So.... Granny definitely DOES have dementia....

[moriah]

... but given her age, 86, and the amount of insults to her brain (malaria as a child which caused learning disabilities and later the scarring caused seizures, several strokes), she's not bad.

One of the questions they asked her was what year her husband, my grandfather, died. He was in the hospital right after Christmas in 1991, died January 1, 1992.

She said 1972. So she pinged on the 2, she remembered that. She just couldn't remember which decade. The doctor was trying to get her to do some mental math about when she retired, and she didn't do a good job with that. But with her learning disabilities mental math has never been her strong suit -- although math has been the easiest thing for her, it's much easier for her to add than spell.

So she now can't cook unless it's microwave, they're getting a LifeAlert bracelet for her, and they recommended she not answer the phone -- they're going to try to find a way for her to be able to call out, but for it not to ring.

The only thing about the memory testing that concerned me is that she didn't try to hedge her guesses much. Perhaps she was just trying to cooperate, but the pattern on the answer for Grandpa's death was "Let's see.... 19... 72?" And as far as retirement went, she said she retired at 65 -- which was not true, she continued to work for Drapery Services until nearly age 70. She remembered what year most people retire, but she didn't remember what year she did, or exactly when. She may have been concerned about the fact she worked under the table, but she didn't actually retire from work completely until age 81.

I would have expected her to have guessed "sometime in the 80s" or "sometime in the 90s", but she answered quickly on those questions, which sounds like a lack of insight.

We should know in about two weeks. They didn't do the EEG today they had planned, because the evaluation took as long as it did. But they seriously want her to have a long EEG to determine if she is still demonstrating seizure activity.

I'm not sure exactly what the difference is in presentation with Alzheimer's and multi-infarct -- and we don't know which they're going to say is more likely, she probably at least has some infarct-caused dementia, which is the usual cause of old-age dementia. If it does seem more like infarct-related rather than Alzheimers or Lewy Body type, they will likely switch her away from Dilantin -- which I think they should have done a long time ago. After she has an adjustment of either her Coumadin or her Dilantin, she has major difficulties keeping the levels of each even.

Thanks for those who have kept her in your thoughts. Anyone who has a relative with Alzheimer's or just old-age dementia, how is this sounding compared to your experience?

[hippywife]

1. I don't have either

but I work in a retirement center with assisted living and a nursing home in addition to independent living and I'm around it quite a bit. It sounds like it's kind of mild at this stage.
How is she with dressing and grooming, location, etc?

Hopefully, given her age and depending on her longevity she may or may not experience the worst of it. For all of you, I sincerely hope not. :hug:

[moriah]

6. Only depression making her not want to do ADLs really.

They're treating the depression with Lexapro, and they're making sure that she has an easy routine she can follow with all of the things she needs right there in the same places.

She will sometimes get distracted from a task -- she'll start off to go get a bath or make breakfast but then sees a good show on TV, or something similar. But heck, that happens to me. :) The laptop is a great distraction, I left dinner in the microwave for six hours yesterday.

The only real serious health problem she has other than the brain insults is congestive heart failure, which she's been diagnosed with for nearly a decade and the medicine has helped slow the progression. She's a very healthy old lady! :) She's outlived her husband for almost a decade now, which means she's been widowed for 16 years. And Grandpa never had great health to begin with. Other than blood pressure, her hard pregnancy, and a few episodes of hypoglycemia (they manifested as seziures, which we thought were glycemic but may have been early indications of her seizure disorder), she'd never been sick a day in her life.

And as far as cancer... she had a few polyps removed, and she whines about how awful GoLitely tastes, but she gets it monitored without too much quibbling.

With her in my genetic makeup, I'm absolutely determined to save for retirement. I just hope the stock market doesn't tank by half, otherwise I'm still better off putting my money in the 401k I have.

[hippywife]

9. At 50, I do those things, too.

Or forget what I walked over to the fridge for while I'm cooking and have to stop and think about it a moment, or open the freezer when I meant to open the cabinet, etc. From conversations with my co-workers, I'm not alone at all.

[moriah]

10. Me too, at 28!

I even left a pan of boiling water on the electric stove too long -- only by about 10 minutes, and I had the temp setting so that it would not actually go into a rolling boil, but I had to add more water to get enough for my Cup O Soup.

The worst things on ADLs and memory have been the one time when I went to see her and it looked like she only combed half of her hair, and she often just doesn't bother changing into day clothes and stays in her nightgown all day. The latter seems more like depression than forgetfulness -- she knew that she ought to put on clothes, but she wasn't going out anywhere, it was her own home, and she didn't feel like getting dressed.

Mom did say she sometimes forgets the tablet for her denture cleaner and just soaks them in hot water, but she never forgets to rinse them before putting them in her mouth, and goes to sleep in them for the night only rarely.

