Scientists Isolate Toxic Key to Alzheimer's Disease

NIA NEWS
For Immediate Release: June 23, 2008

Scientists Isolate Toxic Key to Alzheimer's Disease
Soluble Beta-Amyloid Protein Fragments May Damage Brain Cells, Study Finds

Scientists have long questioned whether the abundant amounts of amyloid plaques found in the brains of patients with Alzheimer's actually caused the neurological disease or were a by-product of its progress. Now, using new research techniques, scientists have shown that a two-molecule aggregate (or dimer) of beta-amyloid protein fragments may play a role in initiating the disease.

The study, supported by the National Institutes of Health, suggests a possible new target for developing drug therapies to combat the irreversible and progressive disorder.

Ganesh M. Shankar, Ph.D., and Dennis J. Selkoe, M.D., of Brigham and Women's Hospital and Harvard Medical School, conducted the study in collaboration with other researchers at Harvard and in Ireland at University College Dublin, Beaumont Hospital and Royal College of Surgeons Ireland, and Trinity College Dublin. The National Institute on Aging (NIA), part of NIH, funded the study which appears online in the June 22, 2008, Nature Medicine.

Alzheimer's disease is marked by the build-up of plaques consisting of beta-amyloid protein fragments, as well as abnormal tangles of tau protein found inside certain brain cells. Early in the disease, Alzheimer's pathology is first observed in the hippocampus, the part of the brain important to memory, and gradually spreads to the cerebral cortex, the outer layer of the brain.

In this study, researchers tested cerebral cortex extracts from brains donated for autopsy by people aged 65 and older with Alzheimer's and other dementias, as well as those without dementia. The extracts contained soluble one-molecule (monomer), two-molecule (dimer), three-molecule (trimer) or larger aggregates of beta-amyloid, as well as insoluble plaque cores. The researchers then injected the extracts into normal rats or added the extracts to slices of normal mouse hippocampus.

Shankar, Selkoe and colleagues discovered that both the soluble monomers and the insoluble plaque cores had no detectable effect on the hippocampal slices. However, the soluble dimers induced certain key characteristics of Alzheimer's in the rats. The dimers impaired memory function, specifically the memories of newly learned behaviors. In the mouse hippocampal slices, the dimers also reduced by 47 percent the density of the dendrite spines that receive messages sent by other brain cells. The dimers seemed to be directly acting on synapses, the connections between neurons that are essential for communication between them.

To confirm this effect, the researchers then injected certain antibodies against beta-amyloid protein fragments. These latched onto and inactivated the dimers, preventing their toxic effects in the animal models. However, much work remains to be done before inactivation of dimers could move into the clinic.

"Scientists have theorized for many years that soluble beta-amyloid may be critical to the development and progression of this devastating disease. Now these researchers have isolated a candidate causative agent from brains of people with typical Alzheimer's and directly tested it in an animal model," said NIA Director Richard J. Hodes, M.D. "While more research is needed to replicate and extend these findings, this study has put yet one more piece into place in the puzzle that is Alzheimer's."

The animal findings were consistent with what the researchers found when they examined the brain tissues of people who had been clinically diagnosed with Alzheimer's and those without dementia. They detected soluble dimers and some trimers of amyloid in the brains of patients with Alzheimer's, but none or very low levels in those free of the disorder. Some people free of the disorder, however, did have insoluble amyloid plaques in their brains.

"These findings may help explain why people with normal cognitive function are sometimes found to have large amounts of amyloid plaques in their brains, which has been a puzzle for some time," said Marcelle Morrison-Bogorad, Ph.D., director of the NIA Division of Neuroscience.

"Their findings noted that the brain of an individual who was never clinically diagnosed with dementia was found with abundant insoluble Alzheimer's plaques, but no soluble beta-amyloid."
Selkoe and Shankar noted that further insights into the early stages of this disease process may answer questions not only about Alzheimer's, but also about age-related memory impairments.

"The approaches we used to isolate dimers and the widespread availability of tissues from brain banks, open new avenues of investigation into how these aggregates induce Alzheimer's disease," said Selkoe. "We still need to find out why dimers in particular are so destructive to neurons."
NIA leads the federal government effort conducting and supporting research on the biomedical and social and behavioral aspects of aging and the problems of older people.

For more information on aging-related research and the NIA, please visit www.nia.nih.gov. The NIA provides information on age-related cognitive change and neurodegenerative disease specifically at its Alzheimer's Disease Education and Referral (ADEAR) Center site at www.nia.nih.gov/Alzheimers. To sign up for e-mail alerts about new findings or publications, please visit either Web site.

The NIH -- The Nation's Medical Research Agency -- includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

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What you should know about Alzheimer's

http://health.nytimes.com/health/guides/disease/alzheimers-disease/overview.html?WT.mc_id=HL-D-I-NYT-MOD-FP-CM2-HL-0308-ALZ&WT.mc_ev=click&mkt=HL-D-I-NYT-MOD-FP-CM2-HL-0308-ALZ

I won't go into great detail, just say that if you suspect that you or someone you love has this dread disease, don't put off doing something about it. This primer from the health editors at the New York Times gives warning signs, discusses treatment options, medical tests (that at least two doctors told me did not exist) and some very practical suggestions for dealing with it. From experience, I know that this is good information and well worth your time if you are worried or even just curious. Wish I had had this about four years ago.

Shared Memories

The first friend to share a story about Frances was Elaine H.

My favorite memory of your mother was the day I was invited for lunch to share my reunion story with you and her. We had homemade biscuits and vegetable soup and she was so joyous that day. We laughed and cried together as we ate a marvelous lunch at the dining room table. That day she was like a mother to me and continued to be a great friend who I always enjoyed being around. What a great cook and baker she was! There was always a twinkle in her eye and a wit that one never knew when it was coming. One great lady was Miss Frances........

