by Bob Hoffmann
by Bob Hoffmann
1997 Entries - January 27 | April 3 | May 19 | July 21 | October 19 | December 31
1996 Journal Entries | 1998 Journal Entries
January 27, 1997
This month there has continued to be signs of some physical decline, with Shirley's walking becoming less stable. There is more of a shuffle in her walk, and the need to hold her hand or walk close to her. There were several falling incidents that I discuss later. It also continues to be a challenge to find things that she will eat readily, and I am starting to feel like I am force feeding her about half of the time, although her weight has remained constant. Her favorites still remain McDonald's shakes and hamburgers, and I frequently use the blender to make "fruit" shakes for her at home.
We took our trip to Illinois (five hour drive) to spend Christmas with her Mother and other family. As in the past, she traveled well in the car. We did have difficulty at the rest stops where due to the stimulation from the environment and her desire to participate, she would scream from the time we got out of the car all the way to and in the restroom and until we got back into the car. Niki, who had to accompany her was visibly stressed over this. With the number of people traveling on the holiday it was a real distraction. While waiting outside the restroom, I heard a man who was filling one of the vending machines say "I wish that lady would shut up, she is driving me crazy!". You can imagine how Niki felt in the restroom filled with other travelers. On the bright side, they readily recognized her situation and let her go to the front of the line for the handicapped stall. On our return trip when we had to stop, we took a sandwich with us into the rest stop and gave her bites as we were walking in and while we were in there. That seemed to work to keep her quiet and occupied. We plan to start carrying chewing gum with us if we go again, as we feel that might work as a diversion.
She had several falling incidents this month, pointing toward a further decline in her stability. In one case, she was closing the door to the bedroom and as she turned around, she twisted her feet and fell against the dresser. This resulted in a minor bruise on her shoulder. A more serious fall occurred at supper time while I was clearing the table and Shirley was still sitting there finishing eating. She frequently gets up and down at the table and walks around as the chairs have arms to help her lift herself. This time, she stumbled backward with the chair tipping it over and falling on top of it, hitting her head on the kitchen desk behind her on the way down. When I picked her up, there seemed to be blood all over, and I traced it initially to a gash on the side of her head, and tried to hold that area as I got her up and over to the sink to wash it. But she still seemed be leaving a trail of blood to the sink and I found that her little finger had a two inch gash on the inside of it (to this day we have no idea what could have caused that cut). So... off to the Emergency room, where they put 4 staples to close the gash in her head, and X-rayed and put 8 stitches in her little finger. We did not get home until 11:30 that evening. Not a good day.....
Naturally with the above experiences fresh in my mind, I made some adjustments, and no longer give her the degree of freedom I once did. While fixing a meal or cleaning up afterwards, I no longer let her wander around in the kitchen with me, but always sit her down on the couch in the family room where I can still see her until I am finished. Essentially, I make sure she is sitting someplace where she cannot get up by herself before I start any activity. I can no longer let her wander around the downstairs without being within reach of her. As she can no longer get up from the couch or out of bed without assistance, it does give me some additional freedom, as I can now run to the mail box, shovel the snow, or go down in the basement and throw in a load of wash without worrying about her wandering about the house. I have found that in lifting her up from the couch or off of the bed, I am starting to get some back problems, and need to train myself on proper lifting techniques. When I get in a hurry and do not prepare or position myself properly before I lift, I can get into trouble with my back. I guess this is an additional dimension in caregiving that I need to understand.
Two more volunteers have come to my aid this month, which gives me more flexibility and opportunity to get out and exercise. For now, I have four fairly regular volunteers that each come for two hours during the week to give me a break to exercise and shop. Because Shirley spends more time in bed these days, I have moved a rocking chair into the bedroom next to the bed so the volunteers can sit and interact with her while I am gone. She enjoys the company although she no longer verbally communicates (enjoys a back rub and a hug.... don't we all!).
