Dementia Question

[brehon]

Good Morning!

 

Could anyone direct me to some good on-line medical sites which deal with dementia in the elderly? The information should be understandable for a non-medical person. My dear grandfather has many of the signs of late Stage 2 dementia (not Alzheimer's) and, unfortunately, my dad, his brothers, and his sister refuse to recognize that anything is wrong. I haven't decided whether this is because of denial, not understanding what dementia is, or some combination of the two. I rather suspect that some combination of the two is at play here. I'd like to be able to either send them some links or the info directly via e-mail.

 

And does anyone have any advice for a granddaughter (me) who does recognize these signs/symptoms and is frustrated by the lack of response from my dad, uncles, and aunt? Thank you very much for your help.

[dirty ethel rackham]

I don't have any advice for you other than a review of this person's medications is in order. I have had many relatives heading down the road of dementia and, after an adjustment of the medications (eliminating some that have little theraputic benefit, adjusting doses, eliminating interaction issues), we noticed significant improvement. As far as dealing with family members in denial, I wish I had some wisdom for you.

[brehon]

Thank you for your reply. I thought about medication adjustment; unfortunately, I don't think this is a realistic option *for me* to do for several reasons. I've mentioned this issue to my dad, grandparents, and others and met with more denial. "No, you don't understand. Dr. XXX has been their {our} doctor for many years and he would never overmedicate." <Sigh> I keep trying to come up with constructive, positive ways to help these members of my family deal with this. I've yet to be very successful. Thanks again.

[Harriet Vane]

I am not aware of any sites (though I am sure there are good ones out there).

 

I did just want to offer :grouphug: and tell you I am walking this road with you.

 

I have spent the last 11-12 YEARS having these hard, hard conversations with my relatives about my grandmother, and all of those years have been filled with increasing worry and stress as her condition declines both physically and mentally.

 

Just this past Christmas my relatives insisted that my grandmother's driving is "just fine." There was no reasoning with them. However, my grandmother has had numerous minor accidents in the last fifteen years. In the last six weeks she caused a big accident (no one was hurt but two cars were totaled) and in a separate incident was pulled over for reckless driving. Apparently her driving was so erratic the police had multiple calls about it, and one motorist followed her until the cops came. Thankfully her license has been revoked, and the incident finally woke up my mother to the need to STOP Grandma's driving.

 

I have never, ever been rude or pushy on this topic, but have consistently come up against a stiff wall of denial and resistance from my relatives. Often, no matter how sweet and reasonable I was/am, they end up angry with me. They just cannot face the truth.

 

I am sorry it's hard. I pray the path is easier for you than it has been for me.

 

:grouphug::grouphug::grouphug:

[Impish]

I'm not sure of any sites off hand. But, :grouphug: from someone in a similar position. I'm a DIL of the only child. Both my dh and I see signs a mile off that MIL is having issues, but despite the fact that her sister is in a locked ward with dementia/Alzheimers, (which puts her potential for having dementia/Alzheimers waaaaaaaaay up) her sibs are insisting that she's just fine. Since she lives in another province, the only thing we could do was try and encourage her to move here, be closer to us. No go. Legally, there's absolutely nothing we can do, despite my dh being her only child, since she lives in another province. Thing of it is too, that if it gets to the point that she suddenly gets on the radar there, and gets taken into care, there's absolutely NOTHING we can do, because our province, like every other, is overloaded, so they're not going to make room for someone that's already safe and being taken care of.

 

Sorry to go off in your thread. Just rest assured, I can totally empathize with your situation. Problem is, nobody thanks the bell ringer in this issue. I know that there's been plenty of talking behind my back, about me putting my dh up to this, trying to get ahold of MIL money (like she has any *snort*) etc. Nobody wants to believe that a loved one has dementia.

[brehon]

I am not aware of any sites (though I am sure there are good ones out there).

 

I did just want to offer :grouphug: and tell you I am walking this road with you.

