Why I Keep My Mother at Home

My mother has mid-stage probable Alzheimer's Disease or some related dementia and as my friend Susan says, "has become toxic." This week she is suspicious of and furious with me because of the form we need to fill out for her Long Term Care (LTC) Insurer. It requires her caregiver to mark the amount of time she spends on each task listed at the bottom of the form. Toileting, transferring, bathing and other Activities of Daily Living (ADL) are arrayed in the little box at the end of the page. So are "constant supervision due to cognitive limitations" and "medication supervision," as well as "cuing" for other ADLs, all of which apply. The major task in taking care of my mother is to be present, as she shouldn't be home alone anymore for the whole day. And when one of mom's three insidious chronic diseases present themselves, she needs ferrying to the doctor's office sometimes multiple times a day. Plus, someone should be there to make sure she eats, is safe getting in and out of the shower and dressing.

The problem comes because my mother doesn't think anything is wrong with her so she wants her caregiver to mark down only that she does "housekeeping," which is clearly not just unreimbursable but is likely to get the LTC policy discontinued. This weekend she accused me of making her caregiver commit fraud by lying on the insurance form.

And then today she tried to sell a Currier and Ives print from my childhood without telling me. She asked both of my children if they wanted it, but not me. I think she is trying to hurt me. My eldest says I'm making more of it than it is. My husband agrees with me. And here you see the beginning of a feud in my own home.

Therein lies much of the problem.

I have these forms spread out on my kitchen table, trying to fill out the ones that need tending so that mom gets reimbursed. Mom showed up in our bedroom today where I was hiding out, and wanted to see every form before I mail it, which means I have to confront her with the truth, which means that mom will be furious and life will be very nasty for a long, long time, or at least every week when I have to deal with LTC housekeeping. I did not sleep last night.

I really think that subterfuge and lying are the way to go here.  Agree with her to her face, and send in the forms like crazy behind her back.

Our family therapist, mom's physician and a friend all tell me that maybe it's time for mom to be moved to a more appropriate environment, if only to save my sanity, marriage and possibly my relationship with my mother. However, sending her away seems like breaking a sacred trust. Just as I wouldn't send my husband away in similar circumstances, or my children, I wouldn't send my mother away. So, other than that, why do I keep my mother here in my house?

I think while writing, so I thought that writing the reasons mom should be at home would help me to better consider my alternative courses of action. So, here we go...

My mother lives in an addition on our house because:

• She took care of me for the first 18 years of my life, sometimes when I was not so loveable and I owe her the gift of living where she wants to live.
• She has helped us tremendously as a married couple with emotional support (when she was able) and financial support (when she was cognitively intact) and we owe her this much.
• She paid for the beautiful addition on our house where she lives; we committed to caring for her and shouldn't renege on that promise unless we can come up with the money the addition is worth to set her up in another living arrangement. The sky will fall before that happens.
• I'm a gerontologist and I know what happens to elders who are moved without their consent; they die.
• She shouldn't be moved unless she wants to move.
• She paid for a LTC policy and has the money to bring in a caregiver to take care of many of her needs during the day, which lightens the burden on us.
• Paying for a nursing home or other extended care arrangement would be like throwing away money because her LTC policy wouldn't be needed or used; what a waste.
• She is a part of our family; our children, grandchildren, grand nieces and nephews love having her here; so do we, but less and less often these days.
• Her garden improves our quality of life; if she wasn't here it would be a weed bed or filled with stones and ugly red bark dust.
• What would I do without my mother's love, because surely I would lose it if I moved her?
• I could never forgive myself.
• And finally: Some things you just do.

I knew that there was never another course of action but to keep mom at home, but writing it out helps me see the many reasons why that's so. At this point, if I could just get her to stop barging into our house to use our washing machine (she has a beautiful one in her own place) I think that half of the battle would be won.

The Nuclear Energy Issue and Other Ill-Fated Policies

The probable meltdowns that are now occurring at two (now the press says three) nuclear power plants in Japan started me thinking, again about the issue of nuclear power. You would think that as an intelligent people, we've had sufficient warnings of the risks involved in using nuclear power. I remember the Chernobyl meltdown and the Three Mile Island disaster, and know of people that have probably been exposed to nuclear radiation as a result of each.

