A cautionary tale

Things have changed dramatically in the two months since I last posted about my mom. She has gotten out of bed at night and fallen, twice, resulting in one trip to the ER and 2 staples in her head. She’s had a UTI. Her ability to remember how to do the simplest things is slowly slipping away. Mornings are frustrating and chaotic, when she doesn’t remember how to get out of bed. I’m not talking about her willingness, or her body’s ability to get up (although those can be lacking at times too). I’m talking about knowing how to turn over her body, lift her head, swing her legs over and use her arms to get up. It’s such an automatic action, I had a hard time telling her how to do it. I had to actually lie down and catalog the steps involved in getting out of bed, so I could verbally walk her through them one by one.

And, there’s been poop. She’s not usually bowel incontinent, but poop has been featured way too often in our mother-daughter time. For instance,(this is the least gross of the stories) last week after pooping, she didn’t want to get up from the toilet. “Alright”, I said, “You stay here while I empty your trash basket. I’ll be right back.” I walked to the back door to set her trash outside and turned around. I heard a deep hearty laugh coming from her room. I turned the corner into her room and saw her with her walker, and her depends and pants around her ankles, chortling and shaking her head as if she’d said something remarkably nuanced and clever. I went into her bathroom, and there sat her poop. On the toilet seat. It took me a moment or two to process what I was seeing. She had reached into the toilet bowl, picked up her stool, and placed it on the toilet seat. Inside I was screaming ohmyGodohmyGodohmyGodwhatthehellamigoingtodowiththat?, On the outside, I managed a fake sickly smile, “Oh. There’s a poop. On the toilet seat.” She acted like a two year old who had been caught doing something she knows is bad. She has beautiful Elizabeth Taylor- like eyes, which she opened wide. “There IS? How did it get there?” The rest of the afternoon was spent disinfecting everything in sight. I am trying to look at the whole thing as a cautionary tale: 1) constant vigilance is needed to keep her safe; and 2) you should think twice before taking the hand of sweet, little, blue eyed old ladies.

It was also a reminder that mentally, she’s like Benjamin Buttons, aging in reverse. In May, Mark and I thought she was on par with our 4 year old grandson in general ability to reason. Now, we’d have to say that she’s generally like a 2-4 year old, with moments of clarity interspersed throughout the day. Today she thought I was her grandmother. Yesterday, she had a coherent(ish), logical phone conversation with her granddaughter who lives in Chicago.

The stress is adding up. There’s tons of material about caregiver burnout, but I thought that somehow I wouldn’t be subjected to it. I have a wonderful husband supporting me. I’m patient. I’m physically active. I thought those things would make me immune to the very real stresses I’ve heard so many other caregivers talk about. But, I was wrong. Caring for my mom over the last 2 ½ years has taken an emotional and physical toll on me. It’s going to be a hard decision, but I think the time is coming for her to be placed in a facility.

It’s not just for kids – the growing trend of daycare for adults with dementia

…… In millions of households across the world, battles are waged each morning. In my house, Marlene refuses to get up. She wants ice cream for breakfast. She doesn’t want to take her vitamins. She screams in terror if a wet washcloth comes near her face. She wants to wear her pajamas over her clothes. Each of these battles must be approached strategically, without revealing disapproval of her choices. Yet, when the bus arrives, she looks at me expectantly, waiting for me to walk her outside. She scarcely looks back when I wave good bye and say “Bye, Mom, have a good day at school.” Yes, Marlene is my 78 year old mother, not my preschooler. She has Alzheimer’s, and four days a week she goes to daycare.

…..That’s the beginning paragraph of an article/blog post about adult daycare that I did in Spanish for my latest class, “Spanish for the Media”, which was a modern journalism type course with a focus on news sources and stories in the Spanish speaking world. My professor suggested that I post it online. The first paragraph is the only one that I have an exact translation of right now, but if you’d like to read it in Spanish, you can find it on my “en español” page.

“…and it’s getting more and more absurd”

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A couple of times a week, Mark and I drive to the beach to run, for a change of scenery. There’s a very nice long promenade, not far from here, with a lot of activity that gives us many opportunities for people watching. On the way home, we have fun comparing notes on what we observed.

