Well after a lovely Sunday morning at church and then baseball tryouts with 9 yr old Dylan, I was sitting at the computer, and began having chest pain/pressure that was unlike anything I have felt before. I have had the searing pain of Esophogeal Spasms and taken nitro to calm the muscle, but this time nitro didn't work. So off to the ER I went with DH in tow. My EKG was fine, but still had the symptoms and a very fast heart rate. (130bpm). My blood pressure was high for me. I was given one than another nitro and the full work-up began. The first cardiac enzyme test was normal, the 2nd was borderline. That bought me an admission to in-patient. The pain continued, the morphine was delightful! The third enzyme test was back to normal?????? I had had a complete Contrast Stress Test in Sept. I was finally put on a beta blocker and a nitro patch. Monday came and it was decided that I would go to the Cardiac Care Center an hour away. Well there were no beds, so it was postponed until Tuesday. Tuesday I was transferred by ambulance and admitted to the CCU and prepped for a Cardiac Cath. They told me I would remember nothing, I remember EVERYTHING! I was scared stiff due to my rather high cholesterol level and my family hx. Surprise, surprise, my arteries were completely clear! Not a sign of plaque! I was discharged on Wednesday afternoon with a dx of STRESS!, YA THINK!!!! It has given me peace of mind to know that my heart is really ok, and that I am not following in my Dad's footsteps.
So here is my question to you all, but especially the FTD Spouses, How do you deal with the rapid decline? How do you deal with knowing that in a year, maybe two DH will need a nursing home and then he's got maybe a year or so after that. This flippin disease moves so fast, I can hardly keep up. I have you all, Thank God, I go to therapy twice a week, I'm on Effexor XR and Klonopin, yet I cry and stress constantly. I have always been a planner. This is so hard for me to cope with. I don't want to lose him, yet I am watching him change daily and now he is losing his patience and it is causing MAJOR stress for Dylan. He is aware of his new language challenges, less ability to concentrate, increasing difficulty with day to day stress and so much more. I try to get him out, but he is beginning to become more socially phobic and losing his social skills. We see the VA Neuro on 2nd and the VA psychiatrist and primary care on the 8th. I need to know how you all cope on a daily basis. He wants to go into assisted living so that he isn't a burden to me! Not only do I (we) not want him to go, we couldn't afford it. Aghhhhhhhhhhhhh Help!
I'm sorry about the awful stress you have been under. My husband was diagnosed with FTD but he seems to be progressing a bit more slowly than your husband. I have also been lucky (so far) that he has not had any of the rages/aggression of so many others. My husband is more like a 5 year old who can go from euphoria to a crying tantrum in a second and he doesn't have the awareness of his disease like your husband. Can he go to an adult day care during the week to give you some time for yourself? As he wants to go to assisted living maybe he would go to day care.
As to dealing with what will happen in the future...I believe I am in a bit of denial about that. My husband still likes to go out and do things so I try to take him somewhere everyday to keep him happy. His language is just now starting to be a bit noticeable---he mixes up pronouns and says the opposite of what he means. He was diagnosed last August but we have noticed things for a couple of years before that.
I'm sorry you had such a scary experience, Susan, but good to know you're okay.
Mine's not FTD, but I can tell you what I have learned to do: Feel like you are on an airplane, or maybe a reliable ferry. What will be, will be. There's very little you can do to hurry or slow the progression, so try to get meds for him and you and relax and go with the flow. I know it's really hard with Dylan but try to keep them apart as much as possible. Is Dylan in nursery school or special ed? Can you arrange play-dates? Can you feed him separately and sit your husband down in front of some nice good shoot-em-up?
First, I'm glad to hear you are OK Susan. You do need to watch the stress. You may want to think about cutting caffeine out of your diet, if you have any, because it can trigger stress attacks. I had one a few years ago and when I went into emergency care, I had 220 BPM. They said I was close to having a heart attack or a stroke. They told me to get rid of caffeine because it was a trigger.
My husband has progressed fast as well, or at least it feels like it. Last year I suspected it. He has both frontal and temporal atrophy but he was diagnosed with AD on July 2nd - family history. My husband also says opposite of what he means. He doesn't know what things are or what to call them. He thinks my daughter is me. He moves garbage from one bag to another. He's obsessive. He's forgetful. Around Christmas time I had him put on anti-depresants. He was screaming mad one minute and then pouting like a 2 year old the next. My husband typically sits on the couch all day staring at the floor. He is not be comfortable in public because he is losing his ability to interact. Just this week, I called a Assisted Living counselor to see if I was going crazy and they assured me that everything was normal. The counselor indicated to me that they tend to do better if they have people to interact with. I recommend you work with his doctor to make sure his meds are right. They will need to be changed periodically.
You might also want to look at adjult day care as well. This would give you some time to do things you enjoy. Maybe even take a vacation. If you don't take care of you, you can't take care of him.
Thanks for all you comfort and suggestions, Jim is on Paxil and Ativan, that seems to work well for him. Dylan is in 2nd grade and has pre-frontal lobe deficit that he was born with. So I have two guys who cannot control their emotions! Tonight, even up here in Maine we had a beautiful evening and after supper Dylan asked Papa, very tentatively if he would help him practice for baseball. Jim said yes and for the most beautiful 15 mins, my Mom and I sat with a glass of wine in rocking chairs on our front porch and watched them play catch, and Jim acted like he used to. Oh Lord, I was so thrilled, but had such a lump in my throat.
As for the daycare, I don't know if Jim will go for that. He LOVES to garden and he and Dyls spend much time together creating my dream garden. It was to be a 5 yr plan, with walking paths, benches, birdbaths, all leading to a screened gazebo overlooking the river and waterfall. Oh God, WHY! WHY THE GOOD PEOPLE when there are so many cruel mean people in the world.
I wish we had the money for a vacation. We don't. I would love to be planning to attend the Alaska Cruise. No way could I afford it. Oh dear God, I would give it all up and live in a tent for the rest of my life if he could healthy.
Susan-I am so sorry for all your added trouble. You must be tired of being strong. As others have mentioned-you must take care of yourself first just like in an airplane you are told to put your own oxygen mask first then help others. Love, Nora
I read your post & it brought tears to my eyes. I hope they continue to work on your dream garden. You must take care of yourself for Dylan's sake. Anything to reduce stress. My best to you.
Susan L. My heart breaks for you. My husband also has FTD and is going down hill rapidly. I try to just take each day as it comes but I could not imagine trying to cope with all of this with a young child at home. Stay strong, take care of yourself as best you can and hug your son often.