The Yellow Wallpaper

My mother has now been living at Garden Manor for six months, and here is where we stand:

• On the Aid & Attendance front, I reapplied in late February–four months ago–and have not yet received a decision. I had originally sent the application to the Providence, RI, office of the VA, but received an acknowledgement from the Philadelphia office shortly thereafter so I imagine that’s where the application is sitting. I send them a printout of the cancelled check for my mother’s assisted living rent each month, just to remind them of my situation.

My question for them at this point is: If you won’t allow folks to apply for the benefit before they commit themselves to a care situation–forcing them to OVER-commit themselves financially while crossing their fingers and hoping they’ll receive the monthly benefit–how do you expect the average middle-class potential beneficiary to manage? I DO appreciate that the benefit is awarded retroactively, but my fingernails are chewed to the quick at the possibility that they will pull some little-known subclause out of the darkness and refuse my mother benefits. And my mother is in a relatively good situation: she has a decent pension, she is in a reasonably priced assisted living home, and–maybe most importantly, not to blow my own horn–she has a family member (me) who is stubborn, tenacious and may also have an inflated opinion of her own ability to get things done on her own.

She also had a healthy savings account (now practically gone) and a life insurance policy that I cashed in. It’s true that my mother has a house, which is not included when her total assets are assessed by the VA. I am holding on to it for now for several reasons. The first is that I believe she is entitled to the A&A benefit and this extra monthly income will cover her AL rent without my having to liquidate her property. My father served this country for almost three years on a small boat in the Pacific during World War II, and he is a perfect example of the veteran this benefit was created for. When he returned, both parents worked from Day One for this house. If I sell the house now, my mother will no longer qualify for Aid & Attendance–this logic might seem disingenuous, but we are facing a very open-ended illness. My mother is in good physical health right now, but I have to consider the possibility that the Alzheimer’s will carry her along until she needs a nursing home–which we CANNOT afford. I spoke to a professional from the local Alzheimer’s Association who recommended that, if and when the time comes for a nursing home, my mother should at least start off as a “private pay” resident, if possible. That’s where the house will come in.

• I began seeing a therapist about a month ago, after the depression and anger began interfering too much with both my work and home life. I was sleeping and eating too much, dreading the weekends and feeling totally overwhelmed. I couldn’t understand WHY this was happening now that my mother was in assisted living and I was back in my house. I’d expected a letdown but not this. I like this woman very much–she’s professional and warm–and so we talk about what I think and what I feel, which don’t always jive. And I’m gradually feeling better. I’m recognizing that while a situation can be tackled intellectually, I can’t always set an emotional timetable for myself. Acceptance, grief and letting go can’t be pencilled into a calendar. It’s messy, especially for someone like myself who is most comfortable with a script. Things aren’t always what they seem.

• My mother seems to be “home” most of the time at Garden Manor. Yesterday when I was visiting, one of the aides brought her her pills.  “She is always smiling,” the aide said to me.  Of course there are wrinkles–I try to get to the bottom of my mother’s anxiety when I sense it.  “What are you worried about right now?” I asked her yesterday.  “I think you’re hiding something from me,” she said.  I am, I suppose.  She still asks regularly about “Ma”–where is she, where does she live?  I think her anxiety is related to “Ma” but I’m still feeling my way around here.  Redirect is still the best advice.

So this is the six month state of affairs.  It’s still caregiving, but it’s a different kind of caregiving, for me.

I’ve been mulling over the very insightful comments left by Marty and Gail on my last post. I think Gail summed it up well when she stated that “it’s the tension between ‘doing’ versus ‘being’.” I’ve always been someone who feels that the “being” will come later on–there is just so much that needs to be done right now and therefore no time to just “be.” What Gail says about the demented and routine boils down to living a life that is increasingly and necessarily “in the moment.” I was rereading Joanne Coste’s Learning to Speak Alzheimer’s and found myself interested in her remarks about the loss of depth perception in Alzheimer’s sufferers. There’s a psychological analogy to this loss as I see my mother losing context–forgetting the stories that surround everything. And yet she still knows that there should be a story, so she pulls out whatever’s left and patches something together.