Exhaling slowly

It's been just over a month since I lost Mom. While things will never be the same again, life is beginning to return to normal.

Friends sent some really lovely cards and thoughtful email messages. Reading them helped. I am sad that my email program (Outlook Express) dumped about 3000 recent messages including all of those lovely condolence letters before I had time to print them out. My intention was to save them so I am disappointed that my computer swallowed them but I remember how they made me feel and that was what mattered. (I really hope that it did not delete any that I had not yet had time to read!)

I also received a really upsetting note from someone I would have defined as a cordial acquaintance, though not a friend, before this item arrived in the mail. Allow me to explain how this happened.

I began writing notes to thank people for flowers, gifts of food, etc. a couple weeks ago. I think it's fair to say that I was thinking on paper as I wrote. Friends who know that I cared for Mom 24/7 for 15 months understand that did not allow me to work away from home and that money was always tight. I did freelance, still do and that kept us in grocery money and paid for other necessities but it didn't pay for everything. So I used Mom's savings and mine to keep her in this house rather than move her into a nursing home. I understand that changes like that can really send someone with Alzheimer's into the abyss. And I was glad that I was able to do that but, toward the end, I was worried about how I would be able to continue when I had no more savings to dip into. When I wrote in several of my acknowledgements that I was "broke until I found a job" it was an expression of relief because now I can seek additional work. In that context, it never occurred to me that anyone who knew Mom and me would twist that statement into a request for a handout.

I am also free to work away from home now. And I'm looking for work opportunities. My household income has been reduced by the loss of Mom's pension but so have the bills for medicine, that increased exponentially when she fell into the Medicare Rx "donut" hole, and other items necessary to Mom's care. My concerns about finances were exacerbated for months by the fact that I could not leave Mom alone to go out to work. Now I can. One of my first orders of business was to let people know I am looking for work, hence my comment. And I have gotten some employment leads and client referrals as a result!

But when I first read it, I was really nonplussed. I guess I can see how someone might misinterpret my words, especially someone who is not particularly close to me and has not kept in touch during Mom's long decline. But wouldn't the most appropriate thing to do assuming she really did interpret this as a request for money be to ignore it? Instead, I got this really hurtful letter. One friend who read the "nasty gram" cautioned me to keep in mind that the interpretation only proved that, although I was the one grieving, the writer thought it was "all about her."

But the law of unintended consequences kicked in. Although I had wept often in the days leading up to Mom's death, I had been unable to cry since. Even at the memorial service I only shed a few tears -- for which I was grateful since I hate to lose my composure in public. But that spiteful note did the trick. I cried for the rest of the day and most of the night remembering all I had lost and also the grievances I had been hanging on to regarding people and things whom I felt had used Mom ill over the years. The next afternoon I realized that I was no longer numb so there was hope that I could begin to work through this loss because I could cry for Mom and for myself. And I realized something else.

Over a year ago, I was in a difficult place emotionally. My circumstances left me feeling beat down by life. And there were a few individuals who had exacerbated that feeling by kicking me when I was down. Life is like that. And most "blows" don't bother us when we are going strong but take a tremendous toll when we are not. A friend sent me an article about how hanging on to resentment robs one of energy. Realizing that I could not afford to spend the limited energy that I had on resenting people who had added to my burdens or declined to lighten them when they had the power. So I decided I had to forgive and forget and get past those injuries. I did. And I felt better. I landed a couple of freelance clients, which really helped me through that 15-month incarceration. But that letter reminded me that there were some resentments that I had only buried, particularly with regard to persons who had added to Mom's burdens because the writer was one of them. I had put that out of my mind but, the letter brought those memories of how hurt Mom was rushing back. And I knew that I could not carry that weight around with me.

I made up my mind to forgive the injury. I confess that I found it harder to forgive someone who hurt Mom but I am working my way toward it, ever mindful of the fact that doing so releases ME from the prison of my resentment and allows the positive energy to flow. I've come a long way already but still have a ways to go.

Rebooting

The past week is almost a blur. I have been trying to repair my sleep deficit. I haven't even begun to answer cards and flowers but people were very kind.

One of the things that I enjoyed after the service was stories about Mom that people shared with me so I would like to ask you to send me remembrances of Mom and, if you don't mind, I will post them.

Thanks!

Exhaustion

I am so tired right now that I can hardly function. The telephone started at shortly after 9 a.m. and has punctuated the day. I was glad to hear from everyone who called but not able to function as well as I will when I have had some rest. I napped between calls until about 11:30 when I decided I was more hungry than sleepy. Friends who have brought by already prepared food and snacks are a real Godsend. I don't feel like cooking.

We are making plans for the service. I think it will be very nice and that she would approve. Rather than gloom and doom, we are going for something with a positive message. And I have to note that thinking about the service has been good comfort "therapy" yesterday and today. It doesn't take my full faculties to leaf through the hymnbook and think about music she would like or that might be comforting to those of us who are left. I spent part of yesterday selecting scriptural passages that I thought fitting. I choose to include one that my father helped me to memorize years ago because it became special to us. I recited it at a church service that recognized the study and work of members of the Girls Auxiliary of the Woman's Missionary Union, Mom was GA director at the time. It's a long passage and it took me some time to master it. After that, whenever we heard it, it was like a private signal between us reminding us of that time in our life before we lost my dad.

Bill used to be my "next door neighbor" at school. His office was next to mine as I was one of those invasive members of the communication arts department who were sprinkled throughout Fulton Hall in the midst of other departmental offices. I was surrounded by the music department of which he is a faculty member. He's arranging the music for the service so I know it will be lovely. My neighbor, Ruth, who works for the school board is reading a poem by John Donne and another former neighbor, who still works at the church office on the other side of me is going to read that special passage of scripture. There's no one left but me who would fully understand the significance of that passage to our family, so that's something that is just for me.