I have spent the last 11-12 YEARS having these hard, hard conversations with my relatives about my grandmother, and all of those years have been filled with increasing worry and stress as her condition declines both physically and mentally.

 

Oh, my. I'm so very sorry to hear that. How utterly frustrating for you! My grandfather's decline, while obvious to *me* for the past 3 or so years, has been gradual enough that my family members can't/won't see it.

 

Just this past Christmas my relatives insisted that my grandmother's driving is "just fine." There was no reasoning with them. However, my grandmother has had numerous minor accidents in the last fifteen years. In the last six weeks she caused a big accident (no one was hurt but two cars were totaled) and in a separate incident was pulled over for reckless driving. Apparently her driving was so erratic the police had multiple calls about it, and one motorist followed her until the cops came. Thankfully her license has been revoked, and the incident finally woke up my mother to the need to STOP Grandma's driving.

 

I hear you on the driving. My grandfather still drives and he really shouldn't. I don't think his driving is erratic (based on what people who have ridden with him recently have said); however, he freezes when faced with decisions. Even "easy" ones like 'which exit should I take to get to the golf course (I've been going to for over 30 years)?' and 'how do I open the car door?'

 

I have never, ever been rude or pushy on this topic, but have consistently come up against a stiff wall of denial and resistance from my relatives. Often, no matter how sweet and reasonable I was/am, they end up angry with me. They just cannot face the truth.

 

Yes, this is what I too am up against. I know it's hard for my dad and his sibs to see their once dynamic parents age like this (it's hard for me, too). I simply don't understand the refusal to even think about this.

 

I am sorry it's hard. I pray the path is easier for you than it has been for me.

 

:grouphug::grouphug::grouphug:

 

Just the other day he spent 4 hours at the PX buying milk. He came home with bags of groceries he and my grandmother didn't need; but, completely forgot the milk. And he had what he needed written down, but forgot he had the list in his pocket. It's little things like this which really add up. Thank you for your hugs and I hope your family wakes up soon. Thanks for your reply. I know I'm not the only one dealing with this...sometimes it just feels like I am.

 

:grouphug::grouphug: to you as well.

[dirty ethel rackham]

Doctors rarely intentionally overmedicate. However, most good doctors do recommend doing a "brown bag" check periodically - that is, bring in every medicine (prescribed and OTC) being taken and evaluate. Doctors may not know EVERY drug interaction. Also, if a person is seeing one or more doctors (often specialists for this or that), the right hand doesn't always know what the left hand is doing. Also, if multiple pharmacies are used (mail order for long term prescriptions, but neighborhood drug store for short term), these interactions may not be caught. Also, I don't know if there really has been good testing on the cocktail of medicines being taken by many seniors today. Here is link that might be helpful: http://www.psa.state.pa.us/psa/lib/psa/tips_for_consumers/medication_errors_2_page_article_1108.pdf

 

Asking questions of the doctor and relaying new symptoms is not questioning the doctor's capability, but it is being a good partner in ones medical care.

[GraceinMD]

 

Could anyone direct me to some good on-line medical sites which deal with dementia in the elderly? The information should be understandable for a non-medical person. My dear grandfather has many of the signs of late Stage 2 dementia (not Alzheimer's)

 

I'm so sorry you're going through this - it's a difficult road you and your family have ahead of you.

 

I'm a doctor who has a practice limited to geriatrics, and most of my patients have dementia. There is a lot of info "out there," but you might find some clear info (written at different levels) here:

http://www.nia.nih.gov/Alzheimers/AlzheimersInformation/GeneralInfo/

(There is info about dementias other than Alzheimer's on this site - your relative may have "multi-infarct dementia" which is more commonly (now) known as vascular dementia.)

 

As far as what YOU can do, I think that if I received a note from a grandchild (or another relative who does not have power of attorney) detailing (briefly!) their concerns, I would be inclined to read it and act on it. I'm assuming that your g'father has regular appts with his doc? (I say a note, because you might not make much progress if you try to call.)

