A New Home
For the last year of my mother's life, I kept and posted a blog, assuming her voice. The intent at that time was to provide continuing contact with friends and members of the extended family, who were spread across the country. The blog did well at that function. At this time, many of the entries about fleeting or remote events no longer seem of interest. What follows is a subset of them that seems to be of enduring value, for the story of my mother's life and the participation of others around her.
– Paul Nordberg
May 9, 2009 [predated]
In May of 2009, I moved from Fox Point to a new home at The Atrium at Veronica Drive, close to Paul in Ipswich. The facility had an excellent reputation. The setting was rustic, much like what I was used to in Fox Point. Paul even got a bird feeder for outside my window and kept it filled with seed. (One day, a big wild turkey came to the feeder and I laughed, because I could tell there was something odd going on, though I couldn't quite say what.) The interior was spacious and modern. I didn't feel any big change; I just observed, "They have a lot more people here than they used to."
I came in able to walk around and talk and enjoy myself. In the months that followed, my dementia advanced rapidly along to the point that I had lost nearly all of my ability to speak and was wheelchair-bound. Our PCP advised that she felt a nursing home would be the most appropriate place for me. We listened and looked around carefully and followed her advice, moving to Rosewood nearby.
I thought about the decision for my mother's placement about as carefully as I'd ever thought about anything in my life. I looked at published ratings and reports, talked with friends and colleagues, and visited a number of candidate residences. After deliberation, I selected The Atrium at Veronica Drive in Danvers.
After the fact, I can't fault my decision-making process as process, but the result was far from the hope. (If only we knew the future for sure, we could easily avoid it!) I still feel intense dismay and anger and bitterness at the care for my mother.
For example, the last Christmas Day she was there, I went early so as to be there for breakfast. Puzzled when my mother was not visible, I went to her room and found her naked on the floor, unable to get herself up. No individual staff member was responsible for her morning care or noticed her absence, and the leadership and staff collectively had no roll-call process in place to make sure all the residents were accounted for. This in a home for demented people! To add insult to injury, the staff member who was assigned to help her after my discovery was actively and grossly rude to me.
In the year when she left, The Atrium had four different executive directors, interim and long-term. What does that tell you about the leadership there?
In fairness, that was many years ago, and there were some signs of improvement later. I do not know what it is like today.
– Paul Nordberg
April 7, 2010 [predated]
The younger of my sons, Peter, died early and unexpectedly a few years ago. It is one of the bittersweet blessings of my life that this happened after my Alzheimer's disease had progressed so far that I had no notion of him or other family, or ability to understand the event. It would have broken my heart with a hurt that would not have healed for a long time.
As it happened, the time was exactly when Peter had been planning to drive up from Philadelphia to visit me at The Atrium in Danvers.
August 18, 2013
Naps are good things.
Heavens, if a body is 86 and wants to rest, she should be able to have a nice, peaceful, quiet spell.
My room is a good place for resting. Around mealtimes, it gets noisy with all the hustle and bustle of people moving around and calling out to each other, but that's mealtime for me, too.
September 16, 2013
I sometimes lean to my right side. Maybe that's partly a matter of strength, partly an effect of the strokes. More often, I want to sit up as straight as I can. My new wheelchair has side supports so when I am leaning, I don't get myself into trouble with letting my hand dangle into the wheel area. People say they think it's just right.
It is quite the fancy piece of apparatus, I must say.
You can see that my hair is curled and that I have jewelry on. Blessing, one of the aides here, does a good job of dressing me and making me look nice. As Paul says, if you don't know what you're doing, the next best thing is to look like it!
Comment by Paul: you can see that Mom has a bit of right-sided facial droop in this picture. That symptom is typical of strokes. I am not sure what's going on, but I tend to guess that she has a chronic micro bleed.
September 17, 2013
I got various nice presents for my birthday. As you may know, sometimes I have trouble sitting up straight, kind of liking to lean to the right and lean my head against something if I can. So there is a shiny new black wheelchair that has side supports and reclines. With the high back and arms, it makes me feel rather like a queen sitting in her throne. One of the aides here thought we should have a curling iron, since my hair is hanging down so straight.
So Paul got me one. We also had fun things like a bag of chocolate cookies (on the one-a-day system). I can't really manage eating utensils any more, but can hold cookies in my hand and have come to love them as my favorite things. In fact, they make one of the few words in my active vocabulary: "yeah," "no," "cookie," and "cracker."
Goodness, quite the celebration of being 87!
September 28, 2013
The people here are using a hoist called a Hoyer lift to help me get in and out of my wheelchair, and in and out of bed. It is a kind of power hoist with a sling that you sit in, along the lines of a rubber swing seat in a playground, but with more security and safety features.
Sometimes people really freak out if they are lifted up by Hoyers. My husband Bob certainly was the one or two times they tried it with him. It hasn't bothered me, though. And some of the staff here are not big, strong folks, so it helps make things easier for them.
October 1, 2013
Note by Paul: The Alzheimer's Association describes seven phases of progression, from "Stage 1: No impairment" to "Stage 7: Very severe cognitive decline."
In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases. At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing [is] impaired.
Sometimes people divide the last phase into Substages 7a to 7f. I seem to fit fairly well into Stage 7d or 7e of this system.
We can't know for sure without an autopsy, but I think it is likely that Mom has end-stage Alzheimer's along with cerebral amyloid angiopathy. The latter involves the blood vessels of the lobes of the brain becoming brittle and frail with the same beta amyloid that characterizes Alzheimer's, tending to lead to bleeding strokes such as the one in 2009 that spelled the end of her ability to live independently.
October 5, 2013
I am coughing and sneezing and hoarse and tired, and perhaps a little cranky about it all. Well, the best thing is to sleep it off, waking up for short spells about long enough to have some juice to drink.