When Shirley gets anxious or impatient she likes to pound her hand on the table, or she will pound her silverware or glass, or even a dish. After having several dishes broken, I took an empty plastic gallon milk carton, rinsed it out and put the lid on tight. I call this her "thumper jug" and give it to her when she gets in these moods. She will pound it on the table (doing no harm) or will follow me around hitting me on the back (again, doing no harm)... This has been very useful in redirecting this action, and seems to satisfy her requirements.
Overall, things are going as well as can be expected for this stage. Shirley continues to laugh and seems quite content and happy. We spend the afternoons "cuddled" up on the couch watching old movies on TV (I watch, she mostly sleeps). Periodically, I will get her up and we will walk around the house several times and stretch to make sure she gets some amount of exercise. Several times a week we will take a ride in the car and pick up the McDonald's milk shake and burger which she will have gone before we get back home. I (we) miss getting outside for our walks together, and hope that she maintains her strength so that we can walk again at the first signs of thaw in March......
April 3, 1997
Shirley has become more quiet, sleeps more, and continues to show signs of weakening physically.. She has lost several pounds... The March thaw did come, and for a couple days we managed to get outside and take walks around the block.. She managed the walks, holding my hand very tight. I found that the slightest spot of snow or mud or sand is a hazard for her as she can not exercise any balance control once upon it. She managed to slip on a spot and even holding my hand could not balance and dropped down to the sidewalk (into the mud).. Lifting her is a challenge as she can offer no help and you have to lift her body high enough for her legs to straighten out to the ground before she will support herself.
In mid March, she experienced another fall. This time she was standing straight up in the kitchen area as I was cleaning, with her hands on the kitchen counter. She suddenly dropped straight backward with no warning, or effort to stop or catch herself, and hit the front of the stove with the upper part of her back and neck. She was two arm lengths away from me, so I was unable to stop the fall, but caught her as she reached the floor.. I sat on the floor just holding her for some time as it was clear she was frightened from the fall.. Finally I lifted her up, but she walked stooped over and with seemingly great pain. I managed to get her to the couch where we sat and I could observe her for the next couple hours.. and then later up to her bed.
My son came over and we examined her closely and found what seemed to be a vertebrae slightly out of alignment and probably pinching a nerve. She gradually improved, but it has taken several weeks to get back where she is comfortable walking again. But I now have to hold her hand tightly whenever she is walking, or even just standing, and many times need both hands on her to stabilize her. I have noticed that with these setbacks, she never seems to recover to more than about 80% of her previous capabilities, as if in a downward spiral.
She continues to show less interest in eating, and needs to be coaxed to finish the quantities she requires to sustain her. Feeding her is a chore, and requires small bites to prevent choking. I have found several TV dinners to be among her favorites, but more and more she will not accept lumpy things unless they are very soft. I supplement the meals with yogurt or fruit shakes when I do not believe she is taking in enough calories. Her weight has dropped a couple pounds over the last several months, but since she had gained over 10 pounds the previous winter eating candy and other snacks, I have not seen the loss as a particular concern yet, but will need to watch it closely. I am hoping that the additional exercise from walking outside with me this summer will help the appetite.
I am having to deal with several medical problems (which was to be anticipated). One involving a number of rashes and dry spots that seem to appear all over her body and have been difficult to manage. After fighting these for several months and not making much progress with off the shelf products, I finally consulted her physician who referred her to a dermatologist. My visit with him was not fruitful except to eliminate some causes, and to get another cream to try. He did not know what was causing them, and I got the impression that with her condition, it was not very important to pursue, but only to treat as best possible. I have hopes that this will help me get things cleared up. Trips to the doctor are difficult in her condition, but the staff there have been wonderful about cooperating by taking us immediately to an examining room versus having to wait out front in the waiting room where she does not do well with the stimulating environment there (plus the concern for picking up colds or other bugs)
To deal with some of the changes occurring, I have taken some steps. I obtained a handicap parking sticker from the license bureau so we can now park near the front door at the doctor's office. We have also received a prescription from the doctor for a wheelchair which we have ordered to allow me to move her around safely and spend more time outside with her. I have purchased and begun to use a shower stool to reduce the risk of her falling while I am washing her. And to address the question of potential medical problems (infections and the like) being identified early enough, I am pursuing having a home health care nurse come in twice a month to do a mini medical examination and instruct me on things to look for as she spends more time in bed. I have found that much of the above is covered by Medicare for which she becomes eligible next month, having been classified disabled by Social Security now for two years.
