DH was diagnosed in 2008 with FTD. Several months in a psych hospital found the right med combo. Every day he needs to go out in the car to "nowhere". No matter how long we are out in the car (anywhere from 1-5 hours) it's not enough. He tries to go out of the house trying the locked doors. Everytime I get up to go to the batthroom (1 time in 5 hours) he races me to the bathroom so he can pee first even though he has gone 10 times and doesn;t care that it is an emergency for me. I have severe RA and am on injections, I don't expect him to care about me anymore, but I do need to care for me in addition to him. It's all about him and quite frankly, I can't stand it anymore. He is pysically healther than me and I am tired f having to meet his needs firsy. Oh by the way, his family doesn't want anything to do with him. Friiends are gone. Welcome to caregiving for a dementia person. Right now I want to open the door and let him go; but I won;t.
LFL there are many of us who wanted to open the door and leave ourselves:) its tough to hear the me me me all the time and have to drop eveything and attend to their needs while ignoring our own. its why so many of us RANT off/on during our journeys path. getting it off our chest helps sometimes. i hope you can have some respite away from him for a bit, and dedicate the time out for yourself soon. it sounds like you are at the limit and in need of me time . family and friends that disappear yes it happens alot. you are not alone. hoping tomorrow is better. divvi
LFL, I have to laugh! My DH is sitting here asking me ,"What's next?" meaning what are we doing & where are we going? It's almost 7pm, but he doesn't understand that we aren't going anywhere. He also doesn't understand that we don't always have someplace to go & since I have to do everything here I don't have the time to just get in the car & ride around to make him happy. It's all so exhausting.
I understand your tiredness. My husband wants to go somewhere everyday. The first words out of his mouth in the morning (after asking for his cigarette) are "we can go now". Never mind that I'm in a robe and pjamas. Even after we have been out most of the day he will still say after dinner that "we can go in the car now".
He goes to day care three days a week, thank goodness. But, as soon as I pick him up he's all about going somewhere else. It is exhausting.
LFL - sounds like this would be a case to seek medication to calm him down. Others have talked about medicating when their spouse is antsy. For your own health and sanity to keep him even groggy for a few hours would be worth it.
FayeBay - I assume the VA has no dementia unit near you. that is where my FIL went because he was a flight risk and had to be moving all the time. He spent the day walking the hallways for most of the 9 years he was there. I also know he was medicated with seroquel I think.
I have some of the problems others have too and now driving is starting to be a problem..he has not gone off to drive but if I say I am busy and can't go now he says he can go..well he might be able to drive but he can't go without getting somewhat lost..He has not driven in more than a year. Just tonight after going over the same things again and again I blurted out " when do I get a break?" I am sick of this too.
LFL, there IS help for you. The Alzheimer Association might be able to help you a little. Marilyn in MD got a grant that covered a little respite time each month from her local Association in Maryland. You cannot let him drown you. and, they can do that emotionally. You definitely need to ask about putting him on Seroquel (which worked beautifully for us) or something like that. and LFL, YES, they will be more sedated, but what else can you do. If he is not sedated, what is he going to do?? Nothing. So, let him go to a calmer place with the help of a little pill. It's like you give it to him to help YOU get through this dark journey.
LFL--Nancy is right about calling the Alz Assn about respite funds. Also, check your area Office on Aging (here it was through our County Dept. of Aging)--they also have funding available at certain times. Neither one gives out large sums of money, but it is worth the effort. You may have to be on a waiting list, so call now!
Thanks to all of you for your support - it means alot to me. Nancy B* and MarilyninMD I will try the alzheimers asso and see what might be available. I contacted the Office on Aging when DH was first dx'd and they advised me that we don't qualify for any type of assistance because we do not meet the age requirement (65 for most services, 62 for others). DH is 60. DH IS on meds to calm him; quite a high dose of seroquel AND clonopin. Sometimes it doesn't work as well as others. Last night was one of those times. Hoping today is better for both of us. Thank you all for replying and understanding.
LFL, as your husband has been diagnosed with FTD, I believe the Association for Frontotemporal Dementias also has respite funds of $500 if you are approved. Check it out at:
I think I should start to take the Namenda and Exelon...I am going insane....DH is getting an award this weekend..inducted into a Hall of Fame...just jimmy dandy... HOWEVER when someone blew the lid off the surprise before I was ready to tell him..I have been in reminder hell ever since. Today after answering the questions 4 the eleventyseventh time I blurted out write it down so I don,t have 2 answer this 4 the zillionth time. God help me I hate this f¢∞§£¢™ disease.
Mimi, I feel sorry for both of you. Please try to remember to direct your anger toward the disease...not your DH. It is NOT his fault, he cannot help himself. It really IS the disease that is causing all of his behavorial problems. Take it from a sister care-giver with at least 8 years of experience and untold tolerance under her belt.... it won't get any easier. The questions wlll eventually stop, of course, and then you'll wish he could tell you or ask you what is in his mind. He WILL lose his ability to read, so notes cease to work. Labels on cabinets and drawers will become useless. Every one of our spouses are/were different, ... and the road is long. It's important that you find a way to take the edge off of your stress now or you might not survive this dastardly disease yourself. It's a challenge we all face...find ways to deal with Caregiver Stress so Alzheimer's Disease will not claim two victims in the family. I know how hard it is. Trust me. I HAve been there and I HAVE done that.