Note by Paul: This does look like a cold, nothing worse. For all of their good points, the nursing home staff do not grasp the fundamentals of infection control. Mom was sleeping comfortably and breathing regularly when I left her. Elevating the head of the bed by 30 degrees made an amazing and nearly instantaneous difference. Mom is frail, but she has proved very good at bouncing back from routine viruses.
October 9, 2013
After a few days mainly in bed with my cold, I am back up again. I'm still feeling a bit under the weather and quite phlegmy, but my lungs are drying and clearing themselves out. With any luck, in a couple of days I'll be back very close to normal.
October 12, 2013
I am so touched with all of the emails and calls and comments I've received from you! Thank you for all of the time you've spent and your kind words.
I've enjoyed your updates on your own families so much. Small children are no longer small, and new generations are being born. We'll be updating our picture displays here as we receive new material from you.
(And it also feels good to be pretty much over my cold by now. Thank heavens for that.)
October 21, 2013
I got a belated birthday card with an added note, which Paul read to me aloud. It concluded, "87 is a big number!" I'm not so good any more at higher mathematics or literary analysis, but I could tell from the way Paul read it that something was going on, and it seemed that there was fun involved.
So we had a good laugh together, as you can see.
(And thank you very much for the card and note.)
October 23, 2013
It is starting to get a little cooler, especially as the sun goes down earlier. It's nice to be able to have something warm to wrap around me that's not too hard to get into and out of. Unfortunately a lot of the nicer looking shawls are frilly and fragile and dry-clean only, and so not practical for me. Paul looked and looked for my birthday a year ago and found this one, which we agree is very snug and practical but not the most attractive thing you ever saw.
Does anyone have any ideas about where to find a warm, washable, attractive shawl? It seems like there should be such a thing.
Note by Paul: In fact, this post led to two new shawls coming, one from the West Coast and one from the East Coast. People very readily relate and respond to primal needs!
October 23, 2013
Rosewood Nursing Home is in a clean, modern building in a woody setting. It is light and airy, with a lot of windows. My room looks out over a landscape of trees and sky, which makes it a pleasant place to live in. Inside, I have several of my paintings hung up, and chosen furniture, so that it feels like my own home.
Of course, the people matter much more than the building, but they are nice too.
October 29, 2013
I am not sure if you remember the very early moments in your life when your mother was the consuming love of your life and, on top of that, your devoted provider of food. It's a little bit like that with me. There is someone who visits me every day and brings me meals. I'm not quite sure who he is, although he seems vaguely familiar sometimes.
I occasionally will reach out for a bite to eat with my left hand. (I'm not left-handed, but somehow or the other I have figured out that after my big stroke, my sense of where my right hand is is way off.) Most of the time, it is kind of nice to have the food and drinks delivered. I am not very good at using utensils any more, but I can use this person's hand and arm as a kind of a smart fork. I mean, if I pull the arm toward me, it knows that I am looking for another bite now, and aims the bite just at the right place. Well, once in a while we miss, but that isn't very often.
(This is an inside joke. The "food man" is Beverly's son Paul.)
November 8, 2013
I wasn't feeling a lot of energy this Friday afternoon, and sitting up seemed to be a bit much. So we decided that I could stay in bed and rest after my afternoon nap time was officially over. I am sleeping comfortably with deep, regular breathing and no temperature or other abnormal vital signs. Sometimes I have a little bit of a dream and start to talk in my sleep for a few seconds, and sometimes there is half of a snore. But mostly it's very quiet and peaceful.
Resting is a wonderful thing. I expect that I will get up refreshed and energetic tomorrow morning.
November 10, 2013
Being a caregiver for a person well into Alzheimer's is not something one should undertake with expectations of appreciation or affection. The affected person is fundamentally losing ability to interact with his or her environment, and often may not even particularly distinguish between the presence of another human and the presence of an inanimate object or external sound. The most common request I get from family members and friends is, Give her a big hug from me. The reality is, Mom is apt to view hugs as threatening.
So it is a special treat when there is some recognition. Last night when Mom saw me, there was instantly a look of knowing and yearning and love on her face, the look of a mother who is no longer bereft. These moments come once every month or two or three. They make me feel wonderful when they happen, and help me continue to do my job through more ordinary days.
Comment by Janice: I can just imagine how that would feel. Your heart has to take a step back every so often, while your brain continues to deal with facts, I think. Hopefully, she might react if you give her a hug from Janice?
Response by Paul: It's true. Our head and our hearts are both good, but sometimes it's a moment for the one, sometimes a moment for the other.
November 29, 2013
I have had a seizure of some kind. I am unresponsive and my heartbeat is irregular, but I am breathing regularly and appear comfortable.
This has happened a couple of times before and resolved, but this kind of looks like a new event. Paul thinks it is a stroke in an area of my brain where I haven't had one before. It typically takes 24 or 48 hours for these kinds of things to work through their course.
It could be something different. We will be watching very carefully over the next couple of days.
November 30, 2013
… after 30 hours' sleep. I'm awake and chattering, and pulling at most things within reach. This is my normal mode.
Yesterday, some people who have a lot of experience with these things had guessed that I was about ready to check out. And we may have had a close call, but a miss is as good as a mile. I am leaning very strongly to my left side and having a bit of difficulty with the mechanics of eating, but let's see how another night's sleep works.
December 9, 2013
I love to shake hands and will go on as long as you will keep shaking hands with me, up and down, up and down, back and forth. It is like a baby being happily dandled on its mother's knee. Sometimes when Paul comes and we shake hands in the hallway, I don't want to let go so he can get in the back of the wheelchair to push me to my meal. So, what we've worked out is that Paul walks down in front of the wheelchair with his arm out to me, and I hold on and I roll down the hallway behind him, like a chariot in tow.
Kathy (one of the nurses here, a very nice person) reports to Paul that I was singing a soft song earlier this afternoon, shaking hands with her in time to the music, very happy with it all.