Two of my former students, and close personal friends, are preparing Mom's Eulogy. I am thrilled. I know that it will be lovely and that it will strike just the right note. One of them was her regular Tuesday night sitter when I was still teaching and they became very fond of one another. The other student is possibly a distant relative of Mom (but we claim her regardless) and on a couple of occasions when she spent time with Mom, she got to hear tales of Mom's life as a child that including living on Assateague Island, very near when this student now lives at Chincoteague. Mom went to school to hear their research presentation at the Undergraduate Research Conference and thought that they were very special, which they are.

I've had condolences from folks who knew Mom and others who only know me but know about the role she played in my life. Those have meant a great deal to me. The ones that came via email I will have to print out and save. Some of them are just lovely. Knowing what her life and personality meant to others is a great comfort.

Mom has been wanting to "go home" for months, and now she has. I'm more tired than anything else right now. I have grieved for the past week because I knew it was coming. Now we can both rest.

Pennagal



Obituary

Frances ---------, 86, died yesterday at her home in Salisbury from complications of Alzheimer’s.

------------- was born near Snow Hill in 1921 and was the daughter of Samuel --------- and Daisey ----------. Her husband Vaughn --------- died in 1971.

Surviving are her daughter, Ann ------, a nephew, Edward -------., both of Salisbury, and honorary daughter, Mary -------- of Williamstown, PA. She also leaves a brother, Samuel -----------, of Salisbury, and a nephew, Kenneth ------- of Brick, NJ, six grandnieces and three grandnephews and two great-grandnieces and several cousins. Her brother, Edward --------, and her nephew, Samuel -------, preceded her in death.

When she was active, she volunteered many hours to church and charity work. For several years, she co-wrote a cooking column with her daughter in Rural Living Magazine. She made a home for both her parents in their final years. Many Salisbury residents will remember waving to her while she worked in her Newtown garden.

A celebration of her life will be held on Saturday, May 24 at ---------- in Salisbury at 3 p.m. Friends may call an hour before the service.

Laughter is Good Medicine

It's good to laugh. It releases endorphins that enhance your mood in a positive way. And through all this, we have laughed.

The minister who will conduct Mom's service knew both my parents and we were musing about how long she had been a widow. "She never remarried?" he said. So I told him the true story of the old widowers at the church who tried to court Mom after dad died. And how she gently but firmly declined their advances. She told me once, that she would never find another man who would put up with her like my dad, and then added, with a twinkle in her eye, that if she got hooked up with some old geezer and he ticked her off, she'd hate to have to shoot him. Now that is the God's honest, truth so no wonder my support group friends describe her as feisty!

And we enjoyed another joke today. When everyone was here cleaning and neatening on Saturday they discovered a giant economy-sized box of oatmeal was "leaking" flakes of oats. When I took it out of the bag, I discovered this but I put it on the shelf intending to transfer it to the one I had almost emptied (I'm trying to lower my cholesterol before I get blood work done). The crew -- I had gone on a work-related errand -- decided to toss it, not realizing I had just brought it home from the store. So I looked in vain for it on Sunday and finally called Ed to see if he knew what happened to it. He was working outside but shouted an explanation to his wife who relayed it to me and we made a joke of it.

I confess that the more I told it, the funnier it seemed. People come over and tell you they are going to help you straighten things up and they throw out your oatmeal. So I shared it with my cousins who came to visit today and one brought me oatmeal when she returned later in the day to visit with another cousin who was coming. When Ed came over tonight, he brought a box, too, saying his wife told him he better replace it since he's the one who threw it out. So we have all laughed about the oatmeal today and it will no doubt become a family story that we share as the years go by.

Not everything that's going on is funny but we haven't lost our sense of humor. It's part of what makes us human. And Mom would have laughed with us if she could.

Gasping for Air

I woke with a start before light this morning. Mom’s breathing had changed. She was breathing through her mouth and it was wide open. The sound was louder and even though I was in the next room sleeping in my La-Z-Boy, I heard it. I went in to check on her and she was breathing evenly but it appeared to be labored. I moistened one of those swabs and did her lips and teeth and put salve on them. She shut her mouth, of course, the way she has been doing when presented with food or drink and when I finished, she started breathing through her mouth again.

I thought about what to do and decided it was not an emergency so I would not call anyone, although now I realize I could have. I woke again at a little after 8:20 a.m. when the phone rang – I am a very popular person because my days and nights have been so full that I have not had time (or the presence of mind) to sit down with the bills. Plus I had to close one checking account and open another and have a limited supply of checks.

I missed a small payment to Lowe’s and although I have explained this to each person from Pakistan or India who has called – they call regularly on Mondays, Wednesdays and Fridays between 8:15 and 8:45 -- that I have had my hands full on account of mother. On Friday, I got a bill for $61, two payments and a late fee. So we are talking about serious money here. I know Lowes is anal retentive having once been late with a $15 payment and, as a consequence, been unable to charge a can of spray paint. You know, Lowes could probably cut the price of their merchandise substantially if they were not supporting so many collections callers on the other side of the globe. When this is over, I think I will write and suggest that. Comcast, on the other hand, has called several times about a bill of $17. No one at Comcast looked at the computer record of payments and found that about every three months they get a check for $50-60 so they will go away for a while. But the last caller was someone who could think for himself; I asked what I owed and when he told me, he agreed it was just a little ridiculous to badger someone over such a piddly sum. It’s not like they have not always gotten paid. But someone else at Comcast did not get the message and called again this evening -- but I did learn that they will come and pick up the check and save me 41 cents! Hooray!

