Just when I thought things could not get worse, they did. Jim has been diagnosed with Fronto-Temporal Dementia, not Alzheimer's. I cannot believe that I could lose him in just a couple of years. The neurologist said the prognosis, since he has been having obvious symptoms for at least 5 years, is only apprx 2 yrs before he needs total nursing care. He explained and I have read that FTD progresses MUCH faster than AD and ends up in the same way, just faster. I am devastated, in shock, pissed off at the world and exhausted from crying. He seems more at peace, finally knowing just what is wrong and what is ahead. The denial is gone. I know that this is a site for AD Spouses. Can I still post? I cannot imagine going through this without you all. A friend found the best website I have seen on FTD it is http://memory.ucsf.edu/ftd/
There are many here with different forms of dementia. Lewy Body, FTD, Vascular, and more. There remain widows and widowers who participate with us. Dementias vary in many ways, and usually end up with Alzheimer's at some point. So, you are part of the family here.
Of course you are part of our family. My husband has FTD as do too many of our bunch. FTD has been described as AD on steroids. The website you shared is excellent. Wish I had seen it when my husband first started showing symptoms. I would have been more supportive instead of hurt and angry.
JWife, of course you are part of this group as is anyone else who needs the companionship of those who fight dementia of any sorts! in the upcoming months you will need the help and guidance from those who spouses also have FTD here and are steps beyond your DH's progression. "FTD on steroids." of all the dementias in my opinion the hardest to deal with. i also believe the aggressive part of my DH dementia was FTD related but never diagnosed only vascular dementia. the rages they experience are common with this form of dementia so you will have lots of advice from those before you when you need it. the good part is they can retain alot of abilities for longer than just reg AD. sorry you have the dx but better to know upfront. divvi
Of course you can stay, my husband has been diagnosed with FTD also. The website you gave is very good--it was just fully updated a couple of months ago. Also, there is an FTD forum that can be helpful (especially regarding some of the behaviors and meds)--ftdsuppportforum.com. But this site is still the most helpful since it only deals with spouses.
I understand your fear about the diagnosis. When my husband was diagnosed last August, I completely freaked out. AS with AD all you can do is take it one day at a time and know that everyone is different.
Jim's Wife, You most certainly belong here. My husband has FTD also. He was diagnosed last July, even though he has had memory problems for about 6 years now. I also read the other sites you mentioned, however, I find this site the one I read 4 or 5 times a day. Hugs, Kadee
JimsWife, so sorry to hear of you DH's dx. My DH has FTD, too, dx'd 11/07. Our neurologist told me that it is the worst in "For Better or Worse". All we can do is hang in there and go along for the ride. You have my support as well as the support of all others here....M
Susan-I don't want to scare you-but please let your local police know your situation. This will be for your husband's protection as well as yours. My husband was taken away in handcuffs by two police cars worth of officers due to lack of understanding.
Excellent point. My DH is not FTD, but has AD (far as we know) . I had occasion recently to call 911 for assistance with him acting out. Believe me, it sure helped to prepare the responders before they arrived and they handled him very kindly.
My husband is still in the early stages. I have noticed changes since about 2006, a year or so after he had chemo treatments for bladder cancer. We originally put off the different behavior and memory problems to chemobrain. The doctors won't say if the chemo had anything to do with it or if it might have made it progress a little quicker in the beginning due to the chemo drugs--plus he has also been exposed to Agent Orange while in Viet Nam.
So far, thank God, I haven't had to deal with aggressive or violent behavior. He knows he has a disease of some sort but really doesn't understand how it affects him and others around him. He can be very stubborn at times and rude. My son noticed that I seem to be the only one who he listens to. His neuro did say that not everyone becomes aggressive. I can only hope it doesn't come to that.
