So very frustatated here with medicine adjustments/behavioral problems and the medical systems. Today I feel like I am being swallowed into the pit of hell. So here is my question":
Husband has been on seroquel in the past and I saw little improvement in his aggitation levels. Perhaps, because the dosage was very mild in comparison to what I have read on the internet and past posts from members. I reported this to his medical doctor (psy) and was basically told that the aggitation is just part of the disease as is hypersexuality (FTD/alz) and there really isn't a whole lot to do. He suggested that we stop the sequel and start him on olanzapine generic for Zyprexa (one tablet 5 mg before bedtime). I am still dealing with his aggitation.I am very frustrated because I have read on the internet that this particular medication is not as effective as seroquel plus they do not recommend it on the treatment of demenia in the elderly.
Also, I find it diffcult to say that no medicine can help control agatitation because of FTD. What to do facilities use to control their patients? Perhaps its in the dosage ..... I hate to rock the boat and change doctors (I have already switched PCP recently as his internist said it's not necessary to give husband a PSA exam has he is now in his late 70's!) The psy. doctor who is managing my husband's FTD/AD returns my phone calls directly and in a timey manner and that is refreshing to see in this age of medical care. I think that perhaps to dosage is too low perhaps. Also, Husband's neuro guy doesn't to the medicine adjustments, but leaves this to the psy. doctor. Don't know if this is protocal or not? Any feedback here?
My husband is declining quickly..and doctor only sees my husband 15 minutes every 3 months---I don't think he can't really grasp the decline I am seeing. He asks the same damn question each and every visit..."what's the date, what city are we in, and what floor are we on?"
The decline: In August 2012 husband drove car across USA...lost license in November 2012...now can't remember his family visiting us last week (they were here for over 3 hours) and can't remember his favorite cousin? This is happening so very quickly...I thought alzheimers and FTD were a slow decline. It's happening so quickly that my head is spinning and so overwhelmed with fear of the future. Thanks for allowing me to vent gang!!!!!!
Oh lulliebird my heart truly goes out to you. Actually most people with FTD decline rather quickly, so that shouldn't be surprising...yes, devastating but not surprising (see abby's* posts).
I am sorry but you just CANNOT accept the drs telling you that agitation is part of this disease. You already know that...but it is the dr's job to help control your spouse so he's not a danger to himself, you and others. My hb is on seroquel and has been on a rather large dose (300mgs/day) to control behaviors. Your husband as I recall is on a very small dose (maybe 50 mgs/day?) and honestly I don't think that's an adequate dose to control him. To be clear, seroquel, abilify, zyprexa all have the black box warnings about use with the elderly and dementia patients. You gotta do what you gotta do, right? I have no problem giving DH seroquel, he's going to die anyway and why not give him a med to control him so he can be home?
In our case the geri-psych prescribes the anti-psychotics and other meds to control his behaviors. We don't see a neuro because there's no reason to unless he/she would prescribe the drugs dh needs. Everyone is different and it took us a long time to get to this current "cocktail" but dh is on 300 mgs/day of seroquel, 600 mgs/day of neurontin, .5 mgs/day of klonopin and 10 mg/day of melatonin. The meds are spread out during the day, but the seroquel and neurontin really help the agitation and aggression.
To answer your question, how would they control him in a facility? They would chemically restrain him through meds like haldol, ativan possibly the one that you massage into the skin so that he becomes a zombie. Or they would kick him out of the facility. We saw a geriatrician in December 2012 and I asked him the same question. He told me what I've just told you. The facility would absolutely need to control the behaviors and would chemically restrain the patient "until he looked like a pretzel in a chair".
As you know, we've recently started again with the hypersexuality but it seems to have subsided for the moment. We were never given anything to treat that but were adivsed that Risperidol helps. Don't know, dh has a sevre reaction to it.
BTW, dh's psych asks the same things...I finnally told her we don't need to know where he is on the mmse scale-it does harm to both of us. I do actually think they need to document the mmse score so that they get paid from medicare/medicaid.
Let me know how I can help during these difficult times.
Lulliebird: I am so sorry for your problems with this disease. LFL gave you some very good advise that closely follows my experience with my DW. She also declined rapidly and had the same agitation. She was on Seroquel, but the dr changed it to Zyprexia and Xanax. The Xanax was on an 'as needed' dose, but, I later ask them to put her on a daily regimen. Which they did. LFL is also correct in telling you what facilities do in these cases. I have seen them send patients to a psychiatric hospital or actually demand that the family remove them. And they had to do it.
My other advise is that the dr was right about your husband not needing a PSA. The question is what are you going to do about it if it comes up positive. My DW had cancer and as her dementia worsened, we quit treating it. If she had survived the cancer, what kind of life would she have sitting in a nursing home not knowing any of us.
