Trying to negotiate life with a broken mind isn't easy. Yesterday I was sitting across from a friend who commented she couldn't see anything different between the way I'm now to the way I was last year. That's the double edge sword of FTD.
If you sit across from me and have a beer or a coffee you'll never realize that your talking to a person with a severe neurological disease. I was thinking of wearing a sign on my chest that says, "FTD Here" but realized people would ask me if I deliver flowers.
The FTD double edge sword applies to patients and caregivers. Some patients can be aware there is something wrong with there brain and life and no one else gets it. Caregivers can say there's something wrong with my loved one and all the caregivers friends might think the caregiver is crazy and the real FTD'er is fine. Of course it gets more complicated because most FTD patients aren't aware there's anything is wrong with them. There are two reasons this might happen. One is that FTD effects them organically and there not aware there's anything wrong with them. Doesn't matter what behavior they exhibit. There unaware that there's anything wrong with them no matter how bizarre there behavior. In the beginning stages it's common for a FTD patient to be in a doctors office and have the doctor convinced there's nothing wrong with them while the caregiver wants to pull there hair out. Caregivers, if you have any comments about your loved one being unaware a comment below would be appreciated. Then there are the less common cases like me. Patients with FTD that, "are aware that we're unaware" whats going on with us. We know and have accepted that we have FTD, but are forever baffled by our behavior, thinking disruptions etc. We know we're slowly losing our minds and go through an incredible struggle to be aware and control what we're doing and keep our lives together.
Physically, I feel the same same as I did last year with the addition of 40 pounds. What's more difficult this year over last? Absolutely nothing unless I really think about it. That's what I told my friend Sheila. Yes, my behavioral incidents seemed to have picked up a bit, but even though it can get a bit ugly there have been no major incidents. Sheila asked if I handed needed to hand out my awareness cards when things happen. The truth is I've only handed out one awareness card and that was over a year ago. Someone told me my behavior issues more resemble that of a "grumpy old man". Great, I'd rather be an FTD'er than Ebenezer Scrooge.
It's become very difficult for me to follow up on things and keep track of projects, paperwork etc. I used to be extremely organized and now it is impossible to multitask or get through just basic day to day tasks. One year ago ago it was easy to toggle between my blog, filming and the various online support groups I belong to. Now, it is hard for me to do anything for more that a minute without being distracted. Settling in on writing this blog is taking extreme self control and discipline to keep my mind from wandering off. It's now 8:01am and by 9:30am I will be home exhausted for the day. Today is also God's Love We Deliver, delivery day. GLWD has made a big difference in my life. I can't tell you how much there charity food deliveries have made my life easier. They are true saviors and if someone is looking for a charity to donate to AFTD and GLWD are on the top of my list.
Thinking things through and planning things out are so difficult. Amazing how even while writing this I find myself somewhere else after a sentence of two.
Last week was a tough week for me. Having my lawyer put the ice on the case was difficult. I'm lucky to have concerned people around me to help me put together a plan together. it just gets so difficult because there are so many ideas bing floated.
I'm doing fine with a roof over my head and food on my table.
This will be a short, not to detailed blog. Last week was a rough week and there was a lot of concern out there. I want everyone to know I'm weathering the storm and forging forward.
I want to thank everyone for your support out there. Your letters, kind words, and love you've shown me help me immensely.
Howard Glick
FTD Wanderer of NYC
First off, Howard, I think you are amazing. My dad has FTD and in talking with one his doctors the other day, she posed the question does he think he has changed or gotten worse since his diagnosis (almost two years ago). He said absolutely not. His caregivers, however, have seen a major difference. Major. He is completely unaware that his condition has worsened and I think in his case, and maybe for many with FTD, it's a blessing.
ReplyDeleteKeep up your spirit Howard. You are an inspiration to those suffering with FTD and those who love people with FTD.
Thank you very much.
DeleteHoward
Yes, it is a double edged sword. No one can see what I do but me. I have put family and friends on alert (not all, just some of them) and have had little feedback. A couple have even had the audacity of saying " you are fine, nothing is wrong". My Ex told me I was lazy. They have no clue that I work my ass off to do just the simple things... "a little frustrating" is a huge understatement.
ReplyDeleteBUT none of us know know when the last day will be so I live my life like I always did.
Yesterday I went to get a new will prepared, today I will go back to finish it. I am getting all my papers in order, but that is not a new thing, been doing it for many years. On the way home I pulled over and had my girl friend drive. That is a first for me... she made no comment, she understands. maybe she understands better than I do.
BTW: "grumpy old man" and/or "has a bad leg so he stumbles" is a way I would prefer people to look at me. Most of society looks at someone who is mentally debilitated in the same way they look at someone who is stupid or crazy. I am neither.
Today I will again work on my house, in hazardous situations, up high and with power tools... but I need the challenge.
Thanks Howard, will chat later
Be careful on that roof.
DeleteHoward
Hi Howard, not only did my husband think there was nothing wrong with him, he told the neurologist at his appointment that i was the one who was ill because my father had recently died of cancer and that i was the problem.
ReplyDeleteI was the caregiver "pulling my hair out" at the appointment, the neurologist ignored all my concerns and discharged my husband.
Now my husband 1 year after diagnosis still thinks there is nothing wrong with him, i am the one who has changed. Carers come in 18 hours a week for him to persue sports etc, with them he is the perfect man. At home everything is hard work, although he still believes he is fit and well things have changed over the year, all friends and family can tell he is ill. strangers just think he is odd.
I feel for you. I've heard this so many times before. Your husband is sick, your neurologist ignorant and your left holding the insanity bag.
DeleteGlad he got diagnosed.
Howard
Howard,
ReplyDeleteI am a caregiver to my husband. At first I never knew of such a disease. After months and months and let me add another month of doctors, testing, medication and more tests my husband was finally diagnosed. FTD with behavioral varients. His is at a stage worse than yours. I was told he has probably had this for 10 to 15 years. His memory is not good, at times has problems swallowing at dinner, frequent urination, sleep pattern if off, OCD, etc. For you to have yours as long as you have your are doing great. You are an inspiration and I always check to see what you have wrote. It is hard to watch my husband go through this. He wants to go back to the way it was before FTD. I have learned to be more patient and understanding. At times it is not easy. Some days are good for him and others are not. It's good to stick to a routine, get up the same time every morning, eat breakfast and take medication. I have learned when he sleeps in and take his medication later it is not going to be a good day. He's off and becomes emotional. I like what you write and you tell what you are going through. My husband does not talk like that. When I take him to appointments he has the blunt look and at times I will say or mouth he has dimentia or I have to explain for him he has dimentia. I'm not embarrassed and I don't need a card to give out. It's the truth and if people can't handle it turn away. I am sorry to ramble. Please keep up with your blog, you are needed. :o)
Be very proud of yourself. Your an incredible woman.
DeleteHoward
Last summer was able to make hay. This summer couldnt even mow the lawn on a rider. Its too hard - even though that doesnt make sense.
DeleteHi Les,
DeleteMakes perfect sense to me and all the rest of us with FTD that struggle to keep it together and aware.
Howard