Maybe our lives are a little dull because we take GREAT delight in imagining what the people we see on the promenade are up to and discussing the make believe lives we’ve created for them. The promenade provides us with a plethora of subjects ranging from surfers and swimmers heading to and from the beach, walkers, in-line skaters, bicyclists, loiterers, and other runners. (Or in our minds, former Navy Seals, Everest climbers, assassins, spies, lottery winners and future Olympians. )

I think what originally started me on these observations is the snippets of conversation I hear as I run past people at my blazing speed (um, not), and people move in and out of earshot. I end up with just a little bit of their conversation to work with but I want to know more.

For example-

Who was the woman being discussed by two town workers repairing a fence along the sand dunes: Worker No. 1: “The problem is she’s never had to want for anything.” Worker No. 2: “No, the problem is, she don’t love you.”

What sensationalized story of the day was being discussed by two men who seem to have been transplanted from NJ, when one stated to his companion “You can’t believe everything you read” in response to his friend saying “Well all I know is that I read that 5,000 people are going to lose their job.”

Who was the powerwalking man talking to on the phone when he loudly exclaimed: “What you need to do is get your attorney to subpoena all the records from the bank!”

Was Alzheimer’s the real issue behind a 50ish year old woman declaring to her frail mother, angrily, “No, no quiero que lo haces. Digame, y lo recogere.” (I don’t want you to do it, tell me, and I will pick it up for you.)

How long had this couple been married, and how many times have they had this conversation: A very old lady walking along with her husband – “Did you make today?” Her husband – “Yeah, I made today, right before we left. Did you make?”

(Those are all real life examples from the last few weeks.)

I so enjoy these odds and ends of conversation that they stick with me and run around and around in my head for days to come. Each time I conjure up the image of a particular snippet I come up with new scenarios on the circumstances of these conversations with each one often more outrageous than the previous one. For Mark and me, it’s entertaining.

Well, as I sit with my mom trying to watch a TV show I think is simple enough for her to follow, I realize that my unintentional eavesdropping is very much like her life. Only small snippets of what she sees and hears gets through to her and she needs the rest of the story filled in for her. She’s not capable of filling in the blanks herself. And it’s not at all entertaining to her.

While I know that what I accidently hear on the promenade has no relevance to my life, she doesn’t always fully comprehend that what little Timmy does on Lassie doesn’t directly impact her. And, so that means, even in a show like “Lassie”, or “Bewitched”, she might turn to me and say, “I don’t get it!! What’s going on??”

Or, when Mark and I say something casual to each other about the weather, or shopping, or anything, she’s immediately concerned that she missed something important, so we need to stop our conversation, and recap what’s been said, in terms she can understand. Sometimes, she repeats what she thinks we said, and, while she still uses real words, it’s nonsensical, with combinations of words that wouldn’t make sense in any situation.

It doesn’t help that she’s hard of hearing, and no longer knows how to use her hearing aids, but clearly, that’s only part of what’s going on.

Conversations with my mom these days remind me of a line from an Elton John song: “It’s sad, so sad, it’s a sad, sad situation, and it’s getting more and more absurd.”

“Some people are just delusional”

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My mother has virtually no memories of her life, but there are large parts of her personality that are still intact. She is still incredibly compassionate when someone is hurt. She still loves babies and children. She still knows what it’s like to have a sense of humor, and tries to joke. The jokes can go one of several ways – sometimes they are actually funny, sometimes they are off-color and end up being incredibly awkward, and sometimes, they make no sense at all, and with any other audience, would fall flat. We laugh anyways. And, sometimes she makes us laugh without meaning to. There, we judge carefully whether we can laugh immediately, or if we need to avoid each other’s eyes, and hold our laughter in until we can get to another room.

Unfortunately, some of the not so nice elements of my mom’s personality have remained also, in particular, her tendency towards unreasonable jealousy. (I say that hesitantly, knowing that there are people who believe jealousy is never reasonable.) Knowing that my impression of my parents’ marriage may not be objective, I’m not sure whether or not my dad’s behavior would have evoked jealousy in someone else, but my mom was sometimes crazy in her jealousy over him. And, I am certain that the man she married 6 years after my dad died did nothing that would make a normal person jealous. Yet not too long into the marriage, she was making all sorts of ridiculous accusations – an early warning sign of her Alzheimer’s perhaps, except that it wasn’t that far of a leap from the behavior she has exhibited her whole life. She would accuse him of using his 30 minutes walking the dog twice a day to conduct an affair with various women in the neighborhood. I have mixed feelings about the role her ex played in her life, but he was basically a kind, decent, very proper sort of man, and I don’t think for a minute that he was cheating on her, during their 7 year marriage, or in the 6 subsequent years that they continued to live together.