I’ve been taking her out for ice cream after dinner once a week, now that the weather is nice. Literally around the corner from Garden Manor is a place that makes its own ice cream in flavors you can’t get anywhere else: lemon coconut, chocolate raspberry. The area around the ice cream shop is still very woodsy (although development is slowly approaching) and across the street is a big lake. We get our cones and I park the car facing the water. We don’t say too much–we watch the boats and the anglers. I’m regaining an appreciation of simply looking at water. Possibly because I’ve had so many wonderful experiences around water–many of them with my parents–just the sight of it is calming.

When I was a kid we used to go the the beach in the evening, when my father came home from work. My mother would bake chicken in some kind of cinnamon coating, and we’d pack it up, pick up my grandfather, and drive to either Newport or Point Judith. Once we spread our blanket out on the sand and got settled, my grandfather would smoke a cigar without saying much; my father would read. My mother, sister and I would walk to the tideline and look for shells while the water washed around our legs. That evening light and the salty smell can lower my blood pressure to this day. The sounds of the buoys and the seagulls, the great big rhythm of the tide–when my mother and I now sit and look out at the lake I begin to feel a bit of that peace. I wonder if the sight of the lake can still suggest to her the peaceful feelings of those days, even though the stories might be lost?

Yesterday I took Jasper with me, which reduces the peace factor but my mother enjoys him so much. I found her in her room, in the middle of something that had to do with taking a break from “the people in the auditorium.” I suggested we go for ice cream and she immediately agreed, but needed to let them know she was going. The “people,” it turned out, were a new resident–a sweet, childlike woman named Betty. My mother found her in the common room and talked with her a few moments. “You go and have a good time,” I heard Betty say as I approached them. “This is my sister,” my mother introduced me, but Betty had her eye on Jasper. “A little dog!” she exclaimed and bent over to pat him.

Jasper shines at moments like this. He lifts his little head and lets himself be petted, then gives his admirer a kiss. His behavior there continues to amaze me because he can be a demon puppy at home–he’s chewed the kitchen linoleum, several shoes and his very nice dog bed. When I lean over and sternly say “NO” he looks at me for a moment with those adorable eyes, then barks sharply as if to say “Make me stop,” and runs off to find something else to get into. He “graduated” from Puppy Kindergarten last week, which involved the awarding of a diploma. I accepted it for him, and–the pressure finally off–he squatted and did his business in the middle of the training room.

So we finally dragged Jasper away from his fans and found ourselves enjoying our ice cream and watching the water splash as the small boats passed by us. My mother was quiet for awhile, but finally said, “I’d love to be on a boat.” I tried to remember the last time we’d taken a boat ride together–maybe years and years ago across Lake George in upstate New York?–and remembered that one of the activities planned for the residents at Garden Manor was a boat ride. I wondered if she would go on that trip, or if she would prefer to be on a boat with me. I made a mental note to check on possible boat rides across the lake.

When we returned to the Manor at about 7:30, most of her fellow residents were in their pajamas, including Betty. My mother would not settle in her room until she tracked Betty down. I spotted the two of them saying good-night to each other in the hallway and giving each other a kiss on the cheek, which made my leaving a little easier.

I talked to a friend whose mother moved into a nursing home last July. Jen confirmed what I’d heard about adjustment: that it’s incremental and can take several months. The going was rough for awhile–her mother needs care primarily due to physical problems but the physical and emotional stress of failing health and a new environment probably had something to do with the dementia that arose. I remember talking to Jen a few months ago and she was extremely discouraged. But her appreciation for her mother’s home has increased with her mother’s acceptance of it. Her mother, she told me yesterday, is now “at home.”

My mother has been at Garden Manor for two and a half months, and I’d say that she’s definitely in the middle stages of her adjustment. She is no longer angry at me, and she no longer demands to go home. She still wants to go home, but I can tell by the way she talks about it that she no longer blames me completely for her situation. When she brings the subject up I acknowledge the difficulty of her transition and then tell her how much I would worry if she were to live alone. “I didn’t think that you wanted to be alone,” I usually say, hoping to suggest that she has some control over the situation. “I don’t,” she now says, “but if we could get someone to live with me, I could go home. Please don’t tell me it’s impossible.”

And so I say that nothing is impossible, although finding someone to move in with her will be a challenge. “But I never rule anything out,” I say. I think this makes her feel better, and that’s what’s interesting to me about this stage. She no longer needs to go home NOW, but she still needs to hope that she might go home, given the right circumstances.