I feel for you and I wish there was something I could do to help. This is a terrible disease and the caregiver suffers too.
LFL, I really wasn't aware that the FTD was a rather quick decline. This morning he awoke and didn't know where he was. I would repeatly tell him and he was so disoriented. He sat out on the patio drinking his coffee and kept asking me what where he was. He returned to bed and awoke at noon and was totally alert. Damnest thing I have even seen. Yes, you are right...it's hard to wrap my head around what's going on...it's spinning so quickly. Thank you LFL for your continued support and care. I really appreciate your dedication! Thank you
Dean haywood*..may I ask how long your process was with you DW? I will look into xanax for a "as needed basis". I really think these doctors are resistant to this medicine, but would cares about the addiction level when they are terminal. I never thought about your reply to the PSA question...very good point! You are absolutely correct. Thank you for your compassion. Yes, it is a monster of a disease for both the patient and the caregivers. I appreciate your caring concern.
While FTD typically has a faster decline than Alz, there is wide variation. My wife is a slow progressor, dx in 2009 and most people I know who had a dx that year are doing worse than her now.
lulliebird: I am sitting here emphasizing with you and it brings back memories. Just remember tho, that he can't help what he is doing and how he is acting. I wish I had realized this earlier. It would have made my life a little bit easier. Also, remember that he doesn't understand why he is like this and, in his better moments, he doesn't want this to happen.
Not all dementia patients decline at the same rate. Some decline slowly and others (I think a minority) decline rapidly. But, with certainty, they all decline. Over a period of six months, my DW fell off of a cliff and there was nothing me or the doctors could do to prevent it.
You are right about addiction. Who cares. I also told the NH people not to make my DW do anything that she didn't want to do. It was OK for her to stay in bed or anything else. I only wanted her to be comfortable and happy. All she wanted in life for her last year was to be with me or for me to sit with her and hold her hand. Which I did as much as I possibly could.
This, after a year of her hating me and wanting a divorce after 50+ years of marriage. When we got her on the right meds, she was an entirely different person.
Paul, Until only recently I wasn't aware of a disease called "FTD". For the last 7 years my husband has been watched not so slowly to see if he had alzheimers based on poor "executive thinking" coupled with the fact that his father, his brother, and paternal uncle all died on alzheimers. His behavior was very distant as he removed himself from me. He moved out of our bedroom and withdrew from all the things he formerly loved (which included me) and emerged as a man who looked like my husband but became someone else.s For example, he was never interested in church then he became the star volunteer at church giving most of his all to doing things above and beyond. When he wasn't doing church volunteer he would slip out to visit escorts (of which I only recently discovered). His love for travel and l exploring the world came to an abupt stop. Rewinding the years now I truly believe that he's had FTD for many years. Yes, he has a "twofer" as he is also dealing with alzheimers as are some others on the board. Thank you for providing your feedback. It's a tough disease, but with God's grace we will survive! Hang in there buddy.
Dean* Yes, thank you for your encouraging words that he can't control how he is acting. There is comfort in knowing that. I am finally learning (very slowly!!!!) that he has no control and his filter is kaput. Yes, my husband has fallen "off a cliff" too. He managed (or so I thought) to cover-up and lie for many years. What he told he I believe as Gospel----I really felt like a dumb-bunny after I learn his deceit. I am slowly learning to forgive myself. I should have seen all the "red flags", but I was blinded. Perhaps my vision was dimmed because he had distance himself from me. He became so aloof and our conversions became more "yes" and "nos". His temper was unbelievable but he concealed it to others. He had the doctor fooled, he was a model neighbor, church greeter, and volunteer. As the world saw him he "walked on water". Nobody knew the real Stephen except me and I didn't even know some of his darkest secrets. I am sure that I will never know the full extent of much of his behavior during these years, and now it matters no more. Yes, it was a a blow to my ego and self-esteem. I have always have taken pride in looking and dressing my best. I tried to be appealing, but because of his disease he grew tired of me. Do I love him today? Not in the typical husband/wife love..no absoultely not. I will provide him all the comforts he needs to allow him to be as comfortable as he can without endangering his safety. I have an agape love for him. I no longer consider myself a marriedd woman. However, I am not single or a widow either. I have the unfortunate marital status (as many of the members here have) as status "unknown" marital status "unknown". I wish you well as you continue to contribute your wisdom and experience of how you coped during these horrible struggles. God bless you and thank you for your some valueable encouragement!
lulliebird: I have been to hell and back and nobody is the same after they have made that trip. I was known as a 'married widower', but, I remained faithful to my DW as long as she lived and I am glad I did. I have no regrets about the way I took care of and treated her during her lifetime. And I have the respect of my children and friends. But, even tho I still loved her after the year she hated me and treated me so bad, it still wasn't the same. I don't know how to describe it any better than that.
