I haven't posted for a very long time but still read posts hoping to find something close to my DH's situation. He was finally diagnosed with Parkinson's a couple of years ago (I think...time has a way of getting away from me)...is on Carb/Levo and Azilect for that. He has been on Aricept and Namenda for the same length of time for "dementia". The dementia came way before the Parkinsons symptoms. Nothing in MRI, CT/PET showed slight degeneration of temporal lobe...these were both done 2 years ago as well. So many different symptoms have showed up that the doctors really are perplexed as to what type of dementia he has. Not ALZ, not FTD, not Lewy Body....they have no idea so are treating the symptoms which I guess is all they can do anyhow. Some of the oddities (to me) are: Even tho I sit in a chair to his left ALL THE TIME he looks right to talk to me (sometimes staring right at a blank wall while talking to me); we have an Xbox with kinect to keep his body active but he can't see (or can't process) the images on the screen to play the games (his vision is fine); if I say put your arm straight out to the left, he will put it forward; left from right? not a chance; walks around the house looking for his house slippers while they are on his feet....I am sure you know I could go on and on. He just turned 60 last month. Our family doctor told us he is a 60 year old man with the brain of an 80 year old, which i thought was rude but true. Doc (and neurologist) also said that running more tests wouldn't make a difference as this is progressive and we just go day by day. I quit my job the first part of November because I didn't feel confident leaving him home by himself all day. I feel much more relaxed being here and knowing what he is doing all day....alot of napping in front of the TV.
Does anyone else have a family member with "unknown type of dementia"? I think I would feel better if a name were put to the disease altho I know it wouldn't make it better.
Well...can't say, but the symptoms you describe are pretty much what you'd get with a visual-processing type of dementia such as posterior cortical atrophy which is, by most ways of reckoning, a variation of Alzheimer's.
Still, the thing about dementias is they always want to pin it down if they can, and by my saying it sounds a lot like my husband's problems does not really help you come up with something definitive.
But the looking in the wrong direction, the inability to process images on a screen, and the looking for his shoes when they're on his feet are all very familiar to me. Does your husband have a somewhat more intact memory than the "average" (as if there were such a thing, really) Alzheimer patient? Mine does, although his short term memory and ability to keep things straight is pretty bad. Because there are more obscure variations that trash the visuospatial portions of the brain first, and they aren't the first thing every neurologist thinks or, nor is every neurologist well-versed in all these variations...specifically because they ARE obscure.
You could, of course, research the problem further, and expensively, by having him studied at somewhere like Johns Hopkins neuropsychiatry department or similar, but unless someone refers you and insurance covers it, that's a couple grand. And the results could still be vague.
In the end, I'm not sure it matters. He, like all our spouses, is the victim of a terminal neurological disorder, and--from a practical perspective--we just have to get'em through it to the end.
Sheila..My dw showed signs of dementia as early as 12 years ago or more, and nothing ever showed up on the tests that were ordered.. A cardiologist did a heart catherization and declared that she had a "widow maker" and put her on heart medications. Another doctor said she had type 2 diabetes, and for years, she avoided any sugars. A pulmonary doctor declared asthma, and put her on medication for ashtma, claiming that her brain did not get enough oxygen. Her pcp did many mri's and ct scans, and found an aneurism in her brain...A neurologist found some damage to her neck vertebrae, and suggested having them fused in order to improve "dementia related circulation". A psychologist diagnosed that she had a histrionic personality disorder and that she had transference.....in other words, the problem was all in her head... Meanwhile, we did research, and in 2008, found that dementia fit all her symptoms, and that it seemed to be either alzheimer;s or Picks desease.....We demanted a PET scan which was done in 2009, and the diagnosis was "alzheimers... There is not a day when I question the diagnosis, because I keep hoping for a disease that can be cured. My dw exhibits many of the alz symptoms, but is so aware of her condition that we find that puzzling. She also had stage 1 breast cancer in 2007, and underwent radiation. That seemed to speed up her decline, and the ratiation seemed to make her dementia progress faster. At this point, we think that the breast cancer has returned, but we are not pursuing that diagnosis...I much prefer cancer to eoad. But the truth of the matter is that dementia is dementia...it does not really matter what doctors say. There is no cure, and the medications for it are quite ineffective. When I llook back, I realize that the problem started long ago, but no doctor likes to diagnose dementia, especially when the patient is only 45 yrs old....They, like myself, would rather try to find a different cause, and then attempt to find a cure.... So Sheila, you are the best judge of the symptoms and oddities. Each dementia case is unique, although they share many of the same characteristics. However, because of the complexities of the human brain, the symptoms are varied and atypical for each patient. I have preconceived ideas of Alzheimers, but I am attempting to keep an unbiased mind so that I can truly observe the signs of dementia, and determine whether medication is improving the situation or not. If I see adverse effects, then the medication is discontinued. The best thing to do is to form a good relationship with your PCP, and request his help and advice. Our PCP is fantastic, and will suggest different medications, and allow me to determine which is more effective. He is willing to prescribe almost anything I ask for, with the condition that we discuss it and decide together which course of action is best. I distrust most doctors, but he is the one who is my "second opinion", and so far, he has proven himself to me.