Stairs have been a problem and as she becomes less ambulatory I am becoming concerned about how I might get her up and down during the day, or if we will reach a point where I may need to move her bed downstairs. I have some time to decide the best approach, and have hopes that I may find a method of moving her down the stairs in the wheel chair with some sort of assist.... or it may be time to move to a one story house..
We were interviewed and photographed by a magazine named "Mature Outlook" which is a Sears Senior's club magazine. They are doing a center piece on "Caring Options" for the May issue that will be out soon, and we are used as an example of home "live in" care. Another interesting thing that happened this month is that my Web Site was featured in the Osaka, Japan, evening newspaper... the Daily Yomiuri Shimbun. They had found my site and contacted me on the Internet to request my permission to feature it as part of a discussion on "Care". I requested and they sent me two copies of the newspaper with the article (in Japanese) and displaying the pictures taken from my Web Site of Shirley and Niki.
Things continue to change as fast as I can find ways to deal with them, and lately I feel I am falling behind. I know some stress has been building because I find strange things occurring, like clothes being filed away in the wrong dresser. With the warmer weather, I am hoping that getting outside more will be beneficial for both of us. But I am quickly learning that tougher times are yet ahead...
Without the help of the several volunteers that come each week to let me out to exercise and shop, I would not have made it through the winter.. the two hours or so each spends with Shirley, is worth ten times that much to me in being able to conduct some normal daily business away from the stress of caregiving. Shirley still rewards the volunteers with her smiles and coos when they wake her or rub her back. That still makes it all worthwhile.....
May 19, 1997
Spring finally did arrive in Minnesota and has allowed us to get outside. We now take daily walks around the block when weather permits, but Shirley has shown no improvement in her gait. I have attempted to lengthen the walks to a double block, but it seems to take a toll on her, so I have decided to keep it to just the local "circle". She requires lots of support when she walks, as her shuffles lend themselves to tripping. She keeps her head bent down most of the way, watching my feet. But it is great to get out, and the walks have so far been uneventful.
We purchased a wheelchair and I have been taking her for "spins" on the two mile path around the small lake in the center of town. She readily accepted the wheelchair and seems relaxed riding in it. She stays alert and likes watching the people, children, and other sights as we move around the lake. Managing her up and down the inclines on the path keeps me in shape as well. This has turned out to be the successful outing that we had hoped it would.... getting us outside more in the summer. I am also learning the problems of the handicapped, as I have found parking spots taken by non-handicapped "squatters", and access paths occasionally blocked by other cars. Funny how dealing with a disease like this sensitizes one to so many things that before went unnoticed.
Medical problems continue to be a challenge... Shirley's dry skin condition has about cleared up, probably due to the season change. But a very large mole on her lower back was scratched off one evening, leaving a very bloody mess for me to clean up. I cleaned the wound, treated it with Neosporin and covered it with crossed Band aids to keep her away from it while it healed. She would continue to try to get at it and tear the band aids off, but eventually it healed and she has since left it alone. I had considered putting gloves on her as was suggested by a man in the support group I attend, but I have not tried that yet. Pharmacies carry gloves that fit tightly and can be used for that purpose. I trim her nails every couple days in an attempt to keep them short, but have found that they grow very fast. She has developed two red areas just below her neck from scratching, but they respond to over-the-counter treatment with hydrocortisone and are more of a nuisance than anything else.
