NO ONE TOLD ME THIS!

Not much time had passed when I heard Clara yell, “Michele” at the top of her lungs.  I scurried over as quickly as I could to hear the announcement, “I need to go to the toilet and I need you to get me up.”  Clara provided little assistance as I literally put my arms around her and picked her up.  I escorted her to the bathroom and she asked me to pull her pants and underwear down.  It seemed like each task was getting worse.  I puttered around her apartment, doing some light dusting waiting for her to finish in the bathroom so I could help her back to her sofa.  When I heard her call my name, I wasn’t alarmed, until I found her still sitting on the toilet.  I guess I didn’t have a clue at this point because I asked her if she needed something, i.e. toilet paper etc.  She said, “I can’t reach, I need you to wipe my butt.”  Okay, there weren’t any lessons for this one!  My voice said, “Sure, no problem” but my head said, ‘Gross, it stinks in here and that is disgusting.’  I tried to imagine back to when my sons were very young and I was on butt wiping detail but as I leaned over Clara to wipe her, I thought for sure I was going to vomit.  Old lady poop is nothing like I remember a three year olds poop smelling.  I finished or so I thought, when Clara said, “Wipe it again.”  This time I kept chanting in my head, ‘You can wash you hands in a minute, that’s what soap is for;’ over and over.  I flushed the toilet still feeling ready to hurl, washed my own hands, then helped Clara up and pulled her panties and pants back up, and got her back to the sofa.  She then asked what I was going to serve for lunch.  Food was not foremost on my mind, but the bathroom incident was over and it was time to get back to the day and lunch was just a couple of hours away.  Up to this day, I would typically eat two meals a day, but now I found myself thinking about food all of the time, planning Clara’s diabetic meals and dinner for my own family.  Before long I was eating three meals a day, and gained ten pounds the first month.

The Journey Begins

My life changed on October 22, 1997.  That was the day I was thrown into the role of full time caregiver and it felt like my life was turned upside down.  Just two weeks prior to that day, I had undergone outpatient surgery and was just starting to feel recovered myself.  It was a beautiful October day.  My two sons,  had finished their homework and went outside to play ball.  I decided to take a quick nap before starting dinner.  That’s when I heard Clara yelling for help.  She fell and broke her arm which left her almost immobile.  As if a broken bone wasn’t bad enough, she broke her arm right about where it meets the shoulder.  A cast was not possible so a sling was put on and it was stressed that she had to keep that arm completely immobile.  It was her right arm and she was right handed. 

As we got back home that night from the emergency room, Clara was filled with fear, mainly that she would move her arm without meaning too.  Clara’s eyesight had already put certain limitations on what she felt she could do, and now she sat paralyzed with fear to even move.  I was embarrassed when Clara asked me to undress her and put her pajamas on, but my compassion for her outweighed my embarrassment.  I was ever so careful as I slipped off her clothes, put her pj’s on, then helped her into bed.  The next morning, I was over early to help her back out of bed and to her sofa.  I tested her sugar level as I had been doing regularly and then got her syringe of insulin out of the refrigerator.  Clara said she needed both hands to give herself the injection; one hand to grab a fleshy part of her belly, and the other hand the give the injection.  Since she only had use of one hand, Clara said I would have to give the injection.  I have to admit, the thought of it made me very nervous and I’m not normally a nervous person.  Flashbacks of the session with the nurse during the injection lessons came to mind and I visualized the nurse standing over me like she had with Clara insisting that I give the injection.  I also remembered that my injection hurt, and my biggest fear was hurting Clara.  I was still having a hard time each morning poking her finger tip to get a drop of blood for the monitor to test her sugar level; I would apologize profusely each time.  Now I had to add an injection to my guilt.  I took a deep breath, gently grabbed a fatty piece of her belly and gave the injection.  When finished I sighed with relief and announced, “It’s done.”  Ever so sweetly, Clara said, “You have a gentle touch, I didn’t even feel it.”  I wasn’t sure if she was being truthful or not, but it gave me the confidence I needed for the evening shot and took a bit of the guilt away as to whether I was hurting her.  That morning is when I realized my life took a drastic turn.  Clara felt comfortable holding her cup of coffee and sipping it, but was afraid to feed herself.  Again, it was a bit awkward to feed my mother-in-law like a toddler, but compassion was a good motivator to get me beyond myself.  After feeding her and cleaning up the dishes, I went back to my portion of the house, but left the door open so I could easily hear Clara if she needed to yell for me.