December 21, 2013
I must confess I was a little fussy and cranky for awhile tonight. Then there was a quiet spell. I was starting to open my mouth and look a bit yearning. Paul incorrectly guessed I was looking for something to eat. Actually, I wanted to give him a kiss to show that I was sorry. He caught on, and we had a nice snuggle. Then I gave one of my big cat-ate-the-canary grins. He wasn't quite quick enough to catch that with this picture.
In fact, I have on some red Christmasy colors in my outfit today, but you can't see much of that here. My turtleneck is pin
Mom's verbal abilities are at this point somewhere between slim to non-existent, but she retains her uncanny emotional intelligence, including the ability to anticipate how her behavior will affect other people. Similarly, she can sense a mile away when I'm trying to con her into something that she doesn't want to do, though she may have no idea of what the specifics are. – Paul
Comment from Janice:
Happy Holidays to two of the people I love best in the whole wide world!
It does sound as those everything is progressing at an even pace for both of you. Our Christmas is going to be spent here at our house, with Mark, Laurie and Sally coming over. The women will get to do part of the cooking, although Clyde is getting quite adept at cooking, too.
It is difficult for me to go to their homes, for they all have stairs for me to navigate and that creates too many problems.
Connie is on a three week cruise to the Orient, along with three of her friends from high school and college. These four women do quite a lot of traveling together and have stayed in close touch ever since school.. She says this is her grand finale and she will stay close to home from now on.
We think of the two of you often and I check Beverly's blog about twice a week.
Love to both of you from the two of us.
Response from Paul:
And love from both of us to all of your family.
Beverly & Paul
December 25, 2013
There was a lot of activity and excitement this morning, and I got the sense that something unusual was going on. It seemed like maybe something that would be nice and that I would want to be part of.
When I saw Paul, I reached out to give him a kiss and said, "Good, good, good girl." (Maybe my sister will remember if this is something our mother used to say to us.)
We had a big dinner. Paul made a dish called a daube de boeuf provençal, which is the sort of thing you cook in a slow oven for hours, and there was a kind of salad with baked winter squash, steamed apple bits, and other things. It was a lot of food.
All of that excitement is enough to tire a body out, though. I think an after-dinner nap will be the thing for me.
Anyway, love and merry Christmas to all.
This Christmas evening, I was in very fine fettle, chattering and laughing for much of the evening, as you can see here.
January 1, 2014
2013 was my third year at Rosewood Nursing Home. Overall, things have been pretty stable for me. I've tried to take good care of myself over the years, and it seems that those efforts have helped keep me in good health - at least from the neck down.
My dementia has advanced slowly over the last year, though hardly in a steady or predictable fashion. I've nearly lost the ability to feed myself. Sometimes I try, but if I pick up a bite while I’m still chewing on the last one, I get confused about what to do with the new one and often just put it back down again. My caregivers had given up on my feeding myself in 2009, though, so making through four more years coping for myself is an accomplishment. On other fronts, I started having some spells of strong agitation, so we decided to see if a mild medication would help. It did, tremendously. My motions are getting jerkier and I can’t straighten out some of my joints, especially my knees. But that's all right.
I've lost consciousness a couple of times this year, most recently on the day after Thanksgiving. I was very, very sick at that point, and not much of anybody expected me to make it through that spell. But here I am.
Mainly, things just seem to be getting quieter and quieter for me, and stiller and stiller, little by little.
I've tried to think about what 2014 might bring, but I just can't tell. I am very patient, and will wait and see what comes along. That is the best approach to take.
(The picture is a sketch by Paul for a planned oil portrait. Paul has a lot of things going on, though, so this one is advancing slowly.)
January 4, 2013
Thank you to all of you who checked on our well-being in the recent storm. It was a whopper, with close to two feet of snow and temperatures below zero, but everything worked out smoothly, with only a few delays here and there.
Wisconsin had much worse in my days there, and there is quite a cold snap headed that way, in fact.
(The image is in fact of a painting done by my mother in Wisconsin. – Paul
January 7, 2020
I happened to realize this Sunday that it's been over four years since there has been a picture of me and Paul together. I'm not sure how that can be, since we have been together just about every day for those years, but there it is.
We asked Kathy and Patty, two very wonderful nurses who work at Rosewood over the weekends, if one of them would take a picture of us. Patty took a number, including this one.
It is a relatively recent fashion, as these things go, that people are supposed to smile for pictures. Anyway, this didn't happen to be one of my smiley moments, but we will keep our eyes open for opportunities in the futur
Comment by Janice: What a lovely picture of two of my favorite people. It show the love Paul feels for my dear sister.....and I know how much she has always loved him.
Paul, I think what you have done creating this website is awesome. It's good to know how Aunt Beverly is doing, and you too! Keep up the good work. You are a person with a lot of love to give. Your cousin, Kerry.
Thank you, Kerry. It has been a while, to say the least. It is good to hear from you. I expect that in a little while, when Mom has a chance to come to rest, I will take a leisurely trip across the country and catch up with you and other friends.
January 20, 2014
I keep a hearty appetite, which is one of the things that people often lose when they get close to their last days.
Chewing is getting a little trickier, though. I am especially careful about bits of skin and pieces of leaf, which can go down the wrong way sometimes. This is kind of funny, because for most of my life my favored food has been salads. But we've learned various strategies, such as slicing cucumbers and pieces of chicken very thin, steaming vegetables and fruits, and grinding other things into very small pieces in a food mill. It's still the same food and tastes the same.
We haven't found a great strategy for arugula, which is one of Paul's favorites and quite perishable. Maybe we should try shredding it and serving it as a vegetable in the main course.
