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.

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.

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.

But my mother is, if anything, the single most determined woman I have ever met.  Seriously, once she sets her mind to something, good or bad, that is it.  If her illness were just a matter of mind of matter; she would be hiking up a mountain screaming at the top of her lungs by now.  One thing that she did hold on too though, even from the beginning, is that she was going to drive again.  Of course, nobody entertained the idea, lest of all me, considering I couldn’t even leave her alone in the house for the first 6 months or so.  But she continued with her therapy, gained more independence, and slowly but surely got closer to her quest of driving.  She signed up for free lessons with a fully outfitted car, a great service provided by the Connecticut DMV.  A lady came to her house 2-3 times a week for as long as it took for my mom to relearn how to drive enough to be professionally evaluated. While my mom was absolutely over the moon about these “driving lessons”, I was in full panic mode.  Of course I wanted her to have her independence but I was just completely freaked out about her safety.  I just didn’t see how it was possible, especially given some of her mental confusion caused by the stroke.  But I really had to keep most of my reservations to myself.  First of all- she would just do this all behind my back anyway and Second- this was the first thing that made her happy since the stroke. Third- as a caregiver- you MUST pick your battles which I learned a while ago the hard way.
I went one day to watch her at one of her lessons; I met her instructor and checked out the car.  I was surprised as I saw her drive off, that I  had tears on my eyes, and I felt pride, not fear.  I never imagined what it would feel like to see my mom drive again!

Well the day finally came, after two months of driving lessons, she passed the test!  So there it is- an approval from the DMV.  So I contacted a local company, and had her car completely outfitted to accommodate her.  The outfitting process is actually really cool and I am glad that there are companies out there that do that.  Just about anything can be done to make a car or van drivable my anyone of any ability.  So there we were: the moment of truth.  My mom following me in her new car 20 miles back to her house.  Aside from the fact that I could barely breath and she was seriously driving 20 miles per hour, everything went well.  So now?  Well I got her a Jitterbug cellphone, I call her everyday, I try my hardest not panic or be too overbearing  And she gallivants around doing god knows what, is happy for the first time since her illness, and says I am driving her crazy

Here are two pics of the outfitted car so she can drive using only her left leg and left arm.

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

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.

All Senators should be contacted (see http://www.senate.gov/ for your Senators’ contact information), but the following Senators are leaning no or undecided and especially need to hear from Omnibus supporters:

Sen. Susan Collins (R-Maine)

Sen. Lisa Murkowski (R-AK)

Sen. Arlen Specter (R-PA)

Sen, Roger Wicker (R-MS)

Sen. Evan Bayh (D-IN)

Sen. Russ Feingold (D-WI)

Please pass on this message:

MESSAGE: I urge you to immediately pass the Fiscal 2009 Omnibus Appropriations Bill and oppose efforts to pass a continuing resolution for the remainder of the fiscal year.

A continuing resolution would result in drastic cuts to vital programs that are already struggling to address the unmet needs of people with disabilities.  A continuing resolution does not permit even minimal growth in program funding to address inflation.

Moreover, long-awaited funding for the Lifespan Respite program would be completely eliminated.  This new program was enacted in 2006 to support the nation’s 50 million family caregivers who provide the backbone of long-term care in the US, but it has never been funded. This bill includes a modest $2.5 million for respite to help families avoid or delay much more costly nursing home or foster care placements.  In these difficult financial times, it is more important than ever that the federal government expand the safety net that protects people with disabilities and their families from untenable situations.

Please pass the Fiscal 2009 Omnibus Appropriations Bill.  Thank you for your consideration.

PLEASE PASS THIS ALONG TO YOUR FAMILIES AND FRIENDS and ENCOURAGE ALL THE FAMILY CAREGIVERS YOU KNOW TO JOIN THE NFCA COMMUNITY OF CAREGIVERS. THERE IS NO COST! Just click here: http://www.thefamilycaregiver.org

Posted in Topics Tagged: lifespan respite bill ]]> http://caregiversupport.wordpress.com/2009/03/06/pass-the-lifespan-respite-bill-for-family-caregivers/feed/ 3 Sara http://caregiversupport.wordpress.com/2009/01/17/caregiving-when-expectations-turn-to-frustrations/ http://caregiversupport.wordpress.com/2009/01/17/caregiving-when-expectations-turn-to-frustrations/#comments Sat, 17 Jan 2009 14:09:55 +0000 Sara http://caregiversupport.wordpress.com/?p=235 ]]> 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.

And during the holidays, my expectations became the catalyst for frustration.  I had all of our usual holiday traditions planned out.  I was determined to recreate our Christmas to be as close to normal as possible.  I planned for us to go to the local Christmas tree farm, holiday shopping, decorating, and all of our other traditions.  All of these traditions were ones that we had done since I can remember.  And always my mother would call the shots on what we were going to, when were going to do them, and how…me diligently following her suit.  So, ok, this year I had to do the initial planning, but I thought surely once we got started, our roles would be as they always had been.  They didn’t.  It began when she struggled at the Christmas tree farm, unable to have an opinion on the tree and didn’t seem to know how to work her tree stand once we got home- something she had done countless times and in the past had always barked at me that I wasn’t doing it right.  Shopping became a complete disaster.  We had a list of gifts to get for her friends and family, and I was hoping for her to pick something out for me… because this was her only chance to get gifts.  Three frustrating hours and countless meltdowns later…we had nothing.  I then asked her to pick out something for me.  This was her only chance for shopping before Christmas.  I had picked out my own birthday gift that year and I desperately wanted to not have to pick out my own gift for Xmas.  My mom had always been amazing at picking out gifts for my before the stroke.  She couldn’t do it.  I had a meltdown.  And she cried.  We had worked hard for over a year for her recovery.  And she wanted to be the mother that I needed her to be.  She simply couldn’t.

As I thought about what had happened during the holidays over the next couple of weeks, it finally dawned on me- the only way a good relationship between my mom and I would work- would be if redefined my expectations of her.  She sensed my expectations and it did nothing but frustrate her and stress her out.  It now made sense to me why she seemed to be more relaxed and have more fun with her sister or even the hired caregiver than she did with me.  I will always want my mom back; that is a feeling that will never change.  But I need to accept that she can’t be exactly what I want her to be.  Perhaps in letting some of my expectations of her go, we will both be more relaxed and just be able to enjoy each others company for what it is.  It may not be how it was before illness struck, as a defined mother and daughter relationship, but now just as two people who love each other.

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”.