The days leading up to my new role as CAREGIVER

 

After years of taking care of our own place and primarily my husband looking after his mother’s house, we starting talking about finding a place where we could all live together.  My husband talked to his mother, explaining how difficult it was caring for two homes and two lawns and told her of our idea to build a house with an in-law apartment for her.  Clara, my mother-in-law, was always eager to please her children, and agreed to this plan.  When she moved in, she really just needed help getting groceries.  My mother-in-law never learned to drive, yet still she was mostly self-sufficient.  After the first five years, it was obvious her health was beginning to deteriorate, but she had refused to go to the doctors for the previous thirty years.  Getting her to agree to go to a doctor would not be easy. 

Clara loved to read, especially looking through the gossip magazines, and as her vision failed, she missed that.  When I suggested that I take her to an ophthalmologist so she could read again, she reluctantly agreed.  The day of her appointment she was so nervous that she didn’t sleep all night.  Little did I know what we were in for that day.  The doctor was completely rattled and became unglued as he examined her eyes, which heightened Clara’s nervousness.  She was unable to see even the largest E on the eye chart, and the doctor could not believe how the back of her eye looked.  Her retina was filled with so much blood and was continuing to bleed.  He kept saying in a hyper tone, “Oh my God, oh my God.”  At this point, I was a bit rattled myself.  I was completely floored when he asked Clara if she was diabetic and she admitted that she thought so.  Both her mother and brother died of complications from diabetes, and I learned that day that Clara suspected that she had developed diabetes about ten years before, but was too frightened to go to the doctor for treatment.  She had never uttered a word of this to us. 

The eye doctor insisted we see a retina specialist that day and finally, Clara’s fear of poor health was greater than her fear of seeing another doctor.  Off we were to her emergency visit with the specialist.  This doctor remained calm as he was examining Clara’s eyes, but bluntly told her there was nothing he could do until she got her diabetes under control, and recommended an internist.  On the way home, I asked Clara if she would let me take her to this internist and she agreed.  At this point she was so scared; I think she would have agreed to anything.  When I called the office, they did not have any openings for weeks for a new patient.  I pleaded as I explained Clara’s situation and I was told they would see what they could do.  I was fearful that if I didn’t get her to the doctor immediately, she would lose her courage and change her mind.  Within hours, the doctor himself called to find out first-hand what Clara’s situation was.  After explaining what was said by the ophthalmologist and retina specialist he agreed that Clara needed to be seen immediately, and offered to meet us at his office on Sunday morning since there were no appointments available during regular business hours.  Once there, he discovered that diabetes was only one of several significant health problems Clara had.  Clara was close to fainting when the doctor told her he would have to take some blood for testing, she was so afraid of needles.  Once this can of worms was opened, there was no turning back.  Each visit resulted in more tests, procedures and referrals to other specialists. 