My intention was to pay the bills over the weekend but I had a crew of volunteers helping me clean and neaten the house to get ready for what’s coming. I thought the most logical thing to do was to work with them to get things in shape while I had help. They still left me with a number of half-finished tasks that only I can do and that now I have to do since they have been started. But, the place almost looks like it did when Mom kept house. And now that I can get around in my office, it will soon look like it used to, also. A student who visited me on Sunday was shocked at the mess in my office and said that the mess told her a lot because she recalls how neat and orderly my office was at school.

But I think Phyllis put it into perspective when she outlined what I HAD to do: cook, do laundry, do personal care for Mom, etc. and try to freelance so I could afford to buy groceries, that I was doing about all I could manage alone. I wish I had had so many helpers to come over the past year, maybe not all at once, but one or two at a time. Things would be in better order. And, frankly, when I had a moment or two to do anything, I cleaned the kitchen, Mom’s bedroom and bath, or I went out and weeded the flowers for a few minutes. Once in a while, I even ironed a few clothes for Mom or me. Every week, and more often in the summer, Mom got her hair washed and styled, a manicure and pedicure, a bath from skin out and we used to joke that I "anointed" her with skin lotion because her skin had become so dry. I massaged her feet and legs and we joked about the level of service she got. In the summer, she always got a second bath if not hair washed. She didn’t do much but it’s still important to feel fresh and clean. Mom has been unable to do any of that for herself for more than two years now.

She always thanked me profusely and when I was teaching, I had night classes on Tuesday and Thursday so we did baths on Tuesday and Saturday mornings. Before she graduated, Ariel came every Tuesday evening and Mom always told her she’d had her hair done and her bath -- it was a major highlight of her week. On Saturdays, we went out to eat and then to shop for groceries until it got so that Mom could not walk around the store with me. Even then, we sometimes managed by putting her in a wheel chair with a basket on it. As her condition progressed, Mom had great difficulty getting in and out of the tub and she often did not want a bath, but she put up with it and always felt better after. The “carrot” of dinner at some place where she could eat with her hands (such as Chick-Fil-A) was a suitable reward for what she had to go through. We sometimes went to IHOP but that became difficult because feeding her across the slightly too wide table or from directly beside her was difficult and she had trouble after a while not only cutting her food but managing the fork. After a time, she would opt to sit in the car while I grocery shopped, which worked until one evening she got out of the car with assistance from two total strangers -- luckily I returned to the car as they were coming from it and nipped that in the bud. I don't think they meant any harm but I felt very uncomfortable and, after that, Mom stayed at home on her own while I rushed out and shopped maybe half of my list and rushed back.

It seems to me that she went down hill very quickly. It was less than two months ago that we ate together at IHOP. I had to feed her but she ate most of her dinner. She loved pancakes with sweet stuff, syrup or cooked fruit. She was failing but she was mobile. I suppose I should be thankful that this stage is going by quickly. And the early part of the week when she refused to eat forced me to accept that she is going, and soon. “To everything there is a time and a season under heaven....”

Death Watch

It would be disingenuous to call it anything else. We are waiting for Mom to die. She can take as LONG as she wants and I’d give anything to see her return to health but I know that is not to be. Death is a natural conclusion to a life well-lived or otherwise. And I am so thankful that we’ve been able to keep her at home. Not many people get to die in their own beds these days.

I am amazed that her body continues to function and produce waste when she has taken nothing, not even a sip of water in days. Eating stopped mid-week, the last attempt to give her a drink of water was Friday. Just running the moistened swab around her mouth yesterday dribbled enough water into her mouth to make her choke. Now I’m afraid to do much at all. I did try squeezing out all the excess moisture and cleaning her teeth with it but I was nervous about that. Ed sat with her last night so I could service a PR client (publicity for a special event) and he had the same experience.

This morning, after I changed her bed pad and propped her up a bit to take her weight off her sore, I asked her if she was comfortable and she tried to answer. I believe she knows that someone is there trying to care for her. I hope she knows it’s me. But her eyes appear not to see anything. Phyllis and Carol came to help me today to continue to neaten and clean. Each of them took turns going in to see Mom and let her know they were here.

Because death is imminent, several friends have been trying to helping me get the house in order. We've marveled that she is still breathing as she looks so small and frail now. Carol said she thinks she is waiting to die until I get the house presentable for visitors. That would be just like Mom. She would want everything to be clean.

The worst room in the house is the library, which I took over for a downstairs office about 10 years ago. I had everything I needed and a couch and chair to sit it when discussing a job with clients. But we stuck the TV in the corner in an entertainment center. When the couch became too low for Mom, she took the chair and later I got a lounge chair because I was having so much difficulty with fibromyalgia and it was a place for me to get a respite. So we had to also get rid of the small sofa. We found Mom a recliner, too, which she planted a chair in front of my filing cabinets in the office – the only place to put a chair and be able to see the TV closed up in the corner cabinet.

I protested at the time saying we should just move the TV to the living room and be sure we both had a place to sit that was comfortable for the evening but, Mom has always been the boss and she wanted to be where I was. So the office has piled up until it is truly a landfill. I couldn’t get to the filing cabinets without moving Mom and her chair and for the past three years that has not been even a temporary option.

Somewhere along the way Mom started feeding one of the cats in the office on a rolling cart under the window. That created quite a mess because cats are not fastidious eaters. They like to take food out of the dish and eat it off the floor or whatever. And if Katie Cat was hungry and we did not notice, she would smack a food dish into the floor (it didn't matter if it wasn't empty). Then she got sick and started tossing as much as she ate. To clean it up required moving Mom and the chair. When I took over feeding the cat about two years ago, I moved her feeding area back to the kitchen but the damage had been done and some of it was where I couldn’t see it unless I moved Mom out of her corner. Places like under the radiator or under the rolling cart. When I realized that crumbs of cat food had fallen into a basket of genealogy papers by the cart, I gave up trying to keep the area clean.

