How are you? It seems like it has been a while since you've posted....I hope things are going as well as possible and just wanted to let you know you are missed. Best wishes for the New Year!
I apologize that I haven't been on the forum in awhile. I haven't been on as I have been struggling, as many, trying to survive the holidays. To complicate things spouse's Neuro removed him from a medication which was controlling his behavioral rages (zyprexa). I begged and begged for him to be put back on the med, but was never given a good reason why other than it is time for placement. This is not an option as I can not afford placement. Meanwhile spouse was seen by his PCP and given a new medication which worked temporary ....very temporary only to have the raging madman once again return. I am stressed out, worn out, and fed-up wondering why he can't be returned to the zyprexa?????
I do have an appointment scheduled with a new Neuro guy. However, it's months out! Meanwhile when the PCP's office opens after the New Years Day I will be banging at his door begging for the zyprexa or another anti-psychotic.
Thank you Abby and LFL for your concern. I truly wish you ladies and all here a Happy New Year.
Oh lulliebird, I'm so sorry to hear that you are having these problems. It's sooooooo frustrating to finally get something that works only to have it taken away. It makes you want to drop DH off at the Neuro's office & say that you will pick him up when they give you the prescription for zyprexa. I was fortunate that when my DH refused to go back to the Neuro our PCP told me that he would help me with whatever meds DH needed & when I asked him to prescribe Seroquel he did.
Thanks for checking in..........we tend to worry about those who we don't hear from in a while. (((HUGS))) to you!
Thank you for your understanding. Only a caretaker of a dementia spouse can truly understand the impact and frustration of trying to deal with their physical, emotional and behavioral problems. Frankly speaking, I don't give a flying flip about what alphabet soup letters come behind a doctor's last name because we see them daily and have the pulse on the situation. I only hope tomorrow the PCP will hear my pleas and desperation for the former medication to be prescribed again. In between today and whenever my call is return I am trying to be as vigilant as possible.
BTW, Yesterday spouse scared the daylights out of me....he was again on prowl in the garage looking for his knives. All potential weapons, which I am aware of, have been removed and locked away, where he has no access however during the prowl as I was carefully watching him spouse came upon what appeared to be a small silver sized pistol....I was standing sideways only about 18 inches so I couldn't see the "weapon" directly face on. He then raised the "weapon" pointed to me at close range and aimed at my chest saying "bang bang you dead". I freaked....it was a steel handle of a trigger to some sort of a tool gadget. This action spoke volumes as to his rage and violence towards me.
Lulliebird, I'm so sorry you PCP let you down. I don't think I could make it without resperidone. I hate to give to my dH. It makes him sleepy, but if I don't he has a whole other personality. One that's difficult to live with. Do you have any nerve pillsin the house. I make sure I have plenty of these on hand. I'm a retired RN. So always think ahead about meds u need, think ahead of holidays and etc.
Oh lullie, I'm so very sorry you're experiencing this again. You know our story so I know how frightening and upsetting this can be. Keep calling the dr so your spouse can get some meds to control him. It's always a battle, isn't it?
There have been a lot of articles lately (or seems it) about the mis-use of anti-psychotics for dementia patients and the dangers they can cause aka death. I wonder if his neurologist caved to the pressure when he took him off. Who cares - if it is a choice between your safety and remote possibility of his death - I would take safety.
I am so sorry to learn what you have been going through. My husband was not given respiridone until he was an inpatient in rehab. I really did not know about the use of anti-psychotics until reading about it here. I do though know what it is like to be afraid.
I will always remember the rage. I remember when my husband was about to be discharged from a hospitalization a few years ago. He expressed that the entire experience was my fault and said that once we were home he was going to make me disappear. He said this in front of a nurse who said it was because of the meds he received upon being admitted.
As said here, your safety is paramount. I am hoping so much that you find some relief from the PCP tomorrow.
Where do you live, lulliebird? USA or Canada? Doctors can be such big obstacles - glad you have appointment with another Neuro. Did you ask this doctor why he took your husband off the drug that keeps him calm? That your husband is a maniac without this drug and you are in danger from him? Phew! I am so sorry for what you're going through. My dh was aggressive in the beginning and still gets that way if I allow him to drink too much alcohol, so I know how anxious that hostile behavior is making you and how hopeless it all seems at times. Have you talked to the local police about your husband? Our local sheriff has mine on file and knows all about his disease, etc. Glad you have removed all weapons. Gosh, there's something so immoral that you are forced to care for someone so hostile toward you and dangerous - you're going to have a heart attack or stroke yourself, at this rate.
