About Me

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A human being hoping to help the world become more human.

Monday, November 2, 2009

This Site is Dedicated to my Mom

This is a picture of my mother in better times, and it's probably how she would most like to be remembered. Just a few short years after this photo was taken, all of her real troubles began.

I decided to create this blog in her honor to highlight the many changes and challenges that both she and I had experienced when life began to become more difficult for her. I chose to care for my mother at home, lived the twilight years with her, and am glad that I did.

Eventually all of us will have to face our own aging and challenging life experiences whether we want to accept it or not. Eventually all of us will have to make some hard decisions, whether for ourselves or someone else. How we approach, handle, and follow through will determine how it will all turn out. If you are a strong person like me, then you can likely handle such a challenge.

Depending on our own particular states in life can determine how well we will be able to face our own mortality. The greater difficulty, however, arises when someone you love needs help with their own, and becomes dependent on you for their needs. Through this venue, it is my hope that I may be able to help those who are first noticing changes with a senior or elderly parent or relative (the beginning stages), those who are currently wrestling with harder issues (independence vs dependence), those dealing with health and family issues (at-home care or nursing home), and particularly those who do choose the challenges and responsibilities of at-home care. It can be overwhelming since it encompasses so many levels, but I am here to say that it IS do-able because I've been there already. I've lived it. I'm not the first to do so, and I am definitely not the last.

Included in my story and incorporated in this blog will be helpful information and access to other sites that had been helpful to me, and I'm sure will be helpful for you.

What Health Reform Means for Long-Term Care - Kiplinger

What Health Reform Means for Long-Term Care - Kiplinger

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I believe that anyone who may be considering long-term care for themselves or someone they love should research all of the implications that Health Care Reform may bring.  It may not be what we all think it is.

Sunday, November 1, 2009

The Independent Living Assessment from Philips Lifeline

The Independent Living Assessment from Philips Lifeline

The Year That Changed My Life

I know that it's been a while since I posted anything original, but personal problems had gotten in the way, so I do apologize.

If someone were to ask me what the hardest part of caring for an elderly parent was like, I would not have a straight answer--it was all hard:  emotionally, financially, and physically.  Everyday brought a new challenge that had to be faced.  Watching your own parent slowly "drift" away from reality while trying to keep a happy face is not easy to do.  I now know what it must be like for those who care for an adult child with physical and mental disabilities, though my time was limited to only a year.

Each day, I would get up early and go through what became a routine:  wash-up, get dressed, prepare for breakfast, and set-up the medicines that would have to be administered.  Some days, mom would already be awake and waiting for me to help her to the bathroom.  This is what became a regular practice each and every day:  I would help her to sit up and wait for her to get adjusted to being vertical, which would take anywhere from 10 minutes to an hour.  I'd talk to her and let her know what needed to be done, all the while assuring her that she was safe and everything was going to be all right.  When she was ready, I had to place each of my feet in front of hers, grasp her hands, and on a count of three, slowly pull her to her feet.  Then I'd have to wait for her to get her balance and confidence to walk with her walker to the bathroom.  In the early stages, she wanted to "do it herself," though that also became more difficult over time.  You might think of it as "potty training" for an elderly person because I literally had to do everything for her.

When that was done, it was a long trek back to her bed or sometimes to the kitchen, and then carefully getting her to sit down and "catch her breath."  Then the fun would begin...administering medications.  Mom had 13 different medicines, most of them tablets, that had to be taken in the morning.  At first, she had no problem taking them on her own, but in time, swallowing became an issue.  The solution was to cut in half or crush each one and mix it with some soft food.  Needless to say, this was awful for her because pills don't exactly taste great when broken-up, even when mixed with food.  It became more and more difficult over time to get her to take her pills.  Some time later, her doctor advised me to split her medications between morning, afternoon, and evening, which only added to her misery and mine.  I truly believe that it was because of the medications that Mom slowly lost her taste for food since she associated food with medicine.