Several weeks ago, my daughter and I noticed that Shirley's left hand and wrist were slightly swollen. We thought it might have been due to her sleeping on her left side, and somehow blocking circulation. I have begun to massage and exercise the arm daily (range of motion), but have noticed that she still does not use it unless you "cue" her by pulling her up from that hand. She clearly does not have the strength she did and favors the hand. When we walk, she does not let that arm hang, but will grasp her coat with the hand (like Bob Dole grabs his pen). I have also noticed (I think) that her left leg seems to give her some trouble, especially when she is tired of walking. I have been concerned and suspicious that there may be a neurological basis for all this.... that it might be part of her decline. I have had her examined by a nurse, but have not addressed it with her doctor yet, hoping it would go away. I continue to monitor it daily, exercising that arm every chance I get
Shirley still sleeps and eats well (with coaxing). Her weight has held steady, and she even gained a pound as I have begun supplementing her meals with fruit drinks prepared in a blender with Nestle's supplement. I have found that I need to be careful to not overfeed her, as she will continue to try to eat as long as I offer it to her. This is in contrast to what I said a few months ago, when I stated that she was losing interest in eating. But she will still not take initiative to reach for anything to eat, but I believe by habit, opens her mouth when I offer her something. She must be fed very small bites and I wait until I hear her swallow so I do not overload her. Even then, she continues to choke periodically during each meal.
Choking has become more of a general problem, especially at night or early morning. Saliva builds up in her mouth and will cause her to choke. She woke me up one night choking and gagging and I quickly sat her up in bed and leaned her forward so she could clear it. A very scary time. This has happened several times and is one of the things that I mention to the volunteers to watch for when they come, although it seems to be worse at night. The saliva also drains from the corners of her mouth, causing them to become irritated, so I apply lip ice as part of the normal daily regime to protect these areas.
These problems continue to emphasize the need for a closer medical watch, and I have been able to get approval for a monthly Home Health Nurse visit to examine Shirley and help me deal with these situations. I prepare my list and review it with the Nurse and we discuss what type of intervention might be required, or if a consultation with a doctor is necessary. On the last visit, the Nurse indicated that she felt Shirley was less expressive. This may be true, as even with Niki, it takes her awhile and some stimulation (hugging and kissing) to get her to respond. I believe that her ability to recognize people (or think that she recognizes people) seems to have gotten worse. She still responds to me as I always stand in front of the mirror with her each morning and put our heads together and tell her who we are. She at least seems to enjoy and respond to it..... knows I am someone important that she wants to hang out with....
Volunteers continue to come so I can get away to shop.. The wheelchair allows us other outings together... Overall I feel optimistic about the summer.. On June 15th, Niki graduates from college, and volunteers have signed up to stay with Shirley so that my son and I can spend the day with Niki in Minneapolis.... Something we have waited for a long time.. It also coincides with Shirley and my 31st anniversary.. Too bad that she cannot be more aware of the circumstance as she would be very proud of her kids... We plan to get some pictures taken that weekend at the house that will include Shirley.... Volunteers are worth their weight in platinum!!
July 21, 1997
Steady decline seems to be the pattern... During the last couple months her walking has not improved as I had hoped with exercise, and instead, it has gotten to the point that we have had to terminate the walks around the block. She continues to become more unsteady, and even just getting her to stand is sometimes very difficult as she tends to lean forward bending from the waist with her head down.. This has required more lifting on my part. She walks but requiring a great deal of support, and we make several trips around the house each day or out onto the deck. I have learned that in walking with her or trying to get her to go up or down a step, that shifting her weight from one side to the other, taking it off of the foot I want her to lift or move, helps cue her to move that foot and take the step. This actually works quite well.
The greatest challenge has become the stairs.. In going up she relies heavily on my grip and will not hold the banister herself, and has begun stopping part way up.. I have had to get behind her sometimes to lift her foot to the next step. She always breathes deeply before she begins as if this is a great effort for her which I am sure it is. Coming down the stairs requires me to walk in front holding the banister and her right hand with my left, while she leans forward onto me with my head in her chest to support her. I need to move slowly so her momentum does not become so great that we both fall down the stairs together.... I am looking for other solutions here by the time Fall arrives and may consider just moving her downstairs.. Our family room has a gas fireplace and half bath, and it is right next to the kitchen... may be the best solution.
An additional sign of instability occurred this month when she fell sideways off of the toilet where she was sitting. Although this seemed to be a freak occurrence, I have placed a chair along the open side to catch her if this happens again... I had just set her on the toilet after getting her out of the shower and she was still a bit wet and I think slipped while she was adjusting herself.. and of course I was just out of reach when she fell.
