This was one of those weeks when I was extraordinarily grateful for my girlfriends.  We all have rough weeks but for caregivers and parents of children with disabilities there are times where it’s completely overwhelming.   Those days where you consider whether you can do it anymore and fantasize about packing it all in, assuming a new identify and opening a taco stand on Venice beach (OK, that last part is my particular fantasy.)

But we’re the one who must keep it together and keep the family running.  For many parents of adult children with profound intellectual or physical disabilities this means there’s no rest stop in sight – like ever.  There are parents in their seventies and eighties who are exhausted still caring 24/7 for their child when at that age their child should be helping them.

In my case, if you don’t follow my blog, my husband has primary progressive multiple sclerosis and my 19-year-old son has intellectual disabilities.  I’m one of the lucky ones.  My husband has a handicap-accessible van so he can help with the driving duties for my three kids and my son can help with chores around the house. 

But this was one of those weeks where it all just felt MASSIVELY OVERWHELMING.  Managing the house while being the sole person responsible for bringing home the bacon $$  – well let’s just say that taco truck started looking real appealing. 

Fortunately, I’ve learned that at those times I need to reach out to my tribe.  A few girlfriends who I can trust with my vulnerability and who get me.  The ones who can see me at my lowest and know what to say and how to say it. 

Every woman needs her tribe but, for those of us who are caregivers, we every now and then need someone to care for us

I’m so grateful that over the years my girlfriends have learned all the tips below on how to help me.  My tribe has changed over the years with some women being added and, sadly, some leaving either by their own choice or by my recognition that they were not able to offer me the emotional support I needed.  It’s critical that the women in your tribe are lifting you up rather than bringing you down.

Whether you’re the woman who needs to cultivate your tribe or you know someone who could use support, here are some critical do’s and don’ts.  If you’re the woman who needs support, feel free to simply send this along to your girlfriends if you can’t find the words to tell them:

Don’t:

  • Feel like you can’t tell me about your problems. You look at me and think you don’t have the right to talk about how exhausted, stressed, frustrated you are in comparison but you do.  And sometimes it’s nice to be distracted from my own issues and focus on you.  Numerous studies have shown that by giving back and doing for others it helps us feel better
  • Say “I don’t know how you do it.” – neither do I but I don’t have a choice. Pointing this out simply makes me feel more defeated and doesn’t provide me with practical solutions.
  • Tell me to take something off my plate – not possible. I have to work, I have to spend inordinate amounts of time at therapist and doctor appointments, PPTs with the school, fighting with the state to get services and financial assistance, advocating for equal opportunities for my child, maintaining my house and parenting my other children which includes being involved in their lives.  Not one of these is an “option.”

Do:

  • Take me out to have fun – when life seems overwhelming sometimes it’s just a matter of a change of environment. Invite me to take a walk, go to the beach, meet for a coffee or glass of wine or go to a concert.  Planning is never easy as life always throws a curveball so oftentimes a spur-of-the-moment invite is the best!
  • Take charge – there are times when we’re so overwhelmed and exhausted we can’t even think straight. That’s the time to take charge and, rather than asking how you can help, just do it – drive my kids to their activity or appointment, bring over a prepared dinner, help with grocery shopping if you happen to be out or some chore around my house if you have a bit of extra time.
  • Point out to me my small successes – it’s easy for me to lose sight of achievements when everything seems like such a struggle.
  • JUST LISTEN – there really are no answers and I don’t expect you to have any. I really need to just vent sometimes and then I’ll feel much better.  (Women often get that it’s men that want to fix things but just thought I’d remind you.)
  • Slap me in the face when I need it – Wallowing in a pity party is never going to do me any good. Trust in our friendship enough to know that I can take and need some tough love.  Let me have a day of feeling sorry for myself but then slap me and tell me to “Snap out of it!”
  • Stick by me – Sometimes all I need to hear is that I’ll never be alone and you’ll be there for me. The future is scary for me – knowing that you’ll be holding my hand and helping me figure it out is really all I need.

Image: McAlpin, NYdailynews.com

 

An estimated 36,000 people die from the flu or complications of the flu each year, most of these deaths occurring in senior citizens. Because seniors’ immune systems begin to weaken at the age of 65, they are at a much higher risk for contracting the sickness. The CDC estimates that 200,000 people a year will be hospitalized for the flu, and disproportionately it is the elderly who this affects.

There are two options for the vaccine for senior citizens: the traditional vaccine that is administered to anyone who gets it, or — the choice I would recommend as long as given the “okay” by the doctor — is the stronger strain of the vaccination, designated for those over 65 to trigger a stronger immune response to flu.

As