Emily, as usual, your comments hit home. My dw also has terrific long term memory, almost intact, but has a lot of visual processing deficiencies, and motor skill loss. I agree that more research and study is perhaps useless other than putting a label on the symptoms and finding out where you are in the progression of the disease. I think we spend too much time and effort into trying to diagnose the stage they are in, where the damage is occurring, and putting labels on their progression. Dementia is dementia....some times more severe, sometimes surprisingly better...and yes, our job is to make them as comfortable and as functional as possible until the unavoidable end
phranque i agree with you wholeheartedly. you hit the nail on the head. dementia is dementia and as the brain slowly dies in (most cases) everything is affected. since the brain is the controller of all body functions, depending and where and to what extent an area has been affected the symptoms appear. your PCP can and should be your most trusted scource of information. since my DW was diagnosed several years ago he has been our ONLY goto person. further tests cost money and if demntia was curable they may prove invaluable, but since it is not, there is no need to confirm anything especially when it is staring you in the face daily. you see the changes and deal with them as they occur. when the time comes that you can no longer care for your spouse, you have to chose placement or not. everything else that is done may give you some comfort but if the things they (spouse) need are met then everything else will change nothing. the cold hard fact is that dementia is NOT curable and we as caregivers MUST accept that if we are to survive the journey we must continue to play the hand we are dealt looking wherever we can for the things (we) need to exist until the end of the journey. prayer has been my most close ally and it does help. May God bless you all for the care you give. Bruce
Phranque: What is a PCP? I am looking for a new doctor for my dh since we moved to this new location. I don't know what kind of doctor would be best for him. He hates the neuro we had and the doctor at the VA Some days I just think why bother...the doctors can't really help.
Judith--whichever type of doctor you choose, they should be familiar with how to treat patients with dementia. I have just switched my husband from our PCP (who has never treated a dementia patient who was in the early/middle stages before) to a geriatrician. Hopefully, this will help us avoid potential problems in the future. Whomever you choose (internist, geriatrician, neuro) they should be familiar with the psych meds and how to use them in dementia patients. Many of the internists are not as proficient in that area as someone who specializes in memory care. Anyone can prescribe Aricept, Namenda, etc., but the psych meds can be trickier.
Sheila, as all have said, dementia is dementia, but I do understand that you want to find an accurate diagnosis, which is going to be chllenging unless you go to a reknown dementia/memory disorder clinic which will cost money. My DH was 58 when the neuro diagnosed him with "pre-senile dementia" and possible alzheimers with a ??. I took him to Dr. Barry Reisberg in NYC, the geratric psychiatrist who did much of the pioneering with Alzheimers and documented the stages of alzheimers. After 6 hours of assesment he dx'd DH with probable FTD based on his age and symptoms and then told me there was a 50% chance he has alzheimers.
I understand thoroughly the need for a "name", a Dx. When there is something wrong and you don't know what it is, it can be very difficult to make decisions on and administer treatments with confidence. Never feeling secure that the treatments chosen are the best, correct ones. It's like fighting fog; never knowing how hard or where to punch and having no clue if you're having any effect. Sometimes we cant get a speciific name, but knowing it's dementia, can be enough. We know the brain is affected and we know it deteriorates, and we also know it's terminal. In our case we know DH has VaD. They saw the Stroke Scars in his brain and observed at least one TIA while he was in the Hospital,. What we don't know is when it started. He started out with broad spectrum Learning Disabilities followed by Mental Illness Dx'd in 1988. His VaD Dx came in 2006. He was at the end of Stage 4. He is now in Stage 6. One of the things we are not doing is follow up tests. We don't need tests to see if he's worse, nor if it mght be some other kind of Dementia.