Sometimes it’s like walking a tightrope–real hope on one side, false hope on the other. I visited her after work today and we took a very short walk outside, the weather being mild. Then we sat on a park bench, and I could feel my mother sinking a bit. “I never thought I’d ever be this unhappy,” she said. “You’re the only one I can tell–I can’t tell the others.”

I inhaled deeply, trying to find the right response. My mother looked over my shoulder and said suddenly, “Look at how big that rock is. This place is so pretty.”

These “in-the-moment” shifts are still mysterious to me, but I took this one and ran. I reminded her that St. Patrick’s Day is coming up, to be followed by St. Joseph’s Day. St. Joseph’s Day brings with it the sublime Italian seasonal pastry called the zeppola that we both love. “I can bring us some zeppole,” I promised and she brightened up. I brightened up, too, because it was a promise I could keep.

I almost adopted another collie last weekend. I’ve been sneaking a search or two on Petfinder during my workday, and one day I spotted the picture of a beautiful 4-year-old collie up for adoption in Connecticut. I filled out the application and the rescue organization responded enthusiastically. But the owner would be the one to decide, and she wanted–understandably–an adopter who would not have to leave the dog while at work. So that was that, but I couldn’t help myself thinking, “So you don’t think I’d be a good enough caregiver, huh? Your loss.”

But I’m still feeling a strong impulse to get another dog. It doesn’t have to be a puppy, but I’m wondering if that might be the path of least resistance. How nice to have a being in my family who isn’t fading or pulling away. I was in Petco on Friday and standing beside me was a man holding a Bichon puppy. A tiny, wet-eyed, pink-pawed little creature, still too young to be frisky. “Look at his eyes,” the man told me and I saw that they were Delft blue. The sales clerk offered the puppy a piece of Milkbone, but he was too bewildered by his surroundings to take it.

I’m trying to reimagine my relationship with my mother. I visit her for an hour after work on Tuesdays and Thursdays, we go out for lunch and a ride on Sundays. The weekday visits are turning out to be interesting because we often sit in the common area. Before you know it, we’re joined by some of her neighbors. Their conversations can be funny and poignant, especially when I hear how the others attempt to come to terms with living there. Nearly everyone I’ve spoken to has expressed an intention to return home, which isn’t surprising, but for some this will happen when they “get better” and for others it will happen in the vague future. “I guess I’ll stay here for awhile,” said Margaret, after stating that she didn’t want to live alone at home. Even my mother has told me that she’s decided to go home “next week”–at which point I will presumably have found someone to move in with her.

Otherwise, much of their conversation revolves around what day it is (”They could tell me it was any day and I’d believe them,” Connie stated flatly), and when and where they will eat dinner. They eat at the same time every day, and each person sits in the same spot in the same dining room, but they are continually surprised by this. What I am coming to love and learn from is how they accept each other at face value. Of course there are little disputes but when Cecile repeats for the nth time the story of her husband’s sudden death, everyone listens as if hearing it for the first time.

My mother has lately been returning to her role as schoolteacher and she’s often worrying about where “the kids” are and when they are going to return. I think this might be triggered by some of her neighbors going out to an activity, but on Thursday she was especially anxious about the whereabouts of someone. She left me to go look for this person a couple of times, the last time returning with her roommate Irene, who’d been lying down in their room. “Everyone!” my mother called out to the people sitting with me at the table. “This is Irene. Irene, do you know everyone?”

I almost said, “Mom–everyone knows Irene,” but the others were saying “Hello Irene” and “What was her name?” so I kept quiet. My mother went on to instruct Irene about the whereabouts of their bathroom and the dining room. “And if you just want to relax, you can sit in the bedroom.” Irene looked perplexed. “I’m just going to follow you around,” she finally said.

At this point I realized that my mother was more concerned with Irene’s situation, which actually made me feel good once I thought about it while driving home. I had hoped that she would form bonds with her neighbors, that she would be interested in them and enjoy sitting with them and worry about them. That they would engage each other. But it changes my relationship with her, and I’m not yet sure how. I used to take care of her and live with her. I ate meals with her and slept in the bedroom across the hall from her. I had time to sit with her and knit without talking, but now my time with her is limited. There are so many moments when I am actually shocked to find myself sitting alone at home and just plain loving it–and then I wonder what my mother is doing at that moment, when I am not taking care of her. Other times I wake up at night thinking that I hear the click of her doorknob turning–a sound that used to be like an alarm in the night. Can this be right?

