Medical Forum / Diseases and Disorders / Alzheimer's / April 2004
DMV Concerns and Getting My Dad Diagnosed
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Steve Crow - 15 Mar 2004 15:39 GMT Hi,
My Mom is very concerned about my Dad who is 71 and seems to be getting unusually forgetful. She said they will have conversations and then he will ask a few moments later about the thing they just talked about, he does tend to repeat himself, talk loud and do "forgetful" things like leave a car door open after bringing in the groceries. I am told his golf buddies have noticed things too. His driving skills have been a bit shakey as well.
So my Mom wants to get him in for an evaluation but the concern is that if Dad is put on Meds, like aricept, will that mean the DMV will take away his driving license? Not being able to drive would crush my Dad's ego to dust and that's assuming we can even find a way to get him evaluated without telling him we are concerned about Alzheimers. Two of this brothers had it which, of course, adds greatly to our concerns.
So the questions are:
1. at what point will DMV be notified by the Doctor, right away? (meaning right after prescribing meds, assuming he has ALZ and the doc puts him on Meds)
2. How can you get someone evaluated -even get them to the appointment -without basically shaming them? I guess the doctor is going to have to ask him some pretty leading questions...Dad will figure it out pretty quickly he is still very sharp in some departments.
3. On a selfish note, what is the state of research on the genetic link to Alzheimers? I assume my chances of getting it are elevated (assuming my Dad is diagnosed) but by how much? Is there anything I can do about it NOW (I'm 43) to reduce my chances? Steve
Darryl - 15 Mar 2004 20:53 GMT Hi Steve,
>So my Mom wants to get him in for an evaluation but the concern is >that if Dad is put on Meds, like aricept, will that mean the DMV will [quoted text clipped - 3 lines] >Two of this brothers had it which, of course, adds greatly to our >concerns. All questions aside, if your Dad's friends and loved ones are commenting on changes, crushing his ego should be the least of your concerns. Once my Dad was lit up by a copper who followed him for a couple kilometers doing 80 or so in a 60 km/h. He was confused by the flashing lights and fortunately got off with only a speeding ticket. Just prior to this, our family physician had submitted paper work to the minstry of transporation to have his license suspended (or revoked or whatever) but the ticket provided an easy way out. Taking away his license did bother him but it was a small price to pay for peace of mind.
>1. at what point will DMV be notified by the Doctor, right away? >(meaning right after prescribing meds, assuming he has ALZ and the doc >puts him on Meds) Dunno about DMV's. :-)
>2. How can you get someone evaluated -even get them to the >appointment -without basically shaming them? I guess the doctor is >going to have to ask him some pretty leading questions...Dad will >figure it out pretty quickly he is still very sharp in some >departments. Honesty has been the policy that's worked with my Dad and to a lesser extent, my Grandmother.
>3. On a selfish note, what is the state of research on the genetic >link to Alzheimers? I assume my chances of getting it are elevated >(assuming my Dad is diagnosed) but by how much? Is there anything I >can do about it NOW (I'm 43) to reduce my chances? In terms of supplementation, Vitamin C (500 mg), Vitamin E (400 IU) have been associated with reduced incidence of AD. Daily NSAID (e.g., aspirin) use may be associated with a decreased risk but the jury is still out. Omega-3 fatty acid levels are lower in sufferers of AD and can be supplemented with flax seed or fish oil capsule. Eat lots of fruits (especially blueberries) and vegetables, and a diet low in saturated and trans-fatty acids. Green Tea may have some useful compounds and many other supplements or foods look good in the test tube but a link with dietary intake has not been established (e.g., curcumin from tumeric might be useful but little if any is present at sites distant from the GI tract). Excercise, laughing and smiling can't hurt.
Mary G wrote a wonderful synposis of heridity and AD a while ago...
---------- Irrespective of family history, about 5 in 100 people have Alzheimer's at age 65. By age 80, these odds increase to 1 in 5. By age 90, nearly half of all people have some symptoms of dementia, so just being lucky enough to live to an advanced age is the biggest risk factor, never mind your genes. Only 3% of all cases of Alzheimer's have a proven hereditary link.
The two basic types of AD are familial and sporadic. Familial AD (FAD) is relatively rare affecting less than 10 percent of AD patients - it often gets called early onset Alzheimer's. It is associated with gene mutations on chromosomes 1, 14, and 21. FAD is the result of a certain inheritance pattern called autosomal dominant. In this pattern, all offspring in the same generation have a 50/50 chance of developing AD if 1 of their parents had it - so its similar to Huntington's disease. FAD occurs in younger people - usually before age 60 - so it is a form of dementia that tends to hit people in middle age. If this was in your biological relatives, you would likely be hearing stories about people who went downhill while still in the theoretical prime of life - their 40's, 50's or 60's, not just in their senior years. At least forty percent of people who develop early-onset Alzheimer's have a family history of the disease.
Garden variety onset AD is usually refered to Sporadic AD and usually occurs later in life, is far more common than FAD, and appears to be related to the apoE gene found on chromosome 19. ApoE comes in several different forms or alleles, but three occur most frequently. People inherit one allele (apoE2, apoE3, or apoE4) of the apoE gene from each parent. People with both apoE3 and apoE4 alleles (E3/E4) are affected by both alleles. Having one or two copies of the E4 allele increases a person's risk of getting AD. Having the E4 allele is a risk factor for AD, but it doesn't mean a person is doomed to get it -some people with two copies of the E4 allele (the highest risk group) don't get AD and others with no E4s do. So, the jury is out on the exact degree of risk of AD for any given person based on apoE status. ----------
Take care, Darryl.
Tumbleweed - 15 Mar 2004 21:23 GMT > Hi, > [quoted text clipped - 13 lines] > Two of this brothers had it which, of course, adds greatly to our > concerns. My dad was *really* pissed* when we took his car away. Too bad, better than someone getting killed. I'd also guess that in your litigous society, you might well be liable? If you are posting using your real name, the evidence is here for all in a court too see that you knew he might be dangerous yet did nothing about it.
> So the questions are: > > 1. at what point will DMV be notified by the Doctor, right away? > (meaning right after prescribing meds, assuming he has ALZ and the doc > puts him on Meds) I would hope so, maybe before he kills someone :-(
> 2. How can you get someone evaluated -even get them to the > appointment -without basically shaming them? I guess the doctor is > going to have to ask him some pretty leading questions...Dad will > figure it out pretty quickly he is still very sharp in some > departments. Depends how aware he is, can you come right out, say you are worried about his memory and that you'd like to get him checked out since there are medicines that work well (such as aricept) if taken early? If he doesn't want to go, IMHO chances are higher he has it, denial is not a river in Egypt but a common state of mind of Az sufferers. Then you have a real struggle on your hands. But why is it shaming?
FWIW my mother insisting got my dad to go to be tested, is your fathers relationship with your mother such that that would work?
> 3. On a selfish note, what is the state of research on the genetic > link to Alzheimers? I assume my chances of getting it are elevated > (assuming my Dad is diagnosed) but by how much? Is there anything I > can do about it NOW (I'm 43) to reduce my chances? No. No doubt you may get responses here varying from eating fresh fruit, taking antibiotics, drinking 10 pints of water a day, taking various vitamins, not cooking with aluminium, keeping active, keeping your mind active, etc etc. They may work for some people, but no one *knows* if they work, or if they'll work on *you* and there are certainly too many to try them all.
FWIW the stats are that (IIRC) about 50% of people aged over 85-ish have it, so if your dad had 10 siblings and only 3 got it (including him), you may be at less risk than the average populace :-) whereas if he had 2 and both had it, maybe thats bad news or maybe thats just coincidence.