Another reason for an accurate dx is that it may give you a heads up as to which symptoms are coming next. Fortunately for me, my husband's neuro said he is a "textbook case" meaning the symptoms are playing out in the most common pattern. Thus, when he recently started having hallucinations, talking to the man in the mirror, pacing, asking me for his wife and to go home when we are already there, etc., I was prepared emotionally because I realized in advance that these behaviors would appear soon. This has helped me cope when the new issues came along--by removing some of the unknowns. For me, much of the stress of dealing with dementia caregiving in the early stage was caused by not knowing what was going to happen and when.
I agree MarilyninMD. I just looked at my very first post on alzspouse, and my dw was in early stage 6, and we had just received the alz diagnosis. I somehow wonder how I made it through stage 1 thru stage 5 without knowing what was wrong. I often wonder what the outcome would have been if I had received the diagnosis earlier and what difference it would have made now. I did not have time to prepare myself both physically and emotionally, and when I finally accepted EOAD as a diagnosis, I still was in denial, hoping that the doctors had made a mistake and that there might be a cure. I too found that the stresses in the early stages could have been relieved by a much earlier diagnosis...I went through all 5 stages without the support from this site, and it is a wonder that I survived........
I actually came up with his more specific diagnosis myself. Once the neurologist (whom we saw a grand total of twice) got the results on the neuropsychiatric testing and the PET scan, he said. "You have Alzheimer's. Take these meds." After that I've gotten all refills and medical checkups via his PCP.
When he enrolled in the vaccine study, they did some basic testing, but mostly relied on the previous reports to establish that he was appropriate for the study (in other words, that he had AD.)
Hence, realizing that his form was most akin to the visual variant, posterior cortical atrophy, wasn't the result of in-depth analysis by any doctor, but rather the result of my own research and awareness of his symptoms and the order of progression.
Emily, this is kind of how it is working for me. I first posted here about two years ago. I was lookingfor information on DH's symptoms and found FTD and then found this site. The MRI last year didn't show anything and the doctor, even with my confidential input, did not believe me. I'm sure that we are in stage 3 to 4. with us it is major problems with the reasoning-button, mood, personality. some very short term memory but, for the most part, no memory problems. Some problems with measurements and calendar, directions also. If I say north, south east and west, he wants me to say uptown, downtown, etc. He also misplaces things and also does not see things that are right in front of him. I'll bet we will be like Phranque and not really have a diagnois before a very late stage. At least I know (at least I think I know) what is going on so that I have a reason for all the weird stuff.
Emily, what you described is what we are going thru. I read alot about the posterior cortical atrophy and DH has many of those symptoms. His short term memory is trashed; can't see what is right in front of him (Mary in MT...I can relate with the measuring, calendar and directions!)....Every hour is a new day! Tonight I was wrapping Christmas presents and he said he felt completely left out of the loop this year because he had no clue what to buy anyone. I had to explain to him that he was in on buying and at one point knew what we bought and who we bought for. He got real quiet and is now taking one of his many daily naps. I feel awful when I have to TELL him outright that we have already talked about things. Most times I just retell like it was the first time. This time I couldn't do it.
On a happier note, I ordered my Christmas present (from DH of course) today. A new Canon Rebel camera! Merry Christmas to me! :)
Merry Christmas indeed! My daughter recently bought a Canon Rebel. It takes great photos...much better than my little pocket-sized digital Elph. I bought myself a MacBook Air 11 inch for Christmas + my Dec ! birthday.
My husband started forgeting things about 4-5 yrs ago. I took him to a couple different docs, that could find nothing wrong with him. He would make 100 on all the mini mental tests, and deny to the Dr. anything was wrong. I finally insisted they test him farther, and they did, test after test which showed nothing. The doctor did start my husband on the drugs for AD at my insistence. I told him I lived with this man and knew something was wrong. He has continued to decline. I retired last year from my nursing position because of his frequent calls, his forgetting to eat, and confusion of simple things. He is still mobile, able to do ADLs , but doesnt really want to anymore. He cant order in restaurants or balance a checkbook, but he still does some things around house. I think he is probably Stage 5. We have traveled a lot this year, something he never liked much, but he doesnt want me away from him for long so he is willing. We've made some great memories this year, and I hope we still have a little more time to do that, but I know it is coming.