Mom did not always stay at home in the early stages, and had to be taken to doctor's appointments.  I was able to purchase a red transport chair, and had to learn how to schedule my time to get her to the car, out of the chair and into the car, and store the chair until we arrived at our destination.  Then it would all be in reverse.  I had to time everything from travel, to parking, to transporting from the car and back, and did this mostly on my own.  Afterward, Mom sometimes wanted to go to her favorite restaurant for " a nice meal," so we would go through the same routine again.   Mom also wanted to go to church on Sundays and observe certain church holy days, so I had to create a game plan for those situations also.  I never really gave a second thought about doing any of this because I was doing this for my Mom, and would do it all again for her if I had to.

Most people today have different ideas or definitions of what love really is.  I was always taught that love is a sacrifice.  After all, is that not what Jesus Christ did for us on the cross?  I was given my cross to bear and accepted it out of love for my mother, and I am glad and happier for having done so.

Related Subjects from Catholic Teaching

THE FOURTH COMMANDMENT
(Excerpts from "The Catechism of the Catholic Church")

Honor your father and your mother, that your days may be long in the land which the Lord your God gives you.4

2208 The family should live in such a way that its members learn to care and take responsibility for the young, the old, the sick, the handicapped, and the poor. There are many families who are at times incapable of providing this help. It devolves then on other persons, other families, and, in a subsidiary way, society to provide for their needs: "Religion that is pure and undefiled before God and the Father is this: to visit orphans and widows in their affliction and to keep oneself unstained from the world."12

2214 The divine fatherhood is the source of human fatherhood;16 this is the foundation of the honor owed to parents. The respect of children, whether minors or adults, for their father and mother17 is nourished by the natural affection born of the bond uniting them. It is required by God's commandment.18

2215 Respect for parents (filial piety) derives from gratitude toward those who, by the gift of life, their love and their work, have brought their children into the world and enabled them to grow in stature, wisdom, and grace. "With all your heart honor your father, and do not forget the birth pangs of your mother. Remember that through your parents you were born; what can you give back to them that equals their gift to you?"19

(emphasis added)

4 Ex 20:12; Deut 5:16.
12 Jas 1:27.
18 Cf. Ex 20:12.
19 Sir 7:27-28.

ADgitize

Tuesday, September 1, 2009

The Warning Signs of Change

In the time since my father passed away, and mom went through her depressive stages, she had a series a small problems that forced her to face some different health issues.

One day, mom and I took a late dinner out, and after we left the restaurant, she said that she wasn’t feeling right. I knew that she absolutely hated to go to any emergency room, and would avoid it at any cost, so I suggested that we check out a near-by hospital clinic. It was almost 10:00pm, and the clinic was about to close, but they let us in. In a short time, they took my mom’s blood pressure, and found it at around 235! Suddenly, there was a bit of panic. The attending doctor said that mom had to go to the emergency room at a near-by private hospital—luckily the same one that mom’s doctor was associated with. In no time, she was admitted, and I was later told that she came close to having a stroke or heart attack. I knew that mom had a congenital heart deformity (a small hole) that she had since birth, and her doctor had previously tried to convince her to get a pacemaker. Mom would not hear of it then, but it became more important now. Within a day or two, mom had her pacemaker implanted, and started on a regimen for high blood pressure. This was the first eye-opening experience for me and for mom, and the first of many changes associated with her aging process.

In 2002 and 2003, it was her eyes. She had been complaining about visual problems for several months. Mom loved crossword puzzles, and she began to notice “flecks” in her field of vision that were disturbing enough for her to back away from her favorite pastime. The flecks were only the beginning, which started in one eye. Within a short period of time, she complained about a “crackling” effect in her vision similar to a kaleidoscope. Mom indicated that it was starting to become a problem for her, so she gave in and went to see an ophthalmologist who determined that she had cataracts and the beginning stages of glaucoma.

The ophthalmologist at first prescribed some extremely expensive eye drops, which helped to a certain extent, but later gave way to a need for surgery. The doctor told her that she could have implants embedded in her eyes that he claimed would likely improve her vision. Mom was skeptical, but only for a short time since she was told that the alternative was to lose her eye sight completely. It turns out that there is a genetic predisposition for blindness on her side of our family, and this terrorized her immensely. So, she had the first eye implant procedure. Within a year, she had the other eye implanted as well. The implants were difficult for her to deal with, because even though her eyesight had improved somewhat, she still found that she could not focus as well as she used to. Her days of doing crossword puzzles were slowly and sadly coming to an end. On top of all of this, the doctor told her that she also had macular degeneration—the dry kind that is more difficult to help. From that day on, mom was in another slow downward spiral into depression.