Time will tell. In the meantime, I’ll keep one eye on Petfinder and the other on Lily.

I haven’t been wanting to write much lately. I’m feeling tired and uninspired, just trying to deal with the ups and downs of this spell.

A routine is starting to take shape: I visit my mother on Tuesdays and Thursdays right after work. I leave the library at 3:30 and get to Garden Manor by 4. I sit with my mother until dinner, which is served at 5. For the past two Sundays we’ve gone out to lunch and then for a short ride. This seems to be working well for her, although she has accused me of not visiting “for weeks” when I let two days elapse between visits.

We had a very nice visit today. I found my mother in the common room, watching TV with several others. She looked happy to see me and, although she did mention hoping to go home, she seemed calm and settled. We sat in the airy central area and were joined by a woman who is very sympatico with my mother–they react to each other the way I remember reacting to my best friend in grammar school. One day as I walked my mother to the dining area, this woman emerged from her room and they both lit up. “Have you met Mary?” my mother asked me as they held hands for a few moments. Today we discovered that my mother and Mary were born on the same day.

Today was what I hope will come to pass for my mother. Companionship, security, warmth and care. I hope visits like this one will become more frequent, that I’ll be able to relax when I’m not with her, that I’ll come to believe that she isn’t always sadly thinking about what was taken away from her.

The place isn’t perfect, but I can see that I can improve her care by being there frequently and getting to know the staff. There are a couple of CNAs on her wing that are exceptional. The place is very clean and my mother is always dressed in clean clothes, her hair brushed. She told me that the podiatrist visited the other day, and the local lab draws her blood for her there. There are pictures of residents at various activities posted everywhere–my mother has gone on a few outings. When I see the activities director he lets me know what she’s up to.

I’ll know she feels secure when the pictures stay up. I had brought several photographs for her room, and whenever I visit I find them stacked up on her bedside table. Each time I will put them back on the windowsill and the wall–where they belong–only to find them stacked on her bedside table the next time I visit. She claims she needs to have them packed up for her eventual move back home, and so they’ve become a symbol of this transition. As long as they are stacked on the table my mother is still making the journey. When she arrives, maybe the pictures will go up.

It’s been a rough couple of weeks. Anticipating and planning for the move to assisted living, making the move, and now adjusting to it–each stage has exacted its emotional toll. I began visiting my mother six days after she moved in, and if I had it to do over again, I would visit her earlier. But who knows? There’s no way to hurry the grief and adjustment for her, but I think moving her in and then disappearing for nearly a week (on the advice of the staff) might have confused her more than she would normally have been.

I now visit every day. At this point, I don’t know what’s best but this is my gut impulse. The university I work for is now in intersession, so I’m able to leave earlier than usual in the afternoon–I’m off at 3:15 and I can make it to Garden Manor by 4 (it’s not that far, actually, but there’s no way I can avoid city traffic). I sit with her until dinnertime at 5. I spent a couple of hours with her yesterday and today, in the afternoon, trying not to overdo it but wanting her to know that I’ll still be around.

Our visits begin with my mother telling me that she can no longer stand it. She HAS to go home. I’ve managed to whittle my response down to: “I love you and I don’t want to you be alone when I’m not around.” I used to get into circular conversations with her about logistics and motives, but that doesn’t work. I’ve found that short and direct is best. She cries and tells me she wishes God would take her. The other day she asked me why I had put her there to die. I now repeat my response and then try to ask her about her day, or her meals, or the other residents, to distract her.

What’s interesting is how her mood changes by the end of the visit. She’s certainly not cheerful, but the tears stop and she seems a bit resigned to the place. I’ve noticed this change the past few times I’ve visited. Now at a certain point she’ll say, “Well, you should go now–I don’t want to take up all of your time.” I don’t go at that point–this gives me the chance to say that I want to spend time with her. I stick around awhile longer, and eventually she walks me to the door to say goodbye without begging to go with me.