Ky, we are traveling now too. We left Vancouver, WA and went to Yuma. We always wanted to do the Quartzsite RV show and will this year.
My hb's short term is shot, but he is still able to do most all other things including driving. He too does not like to be away from me. He is what others here call 'a velcro man' and I know it will get worse. His diagnosis of 'dementia of the Alzheimer's type' was in large part based on symptoms (short term memory loss) and family history in 2008. He was seeing his neurologist every six months but we will skip the one in January due to being on road. I see no real reason to worry about missing it. We will have to keep it on the one year mark - VA likes every 6 months even though not needed. He is only on galantamine since the side effects of Namenda was more than we were willing to put up with.
Sheila - that is the hardest I think to do is tell him we already talked about it, or did it, or decided. I too try to just tell him like it was the first time but that is not always possible. The hardest is when he will see Boston Bruins played and think he missed it when in fact he watched it. I subscribed to the Center Ice for the season. Even though he doesn't remember watching the games, he enjoys them while they are on and that is important to me.
And please do not let no definitive diagnosis get you down. Like the rest of us try - try to take it one day at a time and deal with symptoms as they come. What is there - something like 30 or more kinds of dementia? AD, LBD, FTD, and VaD are just the four main ones. Big bucks may be what it may take to get what you want, but then would it change the final outcome any?
Well we have an official "diagnosis" but the neuro (at the university hospital in Rotterdam) makes no secret of the fact that he is actually not sure. As time goes by, dh fits better into the classical AD pattern and I no longer notice the symptoms that used to make me (and the neuro) think he had FTD. The neuro has sent me forms to fill out to allow dh's brain to be examined (and used for research) after death. I haven't filled them out yet (Procrastination is one of my major skills) but I plan to. Then -- when it's too late -- I will presumably have a definitive diagnosis.
Jeanette - that is good thing to do. When Fran's husband died they found he also had LBD along with the AD. If I remember correctly that was the reason he suddenly took a turn for the worse and died.
Also, ask them if they want his eyes along with his brain. The researchers were very happy to get the eyes along with his brain when my FIL died. The reason: they are finding they can see the early signs long before they are showing.
My BIL arranged for with one of the hospitals there in Boston that researches AD. I would start with asking your neurologist and if no help, call a teaching hospital. Others will come along and maybe let you know how to find them. Center on Aging or where they are doing clinical trials. I do know it has to be prearranged due to they may not need anymore brains at the time.
I emailed an article on PCA to our PCP and he had never heard of it. He made a copy of the article for DH's chart and said he would send a copy to neurologist as well. Said that it was so rare that he doubted many neuro's had heard of it either. Wouldn't change the way we treat the disease tho (which I already knew). Yesterday was our annual "Granny's Cookie Day" which consists of having all our grandkids over for a day of baking and crafts. I have been doing this for the past 12 or so years and this was the first year we didn't have a housefull overnight. The bigger kids (18, 17, 17, & 13) had either dates or school activities and the 2 little ones (3 and 7 months) had spent Friday night and were ready to go home. We were missing 3 of our grandkids....two were out of town and we lost our oldest grandson to a car accident last April. It was strange. I always have totally enjoyed this day but seemed that this year DH was under foot the entire time (wanting to be of help) and really stressed me out. We have a fairly small house and when there are more people here he doesn't necessarily get agitated but really seems out of sorts. Anyhow, I was wiped out by bedtime! Hope you are all enjoying your Sunday....I will enjoy it more after the Chiefs win!
At church this morning the priest said that those who are grieving this Christmas, or caring for a member of the family who is ill, are the ones with a clear grasp of what Christmas is about. It's not about festivities and busyness, but about keeping life simple.
Mary75....so glad you posted this because it is so very true. After we had the grandkids here yesterday I have thought about starting to put away some of the small Christmas decorations that are distracting. We are going to our youngest daughter's house on Christmas day and don't plan to entertain here next week so why not put away some of the stuff? I'll leave the outside lights up and of course the Christmas tree, but the rest that has been basically for "show" can be put back in boxes. I am big into simplicity which makes life easier for both of us.
I only have a 12" live tree with an ornament that I got at the grocery store yesterday as well as two poinsettias out on the front porch. Then a neighbor who knows about our situation left 3 huge beautiful poinsettias so we would have some cheer. The week before last, my DH has one doctor appointment every day..routine. Then last week his HR went out of control and he was in hospital all week..so who has time for decorations? I was lucky to get the Christmas packages mailed to the kids and a couple things under the tree for DH. I'll fix a Christmas dinner for two..no kids here this week and all our friends have family so it will be DH me and the two cats. One less chore after the New Year..sorting and storing Christmas decorations..maybe I'll start to put them out in June!
