i would think if his drs recommend you should place him in ALF and hes refusing, you will probably need to get guardianship over him to be able to place him . and probably to get this you would need his dr to testify or letters to such effect. unless they are violent it makes it difficult to place them again their will demented or not. you must prove he is mentally incapable of attending to his needs and thus needs supervision. if you havent already seen a certified elder law attorney you should to gain durable power of attorney over finances and health care issues before your spouse is incapable of signing . these are usually separate documents that an attorney can draw up for you and him to sign. you need these to be able to control the finances once spouse is unable and make decisions regarding his health care issues. if you have dpoa over finances then you can make decisions with regards to money issues - i am not sure why you are asking if you must leave. if you are his wife you are entitled to stay regardless of if he would want inhome care vs alf. if he would prefer inhome help at this point and you can afford to hire someone then it may be more convenient and feasible to start out with extra care for him at home and see how that works out first before trying the alf if hes not willing to go. an elder law attorney will help you iron out the best way to get ready for placement and medicare/medicaide issues to help you qualify.
The docs recommend al for the routine, structure and to a degree, required socialization. I do have durable poa and health care proxy. Two elder care lawyers have given me advice just about opposite from each other.
H is only in his mid 50's so Medicare is in the distant future and despite applying already some years ago, he is ineligible for coverage for ltc insurance.
He does not need much in terms of physical care and the docs say home health aides are not going to be able to provide the "sophisticated" level of dementia care that would give him the best quality of life, that he needs a structured environment for that.
Can you get creative? Would he stay in AL on a temporary basis while you were away or while renovations were being done in the house? New flooring takes a while and it is hard to live around the work. Or if he trusts doctors, for a medication adjustment? The social worker at the assisted living might have strategies to suggest.
abby....you can apply for Social Security disability at any age and it sounds like your dh is disabled and unable to work. Then that qualifies you for medicare. My dh did this when he was in his 50s.
abby--I don't have a feel for where you are on the "caregiver desperation scale". Do you want to place him solely because that's what doctors recommend, or are you worn down physically or emotionally and need him out of the house? A good adult day program can provide routine/structure/socialization--at least 5 days a week, for a full day. I did this for 4 years, and it allowed me to postpone starting aides coming into the home and also delayed placement until this year when my husband was so out of touch he didn't know it was happening.
It may be that the doctors/care manager are observing your needs, and that their recommendations are based as much on that as your husband's condition. I think this is a point that needs to be clarified.
JudithKB is correct that when a person is approved for disability SS, Medicare comes with it. Age isn't an issue. However, the only way Medicare pays for long-term care is if the patient is hospitalized first, then they can go to a NH for a specified period. ALF's are never covered under Medicare; maybe you were referring to Medicaid? There is so much confusion between the two programs because the names are similar.
Abby-You might want to make an appoint to see his doctor without him and explain your problem with them. Maybe if he heard this directly from the doctor (that he needs to go to ALF he would be more inclined to go along with the recommendations.
I know each person is different and the spouse knows how to handle problems with the sick person the best. With my dh early on when he could understand things much better then he does now. I made it perfectly clear that I had to be in charge of the finances, his care, other important decisions, etc. And, if he didn't want to accept this type of care I probably would not be able to handle his care by myself and we needed to work together or my health would not hold out for the long haul. I guess I was lucky, because he seemed to know that I was the only one he had available to care for him since he was an only child, parents dead, and two sons that could care less.
Of course, sometimes fiblets work too. You might be able to tell him that around the clock in-home care is too expensive and that you can't trust a lot of these people. And, that interaction with people in a ALF would help him.
Another thing, you comment on "his funds". If you are married in most states there is no such things as "his funds" or "your funds".....unless certain funds or assets have been placed in a trust and never co-mingled with the joint funds they are "your funds" also.
JudithKB- I don't think those are fiblets (which I strongly endorse): those two factors were specifically mentioned by H's neurologist as well as his care manager! Yes, there was a narrow window of time between when H was well, at least well enough to function and when he became; I don't know what word to use, so I'll just say "now". Within that window, I was someone he seemed to care about and respect, he seemed to think we were in this together. No longer; I think he feels I am just an irritant.
We are in a community property state. I was not correct about what I referred to as his funds. I was thinking of his private retirement account which I was prepared to just dedicate to his long term care but my lawyer said "not so fast, half of that belongs to you".
