Ask the Nurse who works with Alzheimer's and Related Dementias

Miscellaneous and Personal Stuff I Must Share
81

What a heartbreaking thread! Huge hugs to everyone who is or has cared for someone with dementia. My parents are too young for this to be a concern yet, but one of my greatest fears is that my mom develops dementia in her old age. (I’m less concerned about my dad, because he has my stepmom, but my mother is single. And would be appalled if she heard that I’m already thinking about her getting old. :slight_smile: )

Mona Lisa Simpson, it’s clear you love your work, despite its downsides. How did you decide to work in dementia care? How did your experience with your grandparents’ dementia affect your decision?

82

Thanks, I’ll check out those links. Dad already has some pictures painted by my mother in his room, but I think of other items to bring in to convey a sense of home.

83

Hi guys, on nights I will be back and add more to this thread tonight. *The awesomest kid in the world ** kind of blew up my computer last week. Not a lot of chances to post in the last week, between work, my bf’s at home business and stuff.

84

Mona Lisa Simpson,
I was reading some of those nautral health books.
Now I take those with a grain of salt…but I was wondering …do you think that Aliezheimer’s is over or misdiganosed? Like, could there be a lot of people suffering from Alizheimers who in fact have something like profound vitamin defincies or something? Do you thinki there are different types of Alizheimers? ( ie that would explain why some Alizhimers folks are more …literally psychotic and others are more " mind like a sieve “second childhood”)

85

AboutAsWeirdAsYouCanGet, it’s my understanding that Alzheimer Disease is sort of an “exclusion” diagnosis–they say you’ve got it after they’ve ruled out the other possible causes of dementia. AFAIK, there’s no way to diagnose AD for sure without examining the brain directly (i.e., in an autopsy).

86

Hi folks. On the request of a few dopers who have pm’d me and with permission from the mod’s I am going to re open this thread. If you have questions, please post.

87

I see there are some questions I didn’t answer last time. (Sorry I did that thread when I had no computer.) I’m getting ready for work, later tonight on my break I will dive into some of those questions.

88

After reading this thread, I have a couple of dumb questions to start:

– What is a “TIA”?
– What is “Sundowner Syndrome”?

Undoubtedly more to come, but those will do to start.

89

TIA: “Transient Ischemic Attack”, sometimes known as a “mini stroke” or a “warning stroke”, though TIAs do not cause lasting damage.

It is common for people in the earlier stages of Alzheimer’s to become irritable/agitated and more confused in late afternoon and early evening. This is called sundowning and is rather horrifying if you’re unaware of or otherwise not expecting it.

I’m only here because I couldn’t for the life of me figure out how a thread I’d never seen about Alzheimer’s got to two pages with me noticing. :slight_smile:

90

Thanks Silver Fire, those are exactly the answers.

Sundowning is exactly that, getting more confused and agitated late afternoon, evening. Sometimes it is just a bit crankier than normal sometimes it is literally like night and day. As far as I am aware no one knows the exact cause, but fatigue and dehydration certainly exacerbate the condition.

Mini strokes lead to vascular dementia if you have enough of them. Worst is when the infarcts are all in the frontal lobe. The frontal lobe is where all the social filters are, and when that is “gone” people have no social graces, and act very much like a rude two year old. Say what they think and want what they want NOW!

91

There are many kinds of Dementia. Frontal lobe, Korsikoffs, Alzheimers, Picks, Alzhiemers with lewy-bodies, temporal, mixed to name just some of the more common ones. Mostly they are different in cause and location of the brain lesions. Like in my post above frontal lobe leads to no social filter. I had a patient who had severe frontal dementia and he was whining about being hungry. I gave him a sandwich off a snack cart, but hadn’t unwrapped it. I also poured him a glass of juice. He had already bolted down half his sandwich, Saran Wrap and all! Because he wanted it NOW, not in 30 seconds, and he couldnt process that there was a difference with and without plastic wrap. This was about 10 years ago, and its a mistake I haven’t made since.

About vitamin deficiancies etc, I can’t speak for other places, but by the time a patient gets to us they have had a large amount of testing. Blood work, urine tests, sometimes chest x rays, and other things. Infections are a leading cause of psychotic behavior, or any significant change from “baseline”. Sodium and other electrolyte imbalance, dehydration, thyroid imbalance all can cause confusion or other strange behavior. Alcohol abuse can cause numerous problems, people are usually treated with Thiamine to help correct that, and every year we get a few old men who have been living out in a shack in the bush and the get a lot better just being in hospital around people and having three regular meals a day. So, to answer your questions no I don’t think Alzheimers is over diagnosed, but there are a lot of causes for dementia. Running all the lab tests to rule out other causes is what is the basis for diagnosis of Alz

92

Thank you both for your replies. They make sense, in the context of what I’ve experienced.

