Charlotte, I've actually stopped this stuff twice. My husband was actually "diagnosed" by a cognitive therapist, who sent us on to the right kind of neurologist. She was used to dealing with people who had strokes and could get better with some therapy, so she knew the difference between someone who could get better and someone who couldn't. Once we started seeing the neurologist, I stopped the therapy because it was making him so sad. She did a lot of those putting the pictures together into a story with a beginning, middle and end, and he couldn't do that.
About 6 months ago I also stopped the neurologist and talked to his family doctor about just controlling the medications. I explained that his last mini-mental (the 50 point kind) had come in at 11, which is one point about Profoundly demented, and that the test had just made him miserable. There literally is nothing the neurologist can do for him now that he is stabilized on his meds. If I need anti-anxiety or anti-phychotics I've been told by the family doctor that he will prescribe them, and if my husband needs to see the neurologist or cardiologist for something he will arrange for that too.
There comes a time when the testing just makes them miserable. Why do them?
My DH saw a neuropsych when he was DX'd in 2007. The tests he had were 3 hours for 3 consecutive days. DH was absolutely exhausted. We went to the neuropsych last year and he wanted to do the same test again DH fltly refused. There was no way he was going through another 9 hours of testing. I called his office recently to see if they had made another appointment for this year and they had for August so I cancelled it. We really like the neuro he has now so we will stay with him unless it get's to the point where he can't help.
After DH refused the tests last year the neuro sat there telling us about his time in Florida and his divorce. Then he charges the insurance $177.00!!!!!
DH had neuropsyche tests done when he had MCI. Once he was diagnosed with AD the neurologist agreed that there probably was no reason to continue neuropsyche testing. What was the value? The symptoms are treated regardless of the test findings.
my DH too went for testing but when he saw it was for hrs he did the first part , then told me later he just checked off ANYTHING without reading to get out of there. didnt even read questions first- said it was bull**** and he was burned out at work and it caused some depression and that was that. so no more tests!needless to say his answers gave no real insight to the test at all as he didnt cooperate, that made any scoring obsolete i told the dr later what he did but DH wouldnt consent to more . he was so mad afterwards too. divvi
I don't know what tests DH had, it was in another room and a woman gave him the tests. I couldn't go in there and DH never did explain them very well so I have no idea what they were.
Thanks. I would think 4+ hours of testing that he completed would be plenty to tell if he has progressed from MCI to AD. I do agree with trying to find out what parts of his brain are affected as there are various kinds of dementia. When we were at his PCP last month, I told him about the jerky his hands and arms do at night and he mentioned LBD. I knew what it was but my hb does not. I think it was a last week when I was watching TV before going to sleep - his upper body "jumped" up. It didn't wake him up. I am keeping these notes to share with the neuro next month.
Agree with the rest of you about the prolonged testing. Mine went for one long session with a young intern who wanted to "do some research." He said never again. Actually, I think it must have really been research bec. they sent him a hundred dollar bill, which he refused to take (I had to spirit it away). Anyhow, no more except the MMSE.
I think that sometimes all this testing borders on abuse. When the dr sees an obviously frustrated and angry subject, why do they insist on completing the test? Is this really for the good of the patient or the dr? Once a dz is given, I believe less is best in all this mental testing. It is hard enough for all of us to deal with the progression of this disease and to watch with broken hearts as our lo gets worse and worse. Is there any humanity left?
My husband had his all day neuropsych test last Aug 2008. His neuro said he would probably sent him again this year to see how much change there is. The neuropsychologist did tell me last year that if he did come back for new testing he would not be put through the same testing. It would be much shorter. We'll see if his neuro sends him this summer. I know that he is worse cognitively and behaviorly than last year. :(
Just the past 3 or 4 nights my DH has started the jerking of hands and arms at night. So far I find that if I reach over and hold my hand over his arm it stops. Don't know how long that will help, but for now it does okay. I was wondering if it is the beginning of some kind of siezures. As far as the testing, I agree it seems like abuse. I've decided not to have any more testing done. It is what it is, and testing certainly isn't going to change that or the way we react to it.
