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Lois is now residing and rehabilitating well at CareOne @ Livingston Assisted Living in Livingston, New Jersey. Lois' brother John will be updating the Blog with news of her progress on a monthly basis. Thank you for keeping up with Lois' achievements and supporting her with your love and prayers!
|Posted on July 11, 2011 at 9:41 AM||comments (2)|
The second challenge Lois faces is one of paralysis. Lois suffered a left-hemisphere stroke, and this is how we understand it:
The left hemisphere of the brain controls the movement of the right side of the body. It also controls speech and language abilities for most people. A left-hemisphere stroke often causes paralysis of the right side of the body. This is known as right hemiplegia. The term can be broken down into “hemi” which means “half,” and “plegia,” which means paralysis.
Someone who has had a left-hemisphere stroke may also develop aphasia. In contrast to survivors of right-hemisphere stroke, patients who have had a left-hemisphere stroke often develop a slow and cautious behavioral style. They may need frequent instruction and feedback to complete tasks.
Finally, patients with left-hemisphere stroke may develop memory problems similar to those of right-hemisphere stroke survivors. These problems can include shortened retention spans, difficulty in learning new information and problems in conceptualizing and generalizing.
Hemiplegia resulting from stroke is usually permanent. But it is also non-progressive, which means it will not get any worse, and with help its effects may be reduced.
In many ways Lois has made amazing progress since last September. It has not been easy, but ten months later we can see the improvements, some of which have been dramatic. From being prostrate on a hospital bed, to now sitting up all day in a wheelchair and manuvering it manually to take her where she wants to go, is pretty remarkable. From September 20th when Lois spoke only her second sentence, "Yup, It'll be alright", to now when she is able to talk about yesterday, today, and tomorrow in one single conversation, it seems somewhat miraculous. As people of faith we believe intensely in the power of God to heal all things.
Nonetheless, we must also plan for the possibility that certain conditions will remain permanent. Lois too has gradually begun reconciling the likelihood that her right leg will not regain mobility, and that she will have to retrain her orientation to doing things lefthanded. No, it has not been easy, and perhaps the most difficult time stretches before her more immediate future.
From the neck up at worst Lois has minimal paralysis. There is some visual impairment, but it is hard to tell how much, as is the case as she compensates by chewing on her left side. From the neck down, she can feel the nerve endings firing away in her shoulder, her hand, and her knee, all positive developments, but not to be misconstrued as anything beyond that. Not now, not yet. Some brain damage accompanies a hemispheric stroke, and Lois is in that period of time when she will learn how much of that may be permanent. And we will learn how to help Lois to live fully in light of it.
|Posted on July 8, 2011 at 11:11 PM||comments (0)|
So, how is Lois doing? This is a commonly asked question. It speaks to the ongoing concern so many people have for Lois' well-being, and hope for her recovery. As family, we have appreciated the question, as it provides an outlet for sharing the latest news and perceptions about Lois' health. The answer, however is not always easy, as impressions can shift even from one day to the next. Despite the rehabilitation team working with her, Lois is the best source for answering the question. Depending on the day the answer can be filled with tails about aches and pains difficult to locate, or frustrations over a perceived lack of services. She also has many days in which she talks about things moving in the right direction, and having the inner sensation of healing on the right side of her body.
Talking with Lois most days is easy and pleasant, but the listener has to do some work to get an accurate read on what Lois is intending to communicate. Lois speaks very well, her sentences long and coherent, and her conversation relevant. She is aware of her surroundings (and is an advocate for the care staff), is up to date on the latest news, and is fully connected with the movements of family and friends and special events.
Lois has two major challenges. One is called Expressive Aphasia. Understanding what this is, and how it works is key to communicating effectively with Lois. Here is a classic description of this condition:
Aphasia is a communication disorder. It's a result of damage or injury to language parts of the brain. And it's more common in older adults, particularly those who have had a stroke.