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Mary Gordon - 16 Mar 2004 01:36 GMT Steve, your mother's first step should be to get him to the doctor - and she should talk to the doctor about what she is seeing before your father gets there, since if your father is forgetful, he may not remember to tell the doctor, or may minimize the problems. Many people in early AD will have no insight into their own problems and will deny there is anything wrong with them - so if the doctor asks him how he is, he may not tell him he's forgetting things. The doctor needs to know before your father goes in - and he needs to be told that whatever is going on is obvious enough to be noticed by people beyond immediate family.
How do you get him to the doctor? You get the doctor in cahoots with you, or you book the appointment and you put a "spin" on the reason. You tell your dad he needs a full physical for insurance reasons, or you get the doctor to call your dad in for a blood pressure check or whatever it takes. You don't have to tell your dad the primary reason is his memory - but before your dad goes in there, the doctor has to be primed about the issue so he's alert and looking for problems right off the bat.
First step will be some simple in-office mental status tests, a full physical, a review of medical history and medications, blood tests etc. to rule out all kinds of other causes of confusion and memory loss. After that, the usual drill is being sent to a neurologist or geriatric psychiatrist for an examination to rule out another group of potential causes like tumours, strokes, depression etc. The exam usually includes a brain scan of some kind. A thorough workup will include some testing for deficits (i.e. memory and cognitive tests to tell how impaired the person is).
Only once everything else is ruled out do they tell you that the probable diagnosis is AD. At that point, in many jurisdictions, the doctor has a legal responsibility to report the person to the licensing authority. Here in Ontario, the person then gets a letter and they have the option of redoing their driver's test to demonstrate they are still safe to drive - which seems pretty reasonable to me, since if you can't pass the test, you shouldn't be on the road.
I have to tell you, your father driving or not driving is the very least of your worries. If he has AD, he has a progressive, incurable, dementing illness that ultimately kill him, after dismantling him neuron by neuron. In other words, if what you suspect is true, your whole family is about to turned upside down - nothing will ever be the same again.
You also should think about this - even you think his driving skills are shaky, but you don't want to upset him. How do you think you or he would feel if he is the cause of an accident, and hurts someone? Driving is not a right - it is a priviledge predicated on being able to do so safely - which means your eyesight, your depth perception, your reflexes and reaction time, your ability to think fast and make decisions and appropriate judgements, your knowledge of the rules, your memory - all have to be intact, or you are a danger to yourself and others. You don't want to find out he's past it by him hitting the gas instead of the brake and driving into a pile of school children, or through the window of the local coffee shop.
So, you take this one step at a time - you find out what is wrong with him, and what, if anything you can do about it. And then you deal with what comes next, including driving, wills, powers of attorney, and future plans for support for your mother as caregiver.
Your odds of AD are elevated a bit from the general population, but not as much as you might think. At your father's age, about 3% have AD, but by the time people reach 85, almost 50% have Alzheimers - so everyone's odds go up with age. Right now, they know that early onset AD (a form that comes on in middle age) i is strongly linked to genetic factors, and if you have a parent with that form, your odds are 50-50. But the kind that gets us as seniors is much less strongly linked to genes. It appears with the sporatic form, it is some combination of genes and environment, but no one is sure what the triggers might be. The common sense thing to do is take good care of yourself in general. Keep your weight down, exercise, keep your blood pressure and cholesterol down, be active, eat a good diet etc. etc. - you may or may not get AD, but you will up your odds of living long enough to come into the danger years!
Mary G.
Greg F - 16 Mar 2004 03:20 GMT After my mom had been diagnosed and taking meds she continued to drive a little. After a while I talked to the Dr. and he agreed. I took mom in for an appointment and he told her not to drive and mom argued but he got tough and said he would have her committed if she drove again. I called the DMV and they sent me a form that I filled out some and the Dr. filled the rest and mailed it in. Mom received a letter saying her license had been revoked for medical reasons. It was not easy to do but my mom would have killed someone. She has lost muscle control.
I am sorry you are experiencing this. I went through it and I know exactly how you feel. This is the most difficult thing I have ever done. I will pray for you.
Greg F
> Hi, > [quoted text clipped - 31 lines] > can do about it NOW (I'm 43) to reduce my chances? > Steve turkey in the straw - 18 Mar 2004 04:47 GMT Has anyone had an AD patient on ozygen?My mom seems a tad more normal while she's on it.Her dr.said it may make her mind a bit clearer.I am wondering if lack of oxygen has anything to do with AD? I am waiting on starting Namenda until i know more about it.Just seems lots of ad.patients get worse on it.
Darryl - 18 Mar 2004 06:55 GMT Recently, interest in memantine piqued because of availability in North America and a study that looked at a combination of memantine and Aricept.
"Treatment discontinuations because of adverse events for memantine vs. placebo were 15 (7.4%) vs 25 (12.4%)." That's right, more adverse events in the placebo (i.e., no-memantine) group. There were 404 participants, 203 of which received the drug.
The authors concluded that in patients already receiving Aricept, "memantine resulted in significantly better outcomes than placebo on measures of cognition, activities of daily living, global outcome, and behaviour and was well tolerated."
JAMA (2004). 291:317-324.
Darryl.
>Has anyone had an AD patient on ozygen?My mom seems a tad more normal >while she's on it.Her dr.said it may make her mind a bit clearer.I am >wondering if lack of oxygen has anything to do with AD? > I am waiting on starting Namenda until i know more about it.Just >seems lots of ad.patients get worse on it. > Tumbleweed - 18 Mar 2004 08:18 GMT > Has anyone had an AD patient on ozygen?My mom seems a tad more normal > while she's on it.Her dr.said it may make her mind a bit clearer.I am > wondering if lack of oxygen has anything to do with AD? > I am waiting on starting Namenda until i know more about it.Just > seems lots of ad.patients get worse on it. How would you know? Are you are letting anecdotal reports here override the results of many controlled medical trials in many countries, ovre the past 15 or so years, most of which found benefits? Time is not your friend here.
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turkey in the straw - 19 Mar 2004 05:10 GMT Tumbleweed, You are such a angry person i wish you would not respond to my posts!!!!! Furthermore my mom is on many meds.and namenda may not be good for those with heart problems.I choose to know more about it.
Tumbleweed - 19 Mar 2004 09:20 GMT > Tumbleweed, > You are such a angry person i wish you would not respond to my > posts!!!!! Furthermore my mom is on many meds.and namenda may not be > good for those with heart problems.I choose to know more about it. We all choose to know more, which is why I asked how you know that "lots of ad.patients get worse on namenda"? You cant just make a statement like that and not expect to be challenged(or maybe you can, so it seems?) If you have some evidence I'm sure everyone here would like to know, indeed I'm sure your drug authorities would like to know. Yet dozens of scientific trials have found that on the whole it provides a benefit. So, your evidence to the contrary is.........?
BTW, is namenda contraindicated for those with heart problems? What did your mothers doctor have to say about it?
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Darryl - 19 Mar 2004 13:24 GMT >> Tumbleweed, >> You are such a angry person i wish you would not respond to my >> posts!!!!! Furthermore my mom is on many meds.and namenda may not be >> good for those with heart problems.I choose to know more about it. >> >BTW, is namenda contraindicated for those with heart problems? No. Well, depending on how you interpret the following post from a while back:
"You should only be giving memantine to your mom under the supervision of a doctor, especially in the case of a heart complication. According to the prescribing information on the namenda website, side-effects include: hypertension (4%) and infrequent events such as angina pectoris, bradycardia, myocardial infarction, etc.
If your doctor is unfamiliar with the drug, the prescribing information can be found here:
http://www.namenda.com/pdf/namenda_pi.pdf"
Darryl.
