My mother is in the Alzheimer's Unit and my father is in the early stages of dementia. He is sleeping with his clothes on, occasionally soiling himself and not bathing regularly to the point where others around him have complained about really bad B.O. I've addressed this issue with him and if looks could kill. He said he doesn't do anything to get dirty, thus, he doesn't feel he needs to bathe. He is exhibiting the same signs my mother did 2 yrs ago before placing her in an Alzheimer's Unit. What can I do? I've suggested a big desk calendar to write down things to do that day. Any other suggestions? Also, his sleeping hours are out of wack. He gets up around 4:30 a.m. and goes to see my mom for the day. He comes home around 5-6 p.m., goes to bed around 7 and is up around midnight, snacking constantly. I have also noticed that he is touching people inappropriately. Nothing major, but this too is a concern.
I got rid of the bathtub, and replaced it with a walk-in shower, which she much prefers and it's easier for me to bath her. She doesn't mind the walk in shower, and it's easier to get in and out -- WITHOUT danger of her trying to bathe herself in the middle of the night while I'm asleep or something. She still washes her own private parts because I tell her to do it so I just have to wash her back, legs and hair.
I agree with Ferris. He's probably entering into a stage of depression. I know when I visit my mother in the facility, I, too, get somewhat 'stressed' after seeing people we normally don't see on a regularly basis in our everyday lives.
You say he doesn't feel he gets anything dirty. I beg to differ. Feces is dirty.
Another problem elders have is loss of sense of smell.
You're going to have to convince him to see a doctor who will take it from there. You will have to go with him into the examining room. You need to get a health care proxy and if possible Power of Attorney. You say he's in the first stages of dementia.
He needs help. I don't believe he can live alone any longer. There are all kinds of things he could get into and leaving things on the stove top is one of the 'things' that really scares me.
What your dad is exhibiting is serious and I think you understand that because you've written. Please keep us updated.
Taking care of elders is not pretty. It's not fun. It's stressful stuff. If you have a small child who needs a doctor, we take them. We don't ask them. We just take them. They cry. If he doesn't want to go, you'll have to ask the doctor to write up an order to get him there. This sounds harsh, but it may be the only way to get him into a facility where he can be evaluated and treated. I would imagine the doctor treating your mother is the best one to see first if he doesn't have a doctor.
You have to do it. It's sad. But it needs to be done.
We each have different ways of dealing with Mom. I have told my brothers over and over---one in particular who just doesn't get it and always loses his temper with her!---that you don't ASK our mother if she would like to eat or bathe or go to the doctor. You cheerfully place small portions of a balanced meal in front of her, or tell her that "Whoops! It's getting late---better get in the shower" (a walk-in with a seat and hand-held shower head), or "remind" her of her doctor's appointment. The most difficult is the bathing, because she will often say that she already showered. Shower check reveals a bone dry stall. Sigh...
My (late) father used to say that to get anywhere with Mom you had to make her think it was her idea. He was absolutely right but before she lapsed into dementia I used to bristle at molly-coddling a so-called adult like that. Now I merely regard it as a "technique." For others here different techniques work. We each know our parent or spouse best, but there are times when the expertise and perspective of outside help is what is needed. Good luck and a strong constitution to all of us!
I'm not familiar with behaviors characteristic of Alzheimer's, as I know that you are (I'm so sorry to hear about your Mom). I know the not bathing thing ("because I don't do anything to get me dirty!") is not uncommon for a lot of older folks, even those without dementia … but it is VERY characteristic in FTD sufferers. I know how frustrated you must be ... it was so, SO difficult to deal with my Dad on this issue. The WORST body odor ... my visiting aunts and uncles would literally call to take me to task for it, as if there was anything I could do other than have horribly embarrassing-to-us-both conversations with him (repeatedly) about the need to bathe (first, every other day … then at least twice a week … then even once a week). Not only would he not bathe, but he would not change his clothes because doing laundry was becoming more and more difficult for him. (Also, he couldn't smell how bad they smelled.) Since I live in another state, it took me many months and several visits to realize everything that seemed to be contributing to the problem. I tried literally everything I could think of ... got him a very stable and comfortable shower bench so he wouldn’t have to stand in the shower ... a very nice shower radio so he would have something to listen to in the shower in case the problem was that he was bored there (he loved listening to radios in general, but never took this one out of the box) … a call button. My parents had, years before, had safety/grab bars installed all over the bathroom, including the shower, so I knew the shower itself wasn't particularly unsafe. I asked him repeatedly what it was that had started to bother him about showers (was he afraid of falling? HAD he fallen? Had he burned or otherwise hurt himself somehow in the shower? and so on) and the best I could get was a long pause … a frown where I could see he was seriously trying to think of the answer, as if it were eluding him … and finally a shrug and an "I don't know. It's just so much trouble." The only thing that worked in the end was when we got to a point of having to have caregivers come in every day, and simply earmarking two days a week as "shower" days. They tell him it's time, walk him into the bathroom and start helping him get set up to take the shower, and he does. (They used to just direct him to go take the shower, but at some point, he started just disappearing in the bedroom for a while but not actually showering. Same thing with tooth-brushing) It's a depressing kind of an arms race.