Aphasia gets in the way of a person's ability to use or understand words. Aphasia does not impair the person's intelligence. People who have aphasia may have difficulty speaking and finding the "right" words to complete their thoughts. They may also have problems understanding conversation, reading and comprehending written words, writing words, and using numbers.
According to the National Aphasia Association, about 25% to 40% of people who survive stroke get aphasia. With expressive aphasia, the person knows what he or she wants to say yet has difficulty communicating it to others. It doesn't matter whether the person is trying to say or write what he or she is trying to communicate.
The main symptoms of aphasia include: trouble speaking, struggling with finding the appropriate term or word, and using strange or inappropriate words in conversation.
Some people with aphasia have problems understanding what others are saying. The problems occur particularly when the person is tired or in a crowded or loud environment. Aphasia does not affect thinking skills. But the person may have problems understanding written material and difficulties with handwriting. Some people have trouble using numbers or even doing simple calculations.
Lois' intelligence is not impaired, but she does struggle at times to find or recall words that she is intending to use. This can be frustrating to her, though she is learning to manage it. Lois knows exactly what she is talking about, and can participate in complex conversations. Though the words may not always flow, nonetheless if one listens carefully and patiently helps her to find the words she can readily confirm whether or not the listener has gotten her point. Her primary source for current events is the television, but she will also convey perspectives from one conversation to another. She can discern information, and knows the difference between facts and Fox.
With that said, Lois will, even abruptly at time, move on from one conversation to another. Sometimes this is due to her suddenly remembering something that she had been wanting to say but kept forgetting, and at other times it is because of something distracting - unexpected movement or a sound around her. She does move on, and cannot necessarily recount conversations from one day to the next.
Lois is unable to read. Visually she cannot make out words or numbers to date, so she relies on her ability to absorb the information she hears. Because she is limited in her ability to test information through multiple sources, this also means that depending on the source, she trusts heavily that what is being communicated is factual. Lois can answer the phone when it rings, but she cannot dial out a number. Even with large dialing numbers, she is unable to distinguish a "three" from a "nine". But she knows this, and is trying to figure it out.
Lois may also at times speak in opposites, saying "up" when she really means "down", that she is going to do something when she is meaning something quite different. She is conscious of this as well, and most times catches herself, and will say that she is meaning the opposite. Her responses may also be a bit exagerated. When something is good, it is really good and exactly what she needed in the moment.
Lois sometimes uses inappropriate words, or phrases out of character. She is certainly not aware of or intending to offend. While earlier in this "process", as she likes to refer to it, she was more prone and repetitive in this area, now she has a broadening vocabulary and conversation. Afterall, at heart Lois is a peace-maker, and she is increasingly using her skills to be sensitive to the needs of others.
This process has been quite encouraging and is itself evidence that all aspects of her apahsia are not necessarily permanent, and that Lois is indeed getting better.
|Posted on May 3, 2011 at 12:08 PM||comments (4)|
Some journeys are much easier to describe than others. Some roads take many twists and turns, and offer few memorable landmarks along the way. In certain instances, the route can be described as a left here, a right turn there, or one can be guided to look for a place on a particular corner. Lois' mother would often counsel that in any kind of situation the shortest distance between two points is a straight line. While straight lines are not always possible, the principle of finding ways to shorten the distance is a constant. On this journey to recovery, Lois looks for the shorter path, and while it may not be simple to find, she nonetheless is unyielding in her persuit.
Transitioning from one care facility to another is for Lois a sure sign of progress. She notes the markers of Edinburgh, New York, Cedar Grove, and now Livingston. Lois says, she has no idea where Livingston is, but at the same time is clear of where she wants to go. With all the necessary twist and turns, and passage of time, she remains confident that her journey will be successful. CareOne provides more of a home like atmosphere. Hopefully Lois' days of more institutional living have ended for a long time. She has her own room, and enjoys the accoutrements of more private living. She no longer has to share the sound of televisions with roommates, can organize the furniture the way she wants, and has more hospitable space in which to entertain visitors. Lois can offer a cool drink to a friend on a warm day, can guide her wheelchair to the outdoors if she chooses, and select meals from a menu of casual or more elegant food in the dining room while chatting with an emerging group of new friends. While it is not home, it feels more like it than any other stop along the way.