 

Things the doc might want to do:

Medication review

Vision/hearing tests

Mini mental state exam

Nutrition eval

Social work eval (for need for outside help)

Lab work

Driving test

 

HTH - best wishes. Feel free to ask if you have other questions.

[brehon]

Doctors rarely intentionally overmedicate. However, most good doctors do recommend doing a "brown bag" check periodically - that is, bring in every medicine (prescribed and OTC) being taken and evaluate. Doctors may not know EVERY drug interaction. Also, if a person is seeing one or more doctors (often specialists for this or that), the right hand doesn't always know what the left hand is doing. Also, if multiple pharmacies are used (mail order for long term prescriptions, but neighborhood drug store for short term), these interactions may not be caught. Also, I don't know if there really has been good testing on the cocktail of medicines being taken by many seniors today. Here is link that might be helpful: http://www.psa.state.pa.us/psa/lib/psa/tips_for_consumers/medication_errors_2_page_article_1108.pdf

 

Asking questions of the doctor and relaying new symptoms is not questioning the doctor's capability, but it is being a good partner in ones medical care.

 

You are so right! I didn't mean to imply that their doc intentionally overmedicated. I've just been concerned that maybe there were some med interactions happening which might be aggravating his condition. I completely agree with the bolded part - it's part of what I've been trying to tell my family.

 

I'm so sorry you're going through this - it's a difficult road you and your family have ahead of you.

 

I'm a doctor who has a practice limited to geriatrics, and most of my patients have dementia. There is a lot of info "out there," but you might find some clear info (written at different levels) here:

http://www.nia.nih.gov/Alzheimers/AlzheimersInformation/GeneralInfo/

(There is info about dementias other than Alzheimer's on this site - your relative may have "multi-infarct dementia" which is more commonly (now) known as vascular dementia.)

 

As far as what YOU can do, I think that if I received a note from a grandchild (or another relative who does not have power of attorney) detailing (briefly!) their concerns, I would be inclined to read it and act on it. I'm assuming that your g'father has regular appts with his doc? (I say a note, because you might not make much progress if you try to call.)

 

Things the doc might want to do:

Medication review

Vision/hearing tests

Mini mental state exam

Nutrition eval

Social work eval (for need for outside help)

Lab work

Driving test

 

HTH - best wishes. Feel free to ask if you have other questions.

 

Yes, he does have regular appointments with his doctor. He's actually very good about seeing his doctor. I'm not actually sure if his PCP knows all the medications my grandfather takes. I think he does; but, of course, I can't be sure. Thank you so much for your input. I've tried to convince my dad (who is the POA) that all the above should be done. Needless to say that suggestion was...unappreciated. I hadn't thought about writing his doctor. That's a good idea. Hmmm...

 

Grace, would you still be inclined to investigate further even if the patient and his wife (i.e my grandfather and grandmother) or another relative (like an adult child of the patient) really minimized any concerns/problems while in your office?

 

Thanks so very much, everyone, for the link and all the information. It's very heartening to hear that others are walking the same path. I mean, I know this intellectually; but hearing everyone's stories helps me keep remembering that there are others who are struggling, too. And Impish, I'm sorry to hear your MIL. It really seems that our various families are more of a "problem" than our affected relatives. :grouphug:

[Harriet Vane]

 

As far as what YOU can do, I think that if I received a note from a grandchild (or another relative who does not have power of attorney) detailing (briefly!) their concerns, I would be inclined to read it and act on it. I'm assuming that your g'father has regular appts with his doc? (I say a note, because you might not make much progress if you try to call.)

 

 

:iagree:

 

Brehon, I did actually do this about two years ago and found it very encouraging, though my relatives continued to resist. In my case, I was able to arrange to take Grandma to a dr's appt for arthritis problems. I then phoned the doctor and was (miraculously!) able to speak with him about an hour before the appt. I asked him not to reveal to my relatives that we had spoken, summarized my concerns briefly, and asked him to try to evaluate for dementia concerns. He was wonderful. There have been further appts since that one, and each time I have faxed him a one-page, bullet-point letter detailing concerns. I also gave copies to him of letters I wrote my family regarding my grandmother's medical needs. He has been very appreciative.