In less than one year’s time, I had taken Clara to more doctor appointments than if she would have gone once a year for a checkup the previous thirty years.  As I learned Clara’s family history and her own history, Clara would defer the responsibility to me to explain her history, symptoms and all of the medications she was now on.  When it came time for Clara to start giving herself insulin injections she plainly told the doctor, “Michele can do that.”  I was grateful when the doctor referred the both of us to a nurse at our local hospital for lessons and this nurse demanded that Clara attend the session too.  In my eyes, this nurse was awesome; she had dealt with the likes of Clara before.  The nurse firmly and authoritatively told Clara she was not leaving until she learned how to give herself insulin injections.  Inside I was cheering, because I did not want the stress of being the sole person responsible for giving her insulin.  Clara resisted, but the nurse refused to take ‘no’ for an answer.  Then the nurse informed me I had to give myself a practice shot so I would know how it felt, and then my attitude changed.  Now internally I was nervous, but acted calm.  I knew I could not expect Clara to do something I was unwilling to do, but I was not prepared for this!  Clara finally submitted and gave herself a practice shot of saline solution, and then announced, “That wasn’t bad at all!” and we all laughed.  Personally I thought my self injection hurt, so I was quite pleased with Clara’s response.

The Caregiver ‘Club’

Most of us have observed either in real life or on television two older men meeting for the first time with a bit of awkwardness.  Once it is discovered that they both are veterans, an instant rapport appears.  No matter how different their lives are or their backgrounds, there is a commonality between them.  Someone that may stumble across these two men minutes after their initial meeting could easily assume they have been friends for years by the ease of their conversation.  These men that just met could share stories and experiences that they may have not even shared with their own family members.  I have never served in the military or have fought a war, but I have experienced a similar phenomenon because of my role as a caregiver. 

When I would meet a fellow caregiver, an instant rapport appears.  As a result, I could candidly speak of the range of emotions that I’ve experienced as a caregiver without fear of being judged.  To try to have that same conversation with someone that never had to step into that role, there are too many things you have to try to explain.  If you talk about your frustrations, it is interpreted as whining.  Often a conversation with a non-caregiver about the rigors of being a caregiver, results in the non caregiver offering sympathies to you for a role they wonder if they are capable of fulfilling.  That same conversation with a fellow caregiver, often results in laughter as you swap your ‘war stories.’ 

Through my own experience, I learned things about myself that at times made me feel proud and other times ashamed.  I used to think that anyone could be a caregiver, it was just a matter of stepping up to the plate when needed, but I’m not so sure anymore.  You do not have to be a superwoman to be a caregiver, but you do have to be willing to put portions of your own life on hold.  At times I could do that cheerfully, other times with resentment.  The funny thing is, I never liked the scary rides at the amusement park, and the most dreaded to me was the rollercoaster.  Those few times I was coaxed into getting onto the rollercoaster, I would have to keep telling myself it would be over in a couple of minutes.  Yet, here I was in the role of a full time caregiver, daily riding a rollercoaster of emotions with no way of knowing how long it would last.  Some days I felt braver than others.

Hello, I’m taking over for Sara.

My name is Michele.  My mother-in-law lived with us for 13 years, the last 8 years, I was her full-time caregiver.  I was fortunate enough not to have to deal with the emotional trauma of Alzheimer’s disease.  My mother-in-law had a great fear of doctors, and as a result had an advanced case of diabetes by the time I could finally get her to even agree to go to the eye doctor.  Neglecting her diabetes for so long ravaged her body, resulted in blindness, end stage renal (kidney) failure.  She died a few years back.  So while I am not currently in the role of a caregiver, I lived through it, I survived to tell my story!  I have a supportive family and a number of friends that I consider blessings in my life.  Still, there were times I felt very alone in processing my varied emotions.  When others would see how much of my life needed to be devoted to the care of my mother-in-law, despite having two teenaged sons at home, I would often hear, ”I could never do that.”  I firmly believe that you do what you have to do, when you have to do it!  (Say that 3 times fast!)  For many years I naively thought anyone could be a caregiver, it was just a matter of stepping up to the plate.  I no longer believe that.  That is my brief introduction.  Looking forward to an interchange….