This situation with nuclear power reminds me of another ill-fated energy issue: the recent recent BP disaster on one of their deep water drilling rigs in the Gulf of Mexico that spread 205 gallons of crude oil along 280 or so miles of the Louisiana coastline just last year. Not enough redundant safety systems, and those that they had were probably never going to be sufficient.

Where there's money involved, we will apparently find it impossible to err on the side of safety or sanity.

Despite how unlikely an event is judged to be, if the worst case scenario is an unremediable disaster that we can't figure out how to prevent, then it seems to me we shouldn't do it. Economic benefit/cost analyses be damned, particularly where the economists involved have an economic interest in the venture, whether they rely on employment in the oil company or the governmental agency regulating it.

The value they place on things like clean air and water are just made up numbers anyway. Sort of like the valuation of life years involved in the Pinto (Ford) debacle. The "fix" to their fuel system would have cost them $11 per car, but the cost/benefit analysis came out on the side of not fixing the design flaw ($50 million dollars' value placed on deaths versus the $137 million dollars it would have cost them to fix their cars). At least jurors had the right idea, awarding $128 million dollars in damages in the first court case, which was trimmed back by $125 million by the appellate judge, as a "matter of law."

If I had to bet on endeavors of the human race versus acts of nature (or chaos) I'd go with nature/chaos every time.

But I digress:
 
In pondering, writing, speaking to friends and researching the effects of nuclear radiation, I came across information that led me to believe that my mother, a cancer survivor might be eligible for compensation for living near nuclear testing sites. Apparently if you lived in certain counties in Nevada from 1951 to 1958 for 2 years and you got cancer (from bladder to brain to breast-- there's a list) you're called a "downwinder" and there's a trust set up for you by the US government to compensate you for being exposed to their 200 some nuclear tests --and, bonus, you get $50,000. My mother-- who had  breast breast cancer twice, lived in Reno, NV in the county of Washoe in the early 1950s. Alas, too far to the west.

Here is the website for the Radiation Exposure Compensation Fund:
 http://www.justice.gov/civil/torts/const/reca/about.htm


The "downwinders compensation fund" was only established via an amendment to a federal statute for miners and military employees, in the year 2000.

Here is my family Atlas. The yellow areas are those where the "downwinders" can receive compensation for radiation exposure from nuclear testing

 
Another friend just suggested that mom might have been exposed to radiation from nuclear waste from the Hanford Plant that has seeped into the water tables in Oregon and Washington. My mother was raised in Grays River, WA and lived in Portland, OR for most of her life. And it is true that all of our proximate neighbors on 23rd Street in Portland had cancers, mostly breast cancers that weren't fatal. However, our neighbors to the rear of us were stricken with breast cancer (the mom) and a lymphoma (the son, my age) that caused both of their deaths.

Post Script:

Now the Japanese press is saying that the wind is blowing toward the ocean and not toward the populace in the vicitinities involved. That's supposed to be good news. What a consolation. What about my people on the West Coast?

My Life's Lesson

I know my Life's Lesson.

It should be etched on my brain because I keep forgetting it, and that act of forgetting triggers some cosmic event that makes me remember it over and over again. This weekend it was an event with my son J that whacked me back into alignment. The thromping always hurts, and not less each time, like you might suppose would happen, considering that I replay the lesson again and again.

It all started on Friday night. The whole family went to a dinner in honor of one of LSU's best alumni fundraisers-- a dear friend and the children's surrogate grandfather. I was proud of all of us for showing up, despite having to meet a report deadline that night, in R's case; despite no babysitter and little grandchildren in attendance, in D & B's case; and despite it taking up a chunk of a Friday night, in J's case.

So, there I was basking in the glow of my priorities-in-alignment-family when J and I began to hyperfocus on each other. He thought I was moving too fast, and talking too loud, and I thought he seemed a little too pulled apart, at loose ends; discombobulated. I'm like Pavlov's Dog. Once I see what I think are signs of a lack of focus, I start drilling him on his life. How's school? Is he going to class? Is he studying? How are his grades? Should he be going to that outdoor concert, on Spring Break, out later? This despite him getting great grades last semester, and "A"cing all of his tests last week.