Lois' eyes are brighter, her conversation stronger. In a conference call with friends from California she shared stories, important memories, and recalled others whom they had befriended. She smiled a lot while chatting, and those on the other end could feel her warm and inviting spirit. Lois is becoming Lois again with each passing day. Yes, she still has days, and moments in which her thoughts and words seem confused, but Lois is not confused about or by the journey she is on. The journey really is not so much about a particular address as it is the destination of regaining some measure of independence again. Perhaps not the same as before, but still a quality of life: of making her own choices, of being engaged with the world around her, and touching the lives of others with grace.
Lois' family is known to say, "We may not always know where we are going, but we always know the way back." Lois, is working on finding the way back, and over the relatively short space of seven months she continues to have a most remarkable journey.
|Posted on April 13, 2011 at 3:43 PM||comments (4)|
Lois' conversation can be quite good, especially when she is not thinking about what she wants to say. She engages in long sentences, using the language of a highly educated person, and is on point with her perspective. She watches a lot of television, and is up to date in current events. She has strong opinions about the democratic uprisings in Northern Africa, is upset about the budget impasse on the part of the federal government and its potential impact on poor people; and she always knows when "The Price is Right."
Lois gets agitated at times. She doesn't quite understand why the therapy sessions have slowed, especially at a time she thinks she is ready for the number of sessions to increase. Early on she considered the food at Cedar Hill to be welcomed relief from what was served at Mount Sinai, but now regularly asks some visitors to to bring in snacks or a meal to by-pass what will be brought on the food tray.
Most of her day is spent in a wheelchair, though she is beginning to do some therapy with a walker. She continues to be immobile on her right side, so with the help of an aide, she uses the muscle of her left side to help steady herself. Lois has two roommates, who wheel out to the activity rooms at breakfast time, and don't return until it is time to sleep for the night. Though not intended, Lois' is like a private room, and for the most part she has liked it that way. But as the month progressed she has learned to be more mobile in her chair, and now she too skirts across her room or into the hallway. However slowly, she is able to reach her destination. Sometimes she sits near the nurses station, a place of movement and conversation; and she has also wandered into the television area where a number of the residents congregate. Lois is beginning to enter into the community, and she does seem to know what's going on. She is into the business of almost everyone on her corridor, and even of the medical team attending to her.
Marie is one of the many who in some form or fashion care for Lois' needs. She is both kind and direct, and is every bit Lois' match when insisting that she eats her food and attends to those things of which Lois is capable. Lois knows Marie likes her, and is careful in her presence to follow orders. When Marie leaves the room Lois raises her eyebrows, but then smiles with admiration. She is like many of the women that Lois has worked with throughout her professional life.
Lois experienced a bit of a set back when her blood pressure was seemingly too high one afternoon. After a fainting spell, she was hospitalized for several days in order to administer some tests and to make sure that she was not having any additional issues related to the stroke. The tests came back negative, and after five days she returned to Cedar Hill.
It was somewhat of a traumatic experience, and Lois is still trying to understand the cause. Her conversation initially was not as good as before the set back, but with each subsequent day Lois is regaining her strength and her focus, and is wheeling back into the community again.
|Posted on April 13, 2011 at 3:16 PM||comments (1)|
Recovery and rehabilitation has many ebbs and flows. There are times when progress seems to come quickly, and other times when it slows, almost to a complete stop. There were times before the stroke when Lois would sit on the balcony of her apartment overlooking the Hudson River. Sometimes chunks of winter's ice drifted with a steady progression, at unsuspecting times the New York side of the river would flow in a northernly direction while the New Jersey side curiosly flowed in the opposite direction. On some days, however, the river could be still as glass.