Driving Post Stroke, a Caregivers Perspective

The truth is…I never thought this day would come.  Nearly two years ago, my mom had a massive stroke, leaving her right-side paralyzed with a loss of speech.  The stroke was caused by severe artery  diseases in which one of her corotoid arteries is 100% blocked, and the other about 70% blocked.  She was previously not aware of the disease and needless to say, her stroke was shocking to everyone.  The doctors were not too optimistic about how much recovery she would make because the brain damage had been so severe.  While her recovery is mostly on target with what was predicted (she regained some of her mobility back and got about 30-40% of her speech back)- one thing is for sure- no one ever thought it would be possible for my mother to drive again.

HBO Documentary: Alzheimer’s Project

HBO Documentary Films has a 4 Part series that depicts hope on the horizon and sheds light onto Alzheimer’s Disease.  This multimedia event starts May 10th at 9PM, EST. 

Watch the trailer at HBO here:
http://hbo.a.mms.mavenapps.net/mms/rt/1/site/hbo-hbocom1-pub01-live/current/launch.html?maven_playerId=alzheimersoutreach&maven_referralObject=4115985

Pass the Lifespan Respite Bill for Family Caregivers

Dear Caregivers,

Last week the House passed the FY09 Omnibus Appropriations bill that includes first-time funding of $2.5 million for Lifespan Respite.  However, there is significant concern that the bill could be delayed or even derailed in the Senate.

Please contact your Senators immediately (they are considering the bill right now on the floor) and urge them to support the omnibus bill and then mobilize your grassroots to do the same (Message Below).  If the omnibus fails a cloture vote in the Senate, Congress will revert to a year-long Continuing Resoution with most disability, health, education and social service programs funded at the FY 2008 level, and NO funding for Lifespan Respite.

Caregiving: When Expectations Turn to Frustrations

After my mom had a stroke, I spent months in crisis mode, doing everything humanly (and sometimes inhumanly) possible to help her recover.  Now, more than a year later, with the dust settled, she is gaining independence and I am gaining some of my life back.  As I was finding a new life outside of only caregiving- work, friends, a relationship; unbenost to me, I began to hope… My mom had made some recovery- both physically and mentally.  From where she had begun, she had gained quiet a bit of independence.  I never was naive enough to think that things would go back to the way they were before the stroke, but I unconsciously had hope that with the recovery she had made, maybe just maybe I would have my mom back.  And somewhere along they way, that hope had turned into expectation.  My expectation that at any moment now, she would just snap out of it, and become my feisty mother that would call the shots and tell me what to do.

The Treatment of People with Disabilities

I recently read a post from another blogger about the “right” way to treat someone with a disability.  She had an encounter with someone at a store who had a mental or communication disability.  She couldn’t understand what the man had said to her so she nodded and walked away.  She blogged about her experience, wondering if she had done the right thing.  Other people’s comments to her had a common theme: that most people don’t know what to do, what to say, or how to react to someone with a disability. 

As a society and in American culture (in general), feeling uncomfortable around people with disablilities has been ingrained in us, similar to how our society views the elderly.  This subject hits home for me, as after my mom had a dibilitating stroke, she was both in a wheelchair and had aphasia (the inability or difficulty to communicate).  Disabilities can me mental and/or physical.  I have seen first hand how hurtful it can be the way some people react.  This is painfully obvious when my mom and I go out in public.  It can be the odd looks or avoidance at the grocery store; the blank stare from the waitress when my mom orders food from a menu; hearing people whisper around her “whats wrong with her?”, and even a family member saying “Do…you…remember…me?”.  All of these reactions are based around ignorance.  For instance, my mom is smart as whip and understands most everything perfectly well, yet many people assume she has the mental capablility of a 1 year old just because she has difficulty with verbal communication (aphasia). 

The truth is, is that everybody has a story, everybody is human and everybody, including people with disabilities, the elderly, and the sick- deserve to be treated with respect.  We need to teach ourselves, our friends, and our children how to treat ALL people with respect.  And as the old saying goes “Don’t judge a book by its cover”.