gmaewok, my husband does the same jerking and also stops if I put my hand over his. I don't think it is the beginning of seizures - I wonder if it is one of the meds. We are not going to have any more testing done either unless something drastic comes up. "It is what it is" is one of my favorite sayings.
those of you who are seeing the 'jerks' like we call them can pull up under search 'myoclonous jerks' and read. there are several of us here (and from what i'm reading its becoming more prevalent among our spouses during stages of journey) have our spouses with the jerks. my DH started out rather small hand arm movements too yrs ago, but over time developed small seizure type head/neck jerks that are terrible to witness. not all the time just sometimes, and full moon makes them worse! like a short circuiting of sorts. and not side effects of meds as we arent on any AD meds for a yr now. i also thought that meds could be causing it. neuro put him on antiseizure to be safe, neurontin- and we take 400mg /nite. works very well and increase as needed. you should let their drs know so they can monitor if they get worse. divvi
vickie, it was my request as i thought the 'jerking' was a side effect over time due to so many yrs on namenda and or razadyne. neuro agreed and we took him off a yr ago and he was so much better in his demeanor dr says some do better off them. (or maybe he has some ftd involved undiagnosed.) taking him off didnt help the jerks, but made my life totally better and he is doing pretty well for as late stage as he is. divvi
Interesting, divvi. My DH was started on Aricept in 2003, then Namenda in 2005. I asked for both dosages to be reduced last summer and he's on 5 mg Aricept and 10 of Namenda, once a day in the mornings. He has been a lot better since then, consistently. He doesn't have any of the jerking though - just his demeanor and attitude seems to be better now. And he hasn't declined any either since the change.
for us, the real jerks didnt start til about a yr/half ago. prior it was just spasm type jerks. you will know if it develops you cant miss them! your DH is still high functioning - vickie you have a wayyy to go still before the disease gets bad hopefully! divvi
Thank, divvi, I hope so. At his age (86) I'm praying he will go some other way before it gets really bad! I have noticed very recently that his right hand trembles - not jerks- when he is eating - using fork or spoon. This is new.
These spasm type jerks and tremors were explained to me by our neurologist. He told us that as the deterioration spreads across the brain it can "pause and go deep" giving the patient "parkinson like" symptoms. These can range from balance problems to jerking to tremors. Primidone has been working great for Jim. We had to start low and work up over a week to 10 days, but there is a HUGE improvement!
Primidone is an anticonvulsant. It works by decreasing nerve impulses in the nervous system, which helps to reduce seizures. About Drugs.com
I brought this up because of the major changes my DH is going through. I have had to fix his food for over a year. He has no short term memory. His long term is disappearing. He doesn't recognize me all the time. He has trouble with eating (forks, hands). I have to start the shower, dry his hair, dress him now. I went upstairs and he had a t shirt on as pajama pants. Don't ask me how. Every family member are referred to as nice people. I can't take him to the grocery. He walks right behind me and stops before I know he isn't there anymore. He follows other people. He has done this for a while now. He shuffles and walks very slow. He jerks in his sleep. He get up at night, sometimes he gets back in bed nd others I have to get him. He has done this for awhile too. Anyway, just wanted to post. When our DD was home I asked if he wanted something to eat. He said when we get home. I don't know how much longer I can do this.
Jackiem29, your husband has what I would describe as "classic" alz symptoms and rest assured it will not get better or easier for you as he continues to decline. For those of us who have faced the placement challenge, all I can say is you will know when you cannot do it anymore. It will be a decision that you make when the time is right for you.
Hi Jackie. Your husband sounds exactly like my brother in law. My husband had alz too. I would say he is quickly approaching stage 6 and we have two boys 11 and 12. When was your husband diagnosed and is he on any meds for alz? I understand how you feel when you say you don't know how much longer you can do this. The patience and understanding it takes is indescribable and only we the spouses know. Do u work? Does he go to daycare? My brother in laws neuro who is also my husbands said there will be no more plateaus and he is on the decline. I am sorry for your situation. You are not alone.
It all sounds very familiar. Make sure you have your plans in place as to how you want to take care of him as he declines. Placement? Home care? Decide how you are going to pay for it, and if needed (like if you're not a millionaire) it might be a good idea to talk to an eldercare attorney. Basically, you want to get your husband well taken care of without impoverishing yourself in your own old age. Stay in touch on these message boards, as the help and advice day-to-day will be invaluable. You will probably find, as so many of us have, that the people on these forums know more than the professionals.
