the non-FTD world as well.

I have a few more things coming up in the next few months... two weddings, a birthday party and a charity event come quickly to mind.  This trip has made it easier for me to look forward to them, as long as I have a coping plan in mind, I think I can do it!

Thursday, April 2, 2015

More and More Frustrations

I swear they should rename this disease FTF, for fronto-temporal frustration. I know I am always writing about my frustrations, but this is because I am always dealing with frustrations.  I'll tell you the one I am dealing with right this minute. I had finished this blog and was about to click on "publish" but somehow did something wrong and it all disappeared.  Now I have to try to remember what I had written...

Today's frustrations were several.  First, I had an appointment with my chiropractor, who I dearly love and she does wonders with my neck and back which limits the headaches I suffer.  Despite what she believes, though, she cannot cure my FTD!  In her defense, she is studying to become a neuro-chiropractor, so she does understand neuro problems better than most. However, she still keeps comparing it to Alzheimer's. I have given her literature, but it's obvious she has not read any of it. I do not believe she can cure my FTD by shining lasers up my nose to stimulate the brain. I do not believe that she can stimulate the other areas of my brain and they will allow the shrinking areas to regenerate.  It truly wears me out.  Can we, please, leave it alone for at least one appointment?

From there, I went to my hairdresser where I encountered one of the things FTD sufferers hate hearing the most.  "Oh, that's nothing, I forget things all the time too."  Oh, if only it were that simple!  I want to say back "Yes, but you don't have a terminal illness that causes it."  But I don't.

There are so many things that I would love to say to caregivers and anyone who loves or happens to come across someone with FTD.

-  Please, do not compare FTD to Alzheimer's.  Yes, they are both terminal diseases and are both horrid, but they are not the same, do not progress the same and should not be treated the same. This actually makes me feel like you don't think I know what I am talking about.

-  Please do not ignore me when I am speaking. I know I ramble on, sometimes about inane things, but in there somewhere, I do say some intelligent and important things.  When I later refer to what I said and get a blank stare from you and you insist I never said it, I feel that you think I am stupid or imagining things.

-  Also, when I am speaking, please do not finish my thoughts or sentences for me or start to respond while I am still speaking.  It takes me longer to think of all the right words and get my point across, but you do not always know what I am going to say. When you do that, I feel like you don't think what I am saying is important enough to listen.

-  Please, if you see I am struggling with a task, do not jump in and take over.  Asking if I need help is a good thing, assuming I can't do it at all is not. (On a personal note, my husband really gets this point and I probably don't thank him enough for helping me to do it myself.)

-  Please realize that when I walk slowly or unevenly, I am not drunk or under the influence of drugs. Do not make "cute" little remarks, they are not funny and cut to the quick.

- Please, please, please... when I go to another room or quiet area, I am not ignoring you or being rude. Often times, even normal goings-on are over-stimulating and I need to go to a quiet place to refocus.  Do not keep coming in "to check on me."  That defeats the purpose.

I will stop with just these six.  I am sure you get tired of my rambling on about the frustrations of my every day life.  I do realize that we all have frustrations we must cope with, but for FTD sufferers, or at least for myself, the coping mechanisms don't exist any more, they left right along with the areas of my brain that have gone away.