Beverly - 19 Mar 2004 18:08 GMT I don't know about many but quite a few have responded to my posts saying it seemed to make their lo worse (Namenda). and one of the chief side effects listed by the drug manufacture is confusion so.......... just because it works for many does not mean it is for everyone.............and only the caregiver has the right to make that decision knowing their loved one............but many are riding the drug out to see if the side effect goes away.... I think I will do that with my lo also. I would so love for her to have some better days and though they are very bad now maybe worse because of the Namenda, it is the only real hope right now for better days. Beverly
> > Tumbleweed, > > You are such a angry person i wish you would not respond to my [quoted text clipped - 11 lines] > BTW, is namenda contraindicated for those with heart problems? What did your > mothers doctor have to say about it? Tumbleweed - 19 Mar 2004 18:34 GMT > I don't know about many but quite a few have responded to my posts saying it > seemed to make their lo worse (Namenda). and one of the chief side [quoted text clipped - 6 lines] > because of the Namenda, it is the only real hope right now for better days. > Beverly Agreed, a few people have said it makes their LO worse (maybe 10 tops?), but what you have in this group is a completely unrepresentative sample of people. For example, chances are that the percentage of carers who even *read* this board is an insignificant percentage of carers, and people who post are beyond insignificant :-)
Plus, as with most things, you'll probably get a 10:1 or better proportion of people with problems posting compared to people who don't.
Plus, you have a huge amount of anecdotal experiences which some may take as gospel but in fact are people guessing what the causes are, for example someone posted that they changed suppliers and immediately saw a difference in behaviour and drew the supposition that maybe the formula was different. Well, maybe, but then again Az sufferers change behaviour often., more likely it was a complete coincidence, I'm sure they had changed changed behaviour in the past.
FWIW I have no axe to grind, memantine appeared to do my father no good at all, but I'm concerned that people would choose anecdotal and random comments from an unrepresentative sample of people over the results of large scale trials spread over years.These trials are done double and triple blind for very good reason, that even the people carrying out the study can be influenced by what they want to see. How much more so for people subconsciously looking for something to blame for a change in their LO (for the worse, or the better)?
As an aside, I wonder if the confusion is caused because the persons memory has got better? Many here would report that as their LOs get worse, you get to a stage where they are much quieter and more amenable, probably because they cant even function well enough to be confused. get the memory a bit better, and maybe they are back to the confusion stage they were at 6 months or a year previously? Which is why its vital to use these drugs asap, and why waiting is probably pointless, waiting = don't bother, with Az.
Wouldn't be much use for the OP to decide in 2 years time that it's a great drug :-(
AFAICS there is very little to lose ......from the anecdotal results I read here :-) by trying, it seems to have few side effects and no long lasting effects, , and there is a lot of potential harm to be gained by delaying. Time is our enemy with this condition.
Finally, other than the few reports of people who have said memantine made people better (not cured, just better) don't get your hopes up, the trial results I have read, including the original German one, reported that at the end of the trial period, people on the drug functioned better than people not on it, but both groups declined. Not sure if anyone has done a trial with aricept *and* memanine yet?
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Darryl - 19 Mar 2004 20:39 GMT >Finally, other than the few reports of people who have said memantine made >people better (not cured, just better) don't get your hopes up, the trial >results I have read, including the original German one, reported that at the >end of the trial period, people on the drug functioned better than people >not on it, but both groups declined. Not sure if anyone has done a trial >with aricept *and* memanine yet? I sometimes think I've made it into a few killfilters ;-)...here's an earlier post that I made in this thread. If my Dad was still around, I'd put him on memantine in a sec. and have him closely monitored (and still ultimately learn that he suffered from Lewy Body disease :o) For those interested, memantine *should* work in a similar manner with other acetylcholinesterase inhibitors (e.g., reminyl).
Tumbleweed, unlike the German observational study, this study is randomized, double-blind, placebo-controlled.
<chop> Recently, interest in memantine piqued because of availability in North America and a study that looked at a combination of memantine and Aricept.
"Treatment discontinuations because of adverse events for memantine vs. placebo were 15 (7.4%) vs 25 (12.4%)." That's right, more adverse events in the placebo (i.e., no-memantine) group. There were 404 participants, 203 of which received the drug.
The authors concluded that in patients already receiving Aricept, "memantine resulted in significantly better outcomes than placebo on measures of cognition, activities of daily living, global outcome, and behaviour and was well tolerated."
JAMA (2004). 291:317-324.
Darryl.
Evelyn Ruut - 19 Mar 2004 19:11 GMT > I don't know about many but quite a few have responded to my posts saying it > seemed to make their lo worse (Namenda). and one of the chief side [quoted text clipped - 6 lines] > because of the Namenda, it is the only real hope right now for better days. > Beverly Beverly,
Most of the people who are just starting to take Namenda are people who have been sick for a while already. The natural tendency of this illness is to get worse. We often say around here "This is as good as it is going to get" because of that.
If you find that Namenda or ANY medication makes your loved one appear to be getting worse, then don't use it!
But you should consider giving it a try again later to make absolutely sure that is what it was that made them worse. Why? Because physical illness, being tired, being stressed, ALL can make our loved ones appear to be getting worse. If at the same time you were starting medication, then how would you know which was the cause?
My mother in law could not take one medication and got noticeably worse when on it. The minute we switched her back to Aricept she got so much better that it was amazing.
When it comes to medication, you should always remember YMMV (your mileage may vary)
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turkey in the straw - 20 Mar 2004 05:50 GMT My mothers doctor knew nothing about Namenda.Another reason i haven't started her on it.And the papers said to use it with caution in heart patients.
Evelyn Ruut - 19 Mar 2004 13:25 GMT > Tumbleweed, > You are such a angry person i wish you would not respond to my > posts!!!!! Furthermore my mom is on many meds.and namenda may not be > good for those with heart problems.I choose to know more about it. This is Usenet. It means anyone can reply to anyone. Get used to it or else learn how to use your "block sender" option in your newsreader program.
I like Tumbleweed and I haven't seen a single nasty thing he has said to anyone to warrant the reply you gave him. He is a legitimate member of this group.
As for spammers and people posting with an agenda, that is different.... all bets are off and they deserve to be blasted.
Meanwhile, Chill out. Life is hard enough without sniping at people in your support group.
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Dennis P. Harris - 19 Mar 2004 13:43 GMT > > Tumbleweed, > > You are such a angry person i wish you would not respond to my [quoted text clipped - 3 lines] > This is Usenet. It means anyone can reply to anyone. Get used to it or > else learn how to use your "block sender" option in your newsreader program. barb, there is no need to be so defensive. folks are trying to help you learn more about it, and you reply with statements that are not supported by facts and published medical literature, nor by the experiences of members of this group.
turkey in the straw - 20 Mar 2004 05:57 GMT Literature that i recieved from her doctor said to be cautious with heart patients.
turkey in the straw - 20 Mar 2004 05:54 GMT Evelyn, I did not post to you and i assume tumbleweed can stand up for himself.It's just the way he comes across sometimes.OK
Dennis P. Harris - 20 Mar 2004 07:18 GMT On Fri, 19 Mar 2004 22:54:30 -0600 (CST) in alt.support.alzheimers, barbfrombethel@webtv.net (turkey in the straw) wrote:
> Evelyn, > I did not post to you and i assume tumbleweed can stand up for > himself.It's just the way he comes across sometimes.OK you need to learn that IF YOU POST HERE YOU POST TO EVERYONE. this is an open forum, and anyone who posts here should expect commments on their posts, because that's what's been going on in newsgroups for almost two decades.
if you have a private message for someone posting here, use email.
Mary Gordon - 19 Mar 2004 17:18 GMT You might want to read the information here (click on the prescribing part and read the detail) http://www.namenda.com/
Of all the drugs they've come up with so far, memantine is one of ones with the fewest side effects and contraindications - and one of the most studied in terms of efficacy. I went through the information with a comb and a heart problem should not preclude her from taking this.
No matter WHAT she takes, she is going to get worse. Once you get to the mid to later stage, the AD has so compromised their brains that every further loss, no matter how small, translates into big impacts on behaviour and abilities. Just to demonstrate how true this is, ask any of us about the impacts of even a minor headcold on our loved ones in that stage. They are hovering on the edge all the time.