This makes him talk louder, move quicker and back away. The last text I received from him before bed was, "there is always some sort of miscommunication between us."

Gah.

And even if these great academic accomplishments were lacking, I mean, really, is it my nagging that is going to steer him on the right course? I think not.

So, what's my Life's Lesson?

My lesson is the pain I inflict on myself and my loved ones when I try to control them. It's not like I want to keep J -- or anyone else for that matter -- from having fun. Really. It's just that I don't want him to do anything that would make him experience something bad. So: go to class everyday; do your homework; get enough sleep; don't overdo it; find a nice girl; Then you won't: get bad grades; drop your classes; flunk out of school; lose your scholarship; be arrested; get hurt.

You think this is normal for a mother, don't you? Well, I did too until I realized -- over and over again unfortunately -- that if he doesn't experience these "bad" things, or others like them for himself he won't be able to learn the life skills to be able to achieve the very things I want for him.

It's not when will he ever learn?


It's when will I ever learn?

I am so dense.

It's not the things I want for him.

It's the things he wants for himself.

Shootings

I don't have a political commentary to report following the shootings on Saturday in Tuscon, AZ. What I do want to do is to create a space to remember them, in the case of Judge John Roll and to pray for their recovery, in the case of Gabrielle Giffords. I think we need to center ourselves on what is good and right before we can plan a way forward that is good and right.

I will leave it to others to go after the inciters, as I can tell that by focusing on agitators like Bill O'Reilly and Sarah Palin that I will sink into the abyss of hatred. I don't want to do that. I would rather that they and others of their ilk would become irrelevant in the shadow of a political movement designed around love, understanding and reconciliation. That might sounds stupid but it didn't at various times in the history of our world. We had Martin Luther King, Jr., India had Gandhi, I know that Sri Lanka has Dr. Ariyaratne.

So, I am thinking about how to proceed. I think one thing is for sure, and that's that I'll become involved in politics in some concrete way at the local level. Writing is good. Talking is good. Action is better.

So, God Bless the deceased. Let us not let their lives to have been lost in vain.

Sweet and Salty Christmas Reflections: The Origin of our Traditions

Most people have some sort of holiday tradition this time of year, whether Christmas, Hanukkah, Kwanzaa, or name that holiday. My family's traditions are Christian, but are probably as much unlike other Christian traditions are they are like them. Our celebration has changed throughout the years to incorporate new family members, like my husband, and our children, the family of the mother of our son's children, and our baby grandchildren. Sometimes tradition changes manifest themselves as a "work around" other people's celebrations. Sometimes we create them to accommodate an individual's beloved personality traits (Daniel) or ineptitude or exhaustion (me). But, their core pretty much remains the same or has for the last 25 years.

Here are some of my favorite Christmas traditions and the people who inspired them:

1. We always open presents on Christmas Eve, after dinner, in the glow of candles and a lit and decorated tree. The origin of this tradition is my mother's Swedish family, originally from Sunne in Varmland, Sweden, later from the farming town of Gray's River, WA where they ultimately settled. They would decorate the tree on Christmas Eve, eat a late dinner and receive Santa, replete with presents, after midnight. The children might have slept all afternoon, but the women were up for days preparing the Christmas fest. Those poor women. They were sturdier than I.

We've adapted this a bit-- no Santa, no late tree trimming, no staying up past midnight to open presents, but the evening tradition lives on. My husband came from a morning-present-opening-family, so adapting to the Christmas eve celebrations leaves him a bit wanting. However, having Daniel, who was physically unable to "wait" for anything, helped chauffer this day-early tradition along, and now that we have grandchildren who celebrate on Christmas morning with their mother, the celebration timing is settled. We did add opening presents in stockings on Christmas morning, to bring a little of my husband's traditions to share. I confess that this hasn't amounted to much these past years, as the stockings are generally filled with an abundance of Chap Stick (long story, having to do with husband's families' very dry lips and him having initiated our small children into same habit years ago) and not much else, which isn't very inspiring. I vow to do better next year.

and

2. We always eat the same sugary and salty foods every Christmas. I'm not sure why. I just remember that we have always had cranberry salad, pumpkin pie, stuffing with giblets, green beans, carrots, and mustard sauce.