Mom is familiar with the early signs of dementia so that's why she was concerned -- and it was mainly the emotional issues that had her concerned the most. But fortunately she also knows enough to know that it's not the end of the world at this point, and the "delusion" that they were going to put her in a home had some foundation -- it wasn't like the woman who was sure that I'd stolen her bobbin from her sewing machine because she misplaced it, and in that case she called over about 4:30 PM, so the lady who was sure I was a thief who was also "coming over into her shed to do laundry" was sundowning when that happened.

We just want her happy, safe, and in her home. Better to rule out anything other than simple old-age forgetfulness and understandable depression.

[hippywife]

11. I'm assuming

they've also ruled out urinary tract infection? Those will surprisingly cause confusion and are common in elderly folk since they tend to not drink enough fluids, sometimes unconsciously and sometimes due to incontinence issues.

ADL's are usually the first outward indicators of confusion. I'm glad you are trying to keep her in her home. Dementia has a strong tendency to increase if they are moved to new surroundings. But stick very close to her, as sometimes the symptoms can increase quickly and can put her in danger, say if she begins to wander, or put something metal in the microwave which could start a fire. We have fire alarms set off all the time from folks forgetting stuff in their toasters and microwaves. One lady burnt a frozen waffle to a black, unrecognizable, very stinky bit of char last week.

If family can't be with her as much as you'd like, you might find a nice senior lady to sit with her through the day and assist her. She could cook for her, take her places, and also provide someone to talk to. The mental stimulation from conversation and activity really helps slow down the progression of the disease a bit.

[moriah]

12. I don't know if they've ruled out UTI.... I hope so, and I'll mention that.

As far as safety concerns, we're trying to be proactive.

The room she stays in was an addition to the property -- an enclosed garage. As such, it has an exterior door. With her mobility issues (she doesn't need a wheelchair or a walker anymore around the house, but after the stroke it's still hard on her and she's slower than she used to be, and more clumsy if she's upset), we thought the room was the best place. She didn't get disturbed by Mom and her new husband making love or watching TV at night, she would be closer to the kitchen for food, and she already has a bedside potty so the room being further away from the bathroom isn't that bad. She also usually takes a bath with assistance even though the bathroom has been modified so she can do it without help.

But that exterior door is very scary when it comes to elopement, and locking it would mean it would be harder for her to get out in case of a fire if she was in a hurry -- she would still be closer to the front door, though, than she was in her old room. So even though she has not shown any tendency to wander and they started her on Seroquel to prevent sundowning, Mom is getting her registered with SafeReturn now, just in case. We do have a home alarm system, and there is no panel on that door -- so if necessary the alarms can be set for the doors at all times, and she doesn't know the code. If someone is home, it will wake her, and police will be sent if the code isn't entered. The panel is in Mom's room as well, so she can turn it off and go find her if they're home.

We had a family meeting several years ago when Granny had the major stroke that caused her to be unable to work anymore. After Grandpa died she started being a companion for elderly ladies, so we were all in agreement that we would find a way for her to stay in her own home, and that a lady friend at least somewhat close to her in age and who was very Christian would be the best companion. We have an extra room if the person needs a place to live, and we'd be willing to provide transportation if they wanted to live in their own home.

What we'd probably do about pay is this -- find out what they would be okay with for net and then pay UI insurance, withholding taxes, FICA, etc, and then also pay the taxes for her. That way it would be just like working under the table for them, and when they filed income tax they'd get a small bonus.

[hippywife]

13. Sounds like you've

got all the bases covered and have considered just about everything I can think of. She seems to be in very capable, loving hands. :hug:

[sarcasmo]

2. My wife has been diagnosed with mild dementia at 51.

We have a test coming up on the 9th with a neuropsychologist, I assume the test maybe similar to your Grandmothers.

[moriah]

5. Wishing you the best of luck....

Granny is pretty good for her age and all that's happened to her, that's what the consensus was by the person who gave her the tests.

The neuropsychologist hasn't given his DX yet, but he's going to wait until they've been able to get her epilepsy fully evaluated and until the results of the CT and MRI come back. Given the fact that there are so many possible contributing factors, he doesn't want to rush to a diagnosis that might really hurt her emotionally.

My mom got her degree with an emphasis in gerontology so she was probably pretty quick to see early signs, and she's not reacting like it's the end of the world, just trying to keep Granny safe.

More than memory loss, what was scaring Mom and her husband were emotional issues.

She cries at the drop of a hat. When Mom married her new husband, she became absolutely convinced that they wanted to put her away, and really resisted the transfer of her medical care from a doctor that couldn't work her in for a week sometimes to a very good practice that specializes in gerontology -- she was convinced when they were talking about the new doctor, that they were talking about a nursing home. She called me and my man crying saying that they were going to put her away and that we had to stop it.

But ... she defined her entire life by her ability to work, and even though we would tell her "You've EARNED the time for yourself, you've done so much for all of us" she never really believed it. She's been horribly depressed, feeling like a burden, she's happy for my Mom that she's finally gotten married but feels like she's in the way. They're treating that with Lexapro, and it has helped keep it from getting worse.