The best you can hope for is that you can buy her some time now, so sooner is better than later when it comes to starting drugs like this.
Mary G.
Dennis P. Harris - 16 Mar 2004 04:56 GMT > 1. at what point will DMV be notified by the Doctor, right away? > (meaning right after prescribing meds, assuming he has ALZ and the doc > puts him on Meds) If the doc is doing her/his job, they will notify DMV of *any* driver that would be unsafe on the road. Most will do it because they can be sued if they knew about any condition that impairs driving and don't do anything and someone gets hurt or killed.
And that's the point. Don't worry about "crushing his ego". Worry instead about how you would live with him injuring or killing someone when you or your mother *could* have prevented it.
> 2. How can you get someone evaluated -even get them to the > appointment -without basically shaming them? I guess the doctor is > going to have to ask him some pretty leading questions...Dad will > figure it out pretty quickly he is still very sharp in some > departments. Talk to his doc. Have him come in for an eval of his meds for some other condition like his heart. Tell the doc in advance that you want to have him referred for a complete neurological and psychiatric evaluation by specialists (Medicare will pay for the tests but he'll need the referral). The specialists are usually much more well informed on diagnosis and treatment for dementias.
Pussyfooting around is NOT going to solve the problem. Denial is not a river in Egypt. He needs to be evaluated NOW so that he caan get the meds that will slow the progress of his dementia, which could be due to causes other than AD, including strokes, hypozia, thyroid problems, medication problems, or other reasons.
Do it, and soon, since every day he's on the road is a day that the lives of others are at risk.
Steve Crow - 16 Mar 2004 15:16 GMT Thanks everyone for all the wonderful feedback and support...I'll be seeing my Mom and Dad in a week for my birthday so I will have a chance to talk to Mom and get more insight into exactly what is going on. We will find a way to get him in to his doctor for the eval and then we'll take it step by step. Steve
hpspamlessjeannie@hp.com - 25 Mar 2004 06:02 GMT > Thanks everyone for all the wonderful feedback and support...I'll be > seeing my Mom and Dad in a week for my birthday so I will have a > chance to talk to Mom and get more insight into exactly what is going > on. We will find a way to get him in to his doctor for the eval and > then we'll take it step by step. Hi, Steve, how did it go?
I'm a few steps ahead of you in this, but it all sounds very familiar. My dad (age 89) has been having memory-loss problems for a while now, and his doctor "turned him in" to the DMV and his license was taken away March 10. Unfortunately my mom does not drive, so this has really thrown them for a loop. I drive them to appointments and errands, and they appealed the DMV revocation and (amazingly) got the DMV lady to say she would reconsider it if she got a new form from the doctor saying the Aricept he's on is working. I'm hoping she'll give Dad a driving test, he'll fail, and thus lose his license "fair and square." Mom kept saying that day that it was "the worst day of their lives" and she's not usually pessimistic--it was sad.
I'm taking them to the doctor tomorrow morning and today Mom told me my dad got up at midnight yesterday and fixed two bowls of cereal with strawberries. When she asked him (she was still up; he goes to bed early, she's a night owl) who they were for, he said they were for me. He does things like this a lot and she's starting to realize she can't tell him about things in advance because he anticipates and gets up and dressed at odd times.
She insists that his driving skills are still excellent; she just has to give him instructions on where to turn because he can't remember how to get to the grocery store they've been going to for 40 years. (Yikes.) Can AD and driving skill be separate, or is it inevitable that one day (if he gets his license back) he's going to forget that red lights mean 'stop'?
Oh, sorry to barge in without introduction. I'm in the western US, early 40's, husband and one teen child, and live about half an hour from my folks (they are about 15 minutes from where I work Mon-Wed). Mom is 81 and still very sharp, thank goodness. She hates it that they've "lost their independence" and have to rely on me to drive them places. I have no problem with it but she sure does. :) Meanwhile we're working on her internet skills, showing her how to order books from Amazon and groceries from a local store that does web delivery.
Best to all, Jeannie
Des - 25 Mar 2004 07:15 GMT <snipped>
>Oh, sorry to barge in without introduction. I'm in the western US, >early 40's, husband and one teen child, and live about half an hour [quoted text clipped - 4 lines] >we're working on her internet skills, showing her how to order books >from Amazon and groceries from a local store that does web delivery. Hi, Jeannie,
Gee, are we all going to have to go through this? Two of my friends also have parents in early to mid-stage AD.
I lost my mom last week, due to complications of dementia, which, I understand, is usually how it goes. The main thing I want to mention is how quickly it all seemed to go downhill. Dad and I couldn't quite seem to keep up with it; as soon as we had one sort of support system in place, which we thought would stabilize her (and us), something else was needed.
It's possible that your dad, at his age, will change from week to week. I sure hope he doesn't get his license back.
Take care of yourself in all of this... and keep reading this group. It's been more help to me than anything else.
~Des
~AKA Queenie, rhymes with Jeannie... ;-)
hpspamlessjeannie@hp.com - 26 Mar 2004 04:10 GMT > Hi, Jeannie, Hi, Des! <waves>
I'm so sorry about your mom, and thanks for the warning about how quickly things can go downhill. This group is really helping prepare me for what my mom and I may be about to go through. (I've been lurking for a week or so.)
> It's possible that your dad, at his age, will change from week to > week. I sure hope he doesn't get his license back. Me too, actually...I just want him to fail the test fair and square so he and Mom can "get closure" on this and move on to planning for the future.
> Take care of yourself in all of this... and keep reading this group. > It's been more help to me than anything else. Thanks, I can see that this is truly a support group in every sense of the word.
> ~Des > > ~AKA Queenie, rhymes with Jeannie... ;-) So which of us is the evil twin here? ;)
Jeannie
Beth - 26 Mar 2004 05:20 GMT Oh Jeannie,
>...I just want him to fail the test fair and square so he and Mom can "get closure" on this and move on to planning for the future.<
This is really a hard thing because as you're probably figuring out it's often such a major "first" hurdle. I don't have any real ideas to add on how you're handling it. My MIL gave up driving voluntarily when knowing she'd have to pass the written test in a few months-she became unable to extricate herself from the seatbelt once home. Not knowing what to do, she backed out of the driveway, drove across the front lawn and honked the horn to her sleeping son and the whole neighborhood came out. She did have a ready alternative and I think that helped. She decided to give the car to her son and have him drive her when needed. And that worked for her (and us!).
I hope your Dad is early enough that he does get closure. But I warn you not to be surprised if that official decision does not result in closure for him. It will for you and your Mom. But he may conveniently "forget" and still drive. Better think about disabling the car (disconnecting the wires or filing down all the keys he has access to have been suggested by others).
And a word of advice from someone who's been down your road....don't get hung up on making him either understand or agree with the decisions needed. The reasoner is breaking and he most likely will be absolutely unable to acknowledge his deficits-even when confronted. This is a hard transition to make with a parent. But you figure it out eventually either earlier or later. Save yourself lots of grief, by not getting drawn into trying to reason with him. Because you can't alter his thinking when he's always been so right.
Best wishes. Another Beth-in Maryland.
Evelyn Ruut - 26 Mar 2004 12:29 GMT > And a word of advice from someone who's been down your road....don't get > hung up on making him either understand or agree with the decisions needed. [quoted text clipped - 4 lines] > reason with him. Because you can't alter his thinking when he's always been > so right. Just wanted to highlight this paragraph above. I cannot be said often enough around here. Well said, Beth.
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hpjeannie - 30 Mar 2004 22:38 GMT > I hope your Dad is early enough that he does get closure. But I warn you > not to be surprised if that official decision does not result in closure for > him. It will for you and your Mom. But he may conveniently "forget" and > still drive. Better think about disabling the car (disconnecting the wires > or filing down all the keys he has access to have been suggested by others). Oh, I'll take the keys...the car is always in the (locked) garage so they keep the doors unlocked, and if they need to get into the trunk there is a release inside the car.