Thereapists are trained to look for the plateau, the time in which progress seems to have slowed or stopped. They are trained to discern whether the plateau means that the patient has peaked, that no additional progress will be made, and the current condition permanent; or whether the plateau is just that, a level resting place before engaging the next part of the journey. Therapists will also confess that there is no exact science about this, instinct perhaps; and that it is incredibly dificult and risky to be definitive. So, they don't really know what to say, and so they too wait to see what will happen.
Lois has reached such a plateau. It is not her first, and likely is not her last; but her progress from one day to the next is not clear. The movement is slow. Lois has moved from acute care part of the Cedar Hill facility to the long-term care side. She is not committed to long-term care, but it is in this section where she will be able to continue to work with the therapists in a less extensive maner, where she will begin to more fully apply some of the skills she has learned in occupational therapy for self-care, and where she will begin the process of socialization with other residents in the health care center.
Lois says that she can feel that something is happening on her right side, and it might well be, but there is no physical evidence that continues from the one time she experienced some movement in her right foot. The physical therapists flex the limbs and muscles to keep them from atrophy, but cannot report any signs of strength. That remains a large part of the mystery as to where Lois is. She tells us that she feels, she senses, and perhaps she really does. But for now the progress has slowed, and we wait to see when the next part of the journey will begin.
|Posted on February 18, 2011 at 2:29 PM||comments (5)|
Lois sat in the physical therapy room waiting her turn. The Cedar Grove facility is busy with activity. She remarks about how large this place is, and that there are so many people here to be helped. A dozen or so thereapists are constantly moving from one patient to another. Some residents and patients are learning how to walk up and down stairs. Others are working on arm muscles, utilizing elevated rowing devices. One person propels her own wheelchair across the floor using the new found strength of her feet. Some are short term and others long term residents.
The therapists are to be admired for their patience and gentleness. Most everyone is old, and most of the therapists are young. Lois seems quite content to wait, except when the therapist mistakingly identifies Lois as "mother" to her sibling. Both make the correction, and the therapist apologizes. Actually, it is a easy mistake to make, given the scars from an earlier time that Lois has learned to live with, and for which those who know her for the most part no longer see. The young therapist sees it and counts it as age. Her pulled back braided hair, now more fully grayed by months of illness and stress belies her age. Otherwise, Lois actually looks younger. The months of rest has made her skin and color more vibrant, her eyes brighter, her spirit stronger, and Lois better.
As her therapy session begings, Lois stretches her arm up high, and then stretches it out before her. Today, Lois will continue learning to do things that she always took for granted, and teaching her body to follow the most natural of commands. She will struggle to remember things learned today in order to repeat them again tomorrow. Though she may not actually say it, Lois will be more keenly aware that even if tomorrow is promised to no one that is no reason not to try to reach it. And age, well, it really doesn't have a lot to do with it.
|Posted on February 14, 2011 at 3:24 PM||comments (3)|
For a long stretch of time Lois daily made noticeably incremental improvements. The pace has now slowed, though the improvements are no less significant. She continues to inch closer towards recovery; and there literally are days when her facial appearance is exactly what it was pre-stroke. It is now a slower, more tedious recovery, but she has in no way peaked. Lois continues to have a good upside, and she continues to be convinced that her recovery will one day soon be complete.
Lois makes reference to her right foot. Though her physical therapist has been saying that there is no muscle activity to report, Lois continues to assert that something is happening. "It's almost there," she says. The therapist helps Lois to her feet, bracing under her right armpit while Lois anchors herself holding onto a three pronged cane with her left hand. Then they walk. Much like her progress of late, they inch along, with Lois dragging the right foot. The therapist is impressed with Lois' spirit, and remarks that she has not given up and works hard at her therapy. In fact, to the extent possible, she prefers to engage physical therapy seven days a week. Lois remains driven to get back to the life she knew before taking ill.