 

Here's the kicker: The doctor diagnosed dementia. He was emphatic about the diagnosis--it was very, very obvious to him. He prescribed medication. I put all this in writing to my relatives and gave them the doctor's contact information. Not one of my relatives ever called the doctor or attempted to speak with him. My grandmother's dementia scrip was never filled. I even made arrangements for my uncle (Grandma's son) to take his mother to a dr's appt and he refused to go in with her or talk to the doctor.

The bottom line:

 

--Definitely write a brief, factual letter to the dr detailing your concerns. Ask him to keep your letter totally confidential.

 

--If your relatives do not want to see the truth, they will refuse to see the truth. My dh and I have been flabbergasted at the level of denial in my family.

[Holly IN]

I didn't ready any replies. One thing that I have noticed about Dementia is their diets and lack of water. I would make sure that they are drinking the amount of water they need. Even my mom is not drinking enough water and she is already forgetting stuff. After hearing me talk about it with her (because she mentioned her SIL might have this) she decided to start drinking water.

 

I would like at diet and water then go from there. I would also look at this from the natural medicine point of view.

 

Holly

[GraceinMD]

Grace, would you still be inclined to investigate further even if the patient and his wife (i.e my grandfather and grandmother) or another relative (like an adult child of the patient) really minimized any concerns/problems while in your office?

 

Well, I think I would do more than just ... agree with them. For example, your grandfather may not have ever had a MMSE, if the doc only hears, "All is well." But if the doc had a note (or some inkling from another family member) that all was NOT well, despite your g'parents' protestations to the contrary, I would hope that (at minimum) he would say something like, "Well, when my patients hit 75 [whatever], I recommend these blood tests, and also do this short test of memory. So, what's the date today?....." In other words, your note might trigger the doc's thinking about the problem. [i always remember new patient who was youngish (early 70s), and I almost didn't do a MMSE because it was late on a Friday evening, and she was so "with it" - well-dressed, well-spoken - confused, but not terribly confused, etc. I did the test, and was shocked that she scored a 4 (30 is perfect; less than about 26 would indicate a problem)! Your g'father may well know how to "act" in the doctor's office and the problems may not be apparent THERE at all.)

 

Now, of course, a MMSE is not a diagnostic test, but if your grandfather scored even a little bit low, the doc would (hopefully) keep a closer eye on things, begin to think about adding a med for dementia, control lipids even more closely - something like that.

 

It is really common for family members to compensate for the patient's cognitive losses (even without realizing they're doing it), and it's also (of course) frightening to think that "Dad might be losing it," so the problem is quite easy to ignore. You might want to point out to your dad that there are strategies to HELP your grandfather (not necessarily meds; polypharmacy is a big problem in the elderly, as other posters have said) and that your goal isn't to "put him in a home," or something like that. It's best to try to figure out WHY your family wouldn't want to know if something is wrong, and try to address THAT issue in a reassuring manner.

[brehon]

Well, I think I would do more than just ... agree with them. For example, your grandfather may not have ever had a MMSE, if the doc only hears, "All is well." But if the doc had a note (or some inkling from another family member) that all was NOT well, despite your g'parents' protestations to the contrary, I would hope that (at minimum) he would say something like, "Well, when my patients hit 75 [whatever], I recommend these blood tests, and also do this short test of memory. So, what's the date today?....." In other words, your note might trigger the doc's thinking about the problem. [i always remember new patient who was youngish (early 70s), and I almost didn't do a MMSE because it was late on a Friday evening, and she was so "with it" - well-dressed, well-spoken - confused, but not terribly confused, etc. I did the test, and was shocked that she scored a 4 (30 is perfect; less than about 26 would indicate a problem)! Your g'father may well know how to "act" in the doctor's office and the problems may not be apparent THERE at all.)