When mom began having her visual problems, I started to focus more on her general way of life. I started to spend even more time with her and became more concerned for her well-being. After my dad died, mom continued her “normal way” of life living alone in the upper apartment of the family home that she once shared with him. While I was going to work and trying to pursue a college degree, she was home alone most of the time, although my sister was living in an apartment just below. At first, I wasn’t paying too much attention to what was actually going on in her life when I was not around, but slowly I did begin to notice things. For example, she would complain about how she would suddenly doze-off while watching television, and awake 15 or 20 minutes later feeling as if she had slept for eight hours. This was evidently happening more frequently over time. There then came a time when she admitted that she had left something cooking on the stove, usually a pot of water or soup, and forgot all about it. By the time that she realized what had happened, in-between “naps”, the pot had already cooked down to nothing. She said that this had occurred “a couple of times”, and that threw me into a panic. That was enough for me to hear, especially when I discovered the nylon window curtains in the kitchen partially melted from the ensuing heat of the stove. That’s when I insisted that she stay in the first floor apartment with me. I also began to depend upon my sister for more help, despite the fact that she had her own problems with Bi-Polar depression, and had unresolved personal issues with our mother as well.

It was not easy to convince mom to move out of her apartment, even under the circumstances. After all, she lived in that same place since 1940. It was home. It was where she lived independently since 1994. I did everything that I thought that I could do to convince her to leave, and what changed her mind was the safety and security factors of the situation. I really had to convince her that she could no longer rely on her own independent determinations for safety based on what she told me of her experiences. I had to go as far as to present several scenarios of “what could happen” if she tried to remain on her own. Besides having visual problems, the 25 stairs up or down from her apartment had become more challenging. She already had some problems walking and keeping her balance, so traversing those stairs was a tremendously daunting task. I continued to present the “what ifs” to her until she finally gave in to the reality of it all: her safety was at issue. It was one of the worst times in my life as a daughter because I knew only too well that she had to give up some of her independence, and begin to depend on someone else for her needs and well-being.

From that day on, everything went as well as it could. At least I knew that she was safer living with me than being alone. No one should be left alone, and especially someone with the beginning stages of diminishing capacity.

Wheel Chair and Mobility Resource Guide... Live More Independently

Wheel Chair and Mobility Resource Guide... Live More Independently

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Population Research Istitute Information

"Get Involved"

http://pop.org/get-involved

Monday, August 31, 2009

Going From Bad To Worse

As I was beginning to realize that I needed more help than I had with mom, I asked my brother if he would be willing to help out in exchange for room and board. He quickly agreed, so we sat down and discussed the situation with our mother, and how we could work things out to our individual benefits. We scheduled our times so that he would be available for mom while I was at work, checking in with her on occasion. Needless to say, mom was not too happy that he moved back into the family house. Overall, everything went well for about a month or two, and then things began to change for mom again.

Late in the year of 2005, I was just finishing up with some courses that I took in college when mom started to become more pensive over some symptoms that she was experiencing. For one thing, she was becoming more agitated and depressed about the changes in her vision. However, she was beginning to complain more about having a strange pain in her chest near the area of her pacemaker. Mom was taking various drugs at the time—for high blood pressure, estrogen, thyroid, and at least two types of heart medicines. On top of that, she also wanted to take supplements, particularly vitamin C, D, and E. Originally, I just discounted her complaints because of the medications, but also thought that there might have been some interactions with the supplements. When I could finally convince her to see her doctor, the doctor basically related the problems to the medications and the fact that she was getting old, and that was about it.

I would like to make a comment at this point about mom’s doctor. I have never really liked this doctor from the very beginning because of her apparently lackadaisical attitude toward my mom, and from past experiences that she had with my father. This doctor cared for both my mom and dad at one time. Of course, it did not help that my mom would not take her physician’s advice every time, and canceled many of her regularly scheduled visits when she really needed to be seen. Mom had a love-hate relationship with her doctor, and preferred to “self-analyze” her many issues, too. This did not make for a good relationship with the doctor, but I was also skeptical about the doctor’s true feelings and intentions. In any case, no matter what the complaint was, my mom was basically told that she was experiencing the effects of old age and not much more could be done. When mom began to complain more about the chest pains, I knew that I had to do something soon. It was one week before Christmas in 2005 that everything changed again.