And Mom's new husband has never been the embodiment of tact. He said something really stupid to her, and when I found out about it I drove four hours to Little Rock, pulled him outside, and yelled at him at the top of my lungs for about 10 minutes, telling him that this is a woman who has done so much for her family, done so much for me, etc, and if I even thought he EVER treated her so callously again that ....

Well, the threat I made was "Oh, don't worry, I won't do anything physical." (When a redhead in a temper tantrum doesn't threaten to bash your head in, cut your anatomy off, or some other impossible or unlikely action, it's amazing how quickly someone takes her seriously.)

So he started taking his words more seriously, and when she started having the newest symptoms -- she got her days and nights mixed up, was wandering around the house, and scratching herself to the point she was causing lesions -- when Mom needed to take her to the doctor but couldn't, he and his mother took her. The doctor said he wanted to do a mini-psych eval that day, and he said "Absolutely NOT, for her sake we MUST wait until my wife is here for this" and they left with a prescription for Seroquel, which has gotten her days and nights straightened out.

She wasn't *truly* sundowning, but it was an early manifestation of it.

---------

So they're doing LifeAlert, they are going to go ahead and get her a medical bracelet with Safe Return just in case -- the room she stays in has an outside door, which is good if there's a fire and she needs to get out quickly but maybe not-so-good if she starts truly sundowning despite medication. They're making sure that everything she needs is out for her in the same places every day, they're putting her medicine in reminder containers so all she has to do is open the little window and take what's in the window. They're continuing to spend time with her in the evenings watching TV, they always have dinner together and she helps with drying the dishes, Mom does the laundry but she folds it and leaves it in stacks.

They're trying to think of other things she can do to help around the house that aren't physically demanding and will keep her feeling useful, and also keep her stimulated so she doesn't lose abilities through disuse.

They haven't yet had to start putting notes up to remind her to do things, but they're already thinking about what might be helpful.

They're not sure if they're just going to turn the ringer off on the phone, or if they're going to do a "special ring" for when me or my sister calls, and then have the other calls forwarded to voice mail.

And all of us, her entire extended family, are going to make sure that when she needs a 24-hour caregiver that we pay for one to come in -- she won't need anybody skilled really, just someone who will be there for her, like she was for so many other people throughout her live. We're hoping we can find another elderly lady who needs some spare income.

[sarcasmo]

15. The evenings are the worst, as the sundowning is evident. We always try to do appointments in the

Mornings. Thanks for the luck.

[hippywife]

8. The very best of wishes

to you both. Does she have a history in her family? Have they mentioned checking to see if it may be vascular?

[sarcasmo]

14. Thanks, no family history I think it was brought on by Normalpressurehydrocyphalus, spelling?

[hippywife]

17. Thank goodness they were able to

diagnose the NPH. It is so very often misdiagnosed that I fear for all these little old people who are so immediately dx'd with something else. You must have some very good doctors. :hug:

[sarcasmo]

18. Our Neurosurgeon is the best in west Michigan. Primary Doctor sent us to him after

the first xray came back negative for a tumor. My wife is lucky she has a top notch primary doctor.

[Midlodemocrat]

3. Before the definitive dx of dementia

ask her neurologist to make sure she doesn't have NPH - neuropressure hydrocephalus. If she is having trouble with gait, she might have this.

Presents similarly to all the dementias, but cognitive meds have almost no effect. There IS a drug to treat NPH and it works beautifully.

Just have to get the right dx.

Good luck to you. :hug:

[hippywife]

4. That's an excellent point.

It had slipped my mind. It's called Normal Pressure Hydrocephalus but there is no drug therapy that I know of. The only treatment I've seen is the surgical placement of a shunt to drain away the extra fluid.

http://www.ninds.nih.gov/disorders/normal_pressure_hydrocephalus/normal_pressure_hydrocephalus.htm

[moriah]

7. Yeah, I'm really glad they're not rushing to DX.

The guy who did the eval said he would put her between "borderline" and "mild" at this time insofar as memory.

But the emotional and affective symptoms, and the most recent episode that seemed like sundowning, are what have us concerned.

From looking around, it's like she's having the emotional and affective symptoms of Alzheimer's, but without the cognitive decline of a similar person at that stage. Then again, she has learning disabilities anyway, so we are more forgiving probably of what might appear in a more educated person to be really significant decline -- she's never been good at mental math, she can't spell worth a darn.... (She never truly settled on even the spelling of my name, and my first name is Crystal. The variations that were written on my lunch sacks for so many years... heh.)

She taught me to read, completely unintentionally. She read to me every night, and sat so I could see the book, and she always read with her finger under each word. When I picked up a brand new book and started reading aloud, they were all shocked.

And I came home from the hospital with a sign saying "severe mental retardation"... doctors. Can't live with them, and killing them is so inconvenient when you have to deal with the paperwork.

[sarcasmo]

16. My wife has been diagnosed with both, the vp shunt was put in the brain in May

to help with the balance, and the neurologist said it was a case of mild dementia together with the normal pressure hydrocephalus.