 

Now, of course, a MMSE is not a diagnostic test, but if your grandfather scored even a little bit low, the doc would (hopefully) keep a closer eye on things, begin to think about adding a med for dementia, control lipids even more closely - something like that.

 

It is really common for family members to compensate for the patient's cognitive losses (even without realizing they're doing it), and it's also (of course) frightening to think that "Dad might be losing it," so the problem is quite easy to ignore. You might want to point out to your dad that there are strategies to HELP your grandfather (not necessarily meds; polypharmacy is a big problem in the elderly, as other posters have said) and that your goal isn't to "put him in a home," or something like that. It's best to try to figure out WHY your family wouldn't want to know if something is wrong, and try to address THAT issue in a reassuring manner.

 

Thank you so very much for your replies! You have been so very helpful! I'll take all this information and write a brief (!) note to his doctor. As I mentioned, I'm simply not sure what types of tests/med checks/etc may or may not have been done.

 

You know, I keep wondering WHY my dad, et al don't want to recognize what to me is an obvious problem. I don't want to put my grandfather in a home and I don't want to take his freedom away -- I do want him to be safe and happy and as healthy as possible. Again thank you very much.

[G5052]

I won't tell the whole sad story, but it took going to the DMV over her driving to get my mother diagnosed with vascular dementia. I actually live many states away, but was getting so many calls about her near misses from family friends and other stories about her lapses, that I finally wrote DMV in her state and sent a copy to her doctor. Her doctor called me and THANKED me profusely. My mom would NOT admit it, and none of the relatives there saw anything wrong (including my father). When she was diagnosed it was mid-stage, and the final testing proved cognitive, motor, memory, and spatial defects that were much, much worse than anyone expected. The neurologist who finally made the ruling ended her driving too. She also blacks out periodically when the blood flow in her brain isn't quite right or when she has a mini-stroke.

 

I was estranged from my parents for a year, and things still aren't real great with my mother and most of my other relatives. I know that I did most loving thing that I ever did for my mother though. I got her diagnosed and off the road. Sometimes you have to do what's best for the person in the long run despite the consequences.

[Danestress]

if he doesn't think there is anything wrong with your grandfather? Or is it a specific POA that says that if your grandfather becomes disabled in the future, your father will, at that time, have the power?

 

It's really really frustrating, dealing with aging related dementia. I've shared a lot of this board about my father's problems, and one of the hard things is getting everyone on the same page because it's a moving target.

 

At the stage your GF is (which by the way, sounds more like stage one than stage two to me) some days are very good and some are bad - or at least that's how it was for us. Some days I was sure he had Alzheimer's, and then a week later, I would think I had been crazy.

 

One thing I have learned is that there is a real gap in generations concerning doctors. My sisters and I check every medication. We do research, we generate questions, we raise issues (one of my sisters in particular does this, and it's a blessing and sometimes a curse). My mother, on the other hand, thinks that whatever my father's doctors say must be right. She won't question the wisdom of drug treatments, she won't ask follow-up questions, she won't demand testing.

 

It's really hard, but I have had to remember that they are the decision makers and I am just someone who cares about them. I try to think about how I would feel if I had breast cancer and my mother was wanting to write notes to the doctor, grill me about treatment options, and tried to convert DH to her way of thinking. I would tell her to mind her own business. And I would still want my Mom to be a Mom and love me and help me. I try to remember that sometimes I have to just shut up and mind my own business, but still be present - still help, still notice and maybe make gentle comments.

 

And then there are times when I just throw down the gauntlet and refuse to accept that these aren't my decisions. Driving was one of those. I first refused to let him drive my children. They I argued with both of them about him driving at all. My father was sooooo mad at me for so long. He told everyone I was the enemy. But I was right. I carefully explained to my mother everything she had to lose if Dad had an accident and medical records were subpoenaed and they showed he was being treated for dementia. Legally, morally, medically, my father had to stop driving, and that has mostly blown over now.

 

I feel for you.