We usually walk around a bit during my visit and often sit in one of the common rooms, which gives me the chance to notice the nineteen other residents. They are mostly women my mother’s age, but there are a couple who are younger as well as three men. My mother waves and says hello to almost everyone she sees, and today she told me that one man played the piano the other night, and they all gathered around to listen to him. She also told me that another woman on her wing comes from my neighborhood, and that yet another woman was depressed. So despite her telling me that “no one has anything to do with me here,” there seems to be some interaction. She’s resisted most activities so far, but was persuaded to go on the “Mystery Ride” on Friday, where a group is taken out for a ride. My mother has always loved going for a ride where she has nothing to do except look out the window. But she complained that no one talked and that they didn’t even get out of the van. “But you don’t usually like to walk around much,” I said. She paused. “No, I guess I don’t.”

I think this response was part of her determination to speak ill of the place, no matter what, in the hopes that I’ll take her home. What’s very interesting to me is that she has been exceptionally sharp since moving there–none of the delusions she experienced in the nursing home (where she believed that she was back teaching school and all around her were her students). She knows just how long she’s been there, and she once even asked me how much I was paying for this. She still asks me where “Ma” is, but she has also introduced me to others as her daughter.

So I think she’s adjusting, even though I know there will be more tears and pleadings for awhile. The staff is nice and there are several other ladies who might be potential companions for my mother. I am slowly personalizing her room–her roommate is in the hospital right now so she’s been alone in there–and this is where I see myself having to adjust. I’ve brought pictures and mementoes but I’ve found myself resisting removing some things from her “home”–and then having to remind myself that “home” is in transition right now. And if I don’t help her with the physical transition, the emotional transition might be rockier.

And then I come back to my home and battle the effects of long-idle appliances and plumbing. I feel like I’m fighting a battle on several fronts. Yesterday, I’m proud to say, I fixed a leak in my washing machine drain system AND replaced the fill valve in the downstairs toilet. Thank God for Home Depot. The weather has been confusingly mild–in the 60’s when it should be in the 30’s–so I’ve been able to do a little yard cleanup, too.

But the other day I remembered that I’ll be able to revive my garden this spring. I can replace the old roses that had fallen victim to a particularly harsh winter a couple of years ago. I can buy seeds and start them indoors. Bit by bit, I think, my mother and I are making the change.

My mother went to bed early tonight (about 7:30) but I can hear her up again, wandering into the kitchen, the living room. Today I told her that I’d arranged for her to move to assisted living, and I imagine that she’s unable to sleep because of that.

She responded in no uncertain terms that she did NOT want to leave this house, where she has lived for almost 60 years. Every bit of advice I’d received counseled me to be firm. Don’t ask her, tell her. I had rehearsed my words for weeks, wanting to couch my firmness in love and not bossiness. She made a face and then seemed to sink into herself. In the end I couldn’t help myself wanting to discuss it all with her: “What other option is there?” I asked after she agreed that I should move back to my house, but still resisted moving out. “Someone could live here with me,” she said. I finally caught myself and steered the conversation back to my direction.

Her move-in date is the day after tomorrow, the 28th. I deliberately said nothing about this over Christmas–I even invited our relatives over, despite my mother’s hesitation. We had a lovely Christmas Eve–lots of conversation and food. I didn’t sense my mother withdrawing, as she sometimes does when in a group. Afterwards she commented on what a nice time she’d had. I managed to let go of the ever-present anxiety and enjoyed myself, too.

However badly I handled things today, I DID back off a bit in the afternoon. I waited, and my mother finally raised the subject again this evening, when we were watching the news. “I can’t leave this house,” she repeated. I tried, once again, to be firm in my expression that, while I will always be her caregiver, I can no longer do it alone. She agreed with me, but clung to the untenable. I then told her about the AL–a former neighbor now lives there, although not in the AD unit–and about how it is NOT a nursing home: she would not be clipped to a body alarm and planted at the nurses’ station, how I could visit whenever I wanted and take her out, how they have a beauty salon, and exercises, and concerts, and that it’s located near our favorite ice cream stand beside a lake.

She seemed to soften a bit. I finally told her that I was doing what I felt my father wanted me to do, which brings up an interesting story.

The day before Christmas I visited my father’s grave. I usually just stand there and “talk” to him–I know I can do this anywhere, but I imagine his gravesite as being a spot where the signal is strongest. So I stood there on Sunday and asked him to help me do the right thing. I asked him to give me a sign (I can’t help it–I grew up Catholic. We love burning bushes and seeing images of Jesus in grilled cheese sandwiches). But I forgot about it as soon as I left the cemetery.