I gently hinted to my mom about maybe selling the car, but she wanted to keep it in case I needed it. A nice thought, but we already have four vehicles...if all four are down and I need to drive, I'd rather rent something than drive their humongous Chevy!
They also have a little truck but the battery is dead most of the time. If it ever needs to be started (to haul stuff, I guess), neither of them knows how to jump-start (Dad used to know but doesn't anymore) so they're still dependent on me for that. <evil grin>
> And a word of advice from someone who's been down your road....don't get > hung up on making him either understand or agree with the decisions needed. [quoted text clipped - 4 lines] > reason with him. Because you can't alter his thinking when he's always been > so right. Thank you so much, Beth--you really do have experience in this, I can tell, and your dad must have been a lot like mine. He was *never* wrong! Fortunately he seems to be pretty good-humored about forgetting things, and he takes "orders" from me better than from Mom so I can be the "heavy" when it's required. Humor is a big help here--if he wants to know why something has to happen, I just puff myself up and say "Because I said so!" or "Because it's Tuesday!" just like he used to. :) So far it's always made him laugh and he then goes along. We're discovering that distraction works well too.
Jeannie
Tumbleweed - 25 Mar 2004 08:55 GMT <snip>
> She insists that his driving skills are still excellent; she just has > to give him instructions on where to turn because he can't remember > how to get to the grocery store they've been going to for 40 years. > (Yikes.) Can AD and driving skill be separate, or is it inevitable > that one day (if he gets his license back) he's going to forget that > red lights mean 'stop'? IME its more likely he wont know what to do in case of an emergency, or he'll just do something completely stupid like drive onto a freeway the wrong way. In my fathers case it was suddenly veering onto the centre (gravelled) of a major road for no apparent reason, then veering back again, then insisting he hadnt done anything wrong, and then not remembering it all all the following day.
Can you persuade your mother that on the money they are saving by not using a car, they can get taxi's? That helped (slightly) with my dad, but wouldnt work financially for everyone, depends where you live.
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Songbird - 25 Mar 2004 14:55 GMT > IME its more likely he wont know what to do in case of an emergency, or > he'll just do something completely stupid like drive onto a freeway the > wrong way. Last September my brother was driving my dad and mom to a family wedding (five hour trip) in their van. Both brother and I were surprised Dad would let him drive the whole way ("it's my car, I drive") but were quite glad he was when accident debris caused a blowout on the interstate. My brother's usual car is a fire engine, so he had no trouble controlling the large van and getting safely off the road. Then my dad started unloading the cargo area (which had not only their luggage but power tools he was bringing to me "I can't see to use them") to get to the spare. Meanwhile, my brother is asking "Are you sure the spare isn't in the undercarriage?" My dad insisted no and kept unloading. You guessed it -- it was in the undercarriage. So brother pulls it out and the jack. Dad can't figure out how to 1) assemble the jack or 2) how to use it once assembled. Good thing brother was there!
And yes, they do have AAA -- but he couldn't remember then if they did or not, and anyway, they don't have a cell phone.
So it looks like I am facing same problem sooner than I anticipated. I tried to dismiss this as understandable, since I am fairly clueless about jacks myself. But other changes (I'll post to vent elsewhere) are moving this to the forefront.
Songbird
hpspamlessjeannie@hp.com - 26 Mar 2004 04:31 GMT > You guessed it -- it was in the undercarriage. So > brother pulls it out and the jack. Dad can't figure out how to 1) assemble > the jack or 2) how to use it once assembled. Good thing brother was there! Yes, we've already experienced this recently with the jack, filling a tank with a gas can (he didn't remember that you have to unscrew the cap and turn it around for the filler) and trying to jump-start a vehicle. Fortunately, after it became apparent he didn't know what he was doing, he didn't insist on going ahead and trying anyway. I wasn't there or I would have been able to help with all three things, being rather automotively inclined, but Mom didn't tell me about it until afterward.
> And yes, they do have AAA -- but he couldn't remember then if they did or > not, and anyway, they don't have a cell phone. A neighbor finally asked Mom if they had AAA. They don't, but it reminded her to check their insurance card which, sure enough, had a "road service" number on it. Success!
> So it looks like I am facing same problem sooner than I anticipated. I tried > to dismiss this as understandable, since I am fairly clueless about jacks > myself. But other changes (I'll post to vent elsewhere) are moving this to > the forefront. The jack part was painful for me because it was my dad who taught me to change a tire...in fact, I had to prove my knowledge by rotating all four of my car's tires in the driveway before I was allowed to drive anywhere by myself for the first time.
Jeannie
hpspamlessjeannie@hp.com - 26 Mar 2004 04:22 GMT > IME its more likely he wont know what to do in case of an emergency, or > he'll just do something completely stupid like drive onto a freeway the > wrong way. In my fathers case it was suddenly veering onto the centre > (gravelled) of a major road for no apparent reason, then veering back again, > then insisting he hadnt done anything wrong, and then not remembering it all > all the following day. That's definitely something to be afraid of, but it's hard to convince them of that danger when he has a perfect driving record and the insurance premiums say "good driver discount" all over them. :-/
> Can you persuade your mother that on the money they are saving by not using > a car, they can get taxi's? That helped (slightly) with my dad, but wouldnt > work financially for everyone, depends where you live. They're going to have to go taxi sometimes, but I can take them where they need to go most of the time...they live between me and work, and I work part-time so I'm already working on getting Mom used to making appointments & plans for "every other Thursday." They can afford taxis but they're Depression-era so they'll never get over paying $20 to go to the grocery store. :)
Selling the car is going to be a huge thing for them...they probably won't sell it due to either hoping for a "miracle cure" or saying "but maybe sometime you'll need an extra car...." I can really see my dad getting depressed if they sell the car; thank goodness they don't financially need to.
Jeannie
Evelyn Ruut - 25 Mar 2004 12:23 GMT I drive them to appointments and
> errands, and they appealed the DMV revocation and (amazingly) got the > DMV lady to say she would reconsider it if she got a new form from the > doctor saying the Aricept he's on is working.
> Best to all, > Jeannie Jeannie,
The Aricept only helps a tiny bit, it will not by any means in this world restore his ability to drive safely, and if it does it will only be for a short time. What if he forgets what a red light means and kills a young mother with children going through one? Yes it can happen.
Please try to understand that this is a horrible illness that robs a person of the function of their brain. It is progressive, meaning that it continues to get worse and worse and worse, till the person just lies there unable to even swallow anymore.
I am sorry to be so graphic and so scary, but I feel it is important that you understand that if you allow your father to drive your mom around he could quite easily kill them both and some other innocent person he meets on the road.
No matter what, if you Dad has been diagnosed with this illnes, then he ought to give up his license now. Life does hold many changes, and not being able to drive anymore is indeed a big one.
Remember that driving a car is a privilege..... not a guaranteed right to harm oneself and others with several thousand pounds of steel hurtling down a road. I surely wouldn't want to meet your father on the road, nor would you.
If you love him you will find a way to keep him from driving. Speak to the doctor again if you have to. Apparently the person at motor vehicle is ignorant of what Alzheimer's disease does to a person.
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Dennis P. Harris - 25 Mar 2004 13:21 GMT > She insists that his driving skills are still excellent; she just has > to give him instructions on where to turn because he can't remember > how to get to the grocery store they've been going to for 40 years. > (Yikes.) Can AD and driving skill be separate, or is it inevitable > that one day (if he gets his license back) he's going to forget that > red lights mean 'stop'? the problem is the unpredictability of this disease. it's almost a certainty that his reaction time is far too slow to be safe, and what happens when he forgets what to do in the middle of a turn in an intersection with a semi coming towards him? or if he hits the accelerator instead of the brake?
your parents need to get used to not driving, and start making accomodations immediately. for short errands like grocery shopping taxis work just fine, and in most communities will cost then than the expenses of operating their own car, especially insurance and fuel costs. for scheduled trips like doctor visits, most communities have paratransit agencies for folks with disabilities that provide van service at low cost.
hpspamlessjeannie@hp.com - 26 Mar 2004 04:35 GMT > your parents need to get used to not driving, and start making > accomodations immediately. We're already working on that--it's going quite well, in fact!