Lois is very assertive, bossy even. She gives directives to family, and friends, and even to the medical team. This is a most interesting and revealing part of her personality. The tone changes with how Lois may be feeling at the time, but for the most part her directives are gentle, saying to visitors, "Its time now for you to leave," or "Before you leave water my flowers." Her words do not always convey the spirit in which the words are intended, or the diplomacy with which we are more accustomed, but they too are part of the slow incremental improvement that we see. Only weeks ago speaking in complete sentences was a seemingly impossible task, and remembering something from one moment to the next a huge accomplishment. These are changes that are not easily seen from one day to the next, but they are happening.
"Its almost there," Lois says; and while from where she is in the moment one might conclude that Lois is still a long distance from being "there", nonetheless she continues to inch along, and before too long just might be.
|Posted on January 18, 2011 at 11:37 PM||comments (9)|
This has been such a surprising journey Lois has been on. Truly amazing in many ways, perhaps more so for the unexpected moments that simply cannot help but leave one feeling good, even though there are those that leaves one feeling perplexed. The interaction of two people in and of itself is nothing unusal, but when that interaction happens with someone who is seemingly lost within herself, it is something else.
Lois is not really lost to herself. She knows that a part of herself stirs deep within, like a dream within a dream, and she is trying so hard to work through the layers in order to bring all of herself back out into the open. Transparency is not something to be taken for granted. It should be admired for what it truly is - part of the mystery of God. And it remains just as much of a mystery as to how one can achieve it.
We sat and chatted about the news. This was the first week that Lois was encouraged to read a newspaer or magazine. After needing some assitance to put on her reading glasses, she took hold of the New York Times, and perused the pictures and headlines on the front page. Neither probably meant very much to her, but the opportunity to encounter words and pictures that hold some level of familiarity is a good exercise. Lois has to be taught again so much of what she had taken for granted throughout her adult life.
A nursing assistant rolled in a large piece of equipment. Lois was distracted as she entered the room, but then we continue the conversation no longer paying attention to the assistant attending to Lois' roommate. Lois was distracted again when the woman approached her side of the room. The equipment she rolled was a scale. Lois immediately told the assistant that she couldn't , not now, this was not a good time; but the woman insisted Lois needed to be weighed. Aided by a nurse, they anchored Lois by the armpits and helped her rise from her wheeelchair. Lois extended her left hand and held the rail. The nurse moved her right hand forward toward the rail, but the assistant said that the right hand had no grip. Lois' right hand dropped to her side. The assistant held onto the scale, and the nurse held her hand close behind but without touching Lois' back, as if to catch her should she lose her balance. It was an amazing contrast from late September when for the first time Lois was able to sit up straight on her bed for a three seconds without assistance; today Lois was standing on her own power.
After measuring Lois' weight, they once again helped her back into the wheelchair. Lois leaned into the chest of the assistant with an smile of accomplishment. The assistant said, "That wasn't so bad," and returned Lois' hug. As the woman began to move the scale away she remarked at how much progress Lois had made from when she was first admitted to Cedar Hill. Then she said to Lois, "God is good." And without hesitation, Lois responded, "All the time, God is good."
Sometimes a light surprises the Christian while (she) sings;
It is the Lord, who rises with healing in (Gods) wings:
When comforts are declining, (God) grants the soul again
A season of clear shining, to cheer it after rain.
In holy contemplation we sweetly then pursue
The theme of God’s salvation, and find it ever new.
Set free from present sorrow, we cheerfully can say,
Let the unknown tomorrow bring with it what it may.
It can bring with it nothing but (God) will bear us through;
Who gives the lilies clothing will clothe (God's) people, too;
Beneath the spreading heavens, no creature but is fed;
And (God) Who feeds the ravens will give (God's) children bread.
Though vine nor fig tree neither their wonted fruit should bear,
Though all the field should wither, nor flocks nor herds be there;
Yet God the same abiding, (God's) praise shall tune my voice,
For while in (God) confiding, I cannot but rejoice.