January 23, 2014
In the last part of his life, my Bob sometimes would have spells of agitation. For no apparent reason at all, he would be fearful and combative, unable to think or to reason, unconsolable. We found, fortunately, that most and the worst of these could be prevented by a regular regimen of medications. For him, it took a combination of a couple of the stronger things in the psychotropic arsenal, actually nearly enough to knock most people out. For him, amazingly, the restoration of calm enabled him to be much more alert and interactive. It was almost as if we had magically driven the bogey man away.
In the last months, I started to have similar spells, not nearly as bad as Bob's, but enough that my sad and painful moments began to outnumber my happy moments. Both Paul and the people at Rosewood were very reluctant to start medications for this, especially because I've had very strong adverse reactions to a couple of the most commonly used things. But we found a mild choice, and started with a very, very small dose, and very carefully and slowly worked our way upwards in quantity and frequency. We seem to have something that at this time is working very effectively to keep me calm without putting me flat on my back.
It does seem to have the effect of lowering the high spots as well, but this seems a more than reasonable price to pay for avoiding the very low and bumpy spots. Gosh, my body is slowing down and my mind is slowing down and we're putting a bridle on my emotions. It makes for a very quiet life.
Comment by Betty: I didn't know that about Bob needing that medication. So much I didn't know about his last years. I remember talking to him on the phone and his voice sounded different and he seemed nervous but he was in way better condition than he experienced close to his end.
We can be thankful that there are medications to bring us relief at any time in our lives.
It isn't easy getting old.....in fact, it is damned hard! Paul, you probably have some idea of how much I long to see Beverly....just to tell her how much I love her. There are so many different problems associated with this process of getting old. Most of the time, I can stay pretty positive and do try to be cheerful, but......sometimes it gets to me and a short bout of tears makes me realize how fortunate I am to have Clyde and the rest of our family.
Response by Paul: It is true.
A couple years ago, Mom was having spells of sobbing crying alternating with hysterical laughter. Her speech is usually beyond understanding, but on that evening the words seemed to be coming through: "I'm never going to get old again!" Indeed, once is enough.
Beverly does continue to call out for you by name fairly often.
February 3, 2014
The days are starting to get longer again, but it's still very cold and dark by after dinner time. We have quiet evenings together. I may take a short after-dinner nap, or I may chatter for a while when something crosses my mind. Mostly, I just think my thoughts and wait patiently.
Paul sometimes brings along an unfinished activity from the day to work on during our quiet spells. He has also started to read Montaigne's Essais on the one-a-day plan. There are about a hundred of them, published in 1595. They deal mostly with very ordinary topics, such as how we may laugh and cry at the same thing, or what to make of the inequality that exists between us. He (Montaigne) is undogmatic and unopinionated, freely questioning a lot of the curious and often contradictory ways that we behave.
It's funny – just after the last sentences were being written down, I moved from laughing to being agitated and calling out. But we have calmed down now.
Anyway, in a little while, maybe about 7:00, we will start setting out the things for my bedtime routine. Usually that comes a little after 7:30. I don't like the todo of the process some days, but I always fall right to sleep within a few minutes of being in bed.
February 7, 2014
Sometimes I work at whistling. Tonight I managed a few good whistles. Not songs, mind you, but good, resounding, clear tones. Paul, who is probably jealous because he never could figure out how to whistle at all, has never heard me do it before. He was impressed.
It goes to show.
February 25, 2014
My life from day to day, and week to week, is a bit of a roller coaster. I've learned not to make too much of any one moment, and to avoid expectations or predictions about what will happen when.
The last several months, though, have seen a few fairly apparent slow trends. I've pretty much totally lost my ability to feed myself, even if Paul puts something like a piece of bread in my hand. I am losing my strong instinct to hold onto things, recently usually keeping my arms folded close to my chest. My knees are bent, whether I'm sitting or in bed, and my legs won't straighten out at this point. The increasingly fetal posture may be a sign, the Alzheimer's Association remarks, that the time to say goodbye is nearing. For the last few years, I've been resisting routine care when it surprises me or invades my comfort, but now I'm just letting it happen with a small bit of transient fussing. I still chatter and laugh sometimes, less often than I used to, and much more softly.
But I've taken care of myself over the years and had a lot of good luck, so I'm a healthy woman from the neck down. I have none of the obvious diseases and problems that take down a lot of the other residents here, and I have an amazing record of bouncing back at times when the experts have written me off. So, we'll keep being patient, and see what the future brings each day.
Just thinking of you and Paul today and hope you both are experiencing peace.
It is a peaceful time, Kathy.
Beverly & Paul
Beverly kept surprising us though, didn't she? It does sound as though this time may be the end of her surprises. While I like to remember her as she was over so many years, I do wish I could be with you when the end does happen. Hopefully, you have many great friends for some support?
I was talking with one of the doctors I work with at the hospital about how we learn more and more to be humble about predicting key events. I've certainly come to be much more open and flexible about what comes than I was a while ago.
I find it very helpful to think that our lives extend over very long periods of time, and all of the other times of our life are no less important than the relatively short one we have now… however long it is. That's really just a drop in the bucket, and we shouldn't form all of our thinking about it.
I appreciate very much your support, the more so because Peter is gone, when Mom had wanted the two of us to talk about things. At least there are a couple of immediate family members, aside from the wider circle of relatives and very good friends.
February 28, 2020
After a three month spell of sitting up straight, I have decided again that I am more comfortable leaning to the right. I am perfectly happy and well and strong enough to raise myself up, but I like this way. You can see that I pull myself with my left arm toward the right arm rest.
March 9, 2014
Last night, I had my usual full dinner and, for good measure, an added graham cracker snack because Paul sensed there was a bit of appetite left. A little while later, I was opening my mouth and sticking out my tongue and leaning forward.
One of the staff asked me, Are you hungry, Beverly? I said no, which was much more of a speech than I can generally muster. But the question was a bit more complex than I usually can deal with, so we're not at all convinced that I understood it. They did bring me some ice water, which I drank readily and in short order. It seems to have been just what I wanted.