I had just began what I thought would be a nice Christmas break when mom became very upset about having pains in her chest. When she finally agreed to let me take her to the ER, I never thought that we would be facing anything close to traumatic. After taking some x-rays and tests, the attending physician said that they wanted to admit mom to the hospital. It had little to do with the actual chest pains, but more to do with a urine analysis. I had to convince mom that she was going to be alright, and that they just wanted her to stay for observational purposes. So, that’s where I left her, all the while wondering what I could expect to hear.

The next day, I received a call from the hospital and was told that they had found a mass on her right kidney. They said that they could not be sure of its extent, but that it was the size of a small golf ball and only a sampling of the tissue could offer a better scenario. I was told, however, that they were hesitant to perform the biopsy because of her condition and the other implications involved, so they wanted her to stay for more tests and observational purposes. I was just stunned! Mom never complained about having any type of pain, severe or otherwise, at least nothing that could be related to a tumor.

Sudden Shock!

I did not know what to do but cry at the thought that mom might have cancer. I gathered myself together and decided to go to the hospital and see her the next day.
It was a beautiful but cold Sunday morning when I arrived at the hospital. I was still pretty shook up, and had to gather all of my strength to overcome any emotion so that I would not upset mom.

I did not immediately inform any of my family members about the situation until I could get a better understanding of what mom would be facing. When I walked into her room, the shades were drawn by the window, and the curtain was mostly closed around her hospital bed. There were no lights on, either. I came around and saw that she was sleeping, so I sat down and watched for a while. Then I decided to seek out a nurse or doctor to see if I could find out anything more about mom’s situation, only to discover that there were no doctors available to talk to. Since it was a holiday week, and a weekend, they were short-staffed and all of the senior physician’s were apparently out of town. I was told that some doctor would call me by the next day. Mom was pretty out-of-it, so I decided to go home.

Over the course of the next 4-days, more tests were taken, though it is not clear what was actually done. I was told that a bone marrow test had been done, and that it came out normal, but there was still a concern about mom’s kidneys. Mom seemed to be OK for the most part, but I soon became aware that something else was going on. Every time I came to visit her, she was usually sitting up on the side of her bed and apparently in good spirits, laughing even. However, she began to tell me about some curious things: that there was some kind of a “conspiracy” going on with her room mate’s teenage children, and also seeing strange things in her room. While it appeared that the conspiracy she spoke of was more like teenage fun to placate my mother, the basis for it was that mom was seeing imaginary, cartoon-like figures running around the room. When I tried to tell mom that she might be hallucinating, she laughed it off, claiming that they were real to her.

I questioned one doctor, who appeared to be straight out of med-school, about the hallucinations, and he indicated that they were likely due to the sedatives and medication that they were giving her. When I asked what medicines she was on, they could not give me any straight answers. That's when I started to get angry. It seemed that I was annoying them with reasonable questions, and I felt like they were giving me the run-around. At that point, I decided to pay real close attention to what was being said and done to my mother.

I later did a little research of my own and found out that the medication(s) that were causing the hallucinations, particularly anesthetics, were also negatively affecting her memory and thought processes, and likely irreversible. Little did I know then that the day mom was admitted to the hospital would be the last day that she was truly lucid, truly herself. It would be the last time that mom was "normal".

Note: Two great resources for medical information on the internet are The Merck Manual (for aging) and WebMD. They will offer answers that the medical "experts" can't or won't offer.

Between the Hospital and a Hard Place

After spending one whole week in the hospital, over Christmas no less, it was time to take mom home. She was in good spirits, but she seemed to be a bit more distant and quiet, which was totally unlike her. So, to try to cheer her up a bit, I took her to her favorite restaurant and had a good meal.

From that time onward, and any time that she had to go to an appointment or anywhere, mom required the help of a transport chair. I quickly learned what a daunting task that would be since I never really had to care for another person's personal needs before. I also realized that mom had a more difficult time walking, getting up or sitting down, and even began to require some help with her bathroom needs. Little did I know that this would only be the beginning. It was becoming more apparent that my mother was now more dependent on me for most all of her basic needs and activities of daily living.

