Like so many of you, I have been constantly, relentlessly trying to find a way to improve my husband's life. I have had him on coconut oil, Vincepotine, other natural helpful supplements, have fought with the doctors to reduce the antipsychotic and other medications to the lowest effective dose, and have done so many things to try to make my DH better, happier, something more. Well, I have come to a turning point. I now know that we have crossed a threshold, a kind of point of no return - not that I had much of a chance of doing much, but I did improve his clarity and his quality of life. As I have mentioned elsewhere on this board, my DH was put on Risperdal because he was having visual and auditory hallucinations (typical LBD). It took 4 mg of Risperdal to make the voices stop. Over the last year and a half, I have worked to get the dosage down as much as possible. The Risperdal made him so flat that I talked to the doctors and we migrated my DH to Seroquel. It took 900 mg of Seroquel XR to make the voices go away and we couldn't remove the Risperdal entirely because my DH started having full body jerking (the Risperdal actually reduced the involuntary jerking - go figure!).
Now for why I am making this post: last night, my DH finally "confessed" - he's been hearing voices and seeing things. I did see a comment about a possible connection to the full moon, but the voices and visions that my DH told me about have been happening for the last month or so. I have asked him about different things he has done (he denied any visions or voices at the time) and he has mentioned having more sleeping problems (just not the voices that he heard of at the time), but he just kept denying hearing any voices or seeing anything. He also mentioned sensing a presence (not actually seeing something, but sensing a presence and feeling a compulsion to waive at it).
I knew, even as I was trying to comfort him, that this is it. They will have to increase the medicine ... and his decline will go faster (as if it weren't already going fast enough!). I have been seeing other things that have been pointing to a steep decline, including, to identify a few, (1) the sudden and inexplicable drop in blood pressure 2 months ago (his heart is the same as it was 2 years ago, so it is his brain), (2) increased slurring of his speech and difficulty moving, (3) increasing gaps in not only short term, but also long term memory, (4) problems with urination (excessive fluid retention requiring doubling up of medicine - both Uroxitral and Flomax) - he can't go, and (5) increase in hypopneas (sleep apneas where my DH takes breaths of less than 30% - due to Central Sleep Apnea - brain signal malfunction).
Bottom line: we have to increase the medicine because my DH's dementia is getting so bad that our sand bags (the ones that have been holding off the flood) are leaking. With the increase of medicine will come a corresponding decrease in clarity, a faster decline. I feel it, it is all down hill from here. There's nothing else I can do. They've taken him off of Enalapril, Vytorin, all of the supplements except for the daily vitamin (liver enzymes have gone up), and are talking about taking him off of Aricept. Aricept didn't really help much, but still ... its like we are beginning on the hospice track without declaring that we are on it. My DH has serious dental problems (a filling fell out, peritonitis (gum disease), broken teeth -- and he's only 51!). I asked the neurologist about what to do because the dentist said my DH needs a root canal, scraping (or something like deep cleaning), and a ton of other stuff. The neurologist said we shouldn't get any dental work done unless my DH is in pain.
All of this sounds like the "end times" to me! But I am not ready. My DH is still here ... sometimes ... for an hour or 2, maybe 3 (on a good day).
Can any of you veterans or others on this track help me interpret where I am. By the way, I did ask the neurologist what is ahead and he said no one can know. That is the same thing the people at UTSW/NIH said!
sharan-you're sailing uncharted waters. Sounds like you've done everything right-but the sand bags are leaking. There comes a time when we have to accept the inevitable or torture ourselves to death. The monster will get our loved ones. My feeling is if we can keep them comfortable and safe then we have done our job.
Sharan-- We know what's ahead. Maybe not specifically, but in general. IMHO your neurologist and others of his ilk, are CYAing. They don't want to tell us anything that could come back to bite them. We can't know the specifics each of our LOs will go through, but we know they are on a long slow slide. We have to hang on tight to every good day, hour, minute we get. At the same time, though we are not ready for the end times, we have to prepare as much as we are able. At least we know what is wrong. We are doing and continue to do all we can to facilitate the best life we can for them. And as we approach the "end time" we can strive to ease them through that too. There is a part of us, I think, which will "never be ready" for the end time. But, we can comfort ourselves that we have done all we can. I am sorry that your situation appears to be sliding. We are here to help all we can.