The wheelchair has been a godsend, as we still get out for long spins around the neighborhood, which she seems to enjoy.. I move slowly so she has a chance to see things and respond to them, and if she seems to respond to anything specific, I will stop for awhile and let her look at it. She seems to stay relatively alert and keep her head up during most of the trip. In contrast, when she walks, she always hangs her head and seems to watch my feet, shuffling along with great difficulty.
She has lost about 14 pounds from her peak weight a year and a half ago when sweets were important. She is now down to about her pre-dementia weight of 114 pounds, and has seemed to hold fairly steady for the last month or so.. It is getting more difficult to check her weight since she cannot stand on the scale without my support, so we have to take several tries including trying to get her to lean on the wall while it is calculating her weight. I may need to go back to a mechanical scale which might work better now. She eats slowly but still manages to get a reasonable meal down with me feeding her small bites and waiting in between. I use TV dinners, and Pasta meals. The pasta works particularly well and slides right down. I have begun mixing a can of Tuna fish with the macaroni and cheese which also seems to work well. For each meal I always give her a small bowl of fruit which is pureed from 16 ounce cans of peaches or pears, with a banana added. She enjoys the fruit and I supplement her meals with amounts that depend on how well she ate the rest of her meal (more fruit if she ate less of her regular meal).
We returned to the Neurologist this month and among other things discussed what has appeared to be left side deficits that began with her left hand and arm slightly swelling, and over time reduction of strength in that hand and arm. She also seems to keep that arm and hand tucked in to her body when she sits or stands. When I get her up in the morning, that whole arm and hand are very stiff initially like steel, and I generally do some exercises with her arms to loosen them up. Along with this, I think I have noticed some greater difficulty with her left foot, and her left eye drooping or tracking differently.. I told the doctor that these things could be my imagination, given the deficit in the arm and hand. His examination did not verify any problems in the leg or eye.
The doctor recommended a CT scan and also some upper neck X-rays to see if there was either a blood clot or some other physical explanation for the problem. We discussed doing an MRI, but because she would have to be sedated for that test in her current condition, we decided to pass this time. The MRI would have been only useful to research, as a method to determine the progression in frontal lobe atrophy. Additionally we decided to do a urine test just to ensure that there were no infections starting. Since she would not be capable of a voluntary sampling, the doctor ordered a catheter draw which turned out to be quick, simple, and had no effect on Shirley at all. The toughest part of all these tests was on me pushing her all over the Mayo Clinic in the wheelchair (actually not a difficult task except negotiating the elevators with the mobs). She did get scared for a few seconds in the CT scan machine. If the CT scan or X-rays do not show any physical cause, then the assumption will be that we are seeing an asymmetric progression of the disease in the brain.
During this visit we also discussed what preparation or approval was necessary to allow an autopsy of the brain by the Mayo research group to determine the exact diagnosis of this disease. Although this may sound a bit sobering to some, I was glad to have the conversation as I feel it is important to make sure we eventually get a precise diagnosis, and can better understand the potential hereditary impact for the children and future generations.
We also visited a new hospice facility opening in this area this fall. Hospice offers an alternative to normal nursing home type care during the terminal stage of any disease, in that it focuses on providing comfort care for the patient rather than technical solutions for prolonging life. My son who is an RN accompanied me and we had a very good discussion with the facility director. It is the only Medicare approved hospice facility in the state of Minnesota and their focus is on support for caregivers and patients within the home, although with this new facility in place, it would provide options for respite periods or for full time care if the patient could no longer be cared for at home. I feel that this is the way of the future and that there will be more focus on comfort care vs. prolonging life as an option for terminal cases in the future.
I know this journal entry may sound a bit sobering, but life is still good for us. Shirley is a delight to be with, smiles frequently and loves to cuddle and be hugged. She enjoys visits from friends and the children, and even gave the neurologist a big smile of recognition (I did not mention to him that she smiles broadly at anyone with a mustache). Her bothers and sisters that live across the country have been dropping in to visit her this summer. Although it is doubtful that she recognizes them anymore, she does seem to respond to their voices and always enjoys a big hug. We still have the support of wonderful volunteers and count our blessings every day.