But, while he was not a cheater, he sometimes stirred up trouble. When my mom moved into this house, the area behind her was wooded. Soon, the woods were ripped out to make room for new houses. When someone bought the house behind her, they ripped out the hedge, and installed a fence about 6 inches over what my mom had thought was her property line. Her ex was incensed by this. When we were cleaning out my mom’s papers, we found many written memos from the ex to my mom (yes, he wrote her memos and printed them out, while they were living in the same house), advising her on what to put in her letters to the attorney he had engaged on my mom’s behalf. It all came to nothing. Documents we saw indicated that the neighbor had merely put her fence on the legal property line.

Fast forward several years, and my mom scarcely remembers either of her husbands. She has brought up the ex only 3 or 4 times since we last saw him in August, and we’ve suggested that she give him a call. Her response was the same each time – “I think {the ex} thinks we’ve broken up, so good riddance.” She’s very dismissive about it, and doesn’t appear to harbor any feelings about him no longer being in her life.

But, she still has her jealous side, and she definitively remembers her overall feelings about her neighbor, who Mark and I have met several times. The neighbor seems to be a friendly, caring person, and in fact, is one of the few people who ever inquires about my mom’s overall health, and the progress of the disease. My mom doesn’t want to hear that though. One afternoon, she saw a banana leaf lying in the backyard, and decided that the neighbor had thrown it there. I know that contradicting someone with Alzheimer’s isn’t advised, but we don’t like my mom to feed on negative feelings. Mark assured my mom that the leaf just came down from the banana tree in our yard, and that the neighbor seems to be a perfectly nice retiree who would never do something like that. Big mistake. My mom became enraged. She turned and looked at me with big eyes, and asked, “Did you know about this?” Uh, did I know about what? ‘This, this, THING going on between your husband and that woman!!” Huh?? “Did you know he was carrying on behind your back??”

The next several minutes were a back and forth between the three of us about love, marriage and trust. Mark repeatedly told her that to him, I am the most wonderful woman and wife in the world. I told her that I love Mark and trust him completely. Crazy, I know, trying to reason with a crazy person. She thought it was unfathomable that I have the confidence in myself to trust him talking to the neighbor. She’s had that attitude with me other times too, as if I’m just not quite good enough to be so sure of myself, and that’s something I’ve only seen since the Alzheimer’s diagnosis. But, my sisters are 6 and 9 years younger than me, and they’ve told me they remember digs like that to their self confidence when they were growing up. Evidence, I guess, that kids in the same house can have completely different experiences.

After a much longer conversation than we ever should have allowed, she snorted, tried to look down her nose at me that it seems only someone born in England can properly do, and said “Some people are just delusional. ”  Then, she redirected her attention to the TV.

Who was being delusional – me in thinking that Mark loves me? Mark, in thinking I’m the most wonderful woman in the world? Certainly SHE wasn’t the delusional one. This was definitely a moment when we had to avoid making too much eye contact, or we would have burst out laughing. Taking care of an Alzheimer’s patient often isn’t fun, so it’s good when we have laughable moments.

We’re still here

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It’s been months since I’ve blogged, but we’re still here. My mom has slipped quite a bit over the last year that we’ve been living with her, but that’s what the disease does. Overall, she is doing as well as can be expected. Normally, she’s cooperative and pleasant, which is a wonderful change from a year ago. I’m not sure if that’s because she doesn’t have as much fear in her day as she did when she was trying to figure out things on her own, or if it’s just the progress of the disease.

That’s not to say she doesn’t have some challenging behaviors. For instance, if left alone in her room or bathroom for any length of time whatsoever, she comes out without pants on. Redirecting is important then, because if confronted with the fact that she’s pant-less, she will deny it, and insist she’s wearing them.

