What is Alzheimer's? That is the question.

Great video provided on Alzheimer's Reading Room

Speaking Alzheimerian or The Language of Alzheimer's

Thursday, September 22, 2011

     It's been a while granted, major computer problems, not  completely solved at this time.  Suffices to say, that these problems render it almost unimaginably difficult to type . . . hence the problem.  But having said that, if you have any interest in Alzheimer's, as a patient, caregiver, physician or family member you just gotta read the Alzheimer's Reading Room, it's a jewel, a comfort and a wealth of information.  Hence, I've included a link to today's topic.  It's true, it's real, I live it and it helps me to get through the day or a visit with my mom.  I've added two quotes to the article that seem to say it all. . . . .

     http://www.alzheimersreadingroom.com/2011/09/alzheimers-world-and-art-of-lying.html

"When you get to Alzheimer's World you have to learn how to speak Alzheimerian. A new and different language that always starts with a very simple basic premise -- always do what is best for the person living with dementia."

"Well, the language in Alzeheimer's World is also different and sooner or later you need to learn how to speak Alzheimerian (Alz-heim-er-ian)."

Alzheimer's Reading Room: Combination Therapy for Alzheimer's Disease (Aricept and Namenda)

Alzheimer's Reading Room: Combination Therapy for Alzheimer's Disease (Aricept and Namenda)

Alzheimer's Reading Room: Combination Therapy for Alzheimer's Disease (Aricept and Namenda)

Alzheimer's Reading Room: Combination Therapy for Alzheimer's Disease (Aricept and Namenda)

Dental Care Hard to Come By>> > > Why?

   Now I have a great dentist, I trust him, he's competent, pain free and honest.  I can't take my mom there because he's one of those radical maverick dentists who refuses to have his treatments dictated to by an insurance company.  I like this about him but, it's not my money.  Mom's in a HMO.  What does tis mean, well, it means that the dentist who's across the street from her apartment will only take PPO patients not HMO.  It means that I've got a long list of potential dentists and no way of knowing if any of them should be trusted with my mom.  She's a fine patient, although she won't recall why she's there or needs to be and will forget that the visit occurred, I want to make sure she has good consistent care and because she can't remember, how can she tell me whether she's treated well.  I called several dentists, all near her, some like the HMO hater, won't see her, others don't answer their phones, preferring patients to leave messages which they return days later, still others are located in areas I find myself hesitating to traverse without protection.  Hence the dilemma.   My dentist will see her almost immediately, answers the phone immediately and has an emergency number if you need it.  However, he'd like to be the one to determine what she needs, on the schedule that works for her and he'd like to get paid a not unreasonable amount to do the work.  Of course, we are now scheduled for an appointment, the soonest was August 18, while I worry that she is not receiving what she needs, when she needs it or whether her insurance is forcing us to a devil's bargain.

Communication in Alzy World

Communication in Uncle Alzy's World

I love Alzheimer's Reading Blog, tons of information presented by a caregiver from his perspective in the Real World.  Read how to communicate in mom's world.  You accept what is and embrace the positive.  We have to change since she cannot.

Open House

Heard from the Real Estate Agent, good news.  Our open house rated four visitors.  Between St. Joseph and lowering the price, perhaps we'll have some movement on the house soon.  Feedback from one of the visitors, "I don't like the paint."  Worth noting, as I told the Agent, neither do I, but it's freshly painted, use it as a neutral base coat primer and paint over it, people.  The house is clean, ready to go and for the price of two cans of paint, that's your problem puhleez. . . .

Doctor, doctor, have you heard the word or never Underestimate the Fear of Alzheimer's

 We had our check up today.  MomCat was ready and waiting downstairs, mental note: "MomCat  prefers post-breakfast and pre-lunch appointments."  Good to know.  All is well, physically, though since she's now 5'4 1/2, she does appear to be shrinking.  Did I used to think she was 5 10 or was it 5 6, I'm sensing a trend here.  The doctor noted that Mom repeated the same story to her as last time.  Interesting that she would recall that story so I s'pose that proves the doc's ok but somehow she still wants confirmation of MomCat's condition. So off to another neurologist for a battery of tests that will confirm the diagnosis.  Let's note for the record that I don't need a confirmation of the diagnosis.
      Humor element of the day came when the Doc., informed me that the neurologist MomCat had visited in June is no longer working.  Geez, that really was a bad appointment but who knew Mom had that kind of effect on the help.  That neurologist seemed to have no real idea how to handle anyone with Alz. let alone MomCat.  It's true that having the academic foundation is no substitute for actually being in the trenches.  My advice to her, take the time to spend the time with the patients.  I wonder how many MomCat will go through before she officially rates her own page in JAMA.