It's kind of funny being unable to more around very much, or to tell someone that I would like something I don't have. My way of getting things is basically to wait for them to come, with only an occasional hint that something isn't there that I want, or is happening that I don't want.
March 14, 2014
I am more often having trouble with small things that I have been taking for granted. For instance, sometimes I get confused about how to chew something. Most days, I can't quite reach to scratch my shoulder or my upper lip, or to wipe around my eyes or nose.
Paul tries to help. He may recognize that I am mixing up a string bean with the straw for my glass of drink, and sucking at the green bean rather than chewing on it. If he relocates it crosswise in my mouth, it becomes more clear what I'm supposed to do with it. If my nose is a little drippy and I am trying to reach toward it, he will wipe it with a tissue. I usually welcome this and sometimes work to blow my nose into the tissue. It's trickier for him if my eyes are watering a little, though. This may not be bothering me and, since I am rather protective of my eyes, I may scold him if he tries to wipe around them. But once he understands, he will cease and desist forthwith.
Comment from Betty: It does seem that Beverly is failing in many ways. You are a hero for helping her as you are doing.
Little by little, up and down. The day-to-day experience is a roller coaster. It doesn't go so much higher or lower, as quieter and slower. I expect you can appreciate that.
Comment from Janice: Oh, my goodness! Paul, don't you get frustrated at times? The poor dear lady. Thank goodness for your patience. Does the staff care for her enough to see that she is eating and drinking when you are not there?
Response: The staff does care and see to her, though of course not in the way a son does.
It is a time for patience. Mom was patient with me before I was able to interact with my environment. Of course I do often feel sad seeing her. Today at lunch, she did not respond to my voice or look at me once, or show a hint of a smile or a frown. That is what her life generally is like. I have to remind myself to look around and note that there are people with problems much worse than ours, whose lives are full of pain, rather than full of quiet.
… In my evening visit, the same. Mom did not look up once. When I looked at her from about a foot in front of her face, there was maybe the ghost of a momentary smile, but it's hard to be sure. She said one word, "Daddy," reproachfully, when I was wiping some food off from the corner of her mouth. It was rather a low day, to be sure, but not totally out of character.
March 19, 2014
I called for Jerry for half an hour tonight, "Jerry? Jerry? Hello? Come. Jerry!" I can't understand why he didn't come when I kept calling and calling for him. I was puzzled and hurt and upset.
After a while, Paul got me a graham cracker and some juice, which he knows often will make me feel better if I am getting edgy. It worked.
If you want, you can look at a page about Jerry from my Seventies Journal.
Beverly's brother Jerry had died some ten years previously. It is touching looking at her journal page from that time, linked above. – Paul
March 21, 2014
…er, well, dinner in bed.
The fact is, I really didn't feel like getting up from my afternoon nap, so we decided I could stay in bed. (There are a fair number of days like this lately.) I did wake up for dinner, and ate and drank with a hearty appetite. That being over, I felt that the best thing would be for me to have an after-supper rest. You can see me here, peaceful and content.
That's living the life of Riley, don't you think?
March 27, 2014
I've been doing rather well the last few days, sitting up straight, alert and aware, and chattering like a magpie. Sometimes I think of something funny and have a quiet laugh to myself.
I even showed looks of recognition of Paul, reaching out for snuggles and kisses a couple of times. I said, Pu - ah, which may or may not have been a name. (If so, it would be the first time in three years.) I did manage a fairly clear "honey" after reaching out for Paul's hand. That is the stuff memories are made of.
Comment from Betty: It was a blessing that Beverly had this mini-lucid few days. Also that she must have known you for a short time anyway. I remember I was totally crushed when Harley asked me who I was. Even after I explained to him, he didn't remember any of it.
Response from Paul: The continuing ups and downs are almost unbelievable to me, even after watching my father going from moments when he couldn't remember what happened 10 seconds ago to moments where he wanted to discuss metaphysics.
March 31, 2014
I have had another episode of loss of consciousness this morning. As of 11:00 a.m., my vital signs are within normal limits, but I am unresponsive. We're not sure what's going on, except that this episode so far is looking like a less severe version of some of the others. We will be watching carefully over the next few hours.
At 5:00 p.m., I was awake, though at first not necessarily cheerful. I ate a full hearty dinner, and Paul covered up my shoulders with an additional blanket because I looked cold. With those things accomplished, I fell asleep again, much more content and comfortable. With any luck, by tomorrow morning I will be about as good as new.
We wish we knew what causes these spells, but in a way it doesn't matter because so far I've always bounced back from them.
By 5:00 p.m. the next day, I was up and aware, comfortable, functioning, and laughing from time to time, as you can see here.
April 3, 2014
Last night, after a spell of agitation, I looked at Paul and it dawned on me suddenly who he was. I said lovingly and yearningly, "There you are!" and reached for a big kiss.
This morning, I have had another loss of consciousness and period of unresponsiveness. The folks at Rosewood say I am sleeping comfortably. I didn't have lunch, but I may have dinner. We'll see how hungry I am.
Plenty hungry, it turns out. I am up again and laughing and smiling.
Comment by Betty: This is a different behavior and odd that it happened 2 days in succession. The good news is that she has a rare knowing who you are.
No, I was wrong, not 2 days in a row but 2 entries by you.
To be sure, two episodes of unconsciousness & unresponsiveness in a few days are worthy of note, especially because there have been other kinds of low spots recently.
On the other hand, two spells of recognizing me within the same period are equally worthy of remark, not that I'm there to be thanked or flattered. It's just that he brain amazes me more and more with its workings and mysteries, doing unusually well at one task while failing completely at another.