I think you realize that this disease is progressive and that you will likely be a widow someday. Because of that, please take care of yourself. Not anymore stress, etc., than you absolutely have to have.
lulliebird, how are you doing? as paulc says, each dementiia person declines at their own rate, but in many cases, those with FTD are generally younger (50's, early 60's) and their rate of decline is often faster than those with other dementias. My hb was dxd in 2008 and is still doing relatively well 5 years into this horrible disease. But as I've said before I truly believe he had symptoms at least 4 years before. So, in our case, he's progressing about the same as someone with an alz dx, almost 10 years. So that's clearly not faster than many. But I mentioned it so that you wouldn't be surprised if your hb declines quickly. Our journey has been a dramatic decline in 2008, stablized through 2010, severe decline in 2011 after a hospitalization after a seizure, and a continual moderate decline since then. But Rich is fully ambulatory, mostly continent, can follow instructions most of the time but has impaired speech. Who the hell knows the journey we will take with our spouse.
Also, medication can hide the progression (but not slow it). My wife's progression sped up this year. I think medication and stopping work and hiring caregivers a few years ago resulted in improvements. But I suspect that the drugs aren't working as well or the progression has gone beyond the point of what medications can help. She is pretty aware of things but her neurologist considers her condition to be severe and has recommended thinking of ALF (which means she things ALF is necessary). Her psychiatrist has be recommending me to look at ALFs for the past years. So progression for an individual will vary and, I believe, as you get in deeper falling off a cliff is normal, especially if medication has been successful in earlier stages.
Dean*, I understand your road trip "hell and back"...it's a journey I wish for no one. A journey that only a spouse of a dementia patient can truly understand. We live it daily without escape. Yes, there is respite, but that doesn't close the door to rest and relaxation. There are endless concerns and guilt at times and then the welcome "home" here we are again. I respect your faithfulness to your wife though her journey. I, too, have been faithful. Do I miss the companionship of date nights..dinner...movies..and dancing...and holding hands absolutely. I realize, as you said, there will be a day in the not so distant future I will be a widow, but for now I can look at myself in the mirror and say I have done the best I can do and I have been loyal inspite of this disease. Thanks for a ((hug)) and back to you too.
LFL, Oh it's so good to hear from you! How are you doing? I do hope that you have some resoluation with your husbands bahavioral issues. This is so stressful to deal with and my heart goes out to you. Were you able to find anything out that can be medically safe to control your husband's urges? You are prescious and such a blessing with your input on this website. If it is okay I would like to contact Joan and get your direct email....you with me. How am I doing? I am cuising along learning (from you) to slowly accept behavioral problems and realize that he is not responsible but rather the disease which caused our marriage to destruct. Thank you! Yesterday I saw a huge "over the cliff" experience. I woke him for his morning breakfast. He was very disoriented. I have never seen him in this state. He didn't know where he was (at home) and was zombie like. His eyes were empty. This was a glimpse of the future and what lies ahead.....so quickly. He returned to bed after breakfast and awoke at around noon totally oriented and functioning well. I would have dismissed this earlier episode as "not fully awake' however, LFL he has walking out on the patio drinking his a.m. coffee, eating his pancakes and bacon and looking around. He knew me...knew our little dog...but didn't know where he was? Is this typical or atypical? I believe this was a wakeup call for me to explore and make arrangements for a sitter to come into our home a few times a week to adjust for things to come. At the rate of his decline...I believe at this rapid rate of decline next year he will be no longer be caged up in a disease of confusion and havoc. ((hugs)) to you and wishing you strenght in the midst of your storm.
Paulc, I agree the the medication masks the progression of the disease until it is no longer effective due to the patients tolerance level. I haven't read any literature to conclude this fact, but I am seeing this in my husband. I am sorry that you will have to place your wife in ALF. I don't know if you have long term care insurance, but this is so very costly and unaffordable. It's a diffcult decision and I am sorry that you are facing it. It's bad enough to be losing a spouse to the most horrible disease on earth, but then to have to deal with the cost ...well, it just doesn't seem right. Best to you ...here's a big hug.
lulliebird, no LTC insurance. Thankfully we have private disability insurance. L's father has been helping pay the caregiver and both of L's sisters said we need a family meeting to decide how to pay for LTC. I have a decent job but a large mortgage, savings and retirements funds to be depleted, but I don't see how most people deal with LTC financially.
lulliebird, yes it is typical that a spouse may not know where he/she is but otherwise functioning. My hb still knows me most of the time but he's beginning not to know that he is in our house (we've lived here 26 years). Occasionally he'll say "I want to get out of here" or "Help me I want to go home".