Truly, I did not have time. Up until a year ago, I was still working at the college. It was all I could do to keep Mom clean and in clean laundry, grocery shop and cook and feed Mom by hand for the past six months. I kept Mom’s room and her bathroom in shape, kept the kitchen clean and the dishes done. But by the time I finished that and did something to bring in a few kopeks I was pretty well done in.

About three weeks ago, I guess, Mom took to bed. I got behind the chair and picked up a lot of kitty “litter” including paper plates she had knocked behind the furniture around her eating area and removing various piles of disgusting stuff but then Mom became completely incontinent and between trying to keep current with writing assignments and keep her dry and comfortable (and until this week trying to get her to eat something), I just didn’t get back to it until today. I picked up everything I could and ran the vacuum over the remains. Now I need to scrub. But the weather is rainy and damp today and I am really hurting so I think I will try again tomorrow. Maybe I can do something useful that doesn’t require much physical work.

I'm thankful that I did not have to go out today for milk and a few other things I needed. Rebecca, one of my former students who was always special but is now like family, grocery shopped for me and brought the things I was out of. So now I can sit and relax a bit. She brought half and half which makes coffee a treat and tea bags. Triona sent me one of those darling little tea pot and cup combinations that I am dying to try. Tea might be better although I am so tired these days that coffee will not keep me awake. I guess the deciding factor will be if there is any left in the carafe.

Hospice came today

The folks from hospice came today. The woman who came to do the intake was a gal I went to high school with. She filled out all the paperwork and got us set up. Around 5 p.m. the nurse came to do an evaluation. She’s not the nurse who will come regularly but she does the evaluations. And she showed me several things I can do to make Mom more comfortable.

Not knowing about these things, I learned today that if someone in Mom’s condition lies on one position long enough it can cause bed sores in all kinds of places. Her skin is very thin and dry and just the heel resting on the sheet had rubbed a sore on both feet. I was sick. I keep her in socks to keep her feet and legs warm and I hadn’t thought to take them off this week and examine her feet. And she apparently does not feel any pain.

She had a spot on her rump from overnight wetness. It happened the second or third night because I didn’t want to wake her as she was sleeping so soundly. I should have. I couldn’t figure out how to keep her off of it because no matter what I did she rolled back over on her back. The nurse showed me how to roll her up on her bed pad and put a pillow under her and ease her back onto it so that one side is propped up a bit. It looked easy when she did it. It wasn’t too bad when I did it the first time. But when I changed her diaper pad I had to move her all the way over and she moaned a bit as I brought her back.

She soon settled back and is asleep again. She doesn’t respond at all now. This morning she responded when I said good morning but that’s the last word I’ve heard. I wonder if I will ever hear her say anything again. Just a few days ago, I lay down beside her and put my head over close to her and she stroked my hair. I was upset because she wouldn’t eat for me. She tried to comfort me. Still Mom. But no more.

I never did get my bath today. Heck, I didn’t even get to brush my teeth. I was up late, checking on her. When she appeared to be sleeping soundly, I finally collapsed in my chair and that was after 2 a.m. I was awake at 5 a.m. and checked on her. When I went back to sleep I slept like a log. The phone woke me this morning and I got up at quarter ‘til nine but I was in a fog. However, the phone kept ringing so I just fell into my usual routine. Start coffee, change Mom, try to get her to take water. She didn’t want that either and now I know I should not try.

I think I will brush my teeth, at least, and try to get some rest now. Emma wants me to go to bed so she can curl up with me. I know she is an unusually affectionate cat but I think she senses that I need her comfort. She spent much of last night sacked out on my chest with her head up under my jaw. She must understand that Mom needs comfort, too. She gets on the bed with Mom for afternoon naps most days and today she went into Mom’s room with me each time I did and even accompanied the nurses. I guess she thinks she needs to supervise.

Arming yourself with information

This is an article that anyone who is confronted with Alzheimer's should read. It's full of information that your doctor might not have told you but which helps you to put the situation in perspective. I highly recommend it!

http://www.alternet.org/healthwellness/85532/?cID=908601#c908601

I wish I had started this blog long ago

It seems like all this has happened overnight when I know that's not so. Her declining mental abilities were apparent by age 82 and she is now 86 but the process is so overwhelming. I realized today that I have been going at a frantic place to provide for her needs, including working to keep a roof over our heads and food on the table. Working from home has advantages and disadvantages, one of which is that you don't make as much money. And when Mom was like a worm on a hot brick, she was a hand-full. Trying to pacify her and also focus on a writing assignment could be tough. But I would trade the quiet for the distractions now.

Two cousins came this morning and visited with me for a while, visited with Mom and helped with a few things that needed doing around the house. I could have used that kind of help for months. And, unfortunately, I think some of it might have been available had I only known. I just didn't and with money so tight, I was afraid to ask. Clearly, when Alzheimer's attacks a family unit, there needs to be some sort of case management available and covered by Medicare, to help the caregiver get his/her bearings. Having it out there on the web or in print doesn't help a person who has so much to do that some days they don't have time to brush their teeth. That hasn't happened often but it has happened. Or the day has gotten away from me, especially if I slept in the chair downstairs, and by the time I brushed and flossed, it was bedtime.

The doctor observed when we spoke the other day that I had probably denied myself routine medical care because I was afraid to leave her. True, I have not had all the check-ups, blood work and so forth that I should have had but until the past few months, the reason was that I had no medical coverage and little free cash. But I will say that for the past year, it's been as much a case of being stretched too thin as the money problems. I have witnessed elder poverty first hand; in fact, I have shared it.

Ed, another cousin, came by after work and we both tried to persuade her to eat some ice cream but had no luck. It's frustrating -- it's been frustrating. But now it is also sad.