[brehon]

if he doesn't think there is anything wrong with your grandfather? Or is it a specific POA that says that if your grandfather becomes disabled in the future, your father will, at that time, have the power?

 

The POA was set up at my grandparents' request so that one of their children (and my dad is the eldest and an attorney - hence the reason they chose him) could legally make decisions about their care, estate, et al should they become incapacitated. And, yes, it kicks in when/if my grandparents can no longer make any decisions for themselves or pass away.

 

It's really really frustrating, dealing with aging related dementia. I've shared a lot of this board about my father's problems, and one of the hard things is getting everyone on the same page because it's a moving target.

 

At the stage your GF is (which by the way, sounds more like stage one than stage two to me) some days are very good and some are bad - or at least that's how it was for us. Some days I was sure he had Alzheimer's, and then a week later, I would think I had been crazy.

 

A couple of years ago I had the same reaction about my g-dad. Sometimes when we were together I'd think he was definitely losing it; and other times I'd swear he was fine. I think one of the problems with my dad and his sibs is that my g-dad compensates really well. He passes everything off as a joke and says, "Oh, I did that on purpose." Now, however, the problems are so very obvious to me. It's the elephant in the room, as it were. I just wrote about a couple of incidents with him here. Over the past 3 years he has really deteriorated mentally - he truly is in Stage 2 right now.

 

One thing I have learned is that there is a real gap in generations concerning doctors. My sisters and I check every medication. We do research, we generate questions, we raise issues (one of my sisters in particular does this, and it's a blessing and sometimes a curse). My mother, on the other hand, thinks that whatever my father's doctors say must be right. She won't question the wisdom of drug treatments, she won't ask follow-up questions, she won't demand testing.

 

You are so right about this. My mom had to deal with almost this exact situation with her parents. The generation gap when it comes to doctors is astounding.

 

It's really hard, but I have had to remember that they are the decision makers and I am just someone who cares about them. I try to think about how I would feel if I had breast cancer and my mother was wanting to write notes to the doctor, grill me about treatment options, and tried to convert DH to her way of thinking. I would tell her to mind her own business. And I would still want my Mom to be a Mom and love me and help me. I try to remember that sometimes I have to just shut up and mind my own business, but still be present - still help, still notice and maybe make gentle comments.

 

You know, you're right about this. I have bit my tongue about several medical decisions my grandparents have made recently. But I'm so concerned for their safety and for the safety of innocent bystanders, especially with my grandfather still driving.

 

And then there are times when I just throw down the gauntlet and refuse to accept that these aren't my decisions. Driving was one of those. I first refused to let him drive my children. They I argued with both of them about him driving at all. My father was sooooo mad at me for so long. He told everyone I was the enemy. But I was right. I carefully explained to my mother everything she had to lose if Dad had an accident and medical records were subpoenaed and they showed he was being treated for dementia. Legally, morally, medically, my father had to stop driving, and that has mostly blown over now.

 

This is where I am right now. Unfortunately, as the granddaughter I don't really have any recourse other than writing their doctor and laying out my concerns.

 

I feel for you.

 

Thank you for your reply. Really, this would be much easier if I could just get my dad to listen to me. His brothers and sister and, more than likely, my grandparents would listen to him. He's the real brick wall. Of course, underlying all of this, are the myriad family history issueswhich constantly churn in the background. **Huge sigh** Anyway, I do appreciate your response.

[GraceinMD]

 

Ask him to keep your letter totally confidential.

 

 

Brehon, just be aware that the doctor might NOT be willing to keep the letter confidential, so make sure that nothing you say in it could come across as adversarial, but just a concerned-loving-granddaughter type letter, with specifics of what YOU'VE seen (so it won't seem to your g'father that folks are ganging up on him - paranoia can be a problem in dementia) that you're concerned about.

[momto5blessings]

The best one I have seen is the Mayo Clinic's website. http://www.mayoclinic.com

 

There is also a great website that is done by an organization in California

http://www.caregiver.org and then search for dementia

 

Hope that helps

Pamela