> for scheduled trips like doctor > visits, most communities have paratransit agencies for folks with > disabilities that provide van service at low cost. Their community has that, but you have to pass some pretty rigorous tests in order to qualify--basically you have to practically not be able to walk, and Dad is still pretty mobile.
Jeannie
Tumbleweed - 26 Mar 2004 09:16 GMT > > your parents need to get used to not driving, and start making > > accomodations immediately. [quoted text clipped - 10 lines] > > Jeannie Have you talked to them about mental incapacity? That seems like a pretty rigid set of criteria if its just physical? My father would at one stage insist on going out every day but he would also get lost just about every day, there is no way he could have got to specific places such as a doctors, at the end he couldnt even find the post box, which was 100 yards straight up the road, on the same side as his house with no other roads to cross, but he'd still insist on going out to post letters and if my mother didnt go with him he'd get lost and come back 2 hours later.
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hpjeannie - 30 Mar 2004 23:00 GMT > > dpharris@gci.net (Dennis P. Harris) wrote in message > news:<86j560pkf820b2bmhs027sfuv3qlcn2tuh@4ax.com>... [quoted text clipped - 17 lines] > he'd still insist on going out to post letters and if my mother didnt go > with him he'd get lost and come back 2 hours later. I can see that happening...in fact, they have a pretty close-knit community and there are neighbors all the way around the block who know who he is and that he goes for walks (dr. recommended), sometimes with Mom and sometimes without. They look out for him and would steer him back home if necessary.
The valley transit authority runs the paratransit outreach organization, and they specifically state that the user must be unable to use the bus/light rail. The folks have a bus stop up the street from them, but of course (along with most of the other VTA stuff in the Bay Area) it does a very good job of not going where anyone needs it to go.
Jeannie
Tumbleweed - 31 Mar 2004 07:06 GMT > > > dpharris@gci.net (Dennis P. Harris) wrote in message > > news:<86j560pkf820b2bmhs027sfuv3qlcn2tuh@4ax.com>... [quoted text clipped - 27 lines] > organization, and they specifically state that the user must be unable > to use the bus/light rail. In which case I'd have thought that mental incapacity to use a bus would count just as much as physical, maybe it just needs pointing out to them?
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Des - 31 Mar 2004 07:17 GMT >In which case I'd have thought that mental incapacity to use a bus would >count just as much as physical, maybe it just needs pointing out to them? Here's a quote from the rules in Monterey, CA:
"Eligibility is based on one or more of the following criteria as mandated by Federal law, the Americans with Disabilities Act, (The ADA). Category 1: Inability of individual to independently use the fixed route bus system."
We got my mom signed up. All you need is a doc's signature on the application.
~Des
Dennis P. Harris - 31 Mar 2004 07:19 GMT > The valley transit authority runs the paratransit outreach > organization, and they specifically state that the user must be unable > to use the bus/light rail. The folks have a bus stop up the street > from them, but of course (along with most of the other VTA stuff in > the Bay Area) it does a very good job of not going where anyone needs > it to go. someone with a dementia is unable to use the bus: can't find the stop, gets lost, can't deal with time, can't remember which bus, where to get off, etc. have his doc tell them that he qualifies because he has memory problems that prevent him using the bus system. best of all, paratransit usually delivers them door to door.
hpspamlessjeannie@hp.com - 02 Apr 2004 03:25 GMT > someone with a dementia is unable to use the bus: can't find the > stop, gets lost, can't deal with time, can't remember which bus, > where to get off, etc. have his doc tell them that he qualifies > because he has memory problems that prevent him using the bus > system. best of all, paratransit usually delivers them door to > door. Yes, that is great, but Mom is still able to use the bus system and she goes everywhere with him, so he is not yet "unable" to use the bus. It would be "nice" if she could stay home and he could use paratransit to go to appointments, but she would worry the whole time and besides she wants to be there anyway.
So for the time being we're using me, taxis, and the (one) local bus that goes to their eye doctor. It's working well!
Jeannie
Mary Gordon - 25 Mar 2004 17:06 GMT I dunno about where you are, but here in Ontario, if you want to keep driving after you've been reported by your doctor, you have to redo both written and road tests. The prospect of a written test was enough to kill the idea for my MIL when she got her letter from the Ministry of Transporation - they told her she had X amont of time to redo her test or her license would be yanked, and that was the end of that. My husband actually went and got a rule book for her to study from, but there was no way she could have passed.
The thing for you to consider is that driving involves a lot of skills. AD affects emotional control, memory, depth perception, judgement, reasoning, and muscular coordination etc.. So even if your dad just seems forgetful to you, keep in mind that all this other stuff is brewing, so you really don't want him driving. Its not just about getting lost and needing your mom to be the decision maker for where to go - its about knowing what to do in an emergency and being able to make fast, accurate decisions. Don't encourage him to get his license back - because he really shouldn't be behind the wheel, and if he does get it back, you'll be in the position of taking it away again in a few months.
Your dad is as good as he's going to be, and sad to say, its a drift downhill from here. Aricept doesn't reverse or even stop the decline - it just slows it down in many people for a while.
It really is time to discuss moving your parents to a location where they are not car dependent - your mother needs to be in a position to be as independent as possible (i.e. with life as convenient and simple as it can be made in every way) because your father is going to be very, very difficult to care for with time if they are living in a place where she is isolated without a vehicle and dependent on others for everything. She should be living in a location where she can walk to shops or where there is excellent transit and taxi service - plus as close as possible to family support and help.
Mary G.
Jeannie wrote:
> I'm a few steps ahead of you in this, but it all sounds very familiar. > My dad (age 89) has been having memory-loss problems for a while now, [quoted text clipped - 34 lines] > Best to all, > Jeannie hpspamlessjeannie@hp.com - 26 Mar 2004 04:51 GMT > I dunno about where you are, but here in Ontario, if you want to keep > driving after you've been reported by your doctor, you have to redo > both written and road tests. Oooh, I hope they do that here...I'm almost certain Dad couldn't pass a written test.
> The thing for you to consider is that driving involves a lot of > skills. AD affects emotional control, memory, depth perception, [quoted text clipped - 7 lines] > he does get it back, you'll be in the position of taking it away again > in a few months. I don't want to encourage the license thing; I just have to walk a fine line between supporting my parents and agreeing with the doctors and the law. I'm helping Mom and Dad do the things they feel necessary (DMV hearing, doctor retest, being available for transport to/from everywhere) but I'm hoping he'll be denied.
The worst part of the license being revoked was the shock. The initial doctor's report said that he "may need to be tested" but the actual boxes he filled in on the form sent up red flags at the DMV, thus the revocation. I'm hoping I'm just helping to steer to a gentler but no different conclusion.
> It really is time to discuss moving your parents to a location where > they are not car dependent - your mother needs to be in a position to [quoted text clipped - 5 lines] > to shops or where there is excellent transit and taxi service - plus > as close as possible to family support and help. Gee, what a wonderful world that would be, Mary! Unfortunately, this is impossible for so many reasons I don't even know where to start, but thanks.
Jeannie
Tumbleweed - 26 Mar 2004 09:11 GMT > > I dunno about where you are, but here in Ontario, if you want to keep > > driving after you've been reported by your doctor, you have to redo [quoted text clipped - 42 lines] > > Jeannie So whats going to happen, probably reasonably soon, lets say within the next 1-3 years, when your father *definitely* can't drive, and your mother can't cope 24x7 with your father, or perhaps cant cope at all? Will they be able to live where they are now, and if not where will they move to? Will you just say "oh too bad its impossible she'll just have to put up with it" ? Or will that 'impossibility' suddenly dissappear?