For now the behavioral issues (touching strange women) seem to be under control. No medication was prescribed except an increase in seroquel, which I did not give him. If I could I would take him off all meds but his behaviors have been so difficult for the past 6 years I just do not want to deal with the severe aggression and violence again.. Yes, you can contact Joan for my personal email address.
paul, I too am sorry you may have to put your wife in an ALF but as others have said who have had to put a spouse in a facility, you are still her caregiber just not on a day to day basis and allows you to less stressed and more loving. You are also very fortunate that your wife's family is so supportive to you both - that is truly a blessing. No one in my hb's family even calls, much less consider helping in any way, and defiitely not financially. You'd have to pry a dime from their clenched fists with a crowbar.
Yes, LTC care is financially devastating I think for just about everyone. We have savings and retirement funds that will also have to be depleted in order to qualify for any federal/state assistance. Then I will be an impoverished spouse.
PaulC, I am sorry to hear that you don't have any LTC insurance! Just the medications alone take a toll on the budget. We are blessed in that we do have a good health insurance plan, but I pity those who don't. As LFL said, you are blessed that you have family support willing to not only help pay bills but the emotional support as well. I would love just a small piece of family's emotional support. Best wishes
LFL, glad to hear that the behavioral issues resolved themself without having to increase his seroquel. At one point when my husband was functioning more independly he cold turkeyed his zoloft. It was not a pretty sight....he literally came crashing down. Now that he can no longer independently function I dispense all medicines and watch that he swallows each and every one of them. I do wish that I had this doctor authorize xanax prn for his aggression and agagition on diffcult days :( It sucks not having family support and I can empathize with you there as I have none either. LTC: this is a subject I worry about greatly. Husband was a vet, but I was told our income is too much to qualify (it's not...we live very conservatively). Yes, we have a "little nest egg" but as you I know it will be used up on hb's care.. and in a few short years I will be impoverished spouse as well. I will contact Joan G....(perhaps you need to give you permission to disclose your email address). Hope you have some sunshine this week. ((hugs))
The medications aren't an issue, most are free under my insurance and 2 have a $30/month co-pay (relatively new drugs with no generic equivalent).
Sorry that you aren't getting any family support (emotional or otherwise). That seems to be the norm.
You should also see a Medicaid certified eldercare attorney about how to keep most of your assets. In short, as the community spouse the following assets will not be counted when calculating eligibility for Medicaid: A house that you are living in, a single car and $X (this amount varies by state but the federally set maximum might be around $115,000). So if you own your own home you might want to pay all money above $X into fixing up/improving the house and/or paying down the mortgage. Or buy a new car.
I am not qualified at all to give financial advice.
Paulc, Thanks for you input and suggestions about seeking out a Medicaid certified eldercare attorney. Several months ago I consulted with a couple of elder law attorneys and didn't have a good feelings about them. True, this was only feelings and not fact, but they were urging me to file for a guardianship/conservership which at that time was questionable as to if I had a strong enough case. It was an expensive gamble which because he was still functioning moderately independent I wished not to take. I had several DPOA for medical and financial which they reviewed. None of them interjected that with a medical statement from his doctor along the DPOA I really didn't reqjire a court order guardianship. Now that my spouse has rapidly declined I am now facing a new chapter in securing our assets. Yes, I like you suggestion and opinion about seeking a certified Medicare eldercare attorney. I understand that you can not give me financial advice, but I do respect your suggestion. Thank you for taking the time and sharing with me your suggestions. Best wishes Lullie
lullie, paul's suggestion is good, just make sure you speak with a few medicaid certified elder law attornies in your area (consultations should be free or low cost for the first half hour). I live in NJ and there are very few medicaid certified elder law attorneys and as I mentioned in an earlier post a few months ago, the one who was most highly recommended was in my opinion unscrupulous...once dh was in trouble and involuntarily committed to a psych hospital he changed his hourly rate by $100 ($500 vs $400) and withdrew his offer of a flat fee ($10,000) to do the paperwork for medicaid planning to an hourly fee for service. I should have reported him to the state bar association but did not.
LFL, Yes his suggestion is a good one. However, I have to confess, and no offense to anyone, but I haven't had a good past experiences with lawyers. The two attorneys I saw several months ago talked in circles and I could see little horns growing as they explained all the complications and justifications for fee charges (both these attorneys changed their fees as yours did mid stream). I didn't sign any papers after the second consultation, but I hit the door running. Yes, they were "elder care attorneys", but I don't know if the specialized in medicaid. As I understand it the state I live in has ACHSS rather as opposed to medcaid. I do have a wonderfulsocial worker I am with at the alzheimers association and I need to get clarification on the medicaid vs ACHSS system.