For the fresh cranberry salad-- my mother grinds the cranberries and for days adds and readds sugar to the mix, and then, finally, tops the confection off with nuts and whipping cream. I picture blond women performing this same ritual all over Sweden, maybe outside in the snow using their ice-skate blades as knives, almost like I see Italian women of old stomping grapes for wine, but the Italians labor in nicer weather. Fortunately, we generally have use of a Cuisinart (that has apparently imploded this year) so the chopping is manageable. This year it died and my mother struggled with various mutilating utensils, like our blender and that little handheld chopper you see on informericals, neither of which seemed to serve very well. There is a fine line between chopping and mashing. You can tell what we will get her for an early Christmas present next year.

We also have mom's pumpkin pie, a unique version that incorporates fresh spices, like cinnamon and ginger. My dad always said it was the best pumpkin pie ever, which clinched that tradition. My poor mother used to despair in the making of it until she found the pre-made and pre-rolled Pillsbury piecrust in her grocer's dairy case. That stuff is magic and it tastes good. It also makes my mother happy and calmer for the holidays. I used to consider writing Mr. Pillsbury a letter of thanks for saving our family holidays and may still do so.

I have taken over Win and Oz's sweet potato roll, which has to have a bit of orange juice, butter, milk, brown sugar and nuts (in Oregon it was Walnuts, here in LA it's Pecans) in it. It used to be carefully placed in a wreath shaped tin and baked. However, Win and my mother were the only two individuals on the planet who could get the contents out, in the right presentation, without gouges and ill placed nuts and onto the Lenox china plate for the Christmas dinner table (the secret is in buttering and flouring the tin beforehand, and then placing it in the refrigerator to chill before baking, or so they say). I admit I am a miserable failure at this, but mine still tastes good, and sometimes I vary the recipe; this year I added baked apples. That sort of makes up for the lack of presentation. Or that's what I say anyway. The truth is my kids just want me to quit putting fruit in their food.

Daniel usually does my Aunt Eileen's fresh green beans with onions, bacon, celery and a bit of tart barbeque sauce because Aunt Eileen is gone and he has been dubbed, "the bacon fryer." Richard was supposed to take over dad's stuffing because dad's gone, and Rich loves internal organy things and he doesn't have a cooking job (he wraps presents). And James was supposed to be the orange carrot man, just because; although I wouldn't care what vegetable he cooked as long as it was a vegetable. This year I did it all myself -- but I somehow missed fixing the stuffing. I think I'll make a run to the store tonight and pick up the fixings to have with whatever leftovers are "left" "over" (aren't there supposed to be leftovers? All we have now is a bit of sweet potato and ham).

Finally, we have Honey Baked Ham because my mother adores it. Either mom or I make Aunt Lucy's mustard sauce (the tartest sauce you can have without it being 100% vinegar) so that I can eat it (the ham). We've all but given up on cooking for Thanksgiving -- we order out, and that's when I get my turkey, otherwise I suppose I'd cook one of those for Christmas too.

Just so you know-- children-- the recipes for all our traditional dishes are stuck inside various pages of the Fanny Farmer Cookbook in the pantry, next to all of the other cookbooks on the bottom shelf. I think the outside back cover is coming off but you will be able to identify it by the white and yellow crosshatched design that remains still adhered to some of it. Some recipes may also be in the cookbook that my Cousin Shari made for me when dad and I first got married. It's the spiral notebook, whiteish cover, with the little celophane holders for the recipes. Some recipes are jammed behind others. The mustard sauce may not be written down: just remember equal parts of everything, except for the sugar, which is doubled.

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3.  Someone always takes mom to Episcopal Mass, "the midnight one," which isn't even at Midnight anymore as it's at 4:00 in the afternoon and 10:00 o'clock at night. James and I took mom to latter one this year. Mom never stays to the conclusion of the service after the Mass -- she skips out early -- which to be honest, is the wiley card up her sleeve she uses to entice the children to go with her ("we won't stay long...").

This is not a lament really, but the service didn't even seem like one of the traditional Episcopalian ones I used to know, as we only knealt once. We stood most of the time singing ourselves through the hymnal. One thing's a constant: I continue to pitch my voice up into the rafters, which probably embarasses James, but oh well, feel God's presence, and thank him for my family and friends and another year to spend with those that are still here.