October 19, 1997
The last two months have been busy ones, with the amount of "hands on" caregiving being required on the increase. That has left me with less time or energy for updating my journal and other related activities. Shirley's ability to walk, even with assistance, is about gone. She also has been resisting eating any foods with lumpy content and has been showing greater difficulty in swallowing anything with solids. Over this period, I have had to make some adjustments in both of these areas. I also want to comment here that these notes are probably of greater interest to other caregivers that are monitoring my journal for general education purposes.... rather than friends or relatives that are less likely to be interested in this level of detail. I mention this so that those friends and relatives will understand.
Our follow-up from the tests and X-rays taken last July confirmed that Shirley did not have a physical cause for the decline in function of her left arm and hand. Therefore it is assumed that the cause is an asymmetrical progression of the disease. Overall she has shown more of a "stiffening" of her legs and arms after lying in bed for a period time. Many times when I try to get her up she stiffens with her feet crossed and her arms and hands tight against her body, like steel. I sit her up slowly and bend and lower her legs first, then work her arms slowly. Her right arm and hand become functional, but her left arm and hand go back to being tightened against her body.
This progression of stiffening can also be seen in her attempts to walk. She must be literally held up in order to stand, although she will support her weight once you get her balanced right. Walking is slow and careful with each foot dragging the floor as she attempts to pull it forward. I need to hold her close in order to maintain her balance. She no longer will even attempt to balance herself, only to stiffen her legs, so it is up to the person holding her to balance her. I still make her walk with me in the house, to the toilet and table and back to her chair to ensure some minimum amount of exercise. I have the wheelchair set up for the volunteers when they stay so they can transfer her to the chair and move her if necessary. I will begin using the wheel chair inside more this winter as she continues to decline.
During this period, she quit walking up the stairs with me. Normally I would stand in front of her holding her hands and let her try to step up to each step, as I would pull her. Finally she had had enough and just quit. It had been start and stop for awhile. So I tried two other methods. The first (last resort method) was to turn her and sit her on a step. Then pull her feet up to the step immediately below her. I would take her hands and placing my legs against her knees would start to stand her up on that step, but then just sit her on the next highest step. This worked, although slow, but seemed to surprise her as she could not figure out why I was standing her up and sitting her down so much.
The second method I tried and that I now use involves me getting behind her and placing my right arm around her (as in a big hug) and my left hand on the banister. Then I reach down and lift her left leg up to the next step, hold onto the banister, and help her lift herself to the next step.. Then we relax a minute and just enjoy the hug, then go to the next step and so on. This method actually works well and feels stable. Shirley seems to like this method and occasionally will volunteer to raise her foot to the next step without me lifting it. As long as she can stand up (hold some weight on her legs) this method will work for us. Next step is a move downstairs I guess. We continue to come down the stairs the same way... with her leaning against me with my head in her chest and holding (tightly) to the banister, as she steps down the steps.. this is a bit tricky but still workable. If she refuses to step down, then I will need to resort to sitting her on the step and moving her down one by one as I described in the method of going up the stairs.
She has begun refusing foods that are lumpy including some pastas. She will open her mouth with just a small slit between her teeth as if to say "It has to fit through this slot".. then sometimes when I manage to get a spoonful half way into her mouth, she will clamp down on the spoon and not let me continue (or have the spoon back). So I finally have resorted to pureeing most of her food. I still follow the rule that it has to taste good to me for me to feed it to her (makes sense right?)... we use a number of the Healthy Choice chunky soups with chicken and vegetables in a sauce... also I buy the frozen grilled fish fillets which taste great... and I break up the fish fillet and put it in the bottom of the soup bowl, then add the chunky style soup on top.. and now I have added the additional step of pureeing the whole mixture enough that it eliminates big chunks. She eats it much better that way and will eat more of it. I went out and purchased a mini food processor that handles 16 ounces, and can easily be emptied and cleaned. I was finding that pureeing single amounts in the blender made it too difficult to get them out of the tall container as they would stick on the glass. I still do cans of fruit in the blender as well as her noontime fresh fruit drinks that I prepare.