St. Joseph and friends visit Mom's house

    I thought it would be a great idea to enlist the help of St. Joseph to help sell Mom's house.  The idea of course is that if I can sell the house for the best possible price, I can keep mom in the most convivial living situation for as long as possible.  I never liked the idea of Mom in any kind of nursing home, perhaps it's my own paranoia, but there it is, I would rather she be in a homelike environment with friendly people who care for as long as I can possibly manage it and with luck her entire life.  Of course, the market being what it is, there are plenty of houses out there and plenty of people with reasons to sell theirs, in better locations, newer or whatever so time to take it to a superior authority.  This day finds me with her /Cat's grandson, Ian, friends Doris and lil Doris who were kind enough to accompany us, standing on the front porch with St. Joseph securely buried in the garden, reading the prayers together.  I have to say, that moment felt special, my friends and my son, together praying.   I don't know how that legend started and whether it will work for us, I don't know but if it's our time and His will, St. Joseph with the help of the Almighty, will find us a motivated buyer. Thank you my son and my friends, you are special people.

Snaggle tooth and Hurricane Prep

Gotta call from Mom today, because she'd had the resident's meeting about Hurricane Preparedness.  She proceeded to read the three page document to me, nice that she's still a great reader.  I  think I read somewhere, probably the Alzheimer's Reading Room, that reading is the last thing to go and that it's often a good idea to write things down.  She sounds just like her old self when she reads.  She was worried about what would happen to all of her things and maybe a trifle gleeful thinking that if I took her home with me in case of a hurricane, that maybe she'd be gone for good from "hell" with all of the old people.  She, of course, is convinced that she is much younger than anybody else living there and that everyone else there is all wrinkled up and has problems.
    Now I knew about the meetings and actually was planning to attend the 7 p.m. meeting there as her "family" and "caregiver."  I arrived and received the same packet that Mom had just read to me.  Interesting Information that most elder residences, not nursing homes require their residences to evacuate on their own or with family members but the Landing had always, until this year, evacuated their residences and paid for their accommodations and services without charging the residents.  Unfortunately, because there have been so many evacuations, the decision was made to charge a reasonable fee for evacuating that includes transportation, food and other accommodations.  Alternative you can make your own arrangements.  Dogs and other pets will no longer be allowed to evacuate with the residents.  Interesting, maybe Lacey's timing wasn't all bad.  Now I don't think we'll have a particular problem with hurricanes this year and Mom will be with us at the whiff of hurricane winds but it's up to me to convince Mom that she won't have a problem.  She's ready to pack up lock, stock and barrel.  She is truly fixated on getting all of her precious things out of the apartment with her, reviewing every item in the room and discussing whether my "truck" is big enough to accommodate all of her precious things.  Well, after the meeting I go upstairs to visit with her and make sure that I've soothed her nerves, she answers the door and of course I see that a tooth is now missing from her mouth.  Now, I've talked to her three days in a row, maybe more, discussing her up-coming doctor's appointment, pointing out to me that there's nothing whatsoever wrong with her.  Her stomach works, her ears work, her eyes, her poo and there's nothing else with her.  I ask what happened to her tooth and she says that it was hurting and then one day she touched it and it fell off.  She does have the tooth, she says but after dutifully searching for it, that little sucker has apparently fled the scene with no intention of being reinserted if, of course, that were even possible.  Well, whether she likes it or not, we will now have a dentist appointment, good thing I got that extra insurance and we might as well get the eyes checked while we're at it.  Well at least now, we may get a solution to the problem of her floating Partials that fall at times, while she's talking and I can perhaps talk to the dentist about alternatives to the denture glue that I don't think she recalls how to use or ever used.  And so it goes.  At least it didn't seem to be hurting her.

Mom Cat remembers, a little. . .

Haven't been very good at keeping up the posts. Sometimes surviving all the myriad hoops of care-giving,and trying to have a life just get in the way. Nice conversation with mom today on the phone. I'd scheduled a doctor's appointment, just a checkup, something she'd always scheduled for herself and crowed about how she always came out with flying colors. Of course now, she can't quite remember what a check up is for, and asks what does the doctor want to see. She originally called because she happened to recall that I'd said we had a doctor's appointment tomorrow but not with whom and why. She wanted to know the doctor's name but I was happy that she noticed that it wasn't her regular doctor's name. Of course this is the regular doctor from 17 months ago and I had to remind her that the new doctor is a woman and that she's already seen her twice. Well, how cool that she said that there had been two doctors, and which one was she going to see. That's actually a good thing, two days ago, she wouldn't have recalled one woman doctor and certainly not two. It's the little things. Always good to recall that Mom's in there, sometimes close to the top and sometimes only on the outside but I love her.

Mother's Day 2011

The Landing is going to post on their in-house tv screen, quotes or pics of everybody's family members to run for Mother's Day. I sent them this family portrait because I think that mom will relate to a picture better than a great deal of words. I also sent a picture of Lori and me kissing Mom, probably around Christmas this year with a heart saying we love you. I didn't send any quotes because I don't know if comprehending some long quote wouldn't be more frustrating rather than joyful.  Went over to Landing with Austin and we brought Mom out to Panda King, a buffet that she enjoys, or perhaps she enjoys having the outing and hopefully the company.  There's no one like Mom.  We love you and always will.