Your husband is young and so was mine when he was diagnosed 8 years ago at 53. I have also noted lately he is again on that slippery slope. We grieve so much stage to stage . We all know the inevitable. All we can hope for is that he is treated with dignity and respect. I wouldn't let go till I got hurt and was forced to place him. He has dropped off a cliff since then. From 206 at the beginning of the year, he is down to 167 and yet still seems to eat well. He is very rarely commutnicating but his eyesight no longer is there and his hearing is very compromised. How our hearts ache watching this person we cared for so deeply to fade away and have no control. I have been told that eoad progresses more quickly and I have to agree. I miss him more and more everyday. I try not to think about tomorrow and focus in the moment. I wish you peace and will keep you in my prayers.
The loss of dignity is what really hurts. To see our loved ones in diapers and needing to be fed pureed food is devastating. I need to get out of this thread. It feels like rubbing salt in a fresh wound. And every day brings a new one.
Sharan, This horrible disease is series of never ending readjustments to our losses. My DH, in the last 10 days, has had 3 ER visits, one outpatient surgery to put a plate in his wrist, pneumonia, drop in physical and cognitive abilities, one dramatic drop in bp, and is still on fair levels of supplemental oxygen. Do I hope this is a fast slide to the end? Or pray it isn't?
Bluedaze - I am sorry to have opened the can of salt.
Sadly, I fell like a gaping open wound filled with salt. But, I am following the good advice I find here and appreciate the understanding of each of you. I am hanging on to each good moment as tight as I can. I cannot do otherwise.
I am not there yet Sharan but things are also escalating here but not as fast as yours. I will keep following your posts. Please try and distance yourself from the pain of seeing him in this state. I have been distancing myself for some time and it is easier on me to sort of "look on at the disease" and ease some of the pain.
I read a post once on this blog: http://lakecocytus.blogspot.com/ about patients who choose to go off aricept because they are aware of their own decline and find it upsetting. The doctor had had the experience that when they go off and are less aware they are indeed happier. My husband is in the very early stages of LBD so I don't have any useful experience, but I know how hard it is in our culture to face not being able to fix something.
Sharan, decline we know is inevitable but i think some of your meds are producing some of these life threatening changes. the uroxatral and flomax BOTH can have sudden drops in BP. you are using both -double trouble. ask your dr about that. we have the BP drop using uroxatral now and had the same with prior use of flomax. my DH chews the pills they are extending release, they must not be chewed. it gets too much into the system and drops BP. i am having our doses done at the compounding pharmacy in smaller daily doses to avoid the metabolic issues assoc with the breaking of the pills. flomax did the same thign andhe didnt chew that one. slurring words and balance issues can also be from meds. i dont know what the solution is if he must take all these medications but we saw bluedaze is weaning hers off the seroquel and he has made a rebound much to her surprise for the time being.not saying take him off all meds but you may want to discuss with the dr- as far as the voices/visionns, if they arent producing any aggitation or aggressive behavor why increase the meds? my DH i have suspected of having some LBD mixed with VaD/AD due to these acting out things too. but they dont bother him or me if he 'sees' things or reaches out to touch or wave at someone:) normal i guess for these guys is a relative state of calmness and the ability to live with us without volatile issues. i have been living with the hallucinations for yrs and its been no problems really other than the shocks of watching him talk to statues. i guess you have to decide what can be normal in their world. ! divvi
Are you asking, "when do you know that this is the best it's going to get?"...... When I look back at yesturday or last month ..... or two to three years ago and accept the decline. When I notice his docs are giving him medications to help me control and keep this 'adversary' of mine from hurting me. When I notice he won't do anything for himself and I'M taking medications just to allow me to BREATHE properly. When you can look back at the life you used to enjoy and have watched your friends disappear. You can't leave the house because it's 24/7 care. When the finances are gone from mismanagement over the years due to AD creeping in and you never paid attention yourself. Are you kidding? it's never going to be any better than this moment right here. It's downhill. I won't kid myself. In another part of my life, not now, but soon....one day....it will be brighter . Promise.