April 4, 2014
I am supposed to be moving to a new room today, one that is bigger but, more importantly, in a more peaceful area. We're a quiet family. The room I've been in is along a busy hallway where there's a lot of activity and noise, and directly across from one where the loud television has sometimes not given us much escape. It should be very nice to have a more peaceful place to be.
I did not want to get out of bed this morning, so am having a bit of a lie-in for a while. I'm interactive though a bit lethargic. There was again discussion of morphine and other end-of-life medications, but Paul feels that's premature. I'll admit I've had a couple of blackouts recently, but I've had five since I've been here and recovered from all five. We'll give things a bit of time.
I was awake and fidgeting in bed by suppertime. I rose to the occasion, as I usually do, and had a full meal. I was laughing from time to time as I started to fall asleep.
The new room is wonderful. Rose, who is one of the ladies who help take care of me, said it is the nicest room of all. I believe it.
How nice for Beverly to have a quieter room......due to Paul, I imagine! I would have problems with something like that, too, for I love my quiet. Clyde agrees with me, too......that is good!
Take care of both of you......and watch for spring.
It is wonderful. A bonus is that it's so much bigger, so there will be room for 3 - 5 more pictures on the walls. We just need to figure out which ones.
No, the new room is no doing of Paul's. Probably it just that it happened to be coming vacant, and we have been around the longest among folks in the few private rooms.
Beverly & Paul
April 13, 2014
I have pretty much bounced back from the bumps of a couple of weeks ago.
April 18, 2014
My mother has had five blackouts in the last couple of years. There are any number of possible causes, and it would be folly to say that we understand them.
There are a few things we can say. All five of the blackouts have occurred early in the morning, a little while after she has been up. After each one, it takes a few or more days for her to recover. There have been much more frequent occasions when her functioning and awareness unexpectedly "crash," which look to my eye very much as if they're the same kind of thing without the blackout part. Then she recovers, in a few days or a couple of weeks. Her medical history includes a couple of things that could be involved (various mini-strokes with one significant bleeding stroke confirmed by imaging, and presumptive Alzheimer's disease/cerebral amyloid angiopathy). As far as we know, it doesn't include other possibly involved things (epilepsy, irregular heartbeat or heart attack).
I think it's beyond coincidence that all five loss-of-consciousness spells have happened at the same time of the day. It's recognized that our blood pressure rises (perhaps 30 points) in the early morning, and our heart rate rises as well. The changes can cause many kinds of problems. One effect that is very marked is with hemorrhagic (bleeding) strokes, and my mother has a known history and risk factors for these. When you think about it, if a blood vessel is going to leak, it's likeliest to do that when the blood pressure is rising. That may cause a loss of consciousness, and is very likely to be followed by inflammation that will take a while to resolve. So this explanation seems plausible. But so do a number of others.
There are a number of technical papers about this in the scientific literature. One good one for this purpose is Nocturnal Blood Pressure, Morning Blood Pressure Surge, and Cerebrovascular Events.
Anyway, my mother seems to have entirely bounced back from the last spell. The staff who take care of her regularly agree.
And happy Easter to all.
May 2, 2014
After our very long and deep winter, we made it outside again for a few minutes. I don't especially distinguish between indoors and outdoors at this point, but some little things put a content and relaxed look on my face. A little bit of warm sunshine is nice. I don't like too much sun, so when we go out we take my big gardening hat from Fox Point and make sure I don't sit facing the sun. A gentle breeze is nice, as long as it's not too windy. I usually like activity to look at, even just people walking around and talking, which keeps me from falling too far into my own remote thoughts.
Each year when the cold weather starts to set in, we wonder how many more springs there will be for us. There keep being more and more of them. Our most recent outing was only a short one, with a shawl wrapped around me to make sure I kept warm, but there should be a lot of warmer days ahead.
May 3, 2014
It has been a bumpy three or four months for me to start 2014, but I have got over the series of low spells and am as good as I've been for a while. I'm sitting up straight, eating with a hearty appetite, interacting with people, chattering like a magpie, and laughing a lot.
Last night, I smiled back at Paul when he smiled, and when the staff were changing me for bed, I said "cold." Everybody was amazed. I hope the sun keeps shining on us, literally and figuratively.
May 13, 2014
It's been warm enough that we've gone outside after dinner for the last few days. The temperature was up to 85° yesterday, which is very unusual for May. (My sister Janice reported snow in Denver the same day!) We have found a shady and quiet place in back of the building where we can sit and digest and rest. It's very nice after our long winter.
I was having a bit of a bad hair day yesterday, though, so we will show a picture of one of the trees, rather than one of me.
May 31, 2014
It is maybe something that's going around. I've been good at bouncing back from these things, but this one has been around for a week now. It's a deep cough that is a bit painful sometimes.
The cough is still lingering. I am sleeping something like 22 hours a day, but mostly comfortably. There are other people here who seem to have had the same cold, which takes a while to go away. Paul is a little concerned.
Right now, I am best at sleeping. For all of my life, I've found that the best medicine.
Update: I wasn't feeling well enough to eat my Saturday lunch. The nurses do say it's just like the cold that a few other people have. We'll try resting for a while longer.
Update: I managed to put together a good appetite for supper, and I am not running a temperature, so things are looking up. I still am full of yucky phlegm and feel yucky, but we'll see what another night's sleep does for that.
Update: By Sunday, I was clearly on the upswing, with full appetite for lunch and supper. Goodness, I've been sleeping 20 hours a day instead of my usual 14. Just wait until tomorrow, though. I'll show you.
June 2, 2014
The first is that since I have always felt that sleeping is the best way to deal with being sick, and I'm up to 22 hours of sleep a day now, for at least the time being I will not get out of bed. If I start to perk up and get restless, I can sit up in my wheelchair for a while, and see the other people that are around. As you know, I'm a very gregarious person, only I don't have the energy to be the social butterfly I used to be, and I don't like loud noise very much.