What else?

We always say we're not buying presents except for the little kids, because we've spent way too much money on so and so throughout the year; but we always buy for everyone and we always overspend. We are weak and sentimental. We always fight a little bit at some point during the day or night and someone always says, "Can you give me a break!? It's Christmas!"  Rich and my mother are the cleaneruppers (Rich mostly the paper, mom mostly the china). Sometimes things get lost (like a gift card this year). But, it is the one time a year when I can be sure that we will rise above it all.


Merry Christmas!

Caregiver's Dementia

They call it Caregiver's Dementia and I've got it.

I lost my Barnes & Nobel Nook two weeks ago and my glasses and debit card this morning. Fortunately, I "remembered" where the latter two items were, but not the first. The thing is, I'm getting shaky and flustered when this happens, which makes it impossible to remember what I'm trying to remember when I'm trying to remember it.

This feels more like a panic attack.

I think the first step towards swimming my way out of this raging ocean is to stop reading books about dementia and Alzheimer's Disease. I feel like I did in college when I took a psychology class and thought that I had contracted every malady mentioned in the text.

I think the second step is to practice some sort of meditation or relaxation exercise. I know that forced thinking of any kind just makes my mind go blank. Things start to "pop" into my head only when I'm feeling calm and confident. My state of being during these times is the opposite of confident. That doesn't portend well for my job performance either. Fortunately, mom is not at the office.

The third thing I should do is to get some rest.

Today I came home to a mother who thought I owed her $10,000 (again). These sorts of accusations just compound that quaking feeling I have inside. Rather than put her rants in their proper place (which is to set them aside and in a box somewhere until I can muster the energy to deal with them) I began digging through her bank accounts, my bank accounts, and other assorted accounts, printing off materials that would show her where her money had gone (she transfers money from one account to the other, sometimes between as many as 3 accounts in the same day). This took most of my afternoon, somehow exhausted me more and probably won't do me a bit of good in reasoning with her.

Now I have to look forward to figuring out how to deal with her in paying her caregiver directly (which we will eventually be reimbursed for) which may require us to issue a 1099 and pay payroll taxes. I could deal with that. It's just dealing with her confusion over payments and reimbursements that is sure to push her over the edge and cause me more unease.

Good Reads on the Tough Topic of Dementia

Denial appears to be very functional, particularly for persons with dementia. I know. I live with one (mom's caregiving company "fired us" this last Friday; and I appear to be the only one preoccupied with this. She seems to be unconcerned). Family members heap on an added layer of indifference, to wit: my family asked me, "What's your Plan B?" Notice the possessive pronoun in that question.

It's rough. But, bring in the following excellent books to the rescue.


I've recommended Still Alice by Lisa Genova to many, but what I find missing in that book is an illustration of the behavioral component of dementia, which in my opinion is much worse than the memory loss. What may make that book less helpful to families is that it is fiction that reads like great non-fiction (but it's truly not and therefore misses the mark on truthfulness). It is written by a PhD Neuroscientist about a woman with Early Onset AD, which is an unusual form of AD, and spares familys, comparatively, with its fast decline.

I said comparatively.

I just finished reading, Keeper by Andrea Gillies, that fills that gap in the literature. It is more of a biography of the author's elderly mother-in-law and her life with Alzheimer's Disease (late mid-stage and late-stage I would say) which not only includes all of the emotional and behavioral complications involved, it, by necessity, highlights them. The book is about the disease of a family, as AD or dementia in general, impacts everyone in the family it touches. The family's decline, particularly the author's is as marked as that of the sufferer, "Nancy," her mother-in-law. And because it is true and written by an excellent writer, it is wincingly exposing. I can see myself in every mean thought, every instinct to run away, every instinct to feel self pity, and particularly in what is now my paranoia in my dealings with the geriatric professionals, clinical and social worky, from agencies brought into help. I'm not a good self censurer, and have said way too much to the caregiving agency about my state and my mother's situation. If I had read this book first, I would have been more guarded.

Live and Learn.

Both books are beautifully written. Both include helpful information about AD, and its stages and types.