I have researched all of the different medicines that my DH is on and understand what you are saying. There are so many details that get lost this kind of forum. My DH's blood pressure and pulse dropped before we made any medicine changes - after he had been on the medications he was on for about 9 months without change. My DH started retaining fluids (gained 6 pounds in 3 days), having pain with urination, and not being able to empty his bladder on Uroxatral alone. On the current meds, my DH is not having as much trouble. I believe the problems he is having relate to the LBD (autonomic dysfunction).
As for the hallucinations, I don't care if he has them, but he does. They scare him to the point that he would rather do almost anything than to continue to hear them. His father was manic-depressive with indifferentiated schitzophrenia when my DH was 6 weeks old. I think my DH's experience with his father makes his current situation so much worse for him.
To me, this is a prime example of chosing between what I want (him as much as possible) and what will make my DH's life (what's left of it) as good from his perspective. So, if that means he increases medicine that decrease his "presence," then so be it. If all of the medicines that he is taking to make his life a little better while he is here shortens his life expectancy, also so be it. Everything comes at a price. Happier, more content, more comfortable, less frightened, less worried about being a burden - all of these are my goals for my DH. I know I am not alone in my views.
Sharan, are you using multiple doctors to control those medications? If so, get the family doctor on board and have him/her and only that one doctor order all regular tests and all refills of prescriptions. Someone already caught a drug duplication (or side effect duplication). My husband's medication list is a yard long, but it doesn't sound like it is as long as your husband's. I made that one change a couple of years ago. Most of the doctors involved were pleased to know that the family doctor was checking for bad interactions.
My husband is not on anti-anxiety meds or anti-psychotics. The subject has come up. The doctors are ready to prescribe if necessary. But he isn't violent and he isn't depressed at this point in time, so we aren't using them. If your husband isn't violent or depressed, consider keeping those drugs at the levels they currently are at.
We have kept the medicines being prescribed down to 2 doctors. The internist/sleep disorder doctor handles the basics, but the psychiatrist has been handling the other medications. We are now going to migrate the medications from the psychiatrist to the neurologist who will be managing my DH's medications from here forward. The neurologist has extensive experience with dementias (so he knows what he is doing) and my DH likes and trusts him. The specialist at UTSW that reviewed my DH's case agreed that we had the lowest effective doses of medicine and did not have any changes that he would suggest (at that time). Now, of course, with the blood pressure changes, liver enzyme elevations, and return of hallucinations (and their effect on my DH), the medicines have changed. Almost all of the non-prescription "medicines" (including fish oil, garlique, etc.) have been dropped as have enalapril and vytorin. It is only now that we are going to increase something that we had reduced. My DH's fear of the voices is almost tangible. He reminds me of a small child seeing something very scary or believing, really believing, there's a boogy bear under the bed. Oh, I almost forgot. Before we learned about my DH's dementia, he was suicidal - 2 times - to the point that he had to be hospitalized (he had a psychotic break during the 2nd admission). So ... I am not taking him off of the antidepressants. Based on how sad he sounds when he talks in his sleep, I even wonder if he is sadder than he lets anyone know. That is for another day. I keep praying for him to have peace ... for all of our LOs to have peace.
Often your pharmacist will offer the service of double checking the drugs and insuring they are not duplicated or contradictory to one another. My pharmacist and I have developed a good relationship and she has helped me so much in the past on my own medications. For example, if my doctor would double the strength of one medication, I could cut it in half, and almost get two pills for the price of one. Let me tell you, that particular idea saved me almost $45 a month which over a year truly adds up. My doctor had no problem with doing this, and said "Great idea!".