I also had an incident when, after telling my mom it was time to get ready for her shower, I turned around and saw that she had removed her PJ top. While sitting in her chair, in the living room, watching TV. She took me literally, I guess, and forgot all the steps that lead up to taking off her clothes, like getting herself into her bathroom. Luckily Mark wasn’t home, because I’m afraid he would have been permanently damaged if he’d had to deal with that.

She gets regular UTIs, which can cause dementia-like symptoms in the elderly even if they don’t have Alzheimer’s. This, I’ve learned, is a result of a failure in her brain more than her body. Her brain no longer tells her body to fight the bacteria that cause UTIs. I’m pretty good at detecting the changes in her that indicate an infection. Fever is not generally one of them. And, the day care center she goes to (now 4 days a week, 5 hours a day) is co-located with her doctor’s office, so they take care of it right away. Unfortunately, the bacteria she is dealing with is resistant to antibiotics, which could cause some additional problems later on.

She accepts help from me willingly, even expects it. I dress her and undress her, although she ineffectively will try to work at the buttons. It’s always a balance, letting her try to do for herself vs. not letting her get frustrated. I tell her what to do, step by step, when she’s using the bathroom, and am grateful that she can still execute the directions herself. One night, when she looked to me to tell her what to do after washing her hands (“turn off the water now”), she said, “I can’t believe I don’t remember that. What if I’m losing my mind?” I reassured her that she didn’t have to worry about that, that everyone needs reminders once and a while, and that no matter what happened, she would always have someone around to remind her of things

I don’t think she’s quite as cooperative with the aides at the day care center, which she calls school, or with the aide who comes to the house 2 or 3 hours at a time, 3 days a week. But, she’s used to them, and will refer to the aide at the house by name. She seems to have accepted the fact that we will not leave her alone. She occasionally still protests that it’s not necessary for her to have a babysitter, but not with the vehemence she used to have.

But, whatever she forgets – pants, her other kids, how to turn off the water – if bed time comes, and she hasn’t had her ice cream for dessert – she remembers! Very strange, like so many other things about Alzheimer’s.

“What have you done with your husband’s MIND?”

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My oh my, how my mother has changed. Several months ago, she was completely resistant to the idea that she needed help with anything. She neither tried nor was capable of choosing her clothes, getting dressed/undressed herself, not to mention cooking or cleaning, but still denied needing help. A few days ago, after a particularly frustrating bathroom experience, I brought up the idea of getting a little additional help in the house. My mom’s reply was “Oh, don’t be ridiculous. You can do it all yourself.” I was floored. I suggested that I’d like a little help, to spread the load across more hands, and she was quick to say “You’re being silly. This is much easier for me.” Yes, the truth comes out. Although, it’s not so easy to understand sometimes.

Dinner time often becomes a time of wild conversations. One evening, she finally agreed to visit my sister and her family, because, in her words, she’s related to my nieces through my brother in law, rather than her daughter. She was insistent that she never gave birth to my sister, and that it’s my sister’s husband who is my mom’s natural child. Ok. Pretty wild. We changed the subject. She came out with the fact that Mark is her son-in-law though, and when Mark said, “Yep, I married your daughter, best move I ever made”, she was incredulous, and in a voice full of pity, disbelief and a little meanness, asked, “You married her? THAT was your best move?” How can you not laugh in response to that? Even though she seemed completely serious. Conversation proceeded on other topics, and from that point on, it was generally a “feel-good” type of exchange. Or so I thought. As we were wrapping up, my mom turned to me and wanted to know “What have you done with Mark’s mind?” Huh? Again, “What have you done with your husband’s MIND?”, with the clear implication that he’s suffering from some sort of disorder. Oh, the irony. I didn’t know how to answer that. Mark told her reassuringly that whatever was wrong with his mind wasn’t my fault. All of that was actually one of the more clear conversations. There are other, more convoluted exchanges without any thread of reason we can follow. We listen, make interested noises, and try to pull more information from her, to see if there’s a trail of anything we can make a conversation of. Sometimes it works, sometimes it doesn’t.

Other times, she floors us with the normal, everyday things she remembers. Mark and my mom pick me up at the train station twice a week after my Spanish class. Yesterday, she asked Mark what time they were going to go pick me up – with no reminder from him that they were going at all. Another day, at lunch, she asked Mark if he was going to make her another ham and cheese sandwich, because it had been so good the day before.