All foods including liquids need to be spoon fed to her. She cannot drink from the toddler cups or other suggested devices because it requires her to tip her head back and she immediately chokes on it. By spooning the liquid, I lift but keep her head level and so I can deliver it to the front of her mouth and she can then chew on it and eventually swallow. I use Cranberry juice cut about one fourth with water and make sure she drinks a small glass at each meal. I have added a mid afternoon snack session with a pudding and small glass of cranberry juice.
The urine sample taken in July revealed a bladder infection that we immediately treated with antibiotics. It made it more evident to me that I was not getting enough fluids into her. As a result, I added a mid afternoon snack, and now include a mandatory 6 ounces of juice at each meal. It seems adequate now, but watching to ensure enough fluid intake is critical with a patient that can no longer communicate or get around on their own. I also learned that using the catheter method of taking urine samples is easy and does not seem to bother Shirley at all. At Shirley's general checkup at mid summer this was not suggested.... instead they were dreaming things up like me following her around with a pan trying to catch a "mid stream" flow... It was Shirley's neurologist that suggested doing the catheter draw and discovering the bladder infection. This brings to light the problems we have in home care and difficulty in finding a good source of general information that we need to provide quality care... The potential of Dehydration and its side effects is a primary concern for patients at this stage.
We participated in the 1997 Memory Walk held here in September. Including Shirley, who we took with us in a wheel chair, there were 17 of us which was the largest family team that walked. It included some of our friends, and some of Niki's friends and hopefully brought some visibility to younger families. We also raised $395 for the cause. It was an enjoyable event, with lots of snacks and a picnic afterwards compliments of Subway. Shirley became tired early in the walk and we left before the events completed.
The most significant event and milestone that occurred during this period was Niki's graduation from UM. She has moved out and taken a job in the Twin Cities. Shirley would be very proud of her and the independence she has developed, as am I. One of our volunteers stayed with Shirley so that my son and I could attend the graduation ceremony back in June (she actually finished at the end of the summer) and also help her to move to her new apartment. I know with Shirley's condition that for volunteers to stay with her for longer periods of time is becoming more difficult, and we really appreciated the help.
In general, things are still flowing well... more time consuming, but making the decision on where to locate her (upstairs or downstairs) when she becomes immobile will help that somewhat. She has learned some new "tricks", and will occasionally slide out of the recliner we place her in for the afternoons. She has learned to stretch her feet out and just wiggle down until she slides out onto the floor. Also, she has managed to slide out of bed again, so I took the frame off and now have the box springs and mattress sitting on the floor. Actually it makes it easier for me to get her in and out of bed since she can now sit on the mattress rather than just lean against it as she did when it was higher.
Shirley is still very sweet, smiles frequently, and is very cooperative as if she understands what we are attempting to do when we have to make changes. Volunteers still come periodically, and I have purchased a cellular phone that I carry with me when I am away from the house so that they can easily reach me. I have also found the phone useful for emergencies as it can hold 100 names and numbers, so I have programmed in all the volunteers and physicians as well as family. I signed up for the minimum program I could get for cellular in this area since it is intended just for emergency use.
The amount of "hands on" time with Shirley continues to increase, and I estimate is about 8 hours a day right now... which is leaving me a bit drained. But... short naps in the afternoon help, and chat sessions late at night with other caregivers that have become close friends on the Internet help me keep things in perspective.
December 31, 1997
Exit 1997!! Happy New Year!! We made it through another long year, but with many changes. This last month was one of the toughest, with Shirley finally losing her ability to walk. It had been coming gradually and I had been helping her as much as I could to delay the inevitable. Also, she cannot stand unless you hold her up, so even transferring her to the wheel chair from the bed or chair requires a good deal of lifting... I have found some new muscles.. All this brought on another major adjustment in our living style.
We have begun living upstairs in our large master bedroom where I have added the rocker/recliner and two pieces of our sectional couch. I shoved all our bedroom furniture against the end of the room. We also have the wheelchair and a table for eating. It looks more like a "sitting room" rather than a bedroom which is what I wanted to accommodate her friends and volunteers that come to stay with her. It seems to be working quite well. I still spend time in my respite (computer) room down the hall, and use the surveillance camera/monitor to make sure that she is OK. I intentionally decided to not move my computer into the bedroom as I need someplace to go hide periodically, if only for a few minutes at a time.
I still attempt to walk her across the room for exercise, and with her shoes on I can stand her and swing her feet to simulate walking.. This is becoming more difficult and I can feel the strain on my back, so I resort to the wheel chair most of the time. Occasionally I will bring her down the hall in the wheel chair to the computer room with me and she will sit next to me at the computer and doze or rock. She sleeps most of the time now, but does have periods where she will appear to be watching the TV. For some reasons the NFL ball games seem to attract her attention because of all the cheering and activity. I moved an older stereo we had in the basement room up into the bedroom to play Christmas music and other relaxing piano music that she used to like. There was no particular sign of recognition on her part, so I have gone back to the TV, as the visual seems to be more important to her.
All food is pureed now, and I have begun using a variety of "hearty" soups which I puree and then add some dehydrated potato flakes if it becomes too liquid. Occasionally I add a can of Tuna before I puree it for more protein. I also use creamy yogurt and pudding for snacks and give her about 6 ounces of cranberry juice twice a day with meals. In the morning I give her 6 ounces of YO-J (a yogurt drink) along with her cream of wheat. This last couple weeks I have begun using a thickener called Thick&Easy which works very well. I add two teaspoons to a 4 ounce glass of juice and it develops a custard consistency that can be easily fed with a spoon. She swallows it very well and this has eliminated the occasional choking distress from trying to spoon feed her liquids. There is another thickener called Thick-It that is more available in this area. Information on the web site for Thick & Easy claims that it will return 98% of the absorbed fluid to the body.
This was the first year that we did not try to travel to Shirley's mother for the holidays. It was a difficult trip last year and would have been impossible this year. We celebrated Christmas a day late, when my kids were available, making Sushi and Oyster Stew. We took all the presents into the bedroom and sat around Shirley with Christmas music playing. She dozed while we opened presents but seemed to enjoy the conversation and excitement around her. It was clear that the kids missed the excitement of being with their younger cousins. With both Niki and Rob working now, it is more difficult to schedule time together, so we enjoyed all being together for the holiday with Shirley.
We just completed dealing with another UTI, much worse than the one last summer. This one had Shirley distressed for almost two weeks before I figured it out and arranged for the Nurse to come and draw a sample to take in for testing. It was amazing how fast she improved once on Amoxicillum. UTIs can be serious and very uncomfortable, but I am getting smarter at recognizing the symptoms now. Without having an ability to communicate, it is frustrating for both her and I in dealing with comfort related problems. I have to monitor her expressions carefully to recognize the distress, which will frequently show only in her eyes.
There are new challenges for 1998. The physical activity is making me more tired and I need to train myself to deal with the lifting more effectively. I have not yet established an emergency procedure for getting her down the stairs and out to the car (except to call 911 or the over-the-shoulder procedure). I did find and purchase a used aluminum telescoping wheel chair ramp which will allow me to wheel her outside in the garage. I am still looking for a "sled" type vessel as an emergency method of getting her downstairs in case of fire or Tornado. Insurance coverage is changing, including some changes to Medicare that might affect Shirley related to home care. A much larger deductible for me. And then there is the challenge of trying to predict where we will be by spring and what I will need to know by then....
The one stable factor in our lives right now continues to be the level of support by friends and volunteers that come periodically to sit with Shirley while I go shopping. Without their support and that of my children, we would not be able to continue this way very long. Shirley still seems fairly content, and does have lucid moments where she will attempt a smile (at least with her eyes) in recognition of me, one of the volunteers, or the children. I frequently question the quality of life she has right now, but am satisfied that she is comfortable and feels safe, and at this stage that is about the best one can offer..
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