Keeping vigil

Today, Mom doesn't want to drink anything. I'm doing what I can to maker her comfortable and she is sleeping peacefully most of the time. I think she hates to have her diaper changed. I have to turn her over on her side, first right then left, to get the diaper in place. I'd like for her to lay on her side for a while to give the bed sore she has developed some air but she is miserable for the short time it takes me to change her so that's out. I apply ointment to guard against diaper rash and plenty of Gold Bond powder and tuck her in again.

I don't think it will be long now.

I am having difficulty to focus on even the simplest tasks. When I try to talk with someone, I start to cry. About the only thing I can do is to write. And I am too tired to do much of that now.

I've got to write Mom's obituary. She told me a long time ago what photo to use. Funny how you think of these things. So I called about that today and found out what is involved. I'm trying to find mindless things to keep me busy, I guess. It's not working too well.

I'm from the government and I'm here to help you

It’s a joke among our kinfolk in the mountains of Virginia and Tennessee that when someone comes from the government offering help to look out!

I want to tell you about how the government helps you to care for your elderly family members at home.

Mom has forgotten how to walk. For some time she’d been having difficulty at times, which is why we moved her downstairs and none to soon. About three weeks ago we went to the doctor and by the time I got her down the front steps and into the car I was exhausted. We drove the short distance to the doctor’s office and slowly made our way the few steps from the street to the office and down the stairs there, which was difficult but not impossible. And we came home and I got her inside with difficulty but I managed it myself.

To help with her increasing infirmity, the doctor wrote a prescription for adult diapers. One of my friends had told me Medicare would cover it. Turns out that Medicare will cover diapers and bed pads if she is institutionalized and there is a medical support staff on hand to change them but they won’t cover them if you are caring for your mother at home. It could be worse, we are looking at less than $30/week for that but it would be nice if they were covered.

Two days after our visit to the doctor, I had to run some errands and Mom wanted to go with me. I got her into the car with some difficulty but I managed. She slept during most of the ride – that’s actually an improvement over her trying to tell me how to drive – but she was glad to be with me. When we got home, however, and she got out of the car, her body turned to rubber. She could not remember how to lock her knees into position so she could stand. Nothing I did was helping and before I could figure out what to do on my own, the neighbor’s gardener came running across the street and insisted he help us. I don’t know if I could have managed her on my own but it was too much for Mom who just went limp and he practically carried her into the house. She did not improve over the rest of the day and getting her into the bathroom and onto the toilet was a nightmare. I finally got her into bed and, collapsed.

The next day she came to my library/office and sat with me as usual. Her walking was unsteady, but better. Getting her into the bathroom was a little easier but that evening she had a major accident in bed. I was able to get her to the bathroom and we proceeded to do a bath as we had been with her sitting on a small bench in the tub. All went well getting her in and getting her clean. Then as I tried to get her out, we had a repeat of her legs turning to rubber. I was alone, of course, so I had to try to break her fall as she went down into the tub. After a struggle I got her back onto her bathing bench and cast about for a way to get her out of the tub short of calling the Fire Department.

These are the times I would call someone for help if I had someone to call but I have only Ed and he cannot be reached at work. He doesn’t carry a cell phone and I don’t blame him.

It finally occurred to me that I could wrap the bath towel around her under her arms and use that to get a grip on her wet skin. And that was how I lifted her main strength out of the tub and dragged her the perhaps eight feet to her bed. We both sort of fell on the bed and, when I caught my breath, I moved a chair around to the side of the bed and prepared it with a towel and hauled her over and into it. From there we did the usual after bath drying, applying of body lotion, powder, etc. I got her into her pajamas and she sat back wrapped in something warm while I stripped the bed, and applied vinegar to the wet mattress to neutralize the smell of urine. I got it partly dry with the hair dryer, dusted it with talcum powder made a makeshift rubber sheet from a yard trash bag and redressed the bed.

She sat up for a while in her chair in the bedroom but we did not attempt to transport her to the library even though it is only a short walk. After a while she told me she was tired and wanted to lie down so I put her back to bed.

The next morning her bed was dry and so was she but we kept the diapers on just in case. She went to the bathroom as usual, sat in her chair for a while but didn’t leave her room. She can look through the hall and see me at the computer and we can hear each other. And Emma has begun to take her afternoon naps with Mom. But dry beds in the morning didn’t last. After the third episode of changing everything from mattress out I went looking for a rubber sheet.

While I was getting it, one of the staff saw me eyeing the wheel chair and told me she could get one through Medicare. We looked at one that was really sturdy and would hold a hefty adult and one that would fold and fit into the back of the car trunk. That one seemed perfect. The doctor wrote a prescription and faxed it to the drug store. I went back the next day and was all set to bring one home.

However, only the $600 wheelchair is covered through Medicare and would only cost me $120. However that was big heavy-duty chair that doesn’t fold up. You would have to have a van with a lift to take her anywhere in the car. My thought had been to get her down the steps and then into the wheel chair and then from the chair into the car and after we got where we were going, she could ride in her chair. We borrow one to use in the mall and it makes it so much easier on both of us. But the one I wanted, was $250 and Medicare didn’t cover it. I decided to wait until after the 3rd of the month (social security checks). Another friend said, in the meantime, I should look around to see if I could find one used. Good idea.

I’m kind of glad now that I didn’t get the wheelchair because I don’t think we will have any use for it. I don’t believe Mom will ever leave the house again under her own steam, with or without assistance. In just over a week’s time, she has gone from mobile (if shaky), with assistance, to bed-ridden. The doctor told me it was coming but we are both surprised at how fast. I have not attempted the tub again. All I can manage is a sponge bath. The first we did in the bathroom but now she cannot stand for that either and I haven’t figured out how to hold her up at the sink and bathe her at the same time – I would need four hands.

She hasn’t gotten out of bed for 10 days except for when she has soaked the sheets. I start the day by changing her. I sponge bathe and pat dry the wet area, apply A&D ointment to prevent diaper rash, and Gold Bond powder. Then I wash her face and hands and try to get her to eat. Every other day I change her pajama top.