The other is that we are planning to go ahead with hospice status for me. "Hospice" is kind of a confusing word. Officially it involves a judgment that there are six months of life or fewer expected, but the truth is that nobody really knows the future. It won't entail any significant changes in my daily care, since the staff where I am know me and how to take care of me. It may mean that the hospice folks will have good ideas, and perhaps that I will have a few more visitors. My room is nice and quiet, which is wonderful, but some company and stimulation from time to time would be good, too.
I would like to share some pictures with you so you can see the latest, but Google is being a bit aggressive about what it shows in its banner image searches. Paul wants to see if he can figure out a little more about that before we go ahead.
Love to my dearest family and friends,
Comment by Kerry: Paul, I am SO glad that your Mom has such an incredibly strong and caring son. We kids will be there for my Mom and Dad too, and that's the way it should be for the people who we owe our lives to. Things will come full circle, and one day we will all be at peace.
Response by Paul: Yes, Kerry, the seasons revolve, and just as for a time my mother took care of me, now it is my turn to take care of her, as she is weary and seeking peace.
Of all people, you are the most capable of handling a situation such as Beverly's. I t really does sound like a peaceful and relatively pain free way to end a satisfying life.
My Dad's last hours were like that. The nursing home called around 11 PM and thought we should come over....which we did. I stood by the head of the bed , stroking him and holding his hand.
His breathing slowed and, just at midnight, stopped completely. His death occurred on October 17, which was Mark's twenty-sixth birthday.....a bitter-sweet day.
For the past couple of weeks, I've been battling a painful and rather severe case of shingles. So, while it has been too painful to sleep a lot, I've done a lot of resting. The anti-viral medication is stating to kick in and I feel as though I may just live through it! Thanks goodness for my dear Clyde and these four children who do such a good job of caring for me.
Meals-on-wheels is supposed to call tomorrow and we are going to try them for a while, I think. Taking care of my needs, the house and yard and then trying to cook is a bit more than Clyde needs.
He is getting frail and tires much more easily these past few months. We'll see what happens. My love to a dear sister and a dear nephew.
Shingles is very painful, I have heard. I hope you have indeed turned the corner.
I think that getting help for you and Clyde is a very good idea. We are all wearing out, little by little. Clyde has done and is doing a wondrous amount, but the additional service sounds very much in order.
Mom was asleep, snoring and grimacing when I brought her lunch. She had a few bites but fell asleep in the middle of one of them, leaving it partly chewed. She did have a full supper, chewing very slowly and in very small bites. Tomorrow is another day, which I won't predict.
It seems to me that Beverly's life is slowly ebbing away. I think it will be that way to the end. Nothing catastrophic just a slow leaving.
Yes. It's like summer fading into autumn and then winter. The progress is not steady from day to day, of course.
It seems signifiant that hospice has been brought in for Beverly's care. I was surprised to realize that she's sleeping that much of the day - which is no doubt meaningful in hospice care. I'm surmising she will stay in the same room but just have the services of the hospice staff.
Interesting to me is that the Chaplain who called on Harley and who later gave his service, stopped by the house yesterday. It was so nice to see him again. The hospice staff are first rate.
Mom is a bit less lethargic now that her cold has cleared up, but she is still sleeping or in near sleep every time I see her.
We will gradually work out a plan for what the hospice group will do. There are no specific unmet needs without them, yet they have the potential to bring a lot more attention than the routine nursing home care. The hospice service for my father was extremely helpful at that time, especially because my mother had no experience of end of life needs and care.
It's nice that the relationship with Harley's chaplain was so positive and has lasted.
June 29, 2020
Both the staff here and Paul have been noticing that I've been having occasional trouble swallowing lately. Sometimes drinks go down the wrong way, which make me cough. So far, I've been able so far to cough things out when this happens, but it can take a while and is a little painful. Also, the kinds of bacteria that live in our gut aren't good at all to get in our lungs, Paul tells me.
So we're going to move to thickened drinks for me, which is routine when people start to have difficulty swallowing. That's what we did for Bob in his later time at home. It's easy and works well. There are powders you add to the drink and stir in. You just have to remember to rinse off the drink containers promptly, or the stuff dries on hard.
Comment by Betty: I had never heard of any problems with swallowing until your Dad had that. It is rather startling that the same thing should happen to Beverly. It does sound as though you are "on top" of the problems she seems to be having. Good son!
Response by Paul: Difficulty swallowing liquids is a fairly common problem as people get to be old – Mom is getting close to 90 – and even more common in those who have dementia, as both of my parents have had. Fortunately, it is one of the easier problems to manage, though of course there is no perfect solution.
Comment by Betty: Well, perhaps both. Some people may drink thickened liquids for years, yet we are seeing an increasing number of issues recently in Beverly with the mechanics of processing food, and other things.
I wonder if this represents another decline. I'm always asked if I have trouble swallowing by Dr.'s so perhaps it's a common problem among the aged.
My diet and eating have evolved a lot over the last year. At the start of the time, I could still mostly feed myself with my fingers and eat a fairly normal diet, as long as things were cut up into bite-sized pieces. At this point, I am barely able to grasp on to things at all with my hands, I am sometimes swallowing liquids the wrong way, and chewing is getting laborious.
It reminds me of the things I fed to Bob in his last period at home, jellos and purées and yogurt. He was very limited in his likings during most of his life and wouldn't have touched yogurt with a ten-foot pole, especially if he knew what it was. (For that matter, he wouldn't eat anything if he didn't know what it was.) Paul has been getting plain Greek yogurt, which we both like quite well. It's a good summery dish. He also makes thick soups and things of a porridge-y consistency. Those work out quite well, if I'm sitting up straight enough that we don't have to fight gravity getting them delivered.