As I've mentioned before, my hubby does not have a diagnosis altho family dr thinks it could be a dementia. From reading, I'd say ftd. But there are times when hubby is fine and I wonder if maybe I'm reading too much into things. Then along comes a situation . . . like the other day, hubby left to meet up with a family member to go on an outing. He still drives and should have reached this person's place in 10 minutes. Thirty five minutes later I get a call from family member asking if he'd left or is on his way?? Because he hasn't shown up. I told them that he'd left over half an hour ago. Just then, person saw him outside.
When hubby arrived home, I asked how the outing went and he said fine. I asked what took him so long to get there and he said "nothing". I didn't question any more thinking maybe nearby road work slowed him down.
Tonight family member asked me if hubby told me what had happened (in front of him). No. He was reluctant for person to tell me (so he remembered)-----apparently he pulled up to apartment building and went to entrance and got no answer when he buzzed. Buzzed again. No answer. Went and sat in car for awhile. Then re-parked car in visitor area, got out and was going to wait outside building for family member to come out.( Not sure why he settled on that plan if he thought person wasn't in apartment). Luckily family member saw him walking up to building door and did come out!!
It turned out he'd rung the wrong buzzer. He'd forgotten the apartment number which he'd known the week before when we last went there together. It's one thing to forget the number but to go and wait in car and then move car and decide to wait outside for person to come out . . . very unsettling to hear what had happened especially when he'd not told me about it even when I asked why he was so late.
I realized I'd become rather quiet as I "digested" this news and decided I'd better make some conversation-----told my hubby about someone we know who'd been telling me about a program they'd watched on tv today. He asked, "TV? What tv?" "The TV they have." "They have a tv?" "Yes", says I. "I didn't know they have a tv" he said and asked, "Where did they get a tv?"
I explained who'd given this person a tv and he replied that was very nice of someone to give person the tv (which it was)-----but he's been told about the gift of that tv and been in their home and seen it. So in the space of 5 minutes, I was hit with two small reminders that all is not fine. Thankfully he finally has a referral to a specialist. Not a neurologist as it's for another medical problem. But he wants me to go to appointment with him and I'm planning on sharing ALL symptoms and concerns (not just those related to other medical problem) when specialist asks for his history and symptoms. I am hoping this dr will refer for testing.
My own experience is typical of the current diagnostic process for younger patients. When I recognized my DH was having cognitive issues, it was difficult to get him to agree to see the doctor – he did not recognize his own impairments; this is typical.
When, after much pleading, he went to our family physician, he was sent for a CAT scan (looking for a brain tumor); this is typical. The doctor also performed some blood work looking for other causes for DH’s symptoms; this is typical.
When these tests were all negative, the conclusion was “stress” (some patients may be told “depression”, some may be told both); this is typical. My DH was assured he was too young for Alzheimer’s (57), patted on the head and told he’d better work on reducing that stress – would you like a pill? This is typical.
After a year and worsening symptoms, the family physician reluctantly sent my DH to a neurologist, still assuring him he was too young for Alzheimer’s; this is typical. My DH balked at the neurologist’s suggestion that he take extensive neuropsychological tests, because from his point of view there was absolutely nothing wrong with him; this is typical. It was not until something happened which he could not deny, that he agreed to take the test; this is typical. After taking the tests, my DH was diagnosed with Mild Cognitive Impairment; this is typical.
My husband had good periods where I, too, wondered if I was imagining it all; I think this is also typical.
This diagnosis took 17 months, and really is still not a diagnosis. MCI patients are told they may or may not go on to Alzheimer’s. That allows DH to live in denial, and prevents me from being able to take the steps necessary to protect assets and plan for the future. All this, while I watch him getting worse and worse. The good news is, there is a new PET scan (Amyvid) which should be approved in several months which will help doctors diagnose Alzheimer’s – it shows the amyloid plaques that were only visible via autopsy until now.