She is sleeping 12 hours a night now, along with her little catnaps in the day. We are lucky that she sleeps through the night, and is allowing me to get her into bed at 8PM without fussing too much. We can hear her talking sometimes when we’re finished with her bedtime routine. She’ll often say a version of “I know you aren’t really going to bed, I’m not stupid you know”, and then she seems to fall right to sleep. Another time, she said “My daddy won’t let them drop bombs on our house.” (From her childhood in wartime England.) After that one, I went in to comfort her.

One morning, she was incredulous that I don’t remember the beautiful skirt she had in high school. She really wishes she still had it, and doesn’t understand how I could have forgotten. I asked if it would still fit her, and she told me of course it would, because she’s basically the same size she was 10 or 15 years ago. I said nothing to disillusion her, on either her size or her age.

With all of this, and her decline physically (using a walker, further decline in ability to do ADLs), it’s no surprise to hear that her mini mental state exam score has dropped drastically in the last 6 months – much, much more than the 2-4 points that my online readings say is typical for an entire year. Mark thinks that her initial score was artificially high. That’s probably true, but I also think she never bounced back completely from her last two UTIs.

For those of you familiar with Alzheimer’s stages, I’m pretty sure she’s a late stage 5, which generally puts her brain capabilities on par with that of a 4-8 year old. Like everyone else in the position of caregiver, we have no idea how long this stage will last – another year before we can’t handle her at home? Another 3 years? Or, will our personal limits come before that? Lots of unknowns.

“It’s Christmas Day today”

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“It’s Christmas Day today!” , exclaimed my mother, this morning, January 3. “Uh, no, not today mom, but it was last week. We had such a nice time, didn’t we, visiting with your other children on Christmas Eve, then having everyone over here for dinner on Christmas Day! You were like a queen, with all your subjects around you!” She was having none of that. She was emphatic – “That’s what should have happened, but it didn’t.” She got mad because we took the tree down yesterday while she was at “school”. It took her a day to notice, which didn’t surprise me, because it didn’t seem to bring her any particular pleasure when it was up. Then, she was heartbroken because, in her words, “I missed Christmas.”

I supposed I should have expected something like this. The day after Christmas, about 10 minutes after my sister from Chicago left, my mom’s face clouded over, and she said, “It’s too bad everyone couldn’t come over to visit today.”

Her memory problems are very discriminatory. Huge events in her life, good and bad both, are completely unfamiliar to her. But, she remembers that she likes to wear dark pants, so potential leaks aren’t as obvious.   She forgets that her daughter from Chicago was here with her 2 kids. She remembers her grandmother’s name. She forgets her bathroom routine. She remembers that leaning on my arm instead of using her walker causes me pain. She has to ask 5 times or more “what day of the week is it?”, but can make a very appropriate joke about riding off on her broom after she’s been particularly demanding with me. The brain is a strange and mysterious thing. Weird, weird, weird.

Back to today – we thought we’d recovered from the Christmas memories/lack of them. Mark and I chatted about how nice the tree was, and how great it was she got to see most of her grandchildren. We talked about how pretty she looked, and all the lovely clothes she received as gifts. Her memories of the day never seemed to return, but her anguish over missing it seemed to subside as we assured her the day was everything she could have wanted. Later, she laughed heartily at the antics of 101 Dalmatians, as she always does, and was completely engrossed in the Wizard of Oz. I thought we’d banished her grief, then suddenly, out of nowhere, she said, “I miss the tree.” I tried to be comforting, and then said “Aww, I’m sorry mom. But, we’ll get another beautiful one next Christmas.” She was quick to reply, in a screeching tone,  “Next Christmas?? I could be dead by then!!”  I was floored. Was she manipulating me? Was there a never before seen inner awareness of her disease? I don’t suppose I’ll ever know.