I’ve mentioned before that as I struggle with my faith, I often turn to the writings of Henri Nouwen. He finds active Christianity within the present world, in the way we live now. He identifies what the contemporary believer struggles with and responds to that with an often deceptively simple lesson. A scholar, he chose finally to work in Toronto’s L’Arche Community, a home for the most broken members of society.

I have a book of his called Our Greatest Gift: a Meditation on Dying and Caring. I read it through a few years ago, and now I sometimes pick it up and open it randomly, hoping that he will speak to a particular struggle of mine. I did this on Sunday–I opened the book to page 63-64 of my edition and read the first paragraph:

No, we shouldn’t try to care by ourselves. Caring is not an endurance test. We should, whenever possible, care together with others. It is the community of care that reminds the dying person of his or her belovedness…

[p. 64] When I reflect on my own community, the l’Arche Daybreak community in Toronto, I realize increasingly that what keeps us faithful to each other is our common commitment to care for people with mental disabilities. We are called to care together. No one in our community could care single-handedly for one of our disabled members. Not only would it be physically impossible, but it would quickly lead to physical and mental exhaustion. Together, however, we can create a caring space that is good, not only for those who receive care, but also for those who give it…It is essential to the weakest members of our community that those who care for them do so together…

I must say, I felt a little inner snap upon reading this. Especially since I’d hastily shoved the book in the middle of my bedside bookpile, and only when I accidentally kicked the pile over did this particular book remember itself to me after I’d come home from the cemetery.

So I do feel as if my father has whispered into my ear. It’s still going to be tough but I already feel less alone.

Two days ago my cousin telephoned, and my mother answered. I listened to her side of their conversation and thought, “Have I been dreaming? Is she really sick?” She handed the phone to me at one point. “She sounds great,” my cousin said to me.

Is this the woman I visited in the nursing home a little over a month ago? The one who was acting out, who wanted to kill herself, who claimed she’d been raped? Oh, we still see the disconnects (she kept referring to my sister as “he” earlier today), but I can deal with that. I can deal with her thinking that I’m her sister, or expecting my father to come home for dinner, because those disconnects don’t alter my mother’s personality, her “self.” She remains essentially herself, only caught in a time warp or subject to a misidentification. If I say to her, “Daddy won’t be here, tonight,” she usually takes it in stride, even though she’ll probably ask for him again tomorrow.

I’m not trying to fool myself, here. I’ve seen enough of her during those other times, when her body seems to be inhabited by another self. When she’s so agitated by God-knows-what that she can’t get a grip. When she’s so angry at me–only the “me” she sees is a stranger. I can tell by her eyes. I saw it in the hospital and again in the nursing home.

But she’s been remarkably like the Mom I’ve known all my life since she came home from the nursing home. Despite all the reading I’ve done, all the learning about Alzheimer’s Disease, I catch myself at times like this wondering… Am I making a mistake, moving her to assisted living? What if THAT makes her worse? Even though I’ve actually experienced those spells when I’ve been a stranger in her eyes, they now seem like dreams to me.

I know that this is what happens. One step forward, two steps back. Another step forward, leaving the caregiver in an emotional and practical muddle. How awful is it to find yourself worrying because your mother seems to be better than usual? Should I be listening more to my heart, and not to my head?

This facet of caregiving just can’t be measured: the role of the familial bond, for both the caregiver and her charge. I couldn’t do this, day in and day out, for a stranger (unlike many professional caregivers, God bless them)–I get my motivation from my lifelong relationship with my mother. When the going gets tough I try to remember specific things she has done for me over the years–I step back a bit from the present moment and try to put it in its proper perspective as just one of many, many moments that comprise our relationship. Doing that requires a rational decision–I withdraw from the emotion of the present into something I’ve created, an informed mindset I’m determined to maintain. I may be close to tears but I can usually hear the reasonable voice within me saying: “Now, now, that’s the Alzheimer’s speaking–take it with a grain of salt.”