Austin's Special Graduation Celebration with Grandma

 Austin's high school graduation.  He very much wanted his grandma to attend graduation, the biggest moment in his young life and when we broached the subject to her, I thought it was possible that it could work. If the stars aligned, she'd have a good day and 8 o'clock at night wouldn't be well past her bed time.  Unfortunately the closer we got to the date, the scarier it became for her and we finally told her that we'd have a special graduation celebration just for her.  We brought her out to our favorite Westbank eatery, hibachi is always good for a laugh, she's constantly surprised by the show the chef puts on and it's always new, a nice side effect of Alzheimer's I suppose.  Of course, it didn't disappoint because she had two daughters and three or by her count, four (our NJ friend became an honorary grandson for the day) grandsons and a son-in-law.   You should know that she definitely prefers the company of men, though she doesn't eschew that of women.  We've got to take these moments whenever we can get them, every smile, every laugh and at least this time, she didn't ask the Chef whether he was an "American."  

Death of a Dog, birth of a new routine

Lacey RIP

Mom's dog did die.  I'm not gonna lie, it wasn't a very nice dog, prone to biting small children, growling, snarling and biting Mom quite often.  On the other hand, it was her dearest love, a peek a poo, with cataracts, a ratlike hairless tail and a Cujo like attitude.  RIP Lacey, thank you for many years of companionship for Mom.  Of course it did manage to pass on at the worst possible time but knowing this dog, it wasn't that surprising.  It was nice that the complex allowed her to keep her dog, Thanks for that.  
I worried that when Mom's dog died and she no longer had that routine, feed the dog, walk the dog, feed the dog, walk the dog. . . how would she cope? Would we lose the battle because she no longer had that to hold on to? It may however, have had a fortunate side, the dog might have lasted for that first year to help her have an anchor from her former life and join it to her current life. I say this because ever since, she's had to step out of her apartment to see what everybody else is doing. I notice that the tv is off more often and today she actually talked about the dancing she did yesterday, she didn't recall that it was 4th of July and what the celebration was about even though we'd talked about it quite a bit. Now though she speaks a bit more gently about the other residents and perhaps it's becoming home for her and not some nursing home type hell.

MomCat Tries a Hobby

I wanted to give Mom something new to do, to enjoy and maybe something that can help practice memory skills.    She's never really been a hobby person, she likes to work on what she calls her "quiz books" that are ring a word books, and she does pages and pages of them but is it really enough.  I was discussing the problem of what kind of hobby could she pursue with my friend, Pat and we'd talked about making bead necklaces because they could be part of a routine, follow a pattern and produce something that Mom could give away and feel that she was still a contributing member of society and then voila, Paint by Numbers.  In Baton Rouge, fittingly since that's her hometown, I found several reasonably priced paintings complete with paints, picked up some extra brushes in case we lose the kit and now it's off to Mom's apartment.  I offered Mom the canvas that looks like her deceased dog, figuring that would hold the most appeal for her.  I explained the process and then we begin.  We completed the process as I discovered I needed to do it with her because the attention would wane but she did remember to look for the number but didn't always remember that it correlated to a particular color or what that color was.  I've got a few more to do with her and I look forward to it.  I can't say if it was a success or even that she could or would do it on her own but the worst would be that I continue to do it with her and the best is that we get to spend time together doing it.    Of course the bead idea is not off the table and I'm certainly thinking about some other ideas like puzzles but if it does nothing else but offer us some more time together, I'm all for it.  I just forgot to bring some way of hanging it on her wall, or as we dubbed it, the Mom Cat Gallery.

Our Family Circa 1962

Mom and Dad were happy I think.

The Journey Begins

The Journey Begins is a proper title because I suppose it is a journey for all of us involved.  Mom has Alzheimer's.  That's a fact.  She won't agree but then that's the nature of the illness.  She's there still.  She'll tell you that she's very healthy, nothing wrong with her and to see her, doesn't appear to have anything wrong but to talk to her, well that's a different story.  Today was a good day, I read on the Alzheimer's Reading Room, an excellent source, that bright light is good for you, makes you more alert or triggers the happiness button, so I figure I'll take her out to eat, either someplace where we'll see a lot of natural light or just ride around and get some sun.  She had a good time, ate 3/4 of an eNtnormous salad while protesting vehemently that she couldn't possibly eat that big salad.  Had the waittress not dropped off go boxes too quickly, I think she would have steadily eatem the whole thing.  I refilled her pill box, she was down to 1 week and 3 days of pills left.  She didn't have any leftovers so I'm pretty sure that she was taking all of her pills.  She'd gotten up in the morning and apparently washed her undies and had hung them on the shower rod with the bathroom heater on to dry them off.  She mentioned her dog (deceased) at least twice but when I mentioned giving her a beta fish as a low-maintainance pet, she didn't remember what a beta was.  So I'm not sure that getting one for her is the best idea but Austin would like to go forward with the self sustaining pet.