(William Cowper, 1779)
|Posted on January 18, 2011 at 10:32 PM||comments (3)|
"Its time," Lois said. "I've been dealing with this thing for three months." She paused when informed that actually, its been closer to four months. Lois is impatient when told about the progress made over that time span. She waves if off, as if somehow irrelevant, and yet the progress has been stunning in many ways. What matters to her is not so much what has been accomplished, but what remains ahead to be done. She points to her left side and mentions how much better it is getting, that it is getting stronger. Then she rubs her right hand and says, "If I can just get the thing to move." In reality not much has changed on Lois' right side, but in every other way she has made leaps and bounds - dramatic improvements
It is not so much a point of frustration as it is a matter of confusion. Why won't it move like the other side. Lois is easily distracted, looking towards an unexpected sound, noticing someone walking pat her room. She stares for a few moments. She often speaks in opposites: calling the left the right, saying something is up when she means it is down, calling a friend by her own name. Sometimes she is aware of doing this, but other times seem to escape her. Lois talks a lot, and moves from one topic to another almost without taking a breath; then suddenly asks, "So what's been going on with you?" No sooner does she ask the questions that she points to something else, in this moment she points toward her dresser. She struggles to find the specific word to describe what it is that she wants. Lois has learned how to disguise her inability to name even the most common of things, and can get annoyed when the item is identified and she is asked to repeat the word. This is part of her therapy. Almost without exception she knows what she wants, but naming it remains a hurdle. After touching several things trying to discern what she is wanting finally we understand she wants something in the second drawer. Her whole body posture slumps with approval, finally (!), when a can of ginger ale and a bag of popcorn is lifted out of the drawer - evidence that her good friend, Andris, has visited again. It is also a reminder of Lois' planning ahead. She doesn't want to drink or eat in the moment, but senses that soon her visitors will leave, and wants to be able to enjoy a snack afterwards.
Its been closer to four months, and its hard to reconcile the range of emotions that Lois and others have experienced from September to January. Even though the "thing" still has not changed, nonetheless Lois is getting stronger, and for that the future feels more hopeful.
|Posted on January 18, 2011 at 4:38 PM||comments (0)|
Surely you are wondering what has been going on since Christmas. Well, it has been a busy season, and for Lois that was no exception. Her room was aglow with the festive colors of red and white, as get well cards were replaced with seasonal greetings. A couple of poinsettia plants adorned her window, and a Christmas stocking had been carefully hung as a centerpiece. Lois got a kick out of a couple of musical cards. She would flash her eyes toward the ceiling whenever they were opened, and offer a mischievous smile. Whenever the cards were rearranged on the windowsil Lois insisted on keeping the musical ones close at hand. One can only imagine that Lois and her roomate enjoyed listening to them after visiting hours when the care center drew still.
New Years came in without a lot of fanfare. While there wasn't any particular evening celebration, Lois was very aware of the change of year, and the promise it brings. The pace of visitors has begun to pickup, and so has her conversation. She enjoys getting telephone calls, and keeps the phone handy. Lois has grown stronger, which is easily visible when first walking into her room. She is in command of her wheelchair, and with crossed legs and a more powerful left hand turns it to greet her guests. Her face brightens as visitors enter, and her eyes draw wide.
Lois has a lot to say these days and sometimes get so excited that she loses track of what she wants to convey. Otherwise, she is constantly saying something... about the facility, the food, the size of the therapy sessions, the food, those who have visited her and what they talked about, the food, the program showing on the television screen perched above her bed... Seemingly, Lois has outgrown the cuisine of the care center, and so increasingly she is asking for the wider variety of ethnic foods with which she is more accustomed in her global travels. Yet another sign of coming back to oneself.
She is alert and aware; and, oh, did I mention the food. Don't be surprised when you visit or call if she asks you to fix her up.