But the things that make me wonder about FTD in your Dad's case specifically are the inappropriate touching (FTD comes in a few different "flavors" or “variants,” and in the "behavioral variant," there is an increasing lack of inhibition in the person's behavior and comments) ... the very early mornings/early bedtimes/getting up for hours in the middle of the night ... and particularly the constant snacking (especially if it is of sugary foods).
Another characteristic of FTD is an increasing loss of "insight" by the person into his own condition. I have read from accounts by many ALZ patients themselves and by their loved ones that in the early stages, people with ALZ are frequently quite aware that something is wrong ... that they're getting lost going to familiar places, for example, or having moments where the memory utterly fails them, and that they are frightened by are worried about these occurrences. FTD patients may or may not be aware of disturbing episodes or events, but even when they’re aware of them, they don't seem to find them disturbing. It isn't just an act designed to make other people think nothing is wrong. It's just the strangest sort of “emotional disconnect” on their part to what is happening to them (I’ve found this to be both a blessing and a curse). The blessing is that they don’t seem to be frightened or depressed about their condition (to the extent that they are or remain aware of it at all). When Dad and I met with his neuropsychologist for the results a few weeks following his extensive testing, and she gave us his likely diagnosis and prognosis, he was (to me) shockingly unperturbed. An hour later, he didn't remember that he had been diagnosed with anything at all, and I told him again (again, the same apparent understanding/follow-up questions and odd lack of concern) ... though he has never, EVER forgotten that “that pretty doctor took away [his] driver's license just because he’s too old" (fairly early on, I stopped spelling out the diagnosis over and over to him … there didn’t seem to be any point).
FTD affects a different part of the brain than Alzheimer's (the atrophy is of frontal and temporal lobes, distribution is lobar rather than diffuse like ALZ, and there is no increase in plaque formation), and it follows a different (typically shorter) timeline ... but like Alzheimer's, it is a progressive, irreversible disease. There is the behavioral variant I mentioned above and also two language variants (progressive non-fluent aphasia, which gradually affects the person’s production of speech, and semantic dementia, in which the person experiences increasing difficult assigning meaning to words).
Typical symptoms of FTD include:
• Loss of inhibition
• Inappropriate social behavior
• Loss of motivation, but without depression
• Loss of empathy and sympathy
• Change in preferences
• Repetitive or compulsive behaviors, rituals
• Loss of control over eating and drinking
• Difficulties with planning, organization or decision making
• Memory and visuospatial skills mostly preserved in early stages (also depends on the particular FTD variant), and cognitive deficit typically less initially noticeable than behavioral changes
• Loss of insight
• Loss of awareness of personal hygiene, and increasing incontinence as the disease progresses
Most dementias cannot be definitively diagnosed until after death, but neuropsychological testing can reveal patterns in thinking, judgment, and logic that strongly indicate what is happening to the brain. It could be useful to know whether your Dad is more likely dealing with FTD or ALZ (or something yet else?), not least because the meds commonly prescribed for ALZ (i.e., Namenda, Aricept) have been shown clinically to do absolutely nothing for FTD. The reason for this is that the two diseases damage their respective parts of the brain via completely different mechanisms, and the specific things Namenda and Aricept do that MIGHT (or might not; no one knows for sure) serve to slow disease progress in an ALZ patient just spin their wheels in an FTD patient (because the disease doesn't progress along those same pathways).
A neuropsychologist who suspects FTD will likely also recommend neurological imaging to exclude other causes of symptoms (typical, MRI, at CT scans can miss relevant pathology) and to try to differentiate between the types of dementia present (e.g., “semantic FTD” shows a highly characteristic MRI pattern, while the scans of the other two FTD types are more variable).
The sort of neuropsychological testing I am talking about is much more extensive than a short mental exam at the doctor’s office (i.e., it will take 3 hours or so). It would not be performed by your Dad’s primary care provider, but by a neuropsychologist to whom he is referred for such testing. To get this referral, you would first take your Dad to see his PCP, describe what you are seeing/experiencing (the doctor will also ask your Dad questions, including about how your Dad himself thinks he is doing, to which your Dad will likely respond he is not aware of any issues), and the doctor will likely perform an office MME (mini-mental exam). Based on the results of that and on what he hears from you, he may give you the referral to the neuropsychologist.