Make sure you have a list of DH’s symptoms. Make sure the list is concise, brief, and generic – no long stories (you could bring a separate sheet for your own reference in case the doctor wants details). If you’d like, I could post my list and you could edit it as applies to your husband. I wrote a blog detailing my husband’s odd behaviors, specifically to help other people who are wondering what is going on with their spouse: http://downtherabbithole-mary.blogspot.com/ There is an entry (Dec 13, 2010) that talks about the difference between FTD and Alzheimer’s symptoms.
Sorry you are going through this – I feel your pain…
How old is your DH? Has he had a CAT scan to rule out a brain tumor? All the blood test to rule out vitamin deficiency, thyroid problems, STDs, etc.?
I haven't posted much, but do get so much from everyone. This is a particularly interesting topic for me. My DH was originally dx'd with probable FTD about three years ago. We were told the FTD dx was "backed into" because they didn't know what else to call it. My DH did so poorly on the cognitive tests (couldn't follow directions or understand what was asked of him) that the neuropsychologist suggested he had purposefully thrown the testing-I still am enraged by what he said. At that time, dr did acknowledge obvious brain shrinkage. Second neuro confirmed, saying it may be FTD, not sure, but most likely AD. All the tests done, MRI, CAT, etc. to rule out tumor, injury, etc. There was further brain shrinkage confirmed, as well. I constantly struggle to understand what this is but agree with previous postings - it's all AD no matter what the flavor. DH is 59 now, can't drive, can't work, needs help with dressing, meal prep, difficulty with finding words/communicating, just watches tv all day. Has some short term memory problems but surprises me sometimes with memory. He takes Aricept/Namenda combo and has since early dx. Don't really know if it helps. One reason I wanted to post is that my DH has obvious physical deterioration along with brain function and I wonder how common this is. He's lost over 50 lbs. in last two years, has an obvious jerking of his body/limbs, and is very weak. I've read things about FTD with motor neuron impairment and wonder. Dr. and assistants (as I've seen noted in some other posts) don't really get into any of this or give me any direction. Once the dx is made, all they want is an update every 6 months to track progress. Maybe there's just not much to do, but it would be helpful if there was something! Anyway, any thoughts would be helpful. P.S. I'm 56, still trying to keep up a business DH had but find myself drowning with caregiver duties, keeping up the business, taking care of household, inside and out, etc., etc. much as many of you experience. It doesn't seem to ever end. I cry a lot.
sisrael----I hope some others come along who know more about variations of ftd. The physical deterioration sounds like it could be a variant of ftd or maybe there is another condition along with ftd??? Are you in a bigger centre with a support group available? You mention seeing two neurologists so I'm assuming there is some dementia supports in your area?
It is such a juggling act taking over responsibilities that our loved one used to help with on top of all that we already have to do. Plus the concern about the changes we're observing. I went through a stage where I resented that DH wasn't helping as much as I'd have liked. Finally realized he isn't capable of as much as most men his age (and older!). Sometimes he surprises me and will do something on his own but other times, he does very little. I'm doing better with that now but still have moments when I wish I could rely on him to help/do more.
Glad you find this site helpful. Hope you will post more often!
Mary22033----thanks for sharing your insights with me! I especially appreciated your repeated reminder that the long delays involved with getting a diagnosis "is typical". Our family dr. has listened to my concerns and told me it sounded like early onset dementia of some type. But when hubby goes to see dr, DH tells dr "all is fine". Dr tried to get him to go for cognitive testing but hubby didn't see the need for it. (Some anosognosia perhaps??!) Hubby does have some other medical problems and therefore has extensive bloodwork and lab tests done at least once a year related to those problems. But that is it. One of his other conditions has developed some new symptoms over past year----hence the referral to a specialist. There can be cognitive involvement with this other condition----apparently it isn't common but can develop. Hubby doesn't like me going to regular dr appts with him but likes me to come to specialist appointments. However, it's has been several years since he's seen the need to be checked by the specialist (even though I've suggested it was time to ask for a referral). Anyhow, he wants me to go with him and this is the opening I have been waiting for. Knowing my hubby, he will answer the first 2 or 3 questions posed by the specialist and then he'll ask me to answer (because he finds it hard to answer too many questions all at once). My plan is to initially stick with the symptoms related to other condition but then to subtly ask about the possibility of cognitive connection/involvement. I am prepared to mention that family members have expressed concerns to me about DH's cognitive capabilities and we'll see where that goes. Even if this specialist thinks there is no connection, I am hoping he will recommend a referral to a neurologist in letter back to family doctor.