I understand that SSDI, what H has, works like this, at least for him. I don't know if it is state specific but a recepient who is not initially old enough to be Medicare eligible becomes eligible 24 months after the disability is determined, with the only exception being ALS. In H's case, I have the paperwork documenting when Medicare will start for him, which is in 2013.
I think too, that here if a person gets SSI they automatically get Medicaid. I guess Medicaid will pay for ALF but most ALF won't accept Medicaid's payment rate. Here I will sometimes see ads where it is called "waiver"; like "out of 60 beds eight are eligible for waiver".
Oh, pamsc, the most likely strategy will be medication adjustment. I don't even talk to him about ALF (it was the care manager who brought it up) because even if he agreed to it today that could, and very likely would, change by tomorrow. I will take the advice of the doc and the care manager.
I was thinking, OK, I was up all night with full fledged anxiety and I remember that my lawyer said it is much easier to have a person declared in need of guardianship after admission to ALF than before. She (my lawyer) had mentioned almost exactly what divvi had said and said that before placement it is a long, hard, and expensive road since the state presumes competency.
marilyninMD, that is my bizillion dollar question. I don't know where I am on that scale!? I know the frustration, the pity, the resentment and the caring are all in a constant state of flux. I also know that the most hopeful I felt in what seems like a very long time was touring that ALF. It was all decorated for the season, they have monthly themes, the apartments are centered around pods; some feature flat screens and some feature reading areas, some had fireplaces. They serve cheese and crackers and fruit at 4:00. There is a choice of two dining rooms each with a full salad bar and three menu choices per meal. It just felt good and coming home felt bad.
Daycare- H even said a flat "NO" when the neurologist mentioned that and he is usually quite deferential to him.
abby--I think most of us that have been dealing with this illness for a while would say that we had to take whatever steps were necessary to get control of our spouses. For me, it was a combo of putting him on medication and doing a ton of fiblets. I know my husband better than anyone, and I knew that to get him to daycare I would have to fabricate a good story to get him to agree. So I put together his lifelong interest in community service (told him he was a volunteer) with his pride in being a breadwinner (that he would be paid by the daycare to help out). Since the checks from the LTC ins were written to him, I showed him those checks as "proof". It was a convoluted story, but I knew how to push the buttons that would make him comply. Someone here posted several years ago that she paid the daycare extra money and they actually wrote a check to her husband in return. These exact solutions may not motivate your husband, they are just examples of how far you need to go sometimes.
If it was me, I would try medicating him first before attempting something like guardianship. Is your husband on anything for mood (i.e. antidepressant/antipsychotic)?
I don't think Medicaid is automatic. My husband now has Medicare - which we have not used due to VA medical - but Medicaid would only be applied for when he goes into a nursing home.
I also live in a community property state (WA) and (un)fortunately we do not have any money or assets to worry about splitting except for his share of the house in Massachusetts which his brother refuses to sell.
H's rx list is pretty short. It consists of generic aricept @10, generic keppra @1000 bid and lorazepam @1mg tid. The neurologist is reluctant to try anything else considering that H's "presentation"- the word he uses- is very atypical, including H's age of onset being so young. But the primary reason is that H has had such extreme and unexpected reactions to aricept @23 and to Depakote. These reactions surprized both the specialist and generalist.
It is also part of the reason N favors ALF. He is apprehensive that H might react in unexpected ways to another mood regulator or antidepressant and that it would be just me alone at home to deal with it. He, the generalist, agrees there are more rx's to try but not safely in the home environment.
I remember you mentioned that there came a time when your husband was so out of it and this is what N predicts for H, actually within a year or so- and since he said it a few months have already passed. Some days, like today, H is quite sharp but yesterday it was like same planet, different world.
The whole guardianship issue because of its inclusion of incompetency I hope to avoid, not only because of the time and cost but because of this: (and I know this will sound silly), I don't know what thoughts H still has or what is going on in his brain. I don't want his last memories, whenever they come, to be that I had him declared incompetent. If his last self thoughts are closer to who he was, so much the better.
abby--my husband was young when dx (60). Had awful reaction to Aricept 5 and Depakote (gastro). Stayed on Aricept and his body adjusted. Just my opinion, but I'm surprised your husband's neuro started him on Aricept 23. It's a relatively new product. The traditional pattern was to start on 5mg and increase to 10mg. There is skepticism that the drug co. only patented Aricept 23 because the patent on the lower dosage ran out and it went generic--have no idea if that's true.