Whether or not you know your father’s PCP, I recommend writing a BRIEF explanation of the concerning behavior you are witnessing and stating that you would like a referral to a neuropsychologist and faxing it to the PCP’s office (directing it to his attention and asking that he read it before your Dad’s upcoming appointment on whatever day and time). Call the office before you fax and explain to the receptionist that you are about to fax a note you would like the doctor to see before your Dad’s upcoming appointment … ideally, then follow up and make sure it was received and at least added to your Dad’s file. This may make the interaction at the doctor’s office easier for you, because you may feel less uncomfortable having to contradict your Dad in front of him, simply by making reference to your note “in Dad’s file.” (This is the point of making the note BRIEF. If the doctor has not already read it, he may need to read it on the spot, while you’re all sitting there.)
Also, I recommend finding out before the appointment with the PCP if there will be any forms that have to be filled out/updated for the office. If so, it would be great if you could download them, pick them up, or have them faxed or emailed to you so you can fill them out in advance (including the “date” on any page your Dad needs to sign). Otherwise, your Dad will be filling out a lot of information over and over and over (and probably asking you repeatedly for the answers) just 10 minutes before the doctor asks him some questions (like “What month is is?” and “What day is it?”) … and might therefore be able to respond correctly to questions to which he otherwise would not have known the answers.
On a side note, you may know from your Mom’s ALZ that in addition to the EXTREMELY mini-mental exam often given in a doctor's office, there is a slightly longer, maybe 30-question
“Mini-Mental Status Exam” (MMSE) sometimes given to dementia patients. I just want to add here that while the MMSE is fairly reliable in measuring ALZ progress, it has been demonstrated clinically NOT to be particularly effective in diagnosing or measuring the progress of FTD … primarily because the questions it asks are not designed to tax the brain's executive function very much if at all (and this is where FTD hits hardest). Some FTD patients have scored perfectly or near perfectly on the MMSE while having to be confined in memory facilities because they could no longer safely live on their own. A full neuropsychological workup (plus imaging, if suggested) is the best (non-post-mortem) way to differentiate an FTD diagnosis.
Bottom line, it's definitely time to take your Dad in to start the process of getting him diagnosed and finding out (as best you can) what he and you are really facing here. Litldogtoo is absolutely right; he should probably not be driving anymore. If you can get the referral to a neuropsychologist for testing, my strong suspicion is that he will do poorly enough on the test that the doctor will tell you both when you meet to discuss the results that he has to stop driving. (This is what happened in our case, and it was SUCH a relief to have his doctor say it, because then *I* wasn't the bad guy taking his keys away with no “authority.”)
As I remember it, Medicare (and the Medicare Advantage plan Dad had at the time) covered nearly all of the testing and neuropsych consults. I assume the same would apply to any neurological imaging you decided to pursue on referral (we did not, as the neuropsychologist suggested it “to be completely thorough,” but said she was extremely confident in the diagnosis based on Dad’s test results … and Dad really, really did not want to go to yet another doctor).
Final note ... if your Dad is not bathing, odds are VERY good he is not taking care of his teeth well anymore either. My Dad went from never having had a cavity in his life to needing 13 fillings and a root canal in one year. The problem was aggravated by the constant snacking on cookies and candy bars and his increasing lack of interest in brushing his teeth. If your Dad hasn't been to the dentist in a while (and he may not accurately remember how long it's been), I recommend getting him in soon to find out what might be going on on that front, as well. I have gotten to a point with my Dad of scheduling formal dental cleanings every 3 months (and pay for the "extras" out of pocket, because sometimes the caregivers are good about standing in the bathroom to watch him brush, and sometimes, I'm pretty sure they just tell him to brush (in which case, I doubt he does). Dental work can get really, really expensive really, really quickly, and Medicare covers nothing ... even if a person has some kind of supplemental dental insurance, it's easy to max out annual benefits quickly. I've found the cost of the extra cleanings -- and catching things really early -- is much cheaper than the cost of serious repairs.
Does your community have an Office on Aging service? I live in PA and we have services for the elderly in our counties. It acts as an advocate and ombudsman for the elderly and they (through funds from state lottery) can provide some at home services free of charge. Our Office on Aging provides weekly visits by local companies that send healthcare aides to do things like assisting with bathing, some housekeeping and companionship. They also provide the at home emergency alert system for the elderly. You know, those buttons they wear around their neck that they can push in the event of an emergency to get needed medical attention. You might also want to look into Meals on Wheels for your area.