Oh, where to begin. I don't usually post personal stuff on FB, but today has been such and extraordinary day of loss I just have to share, probably because I need some love. As some of you know, my husband has Alzheimer's. We've been at it now going on six years. We have been doing ok, but the progression of the disease seems to have suddenly gone berserk. We haven't slept in the same bed for a long time now, and today I find myself moving to another room entirely, to sleep, with a baby monitor to make sure he is ok through out the night. He has simply crashed the last couple of days. We get up, have breakfast, shower and what not and then...I lose him entirely. Sad, weepy, doesn't know if he's hungry, doesn't know if he needs to use the bathroom.........I'm sorry if this too much "FB information"; tonight I am very lonely and alone. Thanks for "listening."
pamwiebe I am sending love and a great big ((((hug)))) your way. The cruel part for the caregiver of Alz is never knowing when sudden changes in behavior will happen. This is a lonely time of year without enduring this sudden behavior change. You may want to contact his doctor for a medication change or addition. Being sad and weepy are common with Alz patients at my DH's NH. A few days later the same patients will be calm and smiling. I hope you find something that will help him. We will be here for you because we care and completely understand.
The traumatic events in your life right now are not FB information or too much information - they are events everyone here has gone through or will go through. I also moved out of our bedroom which was a big thing to lose. We talk about how to deal with poop around here and many have started a thread with a necessary rant. There is no such thing as too much information around here because every one of us is in exactly the same boat.
I'm sorry that so much is changing so quickly suddenly. AliM gave you good advice. I urge you to open up more which I say because of the number of posts with the six years you've had it and the date you joined. Just talking to people in the same boat can be a life saver at the right time.
Pam, I echo what Wolf said. Opening up on this site is the best medicine for the caregiver. This time of year is hard on everyone, but even harder on the care givers. Come visit "the Lodge" and give yourself some virtual respite, or vent and rant, as need be.
Pam, as everyone said, you are definitely not alone when you visit here...we have all been through it or will be so who better to understand? It is so difficult to witness our spouse decline and when changes happen suddenly not only is it heartbreaking but frightening. And of course dealing with the changes during the holiday season can be overwhelming...it's supposed to be "the most wonderful time of the year", right? I would try to contact his doctor and see if s/he can prescribe some medication to help him (and you) through this phase. Keep posting, we're here for you.
LFL, Is it just DH's doctor that he's seen for the past 19 years or what? You suggested to Pam to contact the dr. Our doctor acts as though you're asking for forbidden fruit. He discourages any thought by telling me all of it is addictive. He also knows Alan nor I take very much meds. He finally prescribed Risperdal. I gave Alan one and that night was absolutely one of the worst. The doctor is an internal medicine doctor, specializing in geriatrics. I'm seriously thinking about changing doctors.
My dear Carolyn, frankly most of DH's doctors suck. Pardon my language but it's true. We live in a rural area in NJ (yes it's true there are rural areas in NJ) and it's hard to find anyone who's knowledgeable about treating dementia. But since DH was diagnosed in 2008 I've become a bitch with anyone who is treating him unless they listen to me. Yes, it's difficult and confrontational and yes, they hate me sometimes, but it's what I need to do for him. And believe me the pool of competent physicians in our area is small. But if your DH's doctor won't or doesn't have the experience to treat your husband as YOU wish then get rid of him. I think the 19 years of treating him can be the problem...he might be in denial as well. I had one doctor severely reprimand me for allowing another physician to prescribe Seroquel saying to me very sternly "you know there's an increased risk of death in dementia patients when this drug is used, can you live with that?" My answer was "Dementia is a fatal illness so why would I be worried about the effects of this drug? He's dying anyway, right?" He just looked at me dumbfounded and renewed the prescription.
Explore going to another doctor to get what you need. Be upfront and candid about what role you expect him/her to play and what role you'll have. You may have to kiss a lot of frogs....
Risperdal made my husband a zombie after 1 very small dose. Stopped that immediately, although I do know it has been very useful for some.
Carolyn, there's hope but you may have to look hard for a dr who has the experience to effectively treat your husband. (((HUGS)))
As many of you know I am a retired primary care physician. The doctor my wife was going to did not seem interested in discussing her AD. Finally, after several visits of my asking for help, she referred me to another physician who specialized in AD, but he would not take care of her diabetes and high blood pressure. At that point I transferred her care to a family physician who was willing to deal with all the problems and listen to me. This physician did a very good job. I'm only sorry that we have had to change physicians due to moving to a new facility, but the one she has now is one I helped train so I know he is good.
Seroquel made my DH a zombie, but resperidone is doing well with him. Sometimes I omit it and I usually regret it, because he will be argumentative about everything.
good for you Marsh. I tell folks that medicine is a business. IF you go to the mechanic and they mess up, you go to another mechanic, If you go the hair dresser and they turn your hair orange you go somewhere else. It is the same with docs, if they refuse to listen or make things worse, pack your tents and move on to another one.
Marsh: We were very fortunate our PCP sent us 7 or 8 years ago to a research Neuro to confirm his DX and DW participated in a new drug trial Her test all showed statistically significant improvement but she was a tiny minority. No drug was made available for compassionate use and the med was never commercialized. We then turned to our PCP who is Board Cert in Geriatric Medicine, 1990, Hospice Care and Palliative Medicine, 2008 and Internal Medicine, 1989 He and my wife's Oncologist managed her care right up to the end. Our PCP as well as other Hospice MDs saw DW at the Hospice skilled nursing home right up until her passing