I am also surprised that these doctors haven't suggested a stay in a geripsych ward for your husband's medication adjustment. In my experience, that's the best solution when a tricky adjustment is needed on a difficult patient. After a 5-week stay and when his meds were fine-tuned, that's when I moved my husband to the ALF. The geripsych units have much more latitude in the behaviors they will tolerate from a patient--all the patients there are difficult. While the ALF's can and will do medication adjustments, they have much stricter parameters in the behaviors they will deal with. It is not unheard of for an ALF to request the family to hire a private aide or to ask the family to remove the resident from the facility if their behaviors endanger others or are beyond what they can handle. That's one reason I waited so long to place my husband.
abby, many others' spouses have also been diagnosed in their 50's and many with difficult behaviors. My DH is one of those-dx'd at 58, physically violent towards me, but was still very "with it" and functional. The violence against me landed him in a geripsych hospital for 30 days which quite frankly did little or nothing for him (almost no med adjustment). The drs, social workser and care manager I hired insisted he could not come home because I would not be safe. So I found a ALF that would take him (most won't if they have aggressive behavior). The staff was not trained or prepared to handle a very strong healthy demetia patient and after 2weeks he escaped (eloped in their terms). They wouldn't take him back, so back to a different geripsych hospital. After 3 months of med adjustment (and he had aggressive behavior during his stay) they allowed me to bring him home on a trial basis with a 24/7 aide, because I wanted him home and the fact that he would be difficult to place in an ALF due to aggressive behavior past. I am happy to say that he is still home with the aide, however he is quickly using his LTC insurance.
What do you want? Do you want him in an ALF or do you want him home? My experience is that most of the professionals advising you (care manager, psychiatrist and elder atty) favor putting them in an ALF or other institution. My husband was absolutely NOT ready for an ALF 3 years ago-the population was much older and much further along with their dementia. He knew he didn't fit in, that's why he escaped. Even the residents in the regular part of the ALF were significantly older than DH. Marilyn has been on this journey for a long time and offers wise advice-try a med adjustment first; if the neuro he currently sees is resisting, then find another one who would work with you. My DH doesn't "present" as typical either. Look for a daycare that might have "younger" participants.
Medicaid is not automatic....you must meet the financial requirements to qualify and the recipient must be in an ALF or skilled nursing facility for 2 years or more. Unless your money is in irrevocable trusts, you must use all but $100K which you as the spouse will be eligible to keep and you will be allowed to live in your home.
It is a difficult journey we are all on and must make the decisions that are right for us individually. Please know, if you do put him in an ALF, you are still responsible for ensuring he gets good care at the facility-your caregiving responsibilities shift but never go away. I know this is a difficult time for you and will be thinking of you.
abby--I finally had time to look up the meds your husband is on. I am wondering if he has epilepsy or seizures? Both Depakote and Keppra are anti seizure meds. My husband was in a clinical trial for treating AD with Depakote several years ago. I could be wrong, but as I remember, the results were either negative or inconclusive. Lorazepam is an anti anxiety med; I have heard of it being given to patients with dementia, but I don't recognize any of these as the "go to" drugs that neurologists (in this area) generally try first.
Perhaps you may want to ask the prescribing doctor about why your husband hasn't been given an anti psychotic drug like Seroquel or an anti depressant like Celexa? (Depression in dementia patients usually presents as agitation.) Why the emphasis on anti seizure drugs? Just a suggestion.
abby, DH was also prescribed Depakote which they use to control agitation, but had major impact on his liver enzymes. Just a question-is his neuro experienced with dealing with dementia patients? Lorazepam (Ativan) is an older drug which doesn't stay in the body long, therefore the drug only works for a while and then fades causing ups/downs in behavior.
Sounds like the pcp and neuro are either extremely conserative in their treatment of your DH or not experienced with the newer meds.
H had his first seizure in 2000. He was very ashamed mostly because in his career seizures would be problematic to say the least. His first med was dilantin. I had noticed what I then thought was a bad career decision on his part in 1999. The dx of MCI and later FTD were to follow. Probably two years ago he was started on generic aricept@5 and then it was elevated to 10. The specialist thought that if 10 worked well 23 might work better but that was not the case. It was not so much a physical reaction as an increase in delusions.
