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.

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.

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

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.

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/ 2 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.

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”.

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.

During my 20’s, I mostly focused on my career.  I was always a very driven person and while I had one or two serious relationships during that time; I was not ready to “settle down”.  In my mind, I felt like that’s what my 30’s would be for.  Had I been able to predict the future, I would’ve married my college boyfriend and starting having babies immediately.  Ok, maybe not, but the idea of it sure sounds good now (laugh).  So, here I am, one year into caregiving and I just started working again (my career had to be redefined too).  Frankly- I am struggling just to juggle the two.  Meanwhile, my friends and acquaintances are getting married, having babies, buying houses, etc.  Sometimes I feel like everyone is moving forward, and I am frozen in time.  I barely have time to fit in a pedicure, let alone have the time or focus to build a family of my own.  I wonder- if and when- will I have the opportunity to fulfill my own hopes and dreams?  As a young caregiver, and in my particular situation- this is my biggest challenge and fear.  But while this is the “iceberg” for me, there are many other challenges unique to young caregivers out there.  Here are some others that I have experienced:

• The acceptance of a caregiver role at a time in your life, when you just don’t expect it.
• Innocence lost; having to deal with sickness and a world of responsibility so young.  And knowing you will never get that back.
• Lack of understanding; while most of my friends have been very supportive, but they have never been caregivers.  Their intentions are good, but at the end of the day- they can’t relate and it’s very hard to understand unless you have been through it.
• Support groups:  I have been to many.  I felt completely out of place.  Everyone in the room was generations older than I.  While they stared at me with pity- they couldn’t really relate to me either.  Hence the online blogs and support forums- I found this a much better outlet for me. 
• The loss of a relationship as you knew it.  Role reversal.  While I watch my friends mom’s support their daughters and enjoy their grandchildren; walking down ailes at weddings, babysitting, etc.  Even the typical annoying things- mothers getting overly involved, preaching on how to raise their grandchildren.  I will not have that.  The nature of my relationship with my mom has changed.  I am thankful for our relationship now; but it has been redefined and my mom can no longer be be “a mom” to me.
• Freedom and Time.  Time to do what a young person should be doing: having fun, building their career and family, traveling, finding love, going out with friends, etc.  And this is where the Freedom plays a huge role.  Can I do some of these things as a caregiver- yes and I try hard to fit in the time whenever I can.  But no matter what I do, where I am-I no longer have the freedom of being worry free.  Once tragedy strikes, and you become a young caregiver- freedom and innocence are hard to get back. 

So to all the young caregivers out there- whether you are caring for your spouse/significant other, a sibling, or a parent- You are not Alone.

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. 

Here are just a few things that I personally have done that make me feel like a person again and help me to be refreshed to face the ongoing stress of caregiving:

• Go to a spa day.  Ok so I haven’t had whole day- but in the caregiving world- an hour of pampering feels like day.
• Spend some time with a friend.  Talk about what you are going through but its good to hear about them as well.  Some of my friends seem scared to tell me about their problems, but I actually welcome it- it makes me feel good to be there for them and it gets my own problems off my mind. 
• Try to get outside.  Enjoy the outdoors.  I have a dog, so I go to the dog park when I can.  It’s a joy to watch my dog have fun and it makes me remember the little things that really make me happy.
• Go on a date- whether it’s something new or an existing relationship.  It’s amazing how much better a little romance can give you.
• Take up a hobby- new or old.  I have a million, but recently I started knitting again and playing video games (I know- a little weird to like both but I have many interests).
• Go to see a therapist.  I see one that specializes in caregiving, grief, and loss.  This may not seem like “me” time but believe me- it is.  I go one hour a week and every single time I hate when my hour is up.  If it were up to me, I would have her move in with me (joke).
• Try something new that you always wanted to do.  This will give you a sense of accomplishment for your own goals.  Before I started working and was caring for my Mom full-time- I got an online Spanish program.  I had always wanted to learn and it felt great to do something like that.  As caregivers, we put a lot of of normal lives on hold, so it feels great when you do something that otherwise you never made time for before.
• Find a support group - online or otherwise.  It feels great to read what other caregivers are going through and even better if you can help someone else just by giving support.  We are not alone, although many times we feel we are.  Let’s rally together. 

There are many other helpful tips to deal with caregiver stress.  These are just a few of mine.  Please leave any more tips that you have for caregivers under comments.

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. 

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.

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.