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Jb - 26 Mar 2004 19:08 GMT > > I dunno about where you are, but here in Ontario, if you want to keep > > driving after you've been reported by your doctor, you have to redo [quoted text clipped - 20 lines] > necessary (DMV hearing, doctor retest, being available for transport > to/from everywhere) but I'm hoping he'll be denied. Elizabeth, my mother, died from AD in 2001 @ 82 years of age. November 10th, to be precise. 7 months previous to that, she had been driving until she had her third accident _ the final blow to he driving access. Dad, 81, discussed with myself and my sisters how to go about taking the car away, and we hit upon the idea of simply saying that the car had been totaled. It hadn't, but was in poor shape to say the least. My Wife Debbie took up the chore of driving her to all of her stores, shops, etc. twice a week from that point.
Within the next three to four months she (my mother) went straight downhill. First it was Daycare, then she was hospitalised for diverticulitus, then she went straight to a hospice.
There was nothing left to do at that point.
The point to my little diatribe is that you have ~NO~ idea how much time you have left with your father - as cold as that may sound. He ~could~ be the cause of a fatal car accident the next time he gets behind the wheel - or it may never happen. The thing to do is to get the keys ~now~, before an accident occurs.
We were very fortunate that no fatalities occurred in all three instances. I keep thinking that if we had taken the keys (and car) away earlier - nobody would have had to be hurt.
This disease is not only deadly, but insidious. A person can last up to 10 or 12 years, I've heard told. Then again - it can strike a person down within a matter of a relatively short period of time - 6 to 8 months...
Looking back, I'm sorry that we hadn't taken the keys sooner..........
> The worst part of the license being revoked was the shock. The > initial doctor's report said that he "may need to be tested" but the > actual boxes he filled in on the form sent up red flags at the DMV, > thus the revocation. I'm hoping I'm just helping to steer to a > gentler but no different conclusion. We simply told Mom that the car was totaled and that Dad couldn't afford another car. She grumbled about it for a while - thenfocused on other things. It's hard, I know, but for the sake of your Dad - and others _ it's probably one of the best things you can do.
In your case I might reccommend saying that the car had _____________. Use your imagination, I guess.
> > It really is time to discuss moving your parents to a location where > > they are not car dependent - your mother needs to be in a position to [quoted text clipped - 11 lines] > > Jeannie Again, my thanks go out to all that were here when Mom passed - conversing with people such as Evelyn, Mary, Phil, et.al was a great help, and a blessing.
I hope I don't seem cold, but I've had 2 and 1/2 years to think about this. Hindsight is ~always~ 20/20.
I wish you ~all~ the best.
Jack Barber
Mary Gordon - 27 Mar 2004 01:42 GMT Jeanie wrote:
> Gee, what a wonderful world that would be, Mary! Unfortunately, this > is impossible for so many reasons I don't even know where to start, > but thanks. Mary responds: I've been thinking about you and your situation, and I have a couple of suggestions - and keep in mind, I have been in your shoes - when my MIL was diagnosed, our first child was a baby, and we had three young kids by the time she died.
First is to make sure your father has been appropriately assessed and diagnosed, not just by the family doctor, but by a specialist (usually a neurologist or geriatric psychiatrist). A proper work up should include an assessment of his deficits. This exercise is useful on several fronts in terms of helping you get a grip on what the real situation and prognosis is - and it can be quite an eye opener in terms of being realistic about how impaired he may be (quite frequently they are much, much more impaired than is obvious to family members during every day interactions). A firm diagnosis can also help you get the right advice and support - ie, sitting down and talking turkey with a geriatric social worker to make sure your expectations and plans are realistic.
You would be well advised to get written permission from your parents to discuss things with their doctor, even now, before you need to invoke any powers of attorney. Your father may not recall or understand what he is told, and your mother may be in denial and not be able to "hear" the truth, even if its presented to her. You need to be able to speak to the doctor, confirm facts, ask questions etc. Your mother may be with it and healthy, but she is elderly, so that can change in a heartbeat.
You also do what you can to assure your parents finances and wills etc. are in order. You absolutely need someone responsible within the family to have durable powers of attorney for both financial and personal care decisions - for both your father AND your mother. Stuff happens. You will need to be able to deal with it - and your father may not be able to sign legal documents much longer, so having things in place is crucial.
Next is to start doing homework on alternative living arrangements. I know you feel its unthinkable, but the one thing about dementia is that things can change fast, and you need to have your plan ready to go. See whats suitable in your area, whether that might be a small house with a live in housekeeper, an apartment near you, a seniors complex - whatever. Find out whats out there, how much various ideas cost, what services are available, if there are restrictions on who can live in certain places, if there are waiting lists etc. Don't wait until your parents agree its an idea, since that day may never come. Build yourself a parachute now, before the ground starts hurtling up at you.
The way to look at this is that the 6:15 from Clarkson has left the station and is barrelling down the tracks toward you, with train whistle screaming. Don't say its impossible to get off the tracks - you WILL have to jump - and its up to you to try and figure out which way to jump, and if you have something to land on.
No matter what, if your father has Alzheimers, his driving days are going to be over - if not now, then shortly - and that will be the permanent end of that. No more driving, ever - which means a whole new reality. Its one thing to drive someone occasionally as you've been doing for a few weeks. Its another for them to be a distance from you and dependent on you to come drive them everywhere they need to go - for the rest of their lives. Your dad will get worse and worse, and require more and more care and supervision - and your mother will need more and more help and support. Thats not just doom and gloom - thats just reality. So, the upshot is that even if she loves where she lives, practicality is going to trump everything else, as you will not be able to adequately assist her if they are living where they are now. If your mother wants to maintain any degree of independence, she needs to be where there is transit or taxis, where help is close by, where amenities are at hand - and ideally, where she can WALK to some facilities (foot access to the library or the milk store can make a world of difference in quality of life and independence).
This period of their lives is coming to an end, irrespective of what you wish, or what they want - so even if they aren't ready to look ahead to what comes next, you need to.
Mary G.
Tumbleweed - 27 Mar 2004 08:09 GMT > Jeanie wrote: > > Gee, what a wonderful world that would be, Mary! Unfortunately, this [quoted text clipped - 76 lines] > you wish, or what they want - so even if they aren't ready to look > ahead to what comes next, you need to. Well said Mary. <Unfortunately> your train analogy is spot on :-(
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> Mary G. hpjeannie - 31 Mar 2004 01:37 GMT > I've been thinking about you and your situation, and I have a couple > of suggestions - and keep in mind, I have been in your shoes - when my > MIL was diagnosed, our first child was a baby, and we had three young > kids by the time she died. Wow, you had a full plate! I'm really glad I have an only child and she's already in her teens...with what I see on the road ahead I would really have a hard time with little ones. Thank goodness for family planning.
> First is to make sure your father has been appropriately assessed and > diagnosed, not just by the family doctor, but by a specialist (usually > a neurologist or geriatric psychiatrist). Check.
> A proper work up should > include an assessment of his deficits. This exercise is useful on [quoted text clipped - 3 lines] > frequently they are much, much more impaired than is obvious to family > members during every day interactions). Check...we have a printout of the testing and it helped Mom understand much more. She also learned not to joke with the doctor; "I don't let him in the kitchen" was understood to mean "he's not safe in the kitchen," not the true meaning which was "he makes a mess when he cooks and doesn't clean it up to my high standards." :)
> A firm diagnosis can also help > you get the right advice and support - ie, sitting down and talking > turkey with a geriatric social worker to make sure your expectations > and plans are realistic. May be a tad early for that (Mom has the finances, etc. well in hand), but I'll look up local references and have them handy just in case. A sticking point may be that to my Depression-era, pull-up-by-bootstraps parents, any sort of "social worker" carries the stigma of "you can't handle it yourself and have to rely on the welfare of others." I'm sure lots of you out there recognize this.