At some time 2-3 years ago he was weaned from dilantin to keppra. This started based on advice from a specialty N in San Francisco, a much more sophisticated place than where we are located. We were told that keppra had a favorable effect on mood.
As time went on the depakote was added for agitation but it too increased delusions. He had already taken lorazepam for many years for generalized anxiety and did well with it so it has been continued all this time.
His icd code is 294.10-dementia secondary to other causes which for him is the seizure disorder. The FTD dx was chaged to generalized cerebral atropy just last year based on MRI's which had been done almost yearly and PET.
Actually, the primary N is pretty generalized but most of his practice is with dementia.
Geripsych as a placement has never been possible, maybe because of his age because when this started he was still in his 40's (?) N said that insurance qualifies to see a neuropsychiatrist, which has already occurred, but not to be placed. My guess is that this is at least in part because of the code, which is "without behavioral disturbance". For safety reasons N does not want to add anything to the mix while H is in the home environment.
Yes, the professionals are saying placement, at least within the year. Besides all the docs, I have been to two elder care lawyers and to a private social worker and a care manager.
In a way, the holiday season, although full of emotion packed challenges, was kind of a respite. Now it all starts again.
I don't know what I want. "Eloped!" In current status I fear this as he is still young and relatively strong. While I really liked the ALF I saw he would be far out of his age range. N predicts that within a year H will be too apathetic to really care. I guess that is what I want or at least what would be the best case scenario at this point.
i have recently done a lot of research on ativan ie lorazepam as the hospice dr rx'd it for sleep for DH. after only a few doses i noticed his myoclonus jerking increased quite a bit and we discussed this in length. what most dont tell you is that continued use of this drug or any benzodiazapene like this drug can cause seizure activity if not taken properly at regular schedules or if you skip doses or discontinue abruptly without weaning off the drug. it can take weeks to properly wean off =same for any drug in this class. needless to say we decided not to dose DH with the ativan on a regular dose and resorted back to the melatonin instead. i would use it on an emergency basis but not regularly. i would ask a dr about side effects of long term use - divvi
abby, if the medical code is what is keeping the insurance from paying for a geripsych unit stay, perhaps you should speak to the doctor about modifying the dx. None of it is set in stone, even with all the MRI's and PET scans, there is still some guesswork involved. Perhaps the FTD dx (and code) could be added back in--as a combo dx--and then he could be admitted for medication adjustment. I don't think the age has anything to do with admission to a specialized unit, as long as the patient has a dx of a dementia-causing disease.
I believe that it is critical to have a doctor that not only gives good care to the patient, but supports the caregiver as well. By pushing you so hard on placement when you aren't sure, I don't know if this neuro is supporting you as he should. As I said before, placement is not a panacea if there are difficult behaviors. I felt I wanted the behaviors ironed out BEFORE placement so that there would be no crises after.
I like the general N very much. It is he, not the specialist, who seems more objective. The specialist is the one who said, "but he is so nice", and also cautioned me against trying to micromanage H's life. She is more in favor of testing and at this time, I am thinking what is the point of that?
I could be wrong about this, but I think the general N seems concerned about me as well as H. Of course, I respond favorably to that.
Quite some time ago I was the social service/administrtive manager of an in house unit (acute care not LTC). and had a bit of experience with the importance of coding. I will look into those variables for H.
I totally agree that I would like behavior issues solved. But, truthfully, I don't know what I want from day to day.
And I have to think about money. The ALF I liked will be 5000 per month. All private pay, no LTC insurance. Twililght zone; here I am!
Abby, yes, the ALF's are terribly expensive. If you can get his behaviors under control, you can get a lot of in-home help for less than the cost of an ALF. or do a combo of adult day/in-home help. Obviously, the key would be getting the meds sorted out so that it's practical to keep him in the home. If you like the neuro, that's who I would turn to on the code issue. Good luck and keep us posted.
P. S. I don't want to give the impression that a geripsych unit stay is a piece of cake. Both LFL's and my husband needed a second stay to make a real difference in their behaviors. I think repeat visits are relatively common--it's a tough process, a lot of trial and error, but it can work. It reminded me of a science lab, in a way--the patients are observed 24/7, many tests taken if needed, different meds at varying dosages, times changed, etc. The focus is totally on med adjustment, so it's a more intensive effort than can be done in other settings.