There are also a lot of steamed vegetables and fresh fruit, though we have to be careful not to have too much peel on things. Pieces of whole-grain bread without the crusts are also very good.
It's all a bit of a change in my routine, but it works out well for us.
July 8, 2014
Sometimes I sleep in a totally relaxed, comfortable state, with nary a wrinkle on my brow.
Other times, I have frown creases showing and grimace a bit. No one can quite figure out why, whether it's a tummy ache or a headache or a bad dream. Usually these spells don't last a long time, though they do seem to be becoming more frequent. At least I'm sleeping through it, whatever it is!
July 16, 2014
There is a lot of change with me in the last few weeks, people are noticing. I just seem to have less and less energy, and little things are getting trickier.
We have decided to move my regular diet to a purée regimen, which will save me the work of chewing. Just about any food can be puréed, so it won't limit the kinds of things I can eat. And Paul can still bring me other things in his daily visits.
Paul is getting a new blender partly for this purpose, partly because he's not very happy with the one he has now.
July 22, 2014
I have had no appetite for most of the last four days, and I haven't been managing to chew or swallow very well for the few bites I've tried. Things just won't go down. I've wanted more to sleep than to eat, and I have been sleeping very deeply.
My breathing is still close to normal, but there does seem to be a bit of a rattle sometimes.
Bob, Daddy, Mother – I think I will be joining you soon.
In retrospect, the last smile was on Monday, July 21. It was a good and bright one, though too quick to catch on the camera. According to her Baby Book, her first smile was on December 2, 1926. That makes for 87 years, 7 months, and 19 days of smiles for a lady whose ready smile was often noted.
July 24 - 28, 2014
We are getting very close indeed, probably between a couple of hours and a couple of days. Mom's breathing is starting to have pauses in it. She is sound asleep and unlikely to wake up more than halfway for a few seconds, I think. She appears to all to be comfortable.
My prayers are with you.
Friday 6:30 a.m.
Things are about the same... the breathing steady, no coldness in the fingers and toes, sometimes a half-opening of the eyes. On the other side, there are clearly some occasional rattles. It may be a while yet.
This is an incredibly peaceful, gentle end. It is what she deserves, but still we should thank the merciful Heavens that it is this way.
Friday 6:00 p.m.
Still holding on, with small variations. Mom is in a deep sleep.
It's been a week since she basically stopped eating, and two days since she lost the ability to drink even a few drops of fluid. This state obviously can't go on for a long time, but it can go on for a little while.
What a woman....my sister! Talk about determination!
Sleeping deeply, breathing a little less regular.
I wish I could be there to hold you both in my arms. We'd all cry together.
She is at peace, lingering on in this life a bit longer than expected before she moves to eternal peace.
I have been watching the posts about my dear Aunt Beverly and I'm feeling she is at peace. Paul you are such a wonderful man. I'm with my Mom, we'll all cry together. Sending love,
Yes, exactly as you say.
Sunday, 7:00 a.m.
Breathing a little weaker, with some pauses. This is the fourth day without any fluids at all.
I'm watching on the blog for messages. It does seem she is close to the end. It has been slow of late which I hope is giving you a chance to deal with this.
Monday, 5:00 a.m.
Resting apparently very comfortably, breathing maybe a little faster but regularly. This is the tenth day without food, the fifth without any fluids, an unusually long period to hang on given the circumstances.
Monday, 11:45 a.m.
I have had a call from Rosewood Nursing. It sounds as if we are getting to an acute stage. I am headed in that direction.
Mom drew her last breath at 3:58 this afternoon. I was with her. It was a very peaceful ending, almost out of a storybook. It will become a big void over a little bit of time, but right now I am so happy that she finally has a chance to rest.
She has moved on to that eternal peace about which you wrote. God bless her and you for the years of devoted care you gave her. I admire you both so much.
You have been more than good and close to us.
- My new home close to Paul, May 9, 2009 [predated]
- In retrospect
- Peter's visit to The Atrium, April 20, 2010 [predated]
- Resting, August 18, 2013
- My new wheelchair, September 16, 2013
- My 87th birthday, September 17, 2013
- Hoyer lift, September 28, 2013
- Alzheimer's progression, October 1, 2013
- I have a cold, October 5, 2013
- Up again, October 9, 2013
- It feels good, October 12, 2013
- I can take a joke, October 21, 2013
- My shawl, October 23, 2013
- Rosewood, October 26, 2013
- The food man, October 28, 2013
- It's been a long week, November 8, 2013
- Guest column, November 10, 2013
- I have had a seizure, November 29, 2013
- I feel like a new woman, November 30, 2013
- Shaking hands, December 9, 2013
- The Christmas spirit, December 21, 2013
- Christmas excitement, December 25, 2013
- 2014, January 1, 2014
- Blizzard, January 4, 2014
- Mother and child, January 7, 2014
- Eating, January 20, 2014
- Serenity, January 24, 2014
- Just a picture, January 30, 2014
- Long winter evenings, February 3, 2014
- Whistling, February 7, 2014
- Progression, February 25, 2014
- Listing, February 28, 2013
- Communicating, March 4, 2014
- Little things, March 14, 2014
- My brother, March 19, 2014
- Breakfast in bed, March 21, 2014
- On a roll, March 27, 2014
- A bump, March 31, 2014
- Up and down, April 3, 2014
- A new room, April 4, 2014
- The lady with a mystic smile, April 13, 2014
- Circadian rhythms, April 18, 2014
- Spring, May 2, 2014
- Springing back, May 3, 2014
- Sitting outside, May 13, 2014
- Cough, May 31, 2014
- Hospice, June 2, 2014
- Thickened liquids, June 1, 2014
- Mealtimes, July 2, 2014
- Resting moods, July 8, 2014
- Purées, July 16, 2014
- I hear a voice calling, July 22, 2014
- Approaching, July 24 - 28, 2014
- Memorial flowers