Thank you all so much for your support, I am so very scared. I have only aggressi (which is what scares me the most) that I have had to deal with has been 2 times while we slept. Once he was dreaming and reached out and was choking me, I screamed and he woke right up, and then 6 mos ago he punched me and woke as soon as I screamed. The other night, (I was away with girlfriends and my Mom was home with him and he told me he dreamed he was in a fight. When he woke in the morning the bed was a wreck. So here I am tonight, sitting here wondering if it is safe for me to sleep with him until I can get a second bed. I know he worries about it too. So maybe I will fix the sofa up for him, he stays up later than I do. I feel awful about it, I want to be close to him, but at what risk? Advise please!!!!!
Sounds like it is too dangerous for you to sleep with him. If he worries about it too, then go ahead with your plan to sleep apart asap. What if he actually choked or strangled you before waking up?
My husband doesn't have AD either, and I asked the same question of the group, "do I still belong here?" And I got the same warm and reassuring responses. (He doesn't have FTD.)
Susan-sounds like you need to create a safe room for you in your house. You will need a phone and a lock on the door. Hope you never need it-but be prepared. When I was really scared I spent the night with a neighbor. Husband never even noticed that I had gone.
Thanks Kitty, I knew that was what I should do, but I guess I needed to hear it from someone else. Oh, this is so sad, I cry all the time, I was ready for the long battle of AD, this blew me away. Even after a weekend of relaxing with my girlfriends and venting, etc. I still feel weak and ill prepared. I got a phone call while I was away saying that our medicaid was being taken away because we were over the limit???? NOTHING has changed financially so I contacted our state rep who goes to our church and he and his assistant are helping. I found out that they are REQUIRED to cover us during an appeal process, so that buys us some time. Thethe Veteran's told us that we were over income, such a joke, we are really struggling, because we COULD NOT claim our grandson who I have permanent Legal Guardianship of! They said he had to be a step child, bio child or adopted!!!! So our VA case manager is going to try and fix that! Nothing is going smooth. Of course the Medicare will not kick in for 18 mos. I am so angry that I cannot even pray anymore. I don't know if I even believe in God anymore. I think this is hell and heaven is when we die and can just sleep. I just don't understand how a good and loving God cannot stop all the hurt and pain in the world. I have had more loss in my life than I could possibly list. Why do some of us live with this black cloud over our heads. I don't expect any of you to have answers, but thanks for listening.
My DH (dear husband) had AD (Alzheimer's dementia) and he became violent and was taken away in handcuffs, so the advice to let your local police know has some merit--just in case. If you can sleep apart, that will help, and keep a cell phone on you at all times. Some wives also have a room in the house they can lock themselves in. God, I hate to say this, but you might also be looking for placement if it continues to be unsafe. I only know about FTD from what I read about here, but the spouse part is the same--no matter the diagnosis, so yes, of course, this is where you will find those who understand--no marital subject is taboo. You'll be safe and understood here.
Susan-as a student nurse a million years ago I was told to never say "I know how you feel". I know how you feel. There was a time when a facility wouldn't take my husband because of his violence and the psych hospital said he didn't meet their admission criteria. I really wanted to die. There was no solution. I got no sleep and continued working. Dropped weight like crazy and looked like hell. If you would like to e-mail me my address is in my profile. Nora
jWife, you must contact his dr and tell him of the aggression while sleeping if you havent. he will rx something that can knock him out for the nite and if it were me, i'd be giving him whatever for him to sleep the whole nite out of it if need be! you cant put yourself in harms way. thats horrid about him choking you-sick or not you can be in danger. please arrange some place safe to sleep and get yourself prepared. due to the nature of his restless sleeping, i too agree you should move to another place out of the bedroom tonite. wishing you strength, Divvi
When I was in my 20's, I read Edgar Cayce's book, or one about him, "There is a River." It was the beginning of my spiritual journey. He was able to apparently tap into a universal life force & gave a great explanation for the existence of God, even with the evil in the world. We are given choices, basically. And we are here to learn life lessons. This is called the Earth School. From my frame of reference, we made agreements prior to entering this lifetime (I believe in reincarnation) and all is going the way it should, according to the agreements we made, to make growth in our souls.
I guess this is not the time to be telling you all this, but it always comes to mind when someone asks, why would a loving merciful God allow this?