I am sorry if I implied I am new to the board. I believe DH is mid to late stage 6. He has been on. LTD for 6 years. But he showed symptoms many years before that. Had a formal diagnosis in 2008. Like many here we were told to young for alzheimers probably depression and stress. He is on aricept namenda Effexor Trazadone. I am slowy getting him off of aricept then will do namenda. He sees a neurologist and has been a participant in research for 6 years. I no longer work. I take care of him. I have help once a week. We do have a LTC policy. I am going to start visiting facilities after the holidays. DH is 62 I am 53. Our girls are 29 and 26. Both married. I just needs to post because a rough day today. Not that all are not. I visit the site daily. I just do not post often.
If I remember correctly, you were thinking about placing your husband next year. Your statement that, "I don't know how much longer I can do this," has probably been made by 90% of the members on this site, including me. When we start saying that, we have often being doing this much longer that we should have.
Months before I placed my husband, he had many of the same behaviors you describe in your husband. I would suggest that you get yourself in the necessary frame of mind by researching what facilities are available and taking tours of them to see which ones best meet his and your needs. When I made the decision, I found great advice on the sticky thread called "Spouse in LTC . . ." and also many non-sticky threads, including one called "How to prepare spouse for LTC . . . "
Jackie. Thanks for the details on your situation. I do know your name on this site but wasn't sure about the details of your situation. Everyday is frustrating isn't it? I hope you take care of yourself and have some respite. I know you feel fortunate to have LTC insurance but it doesn't make the emotional part any easier. My thoughts are with you.
Jackie, My heart breaks when I hear what you, Christine & others have gone through in what should be the prime of life and with children at home. It sounds like you are are doing everything you can. I will keep you in my thoughts. Please continue to let us know how you are doing.
Jackie, I know you are not new on the boards--we were doing some posting back and forth when my DH was getting really difficult--last summer, I think. But I just did not recall all your details when I posted upthread. It is so difficult, and especially at your young ages--53 and 62. It is so unfair. Those are prime years, as Myrtle said--and Alzheimers is just stealing them away from you. My thoughts and prayers are with you…do keep us updated.
Elizabeth, I do remember posting with you. Thanks everyone. I come and read and need the validation that the changes are there and it is time to do something. I think oh this will be easy. But then I see him fall asleep in his chair, tell me out I the blue I am pretty. Wonder if anyone will take the same kind of care I do with him. He said yesterday "it's just me and you". I know this will be the hardest thing I have ever done. But it is really killing me now.
jackiem29, When my DH reached about this point. I asked my PCP who was also DH PCP for help. (DH was 61 and I was 53 at that time) That is when we decided to bring in Hospice. DH was on for 10 months. He declined every week by this time. And I could not have kept him home without their help. My goal was to keep him home. Youngest DD who was 17 at the time wanted to keep her father home, and was willing to help. So for us this was our plan and goal. It was not easy, but having a nurse on call 24/7 truly did help. Along with the other services they offered. I know this is hard, no one trains us for this task. I often said if I walked into a hospital and applied for this job they would laugh me out of the building, yet here we are doing just that. Hope this helps you in some small way (((Hugs)))
Jackie, Elizabeth is right on about getting all your financial ducks in a row. I would add, INCLUDING the LTC policy restrictions. A lot of the policies have a waiting period and you want to try to get past that before you place him. The policies are not all the same, some just go for three years.. so you may want to wait (but get more help from an aide) as long as possible since he IS young, and presumably physically fairly healthy. All the things you describe are, as you know, typical. If he is amenable, in general, not violent or aggressive, you may be able to help yourself cope by thinking of him as a child you need to tend to. Try to put an emotional wall up - you'll need it to place him anyhow - and follow the suggestions here.