The Disease progresses

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Alzheimer’s is continuing its horrible assault on my mom’s brain. In the past three months, she’s noticeably declined. She had a UTI that was resistant to the first antibiotic she was given. A year ago, I would have immediately attributed the infection to hygiene, but now, I know that another factor is the brain no longer telling the body to fight infections. Physically, she hasn’t bounced back. She is using a walker now. She can’t get dressed by herself. Two instructions at a time – like, “wash your hands then take out your teeth”, or “clench your teeth together while you walk to your chair’ – are more than she can follow. She is completely bladder incontinent, and needs direction and assistance each time she uses the bathroom. Soon, that will limit our ability to take my sister up on her offers every week or two to have my mom visit. Bathroom duties are just not something everyone can handle.

She still has some of her personality though, and usually tries to interact with people around her. She makes funny observations about the TV – programs and commercials get equal attention from her — and enjoys watching football with Mark.  Some family visited at Christmas, and she was very conscious of staying awake when they were around. As a result, she was sleeping 12-13 hours a night, as well as cat naps when they weren’t here. Since they’ve gone, she’s backed off to 11 – 12 a night instead. AND, very unusual for her, she’s started asking me if it’s bed time yet, a full hour to hour and a half before I would normally even dream of suggesting she get ready for bed. While I feel bad that she’s exhausted and done with her day at 7:30, it is nice to have a little extra time alone with Mark.

Other than the holidays, her routine has been stable for the past few months. She’s adjusted reasonably well to N, who comes over for two hours at a time, 3 days a week. Mark and I take that time to go run at the beach. I know my mom doesn’t love it, but she accepts it, and often asks in the morning if this is the day that N comes. I love the days when N is here. Not only does she get my mom bathed and dressed, but she also does laundry, the dishes, keeps the bathrooms cleaned and mops the floor. Having her help makes a world of difference to us.

My mom is still going to “school” three days a week. Again, she doesn’t love it, but accepts it as her routine, and will stress if she thinks she’s running late for the bus. (She never is, although now she takes literally twice as long to get ready as she did in August.) We rarely hear anything about her day from her. We did hear from the nutritionist though, about two months ago. Apparently my mom was getting agitated in the morning, when other “students” would get toast, and she couldn’t have any, because of her gluten sensitivity. The nutritionist suggested that we send in some of her gluten free bread for them to keep in the freezer, so the kitchen staff could give her something. We did, and since then, my mom apparently is appeased. According to the center manager, she objects to someone helping her with her bathroom activities, but they have a little routine they act out each time to get around that

She’s also had some stand out Alzheimer’s moments in her conversation, like in the middle of a chat with me, when she leaned forward very engagingly and asked “So, when did I meet you?”. Or when she was happy with the way I was scurrying around to keep her comfortable, and said “One thing about my mother or step mother or what ever you are to me, you take good care of me.” I’m actually not certain that she didn’t know I was her daughter. Instead, I thought it was more like her language skills were failing her. Ditto for when I told her I was changing her sheets, and she replied “Is my breath that bad?” She was worried about the sheets smelling bad but just couldn’t come up with the words to express it properly.

I realize that we are lucky to have the support that we do – the caregiver for 6 hours a week, the day care center for 3 days a week, and the attentive medical staff that are all provided by PACE, which exists for the purpose of keeping the elderly with chronic health problems (including dementia) living in their own homes as long as it’s safe. To participate in PACE you must be at least 55, and be certified as needing nursing home care.  There are 106 similar programs in the country, and I am so, so, grateful that we live in one of the service areas. You can find information on PACE online. We have been impressed with the quality of both their direct staff and their contract staff.

Even with the support we get, I’ve been really struggling mentally with the burden of caring for my mom. I just can’t seem to get the hang of treating this time like it’s real life, instead of a horrible purgatory that I’ve condemned myself to. Mark is much better at that than I am. There’s no doubt in my mind, that without him, I would have already given up and gotten my mom settled into an ALF. I say that, but at the same time, have a horrible time thinking of what an ALF will mean to her, especially since she doesn’t have the funds for any of the upscale private facilities in this area. A dementia patient is so fragile, so unsure, so scared. I think that fear is what made her so nasty and angry before we moved in, when she was living here with just her ex-husband-turned-roommate. In spite of the progression of the disease, she’s much happier now, and feels loved and cared for. I’m glad we’ve been able to do that for her. But, I don’t know how many more years of this life is healthy for Mark and me.  I’m just not sure yet where the line will be, when I say I just can’t handle it any more.