My father is quite elderly, and I know he had at least one mini-stroke some years ago. And, on a recent visit I made to him (note I live 2000 miles away), he did seem to become more agitated in the evenings; one evening when I went out for a couple of beers at the local pub, he was ready to call the police because his little boy wasn’t home, and it was a school night. He’s also wondered where his wife (my mother) is; in truth, she died over 20 years ago. And have I heard from my sister who lives overseas? Actually, she moved back to Canada eight years ago. Dad has travelled to visit her in her Canadian home a few times. Although on the last visit, he got lost trying to find the exit at the airport, forgot where he was or why he was there, and spent two hours wandering the airport until the police, who had been alerted, found him and guided him to my very-worried sister at the exit.

Another question, if I may: how does one convince someone suffering from this that they are no longer independent? Dad insists he manages just fine on his own, thankyouverymuch; yet we have arranged for caregivers to visit daily, and if it wasn’t for them, he’d have no groceries, no clean laundry, no meals prepared, he wouldn’t take the pills he’s been prescribed (he fights taking those because he’s forgotten his physician really did prescribe them)… You get the idea. He is definitely not independent, and he hates his caregivers with a passion: “These people show up to visit, but they won’t take time for coffee and a chat, and they insist on making me take @#$% pills!” I should add that he is also legally blind.

At this point, a home of some sort would seem to be the best answer, but he won’t hear of it. The blindness plays a role in his lack of independence, of course, but it seems to me that if he was somewhere where he had people to talk to, and activities to participate in (even singing Spanish songs), and regular nutritious meals, he might not be mentally falling away as much as he seems to be. Certainly, if someone holding themselves out as a nurse gave him his pills, he might not put up such a fight about them. And we would not be so worried that something would happen (e.g. a fall, a scald when he tries to make coffee, a kitchen mishap, etc.) to make things worse.

Any hints for convincing him that there are more mentally-stimulating and safer places to be?

93

Be sure you have all your Powers of Attorney for finance and personal care, Wills, regular and living, and whatever all else you need all done up NOW. Then (since I know you are in Canada, Im not sure I would reccomend this to an American until HCR gets going) you can either go the slow route (geriatric referals, though the system and Community Care Access Centre, or you can go the “nuclear option” as I call it. Get him admitted to hospital with failure to cope. Especially if he has some underlying health issue, pneumonia, high blood pressure, fainting something like that. Or if he is presenting with psychiatric symptoms… hallucinations, paranoia, wandering, anything where he can be considered danger to self and others.

Then let the system take him in. If he is deemed incapable by a physician then he will have no real choice but placement. Of course going the CCAC route with homecare and checking in on him etc is a kinder gentler approach but sometimes the wait could be the difference between dad comfortable and cared for (but cranky) and dad out wandering in an ice storm.

Is there any way he could move to Lethbridge or Calgary to be closer to you and your sister?

94

For some laypeople, “Alzheimer’s” has just become a shorthand for “dementia”, because if you say “my mother has Alzheimer’s” people will understand what you’re talking about whereas if you say “my mother has frontal lobe dementia after a series of ischemic attacks,” the most likely reaction will be “uh?”

In Spanish there’s an additional reason for the shorthand: demencia means madness, and the first image that comes to mind is a dangerous, raving lunatic (it’s worse than if you said loco, mal de la cabeza or about any other equivalent term). Saying that your mother has demencia senil sounds like she’s becoming dowdy in her old age. Say that she has Alzheimer’s, and people will understand that she’s forgetful, not her old self, needs to be watched a lot, may cause problems re. food, cleanliness and medication… it’s clearer, and for layman’s purposes you don’t need the exact diagnosis.

95

Nava has a very good point. People like to stick their heads in the sand and deny there is anything wrong, but Alzheimers is something people kinda-sorta have an idea about. My dad’s cousin just last month said to me that her brother has “Alzheimer’s from drinking” which is not strictly true, he does have a form of dementia which is most likely from alcohol.* But it is what she says, and it is how she makes sense of the diagnosis, for herself and others.

It is even worse if people with dementia end up where I work. Its not an old age home, it is a PSYCHIATRIC HOSPITAL, and many people have trouble wrapping their brains around the fact that Grandpa needs to go to the “nuthouse” when all he is is forgetful. (No, there is more than that. We have less than 30 beds for a huge geographic area, trust me, you don’t end up here unless there are bigger problems than losing the car keys)

*Her mother is just one of several sisters in that family that developed Alzheimers or a related dementia late in life. My grandmother is another one. I think my cousin is afraid if people think her mother had it, and her brother has it, she is next, so she is trying to distance herself from her brother’s diagnosis. But although I have only seen her brother twice in the last 10 years, I agree it is probably alcohol-related dementia, but I am not a physician, a geriatric psychiatrist, nor have I seen his lab results.