I hope you find peace, I understand your fears and I hope you prepare yourself for your journey. Of utmost importance is to come out of this alive, and hopefully sane.
You are part of our family - it is an Alzheimer's site, but there are so many variations to dementia, and we're all going through the same emotions as spouses.
Alzheimer's Disease affects the entire brain - different parts of the brain deteriorate faster than others, and many, many AD patients, including my own husband, display FTD symptoms because the frontal lobe becomes damaged.
I found your sleeping comments extremely interesting, as we have had one episode of exactly what you are describing, and it scared me to death. After being hit in the head, and punched in the side numerous times, I woke him up. He said he was dreaming that someone was hurting me, and he was fighting them off. Unfortunately, I'm the one who took the punches. He was horrified that he hurt me. Haven't had another incident since that one time.
I happen to live next door to a county Sheriff. He is aware that Sid has AD, but after reading all of your comments, it's probably best that I update him periodically on what is going on here.
I agree with you calling his doctor regarding meds. My husband may not be aggressive but his neuro did give me a prescription for risperdal just in case I felt I needed it. I was also told to call immediately if any behavior was more than I could handle. Please call his doctor.
Dear Jim's Wife.... I hope I can share with you a way of understanding where your tears come from at this stage. I speak before Caregiver's Groups often, and I have used the Seven Stages of Grief (that usually follow the death of a loved one) to demonstrate the feelings we all share when living with any of the Dementia Diagnosis. See for yourself if some of this makes sense to you. 7 Stages of Grief... Upon Learning Your Loved One Has A Degenerative Brain Disease 1. SHOCK & DENIAL- You will probably react to learning of the loss with numbed disbelief. You may deny the reality of the diagnosis at some level, in order to avoid the pain. Shock provides emotional protection from being overwhelmed all at once. 2. PAIN & GUILT- As the shock wears off, it is replaced with the suffering of unbelievable pain. Although excruciating and almost unbearable, it is important that you experience the pain fully, and not hide it, avoid it or escape from it with alcohol or drugs. You may have guilty feelings or remorse over things you did or didn't do with your loved one while you still could. Life feels chaotic and scary during this phase and the tears will flow day in and day out. You'll continually think "IF ONLY"! "IF ONLY WE HAD TAKEN THE TIME ..." 3. ANGER & BARGAINING- Frustration gives way to anger, and you may lash out on someone else. Please try to control this, as permanent damage to your relationships may result. You may rail against fate, questioning "Why me?" You may also try to bargain in vain with the powers that be for a way out of your despair 4. "DEPRESSION", REFLECTION, LONELINESS- Just when your friends may think you should be getting on with your life, (say: after he has been placed in a Memory Care facility) a long period of sad reflection will likely overtake you. This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders. Encouragement from others is not helpful to you during this stage of grieving for the loss of your partner's presence at home. During this time, you finally realize the true magnitude of your pending loss, and it depresses you. You may isolate yourself on purpose, reflect on things you did with your lost one, and focus on memories of the past. You may sense feelings of emptiness or despair. You'll avoid couple gatherings and places you enjoyed going together. 5. THE UPWARD TURN- As you start to adjust to life without your dear one , your life becomes a little calmer and more organized. Your physical symptoms lessen, and your "depression" begins to lift slightly. 6. RECONSTRUCTION & WORKING THROUGH- As you become more functional, your mind starts working again, and you will find yourself seeking realistic solutions to problems posed by life without your loved one to guide you or to support you. You will start to work on practical and financial problems and reconstructing yourself and preparing to live your life without him or her. 7. ACCEPTANCE & HOPE- During this, the last of the seven stages in this grief model, you learn to accept and deal with the reality of your situation. Acceptance does not necessarily mean instant happiness. Given the pain and turmoil you have experienced, you can never return to the carefree, untroubled YOU that existed before your loved one became ill. But you will find a way forward. You will start to look forward and actually plan things for the future. _______________________________ I hope this helps someone.