I think my point is that the swinging back and forth from head to heart, and back again, is tough. Knowing at any given moment whether to listen to reason or to emotion is difficult–usually such decisions are nicely spaced throughout our lives. But here in Alzheimer’s Land they are not. When you are caring for a parent, there’s a constant conversation going on between your dispassionate and your passionate selves. It’s nice to have dialogue but sometimes I have to tune it out. Sometimes I have to rest my head against The Divine and say, “Okay, you take care of things for awhile. I just want to close my eyes…”

I’m going to do that right now.

I’ve been doing a little research and here are a few facts:

According to the MetLife Mature Market Institute:

The 2006 average daily rate for a private room in a nursing home is $206 ($75,190 annually), a $3 or 1.5% increase over the 2005 rate of $203. In 2004 the rate was $192 daily. (from the MetLife Market Survey of Nursing Home & Home Care Costs, Sept. 2006)

From the Social Security Administration’s Office of Policy I learned that the median annual income in 2004 of the 75-79-year-old age group was $23912, and of the 80+ year-old group, $21271. Both groups include married and single, men and women. But if you look at the group most likely to need nursing home care–nonmarried women–the median annual incomes were $16429 and $16304, respectively.

The 2006 Federal Poverty Level for a family of 1 is $9800 per year.

Over 70% of nonmarried women 80 years and older make more than the FPL, but less than the average annual cost of a nursing home. So more than 70% of the female population in this most vulnerable group would be forced to impoverish themselves in order to be eligible for skilled nursing care, because their earnings exceed the poverty level but won’t buy them time in a nursing home.

Now I know I should adjust the income figures to 2006 levels, but it’s obvious that a couple of COLAs are not going to make a big difference in the overall picture.

On top of all this, consider that Medicaid was not meant to be “worked” this way, but it is, and one can understand why. Medicare does NOT take care of us.

I was just over at the Alzheimer’s Association Caregiver Forum where someone had posted a message about the caregiver’s stages. I think I passed from one stage to the next on Sunday night, in a matter of minutes. I had a meltdown right in front of my mother (which I had tried never to do) and although it seemed to come out of the blue, these transitions never do.

It doesn’t really matter what specifically precipitated it, because it could–and would–have been anything. In an instant I knew I was going to start crying, in a way I hadn’t cried since my Dustin died, so I went into my bedroom and lay down in the dark. But I can’t close the bedroom door without arousing my mother’s curiousity and I couldn’t keep myself quiet, so she followed me in. I just let it all out, and she tried to comfort me and understand why I was so upset. Of course I can’t tell her that she is the reason I’m sad.

Well, it’s actually not that simple. The real problem is that I cannot get it into my head that I can’t have a rational discussion with her about assisted living. I tried again on Sunday afternoon, using the “I’d like to move back into my house” tack. Of course you do, she said, as she always does. I can’t leave you alone, I said. She agreed with me on this until I suggested, once again, that she move somewhere where she’d always have someone around, even when I’m at work. I would never do that, she replied.

How do people do this? Why does it have to be so awful? I know I sound like an 8-year-old, but I also feel like one. Old enough to know there’s something dreadful afoot but too powerless to combat it. And I think I reverted to my 8-year-old bag of tricks when I burst into tears later in the evening.

I’ve read the most moving and heartbreaking personal accounts of how loving family members moved their moms and dads into assisted living or nursing homes. Nearly all of these accounts caused intense grief at first, even though most of the moves resulted in an improved situation for all. Almost everyone I’ve spoken to says they wish they had done it sooner, but I understand how one can believe that remaining in one’s home is best. It’s still excruciating.

Another issue is that I’m into my third week away from work, and Thanksgiving is coming up in a couple of days–it doesn’t look like we’ll be spending it with family, which disappoints me. And Saturday was the seventh anniversary of my father’s death. And my 13-year-old dog Lily is having increasing difficulty getting around–am I just hanging on to her because I’m afraid of losing one more part of my life?

So my mother is now following me around, worrying that I may be “coming down with something” and wanting to help, which is sweet but also accentuates how our relationship has changed. Tonight she said good-night at least five times, each time telling me that she was going to leave her door open during the night in case I needed her. I feel my eyes well up, just writing that.

I was still very upset today, so I called the local Alzheimer’s Association and talked to the social worker there, who sounds wonderful. I made an appointment to talk with her, which I should have done much sooner than now. I have a med appointment tomorrow with my longterm psychiatrist and I’ll ask him to refer me to a therapist. Can’t do this much longer.