Today I replenished my supply of diapers. My friend, Carol, was right; the Affirm brand diapers, at Target, are much cheaper than Depends and they work fine. I have been reluctant to put soap on her since I can’t rinse her off like I did in the shower so I got some baby wipes. I’d been using the body lotion (not the best idea).

What I’ve learned might prepare me to start a mail order catalogue for eldercare products. Of course, Medicare would not cover them in order for you to be able to keep your loved ones at home. If everyone did that, it would put the nursing homes out of business. I just can’t do that to Mom. It would rob her of what little dignity she has left.

Depression as a side effect

I've heard about depression often being a by-product of serious illness and I've experienced it firsthand -- a little post surgery blues that dissapated when I started feeling like my old self again. But it didn't occur to me that it could be a side-effect of caring for someone who is ill. The possible causes are (1) the grind, because it does get old, (2) feeling helpless or overwhelmed and (3) realizing that your efforts are wasted is so far as making someone better is concerned. In the past few days I have discovered another cause of depression and that's knowing that time is short.

Several times a day, I try to get Mom to eat. She might have eaten a tablespoon of yogurt for breakfast. A little later I had some luck with ice cream. She might have eaten a quarter of a cup. Later I tried a milk shake and got maybe a tablespoon into her. Several times today she drank water or coffee but not much. She takes the straw in her mouth to please me but does nothing with it. I don't know how long this can go on. But I think, it can't go on for very long.

Happy Mother's Day

I could not let Mother’s Day pass without a blog entry.

Over the past few days, Mom’s determination NOT to eat seems to be increasing. And I have tried everything I can think of.

Something that Mom used to make for me as a child, particularly if I was under the weather with a sore throat, was egg custard. So I made it for Mom. I thought surely she would eat that since it requires no chewing. But, alas, I failed to convince her to eat it. Perhaps I used too little sugar. I thought that, if she would not eat it, I would, rather than let it go to waste, and I don’t need the sugar. But I think I am grasping at straws for an explanation. She just didn’t want it.

Having had good luck with oatmeal one day, I tried it again. And I talked up some bananas I had brought home from the store because she used to like that on her oatmeal. She seemed pleased at the prospect but by the time I brought it in, she wasn’t about to eat it. Please to “open your mouth, Mom,” are met with a slight pucker that shuts down firmly on the bowl of the spoon before I could get it more than half an inch into her mouth. So I was only getting the most miniscule portion of a cereal inside and she “chewed” on that for some time before spitting it out.

I remembered that I had bought a box of baby oatmeal thinking that it might be something I could mix with baby food for our sick cat who died before I could try it. So it was there still in its seal from the store waiting for the next food drive and I thought “why not.” So I mixed it with water and heated it and then added some cream to cool it. It was thin enough to sip through a straw. I sweetened it and put it in a cup. I managed to get possibly a tablespoon into Mom through a straw. I’m thinking that once she figured out this was food, she decided she did not want it.

I’m desperate to get some protein into her and the last time I tried grinding cooked meat into very fine particles I found that it no longer worked. Part of the problem now seems to be that if it is barely warm, it is suspect now. I guess that says food. So I tried potted meat that I had brought from the store in hopes that it would work. I spread it on very thin slices of a yeast roll and she nibbled it but the second bite she just rolled around until she could spit it out.

I brought home some Eagle Brand sweetened condensed milk yesterday and put it in the blender with ice and banana and whipped up a lovely banana milk shake. She sipped about a tablespoon total over three sessions of coaxing her. If she would eat that it would be very nourishing but she complained it was too rich. I think maybe I might try with strawberries later today and add some milk to make it less intense. But I am close to my wit’s end.

This morning I got some coffee into her and talked up fresh local peas that I had bought at Harris's Market. She seemed enthusiastic but I don’t know if she will eat them. I am willing to puree them if that will help. I also got some local asparagus and strawberries. I just don’t know what kind of luck I will have. But that food processor has certainly been useful lately.

She’s lost her interest in flowers, too, and that’s not at all like her. We’ve had lots of rain and it beat down some of the hybrid iris that are far too heavy for their stems, so I cut them and brought them in and put them in a large vase in her room. The aroma is sweet and powerful. She acknowledged them after I called her attention to them but wasn’t terribly interested. I looked at Mother’s Day cards in the grocery store but couldn’t choose one – instead I cried as I looked at them. But I couldn’t let the day go unmarked so I brought her a pretty begonia with a bloom the size of a silver dollar shaped like a rose. She did admire it but her interest in flowers has faded.

I changed her top; I’ve left off pajama bottoms now as they just get wet. But I put a pretty new one on her this morning after her diaper change and quicky bath and somehow managed to haul her about a foot closer to the head of the bed so she is sort of sitting up. She drank her coffee but didn’t want food.

I have a new batch of things to try to day: fruit sorbet, a peach smoothie from Boost and the fresh veggies I brought home. But I don’t know if anything in my food arsenal will work. I sat beside her on the bed with my back in an awkward position for which I will probably pay later and shelled the peas and talked about them and how Mom Mom used to grow peas and asked if she wanted me to put dumplings in them. She finally decided that she might. So they are simmering on the stove and it’s almost time to add the dumplings. Wish me luck!

U.S. Healthcare and Alzheimer's

It seems that Mom is going down very fast. If a couple of weeks have passed since you saw her last, the change would be impossible to ignore. As her needs have increased, I've tried to find ways to provide for them. Of course, the more that is required of me, the less there is of me to go around for everything else but that's just how it is.