96

Mona Lisa, yes, we have all the legal paperwork prepared and in order. So at least there’s that. He visits his GP once a month, and a geriatrician every six months, and I would assume they’re watching for any changes from visit to visit.

Moving Dad west would probably not be a good idea. He does still have friends and relatives in his location–his brother is nearby, for example, and the two will visit each other if my cousin can take one to the other. My aunt will take him out from time to time, and to church if he wants to go. We have been in touch with the CCAC, and they have arranged for him to try the local adult daycare once a week, which (so far) he seems to like. So overall, he’s probably in the best location he could be.

That doesn’t change the fact that we do worry. Thanks for the reply, and I’ll post more questions as they arise.

97

I don’t know specifically how to get this done, but generally I find with my mom that I need to do two things to get her to comply with what I need her to do: 1) acknowledge her feelings (I know you’re mad mom, I understand and it’s ok to be mad; Sounds like you’re pretty nervous about being with people you don’t know; etc) and 2) let her know that I do what I do because I care about her and want her to be safe.

Now, my mom is fairly mild (considering everything). I suspect when she gets worse that she won’t be able to rationally respond to what I have to say. But I find it really helps to not (overtly, at least) try to talk her out of or into anything, although that’s my goal. I sense she’s terrified, and so I work to calm her and soothe her so she trusts me. Of course, this is something you have to do over and over, although we are lucky that my mom can still learn and retain a lot. She’s at the point now where she will tell me that she knows we do what we do because we care about her.

98

Regarding the differnt types of dementia, I had once heard that there is no definitive test for Alzheimers except during an autopsy. That is, based on symptoms you can only get to a “very likely” not definite. Is that true now or was it ever true?

Related to that, are there tests to differentiate forms of dementia from normal forgetfullness? I suspect many of us have those concerns. My mother had dementia (senile dementia was listed on the death certificate). She had several auto-immune diseases. I’ve been recently (over the last few years) diagnosed with several auto-immune diseases (thyroid, celiac). Since many diseases tend to occur in clusters in a sub-system of the body I wondered if there is a dementia to auto-immune link?

99

My MIL had a heart attack Christmas Day. Either related or unrelated (I think un) to that, as she was being treated for that, they found she has a hardening or the arteries of the brain. She went from cardiac, to cardiac rehab, to general rehab, to close nursing and has now had to be placed in a secure facility. I could get the exact name of the syndrome but this is mostly to vent.

Two parts of this are tough on us.

  1. Her losses of ability and awareness are sudden and acute more than the gradual/steady decline of something like Altzheimers. They are also unpredictable or at least the docs say so and we seem to see. She entered the hospital being fully able to live on her own. One day a week later she wasn’t able to - but she still had basically full memory; just a little disjointed towards meds and such. A month after that most of her memory of people outside the family vanished in a day. A day last month she lost awareness of place and time which prompted the move to a secure facility. Earlier this week it was most of her sense of family and family members. What ability will she lose next and when? No one can say. And that is a real soul-crusher sometimes.

  2. Of everyone in the family, she seems to remember and relate best to me. She doesn’t remember my wife as her daughter but as my wife. She’s lost the concept of “Son in Law” but remembers and describes me as “that guy who always makes things better”. Well, this time she’s wrong but we play it to our advantage as much as we can. We’re both POA and have been long before this started. Problem is ------- that takes big bites out of my life I have a hard time explaining to others. She needed to go from the care facility she was in to the hospital to be checked after a fall. She was combatitive and agitated so they called me and I bailed from work to go ride the ambulance with her and help respond for her and explain things to her at the hospital. Keep her calm and lower the trauma both for her and for staff. My boss had gone to lunch and came back to find a note from me saying “I’ll talk to you later this week” - I needed, or felt best, acting now and explaining later.

So I’m finally at my question ---- is there a good documentary or movie or something I could share with my boss/neighbors/friends to show some of the kinds of things we are dealing with? Not so much Hollywood-ish as more gritty? So they understand why we need to drop everything now and then and maybe aren’t quite our usual selves? I’m lucky - my boss says do what I need to do. My wife’s boss would like to do that but its a more corporate situation and he can’t. Maybe with a better understanding, he could pull some things as well.

100

kopec, there have been a couple of documentaries about Alzheimer’s, though they might include other forms of dementia, too. One is an HBO series called “The Alzheimer’s Project” (which I have seen, and is definitely gritty and heartbreaking) and the other is a PBS documentary called “The Forgetting.”