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”.

Being a Young Caregiver

While all caregiving has its commonalities, being a young caregiver definitely has its own unique challenges.  Being thrust into a caregiver role at a younger age, when my mom at the age of 57 had a debilitating stroke, I was faced with all the “common” caregiver challenges but at a time in my life when it was least expected and with absolutely no warning.  I immediately left my career, my home, my friends to move back home (2,000 miles away) to do everything that was humanly and sometimes inhumanly possible to help my mom.  I did this on instinct, and most people will say “well you do what you have to and I would do the same”; but as any caregiver knows this simple isn’t true.  Not everyone would do this. And really I don’t think you know what you will do until you are faced with it.  I myself had no idea how I would handle a sitation like this until it happened to me.  Being a caregiver, especially at a young age, is a huge sacrifice.  I don’t regret it, but sometimes I can’t help but feel that I am missing out on some of the best years of my life.

Caregiver Stress

Caregiver Stress is something we all have.  And unfortunately it is here to stay for as long as we are caregivers.  I always hear “You have to do something for yourself or take time for yourself, etc.”.  I typically say “I know”  and sigh.  I know I should be making myself more of a priority- but easier said than done.  It’s hard to find the time, especially now that I am both working and caregiving.  But the truth is, as much as I don’t like to hear it, it is important- no it is a necessity- to make time for yourself if you want to avoid a total burnout.  I have to admit, I am not the expert at doing this myself.  Sometimes I literally have to force myself to ignore all the things that need to be done and concentrate on doing something nice for myself.  Recently, my best friend has resorted to sending me text messages acting as ” my conscious” telling me to go get a pedicure or buy myself flowers.  Luckily for me, I have a best friend who would do that; unluckily for me I actually need that push in order to do it.  The luxury of having freedom and a ”me-centric” lifestyle are long gone.  But that doesn’t mean that I shouldn’t have or feel guilty for having as much as my own life that I can get.  Albeit, I don’t exactly have a lot of time for a “life” but when I do- those moments are that much sweeter because I don’t take them for granted anymore. 

Medicare launches new website to aid caregivers

Medicare just launched a new feature on their website, called “Ask Medicare“. This section is specifically for caregivers.  This website includes Medicare basics, help on long-term care plans, options on at home or facility care, and resources for local support.  This information is very useful if your loved one currently has Medicare or may be eligible for Medicare. 

 I have a little over a year until my mom becomes eligible (she is only 58 and we have to the wait the 2 years from when her permanent disability went through).  I know that she will still need supplemental insurance to cover everything, but Medicare will help a lot.  Right now, her Cobra payments are over $600 a month.  Yes, you read correctly.  So, in addition to having to live off of Social Security Disability and Pension checks, a good 1/3 is taken out for insurance-  not to mention all the copays, prescriptions, etc.  Yikes is right!  That’s why I am working, working, working… and still hoping to win the lottery.  Hey- you never know.  I figure my luck is bound to change one of these days and why not have it be the day I picked the winning numbers for Powerball. 

Caregiver’s First Family Get Together

This weekend, my mom and I will be going up to New Hampshire for my aunt’s wedding.  This will be our first family get together since her stroke, almost a year ago.  I am nervous!   There are the logistics- the 4 hour drive for us and our two dogs, all the bags, the special need’s equipment for her, etc.  Then, will she be able to get around the hotel ok, will the shower be adequate to fit the chair in it- how in the world will I be able to help her, carry everything, and hold two dogs- AHHHH.  Then there comes the emotional aspect.  This will be the first time since my mom had the stroke, and I became a caregiver, that the whole family will be together. My mom is the second oldest of 11 children.  Not all of them will be there, but many will.  Some of them have not seen her since she became sick (I am not going to get into how I feel about that).  How will they react towards her?  Her communication is strained and you’d be surprised how uncomfortable that makes people feel- even her own family! How will I feel seeing members of the family who are there to celebrate but were a no show during the hard times?  There is also a past history of our Irish family (under the influence of alcohol) behavior that has occurred during family get together’s, which may perhaps be adding to my apprehension.  Maybe my worries are all in vain, and the weekend will go smoothly.  Well, I am going to do my best to keep the peace.  After all- this is the wedding of my mom’s sister who has been a great help and hugely supportive to her from the beginning.  And we are there to celebrate her long and loving relationship with her partner, which they are now able to make legal- thanks to the new law in New Hampshire.  Wish me luck and I am sure I will have plenty to write about when I return.

Bittersweet Moments in a Caregivers Life

my mom and me, august 2008

There are moments in my caregiving life where I can just live in the moment.  In these moments, come clarity and hope- for myself, for my mom, and for life.  And just as suddenly as these moments come, they leave, to be replaced by a bittersweet feeling. 

I had a beautiful weekend with my mom.  I had put away all my caregiving responsibilities- errands, lists of things to do- all of it.  I wanted to just spend quality time with her.  And I did.  We went to an inlet near the beach; we fed the birds; we went shopping (the fun kind); we played with our dogs; we even layed in my bed together to watch a movie.  As a caregiver, with so many things to take care of, so many lists, so many responsibilities- quality moments, let alone weekends, don’t happen very often. 

But througout the weekend, I would have moments of “feeling” time.  This was not a feeling I was unfamiliar with- it has happened from time to time.  I would hear the clock.  The clock of time’s past and the clock of time’s future.  The feeling of what has been lost and what will be lost.  I hear the clock for her, and for me.  Time…had clouded my beautiful moment, making it bittersweet.  I suppose moments of feeling this way are inevitable when caring for someone with a serious chronic illness.  It’s hard to “live in the moment” all the time. 

For me, my hope is that I will have more moments where I forget time, the clock stops, and all that is left is an awareness of that present moment.