When this first began -- and it took me a while to acknowledge what was happening. At first, she went on her own. Then she could not always find her way to the bathroom. Finally, she was afraid to go alone. She was perfectly content to have her nephew accompany her if he was sitting for me to do something. Because I tried to take Mom with me on errands (so she would not be left alone and because she liked to ride in the care), the worst problem I had to cope with initially was that despite going to the potty before we left home, she would decide that she absolutely HAD to go as soon as we got into a store. Sometimes she really didn't but I wasn't taking any chances.

Some public restrooms are more user-friendly than others but this experience always put me in a tizzy. There was enough thinking power left that Mom did not want to "sit" on a public toilet but if she just squatted urine went everywhere. (I learned that the hard way when I left her to go on her own in our motel room last summer.) If there were seat covers, I used them and convinced her that it was okay to sit on them. However, keeping them in place while she sat was sometimes a circus. If there was no seat cover, I would make one from toilet paper and try to keep it in place as she sat. I'm sure there is a comedy routine in there somewhere.

I discovered adult diapers. We started with Poise pads and then graduated to the panty as a safeguard for days when we went out. This was our routine for a while and we probably used no more than a package of the diapers in six months. But suddenly her ability to judge her needs lessened considerably and after two or three clean-ups -- more often associated with a bowel movement than the need to relieve her bladder, I decided that she could wear them overnight when things flared up.

About two weeks ago, however, her ability to walk became the issue. She seemed unable to put one foot after the other or even stand up by herself or holding on to something. When she needed to bend her knees to sit on the toilet, she was unable to figure out how to do that. When she needed to lock her knees in place to stand at the sink to wash her hands, she was unable to that either. I decided the time had come for full-time use of this elder care aid and the doctor told me "don't knock Depends, they're a Godsend!" So now I change her diapers.

But what was interesting was that a friend told me Medicare would cover diapers. The doctor and the druggist thought so, too. But when he submitted the claim, he learned that Medicare will cover diapers and bed pads for the elderly in a nursing home (where there are multiple staff persons to handle the patient and a laundry) that a patient whose family is trying to keep him/her at home are on their own. Only the federal government would think that was a reasonable solution.

Fortunately, I learned from a friend that Target has their own brand, Affirm, which is cheaper than Depends at Wal-Mart. It's a 35-40 percent savings. But it's one more indication of how our elder care policies are geared to the elder care industry rather than to the patient and his family. More on that in a future blog.

Cake for Breakfast

Recently, I bought cake for a group meeting and ended up bringing home two kinds of leftover cake. Mom, whose appetite has whithered, enjoyed it so much that I served her carrot cake for breakfast and chocolate cake for dessert after dinner. That's why when I was thinking about trying to keep some sort of written record of this experience that the name for my blog first occurred to me -- Cake for Breakfast.

One of the casualties of Alzheimer's for Mom has been her appetite. When I was still trying to work and care for mom, I always planned dessert as well as a balanced meal for her and her sitter. She ate better when someone ate with her and seemed to enjoy the dishes I prepared for her. But gradually, getting her to eat became a problem. The first problem was a sick stomach that we decided might be attributed to her meds. We changed them and her appetite picked up again, but it didn't last long. She ate less and less.

Possibly, her taste buds don't respond to food the way they used to. At first, I attributed her waning interest in food to her trouble using the utensils. When a knife and fork were too much to manage, I substituted a spoon. But as time passed the only thing that worked was her fingers. Eventually, even that was a problem and I began to feed her. Sometimes she would refuse her dinner but want dessert. Sometimes I could use the prospect of dessert to persuade her to eat some of the meal I had prepared. But that no longer works. I can't even get her to drink Ensure.

Sometimes she asks for something, like mashed potatoes yesterday, but she may not stay awake long enough to eat what she's requested. At other times she purses her lips together tightly and refuses to allow the spoon to pass her lips. And she may hold the world record for number of times she chews her food. When she really doesn't want it, she waits until you are out of sight and spits it out, wherever.

Although her interest in food continues to wane, she retains enjoyment of sweet stuff, especially ice cream. The doctor said that ice cream was good for her whenever she wanted it so we keep a supply. But as I fed her minuscule dabs of ice cream yesterday, I wondered how long that will last.

I wouldn't have believed it...

I really wouldn't have believed it if someone had told me a few years ago that I'd be changing diapers at my age (50-something). I have no children but my 80-something mother has Alzheimer's and her descent into the vagaries of that disease has been swift and unrelenting.

She's not the first in her family to succumb to Alzheimer's. Two of her aunts wandered into the fog and never returned to the world the rest of us share. But my mother was a strong woman who cared for an invalid husband and two elderly parents and was still going strong and working part time into her 80s. She enjoyed her family, her garden, homemaking and was always busy with something.

The frail woman lying in the next room is a shadow of her former self.

I don't know how deep her descent is because she has lost her language skills and is often unable to make herself understood. I became pretty good at guessing what she wanted for a while there but now, even that is slipping away. Much of the time, what I say doesn't penetrate either. Sometimes I forget that she isn't deaf, I raise my voice as if that will penetrate the darkness that surrounds her. For a while there, she would look at me sometimes -- a glimmer of her former self visible -- as she scolded me "you don't need to shout." I soon learned that when, in frustration, I did shout, my message was lost anyway, unheard over the internal dialog that was trying to formulate an appropriate rebuke for a daughter who dared to shout at her Mom.

But today has been a good day. She had difficulty waking up but that allowed me to change her diaper around noon without her being aware of the process. Her response to queries about breakfast were vague but finally she managed "later." I let her go back to sleep. When she was finally awake, I persuaded her to eat perhaps two small scoops or peach ice cream. It's the most she's eaten at one time in days.

A short time later, when she asked me about supper later I was encouraged. I offered all sorts of things in hopes that one would pique her interest. She finally agreed she could try to eat some mashed potoates. I got them ready right away and she ate three little tastes before saying she had enough. Maybe I should have made gravy. If, as she hinted, she will try again later to eat something, I will.