I am not giving advice out of the blue. My husband was diagnosed in 2005, needed attention from 2007, became bedridden and incontinent in 2009, and died in 2011. He was not aggressive. Because of physical problems he'd had since childhood, we did not have LTC for him, so I could not place him without expecting to go onto Medicaid after a few months, nor did I really feel the need to IF I could get good help. After a few false starts, I managed to get Andrew (old timers will remember him) and he came twice a week. Got on hospice, that one came once a week - and between them they got him changed and bathed. By the end, a month before he died, Andrew was coming daily (he lived nearby), morning and night. A crumbled hip made him impossible to move with just two of us, so he went into a NH and died a month later.
It was a stressful time, obviously. A sense of humor helps - and this board was a great help to me then. When Andrew was there, I ran away and did the grocery shopping, etc, and even kept on volunteering at the zoo. When Andrew was not there, I taught myself how to dispose of household things that encumbered me - ebay, antique dealers, etc, and went through the attic and the basement to dispose of as much as possible. I read. I watched TV, I enjoyed the computer. It was the kind of enforced house arrest that I had when the children were tiny, and really hadn't had since. I had a knee replacement, with Andrew around to help afterwards. After 40 years of living in the same house things really needed weeding out, and, being older than you are, I was ready to downsize, fob off family heirlooms on my kids, etc. Took a year after he died to get it all done, but I did, and moved to a cottage in a retirement community in ME, where I encounter many people who have pretty much done the same, or are DOING the same while tending THEIR bewildered spouses. Not recommending that for you, but recommending that you think BEYOND him, try NOT to make him the center of your THINKING even as you tend him.
The people writing on the board right now seem more inclined to put their spouse in some variety of facility a bit sooner than those who were writing back in the day. THis may well be because Alz. etc is recognized much more than it was even that short time ago and places are willing and ready to take the afflicted on. "Memory care" units (euphemism) did not exist. Many who put their spouses in NHs were constantly needing to check in - it was more trouble, and a lot more money, to have them there than at home. They were disruptive. The people sharing the room with them were bedridden and dying. Now that's not the case. Above all, though, everyone in your shoes should do what they know is right for THEM, not what their daughters think or what WE think.
My only question about Hospice is that they bill Medicare. Jackie's DH is only 63…two years to go until he will be Medicare-eligible. Can Hospice bill the LTC insurance?
My husband is only 61 and has had Medicare for 4 years now. He is on it due to being disabled by Alzheimer's Disease. We applied as soon as we got the official DX. It was approved without any problem.
DH was on SSDI about three months after the dx. He was 58 at dx and Medicare two years after at 61. Same with us on the approval, we had three doctors confirm the same dx when we applied for disability.
Elizabeth, my DH has Medicare he has for for 4 years. If you recieve SSD you have to go on it 2 years after starting SSD. He also has medical from work. He worked at a major newspaper for 38 years. We have LTD. Thank God, hard work and taking out the LTC we are financially in good shape. His. LTC policy does have a waiting period. We have started covering that with in home help once a week. The policy should cover for a while. It has a cap that is pretty high. I figure 14 years covered. My fear is when he is gone I have no income. I have stayed at home with him now for 4 years. He has been on LTD for 6 years. I will get his pension if something happens. But not until he would be 65. So if something happens now I would not get it for 3 years. I want to go back to work full time when I place him so I will have that covered. I thought it would be easy to think of placement. But it is really hitting me hard now. Our past 6 Christmas have not been the same, but this one I know will be the last he is t home. I wish I could keep him here. I just do not see how with the layout of our house Even with someone here it would be hard to get him upstairs to bathe him. Unlike some I was able to get his SSD in 3 months.
It sounds like you might well have serious reasons for placing him, Jackie. I had already retired a year or two before his dementia became serious.
Our house also didn't work for keeping my husband downstairs because he had always had difficulty with a bad leg. We had a powder room on the first floor but couldn't expand it. We got a stair glide which he used for several years and managed to deal with okay, then couldn't and at that point I just gave him "permission" to stay upstairs and in bed much of the time. I am not suggesting that for you so much as throwing it out there for someone else who might have a problem with the arrangement of their house. (After he died I could have sold it, but instead gave it to the Shriners, who keep a warehouse for medical equipment to dispense for free, and they came and removed it and installed it elsewhere within a week, writing me a nice receipt so I could deduct it from taxes).