Rachelle, I could have written word for word what you wrote above. The only difference is that we have not been to a specialist as of yet. DH has other conditions and is aware that he has problems. It takes a lot of work on my part to get him to go to the doctor once a year to have his blood work and other tests done.
Hopefully on his next appointment in the next couple of months (if I can get him to go), Doctor can talk to him about his concerns.
DH likes to go to the doctor and I always go in with him. He will sit in a chair smiling while the doctor and I discuss his problems. It's almost like he is not processing the conversation even when we are talking about nursing homes or his hallucinations. He'll tell me later I like Dr. P....
Mary in Montana----It took some doing to get hubby to agree to me asking for a specialist referral for the new symptoms related to his other medical problems. Symptoms began over a year ago and when things weren't improving, I suggested a visit to family dr. Oh well, I think it's getting better, he'd tell me. Well, no, things weren't so I'd suggest making a dr's appointment again. He eventually agreed that he'd see the dr but then forget he'd agreed and forget to book appointment. I kept nudging and eventually he got an appointment and dr began various tests. But there were times when I'm sure hubby told dr. all was fine when things weren't. (And I honestly think my hubby's mind can't remember nature or frequency of symptoms).
So when it was time for flu shots, I booked an appointment for us together and shared my concerns about the ongoing symptoms. Dr gave DH a prescription to try for 3 months. It has maybe improved things slightly but if asked, hubby would tell anyone that things are much better . . . okay in fact. Knowing hubby would wait until prescription ran out and then wait some more before going back to dr, I pointed out that he still had symptoms and therefore needed to get back to dr before prescription ran out & that it was time to ask for a referral. Also said better to ask for referral now to get the process started due to lengthy wait to get into specialist. DH said he'd need me go with him to family dr. to do the asking!!! I readily agreed. I needed an appointment and booked a separate appointment for my hubby. Told him when it was and he asked why I'd done that when his prescription hadn't run out yet??? He said he was going to wait until after the prescription had run out. Aaaarghhh! I patiently explained reasoning behind booking an appointment now . . . he was skeptical but I told him the appointment was already booked. He thankfully didn't resist it. He didn't remember our previous conversation about it at all.
DH has had MRI's (no tumor or stroke), CT/PET scans (which indicated possible AZ in future), EEG's...he is on Aricept, Namenda, and Carb/Levo (for Parkinson's), plus a couple of heart meds. Every day it is "Do I take the morning pills for today?"......"Today is Tuesday (no...it is Wednesday) so do I take the Tuesday noon pill?" No it is Wednesday, you take the Wednesday pill....... EVERY STINKING DAY!!!! I have written it out, put the pills on the printer and printed out the daily doses for him to look at....and he STILL can't do it without me showing him. I get frustrated, but very gently help him with the pills he takes and when he takes them.
Shella, lots of less stress for you if you would put his pills our a week at a time in pill boxes and lay them out yourself for him to take. You will have to take over things - little by little. You can buy the little pill paper cups at the Drug Store. (((HUGS)))
Sheila--lmohr is right, managing the pills is an important function for you to take over right away. I'm sure you realize you will eventually have to take over everything, and yes, it is hard. However, the consequences of you NOT supervising the medications closely could potentially be much more stressful that just doing it.
We both have the pill boxes that I fill each week. DH used to put them out at night ready for the next morning but he doesn't do that anymore so I do it as well as the one with his night pills in. I have to remind him to take the night time pills and I put the morning pills in front of his coffee cup so he remembers to take them. So far so good!
I have 6 of the weekly pill boxes so I only have to fill them once every two weeks. 2 for morning, 2 for evening and 2 for bedtime. It also helps me to remember when to get his refills.
ps at some point not only will you need to hand him the pills you will need to stand there and make sure they are down the hatch! i went for months handing him his pills and watch him pop them into mouth. turned around left and thought all was well. later i would find tons of pills under the chair. he spit them out after i left. we tend to take things for granted it should go 'normal' when its not. divvi
Sheila, everyone here has said what I’m going to say. I have the pill containers too & I hand him his pills every morning & night & watch him swallow them. I am fortunate that he doesn’t mind taking his meds & at night he sometime reminds me (not that I would forget!). BUT as we all know that can change in an instant!
His pills have been in the pill containers for several years. They are laid out on the counter every day. Morning, noon, and bedtime as labeled. I monitor them closely ... with us both retired he sometimes doesn't know what day it is. Just another little bump in the road to hell.