> You would be well advised to get written permission from your parents > to discuss things with their doctor, even now, before you need to > invoke any powers of attorney. I have a medical POA (not the right term), am on their safe deposit box list, am about to be on their bank account, and the doctor knows who I am, so we're most of the way there. We've talked about my getting onto their bank account but Mom is still very sharp and financially "with it" (she does the taxes and pays the bills).
> Your father may not recall or > understand what he is told, and your mother may be in denial and not > be able to "hear" the truth, even if its presented to her. You need to > be able to speak to the doctor, confirm facts, ask questions etc. Your > mother may be with it and healthy, but she is elderly, so that can > change in a heartbeat. Yes, this is why I'm glad to take them to appointments, so I can hear what's going on too. Mom is certainly having a bit of a denial problem, but anytime I get wind of it I keep asking her questions until she has to admit to herself that the situations is worse than she's willing to admit.
> You also do what you can to assure your parents finances and wills > etc. are in order. You absolutely need someone responsible within the [quoted text clipped - 3 lines] > may not be able to sign legal documents much longer, so having things > in place is crucial. Excellent point. Thank you. I should think harder (and sooner) about what do to if something happens to Mom. Probably live-in 24-hour care, which they can afford.
> Next is to start doing homework on alternative living arrangements. I > know you feel its unthinkable, but the one thing about dementia is [quoted text clipped - 7 lines] > come. Build yourself a parachute now, before the ground starts > hurtling up at you. Yup, that 24-hour care research is looking better and better. Moving him out of the neighborhood would really throw him for a loop. Gotta get on their bank account. Maybe research reversible mortgages, since theirs is paid off.
My mom is getting pretty internet-adept, with help (emailed URLs) from me. They're taking the bus (schedule was online, to her utter amazement :) to the eye doctor on Friday, but their regular doctor, neurologist, hairdresser, grocery store are not on the route. I'm working on getting her to do a "test order" of groceries from Albertson's, but she's so used to their regular store that she has trouble fathoming that her same favorite brands might be found elsewhere. :)
Another help is that they really are homebodies and didn't drive more than two days a week anyway...I kept urging them to go on outings to the museum, zoo, etc. but their stay-at-home-ness was really a blessing in disguise.
Thanks, Jeannie
Dennis P. Harris - 31 Mar 2004 07:21 GMT > I have a medical POA (not the right term), am on their safe deposit > box list, am about to be on their bank account, and the doctor knows > who I am, so we're most of the way there. We've talked about my > getting onto their bank account but Mom is still very sharp and > financially "with it" (she does the taxes and pays the bills). you still need a durable power of attorney for business affairs from *both* of them! and they should probably do a secondary one for someone else in case you are unable to fulfill the duties, too.
the reason you need one now? because if anything happens to your mother, it will be hell dealing with banks, etc.
hpjeannie - 01 Apr 2004 03:04 GMT > you still need a durable power of attorney for business affairs > from *both* of them! and they should probably do a secondary one [quoted text clipped - 3 lines] > the reason you need one now? because if anything happens to your > mother, it will be hell dealing with banks, etc. Excellent advice; thanks. Where does one obtain a POA form? They do not have a regular lawyer that I know of, and even if they do I know they'll balk at having to pay $$$ just for some generic form.
I'll Google for it...if it's findable, I'll find it!
Thanks again, Jeannie
Dennis P. Harris - 01 Apr 2004 09:44 GMT > Excellent advice; thanks. Where does one obtain a POA form? They do > not have a regular lawyer that I know of, and even if they do I know > they'll balk at having to pay $$$ just for some generic form. you don't say which state you are in, and the forms can vary from state to stste. in many states there is a statutory durable power of attorney form, actually passed as law by your legislature.
many states also have statutory living wills, so that your mother can make written decisions when she's healthy about end of life care decisions like feeding tubes and do not resuscitate orders and ensure that her wishes will be carried out.
your state's official website probably has the state statutes on line, and most state statute sites are well indexed. just go to the state statute web site and search for "durable power of attorney".
Mary Gordon - 31 Mar 2004 18:31 GMT Jeanne, Dennis is right - no matter how healthy and with it your mother is, get a power of attorney for both of them ASAP so you have it ready to go - with the prayer that you won't need it for years to come.
Its not like anyone gets up in the morning and say looks like a good day to have a stroke or a heart attack, or slip on the sidewalk. Your mother is like an egg balanced on end. She may not be wobbling, but she's vunerable, and you need to be able to take care of her affairs and your fathers if (god forbid) she was incapacitated, even temporarily.
A friend's mother had a stroke and ended up in a long coma, and they had no power of attorney and had to go to court to be able to do the most basic of things like pay her bills - and it was horrible - expensive, unpleasant, drawn out etc.
Mary G.
hpjeannie - 01 Apr 2004 03:17 GMT Hah, found 'em easy...and free.
http://www.familycaregiversonline.com/legal-medical.html
Jeannie
Mary Gordon - 16 Mar 2004 10:40 GMT Steve, just to reinforce with you how vital it is to get the person to the doctor is this list I've pasted below of a number of other things that can cause memory loss and cognitive impairment. Don't assume at this point its AD. Just be alarmed that he is displaying symptoms and get him to the doctor. It could be something else, and it does need to be checked out - you would never forgive yourself if it later was found to be something treatable like a thyroid problem or a B12 issue, and diagnosis was delayed because you didn't want to upset him by insisting he get medical help.
Just to give you an example, a coworker of mines dad was really experiencing some memory issues - very confused - couldn't remember his adult childrens names, would forget they didn't live at home etc. From his description, I thought it was AD, but it turned out to be hypoxia. He was experiencing periods of low oxygen levels from a medical problem, and it was affecting his mind.
Its always worth finding out. After all, if your dad was 45 instead of 71, your mother would be freaking out and would have already dragged him off to the doctor. Its not normal, and you can't know what can be done about it unless you have a proper examination and diagnosis. If he was having chest pains, and was balking about the doctor because he didn't want to be told he had a heart problem, you'd have found your spine on the issue PDQ, and this should be no different.
If he does have AD, the drugs that can slow down the progress do the most for the person in the early stages, when they have the most to preserve - i.e. that is the stage when you really do want to buy them more time.
Mary G.
Differential Diagnosis (and these are just the biggies, there are tons of other things that can cause apparent mental issues).
Differential Diagnosis Of Dementia Degenerative
Alzheimer's Disease Parkinson's Disease Dementia with Lewy Bodies Progressive Supranuclear Palsy Multiple System Atrophy Huntington's Disease Pick's Disease Frontotemporal (chromosome 17) Dementia Corticobasal Ganglionic Degeneration The Parkinsonian Dementia Complex of Guam Dementia Lacking Distinctive Histological Features
Vascular
Multiple Infarction Dementia Strategic Infarction Dementia Lacunar State Binswanger's Disease (Subcortical Ischemic Encephalopathy) Vasculitis Subarachnoid Hemorrhage
Infection
Fungal Meningitis Syphilis AIDS Dementia Creutzfeldt-Jacob Disease (and other Prion diseases) Post Herpes Simplex Encephalitis
Psychiatric
Depression Alcohol abuse Drug use or abuse Personality Disorder Anxiety Disorder
Toxic/Metabolic
B12 deficiency Thyroid deficiency System failure including liver, renal, cardiac, respiratory Heavy metal toxicity Toxin exposure e.g. glue sniffing Medication side effects or interactions
Trauma
Subdural hematoma Closed head injury Open head injury Pugilistic brain injury Anoxic brain injury
Tumor
Glioblastoma Lymphoma Metastatic tumor
Other
Symptomatic Hydrocephalus (Normal Pressure Hydrocephalus)
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