Sorry, I'm not sure this was any help for you - I just feel so bad for you. Makes one want to run away and not come back.
lulliebird, if it were me I would make sure to send a note to the drs office prior to the visit, like an email where you have a copy. and lay it out that the hostility has you fearful for yourself. this lays the notion on the dr that something needs to be done to control this aggressive behavior. if he cant control it then he should direct you to where you can place him *ie-geri psyche unit, so he can get meds ironed out that will help you care for him free of fear. keep records of what you send to the drs and if all else fails contact a new dr asap. there are many out there that get it and know how dangerous they can be. and make a call to the local police enforcement in your area to make sure they know where you stand if you need to call them. weapons or not, they can be VERY menacing with just their own hands as weapons. many of us have had issues with them turning on us and choking or punching. it can get serious. I would make sure things get moving to get this resolved before it gets any worse. best regards, divvi
I have been circling this hole in my life left by Lloyd endlessly...hoping it is not a drain that is going to suck me down into more darkness. I know I need to talk to someone, but I just do not like spilling my guts to strangers. Contemplated going to an Alzheimer's meeting, but a little late for that now. I could envision myself saying "You all know you're screwed, dontcha?" So I kinda ruled that out. Maybe the Hospice grief thing. When our loved ones go, it is so different from other kinds of death. Our time frame is so skewed. Accidents snatch people instantaneously. Cancer and other kinds of disease usually have some kind of definitive time. Alzheimer's just goes on and on and on. It just seemed like forever. One month before he died, Maria found me sobbing in my bedroom with poor Lloyd right there. I told her I knew I was going to lose him. She said it could take forever. I swear it was a premonition. I wasn't on the computer like I had been. If he was in bed, I was with him. I sucked up all I could of him while I could. 2014 is a new start. I have cut the vast majority of his family out of my life. Now I intend to not even speak their names anymore unless they bring something good to my life. I still spend as much time as I can with his cousin Carol and her family. I occasionally talk to his brother Bobby who tells me that I am all he has left of his brother. He is like a brother to me. He knows how I feel and I know he misses him as much as I do. They were 18 mos. apart - brothers and best friends. I miss Dad, but it is best if I don't stay in touch with him. I have blocked 95% of his family on FB...don't value their drama or opinions...don't want to hear it or see it. May cut more as the year goes on. I intend to get at least a part-time job. I want stuff.....new cabinets in the kitchen...a handgun...a new car...things that are out of my reach with widow's SS and I don't want to dip into the emergency fund anymore. Need a job I can just do and have minimal contact with other humans. You guys are my buddies. You know where I'm coming from and where I've been. Love you guys!
Lullie, so sorry to hear of your trying time :( The others have offered excellent advice so I will only add my support and some ((hugs))
Linda, it is so good to hear from you! When I read your post about the pain and how lost you feel, I just know this will be my fate as well. We were always alike in some ways, one of which is that unlike so many, we didn't harbor ill feelings or resentments towards our poor spouse. We simply loved them with all we had and wanted to keep them with us forever. (as long as they weren't suffering)
I imagine it will hurt forever... I pray it hurts a little bit less with time and healing. Much love my friend ((hugs))
Nikki, you are so right. We are alike! I NEVER resented having to take care of Lloyd. I secretly wished and knew there were plenty of other people who may have deserved the disease more than Lloyd. Damn, I'm going straight to hell for that one, huh? Grief and pain is a lot like the ocean...sometimes calm, sometimes little ripples, other times tsunami waves.
Hi guys, How nice that you would think of me. I returned from Japan on Thursday. It was wonderful. My son did everything he could to make my visit a happy one. It was the first happy Christmas I have had in years. In our family, stockings were always a big thing. Even as adults, they were a Christmas tradition. When my mom was alive and well, we would all sit on our bed Christmas morning, carefully unwrapping the tissue on each little present in the stocking. For the last few years of Gord's life, I bought the things for my stocking and wrapped them and then opened them while he tried to figure out how to open his. The last 2 Christmas's, of course, there was none. I was so happy that Tim had bought me a stocking and he, Reina and I sat opening them together. being with my granddaughter was everything I hoped it would be. She is precious. The three of us had great adventures and Tim and I had great adventures together as well. He is already planning our next series of adventures for my next visit. I am so lucky to have had such a wonderful time.
I am so sorry to hear of your hard times, Lullie. I remember the aggression well. I have been where all of you are and I know the strength, love and determination the journey takes. It takes a toll and there is no denying it. I am so proud of all of you. You will survive both the journey and the loss at the end of the journey. You are all incredibly strong.
Thanks for thinking of me and I hope that 2014 brings some good things into your lives.