When mom was still in that hospital, I had a lot of time to consider what could happen and what might be needed to be done under certain circumstances. While I never really considered the possibility that mom would have cancer, I knew that her health and well-being would become more of my responsibility to some extent. I began to recall the experiences that she had with her primary doctor, and the hospital that the doctor was associated with, prior to the current situation. I never much cared for or appreciated the care--or lack thereof--that mom was given in the past, so I decided to seek out another doctor and another hospital for a second opinion. Granted, most people would not even think of doing something like this with someone in their late eighties under the circumstances, but believe me, it was the best decision that I could have made. So, I had all of mom's medical transcripts transferred to another doctor and hospital for a complete re-evaluation of my mother's situation and health issues.

It really came as no surprise that the new doctor would confirm mom's original diagnosis: kidney cancer. The better news was that her new primary doctor and all of the medical staff that were working with mom were absolutely wonderful and caring people. I could not ask for anything more. She was re-evaluated for her basic abilities, re-tested and re-examined by specialists for treatment of her cancer, and finally referred to a hospice group who would work on an in-home basis.

Just a note: While it may seem that I am a bit too casual in my explanation about what was actually done, let me assure you that making the decisions that I made was not an easy task for me. I was on a roller-coaster ride with my mother's health and well-being, and I knew that I only wanted the best case scenario for her. A nursing home was not a place that I would ever send my mother to live out her days, and I promised her that I would take care of her no matter what circumstances. After all, she gave birth, raised, and cared for seven children--she deserved to have that care and love returned to her. I also made a promise to my father just before he died that I would take care of mom--it was his last request.

In the following months after that Christmas in 2005, my life went into a whirlwind. While the hallucinations had subsided for the most part, a whole new avenue was about to begin in mom's life. The hospice staff would stop in once or twice a week to check mom's vitals and see what may or may not be needed. The nurses would spend time trying to talk to her while taking her vital signs, and she would sometimes become disagreeable, even aggressive. At the beginning, mom really had no clue as to the severity of her situation, mostly because she was NOT in any real pain, and would become defensive if anyone tried to explain things to her. In fact, she sometimes thought that it was some kind of joke. For a while, she was her usual highly opinionated and sometimes cranky self who only required minimal help, unless she asked for it. As time slowly passed, however, it was becoming more apparent to her (and me) that she was changing: her memory was faltering more, her ability to converse was becoming more difficult, and she was unable to focus enough to do her beloved crossword puzzles. For most of her daily routine, she would watch television shows with a semi-blank stare and take more frequent cat-naps. Mom was slowly slipping away into dementia.

The Daily Routine

While it was nice to have some caregiver help, and mom becoming more cooperative, there were some things that at first only I would be able to do for mom. These concerned her medicines, bathroom time, and personal hygiene. If anyone thought that doing these things for a child was frustrating enough, they have no idea what it's like to do them for a parent.

Mom's daily medicinal regimen consisted of eleven prescription drugs and two supplements every day. Originally, they were divided-up between three intervals of morning, noon, and evening, but eventually had to change to twice a day because it was just so difficult to administer them. While mom still had some idea of what was going on with her, she was not always agreeable to taking medications in a graduated way. In fact, she hated it! Who wouldn't, really. For me, it was a challenge and struggle every day.

Each morning, mom would wake up and wait for me to help her to the bathroom. In the beginning, she slept on the living room couch--in a sitting position most times. For some reason, being anywhere near horizontal frightened her terribly. She once told me that when she lived on her own, she slept this way most of the time. Anyway, I would bring her the walker that she used and placed it in front of her. Then I would stand directly in front of her, carefully grab both of her hands securely, and with her help she would come to a standing position. I would have to wait a few moments for her to catch her breath and balance, and then made the slow walk to the bathroom. In the beginning, she would tell me to leave and take care of her needs herself, but later it became too difficult for her to maneuver around or try to sit down or stand up again. Since we had a "booster seat" for the commode, it made things much easier for her. I soon found out that what everyone else takes for granted is a major chore for an elderly person to do.

Once she managed to return to the living room--this was where she wanted to be, she would sit down and watch some television shows. I would then start breakfast, and prepare her morning meds. In the beginning, mom had little trouble taking a whole pill and was very cooperative about it. She would take them one at a time, have a little food, and then relax with a small cup of coffee or tea. As time went by, however, she began to fight taking any pills, so I had to resort to crushing them individually and mixing them with food or liquids. She absolutely hated it, and would sometimes spit it out. Then I would have to start all over again. This went on for a several days until I was able to find a caregiver who I could trust to help me with her needs. That's when I decided to seek a private caregiver, and one that could possibly stay overnight.

Her name was Janina, an angel sent by God! Even though it took some time for mom to get used to her, the facts were that she loved to cook ( absolutely great cook!), she did not mind cleaning, and could perform everything that was required for mom with great care and love. She also got along great with the hospice staff. My prayers were answered, at least for a short time.

What Personal Life?

As all of these events were taking place, I soon realized that mom would need to be monitored and supervised on a greater scale. It became increasingly apparent that my time away from my job would eventually be more problematic. As it was, I had already taken what was left of my vacation time from work, and had to enroll in Family Medical Leave (FMLA) in order to be available at home. While my brother, and to some extent my sister, were doing their best to help out, I knew that it would not be enough and would prove to be more taxing on their own personal lives. As it was, mom really did not want their help as much as she wanted mine. While she obviously needed to have family members around to help, mom still had issues with her other kids that she would not get over--even under the circumstances. As a result, I had the difficult and daunting task of trying to persuade mom to agree to a private caregiver.

At first, I sought the help of the hospice team, but soon found out that they could only address the medical aspects of mom's care. They really did not have the capacity to arrange for more personal care. It turns out that hospice is paid for through Medicare, and anything else is up to the family and their financial ability. So...I began the arduous task of searching for a caregiver.

I did a lot of research on the subject of care-giving, and what I found was mind blowing. All of the companies and franchises available looked great until I factored-in the overall costs. On an hourly basis, the minimums ranged from $13.00 to $17.00, which equates to $130.00 to $170.00 for a ten hour day. When I computed this on a monthly basis, it was staggering! Mom did not have much money and had absolutely no life insurance or anything that could be helpful. Since I knew that I had to do something, and soon, I decided to try out a couple of options, just to see how it might work out.

My first option was to try out the help of a friend who had a private caregiver. She was an older Slavic woman, with a thick accent, who dressed like she just came from a party. I left her alone for a couple of hours with mom. When I came back, the woman was scared out of her wits. Apparently, mom did NOT like this woman. Mom grabbed a soup ladle and chased this poor lady all around the place. Looking back, it was kinda humorous, but it was not funny to me at the time since I really hoped that the arrangement would work out.

My next option was to try out a service that was provided through a retirement community in the area. Their initial cost for the first hour of every visit was $25.00, and $15.00 per hour afterward. I really had no real choices, and I was getting desperate for help, and I knew that I would have to swallow the costs involved. I sat down and tried to seriously talk to my mother about the necessity of needing a caregiver, and eventually she gave in, though hesitantly. I decided to try it out for 5 hours a day at first, staying within distance "just in case". For every day that a caregiver was arranged, it was always someone different, which did not help matters much. Mom had her "favorites", and then there were "the others" who she really disliked and would be totally uncooperative. In one case, mom managed to slip past the caregiver, shot through the entrance door and out into a drenching rainstorm. The poor caregiver had to grab her before she ran into the street as she was screaming out at the top of her lungs that she was "being killed". While it was frustrating, I had more "talks" with mom and begged her to try and cooperate. It took some time, but she eventually gave in. I was getting scared and more exhausted by the day.

When I had some "free" time, I would go out into our yard, talk to God for help, and cry...a lot! My brother was a great help to me as a shoulder to cry on and to bounce thoughts and ideas offgof. The rest of my family could not, or just would not help out with the situation, and that was my biggest heartbreak. I thank God for the hospice staff, though. They were very caring and helpful, talking me through my more trying moments. But overall, I felt very alone.

Illinois Department on Aging: Caregiver Resource Centers

Illinois Department on Aging: Caregiver Resource Centers

Tuesday, August 18, 2009

Read Your History!

http://pop.org/20090122816/malthusian-delusion


"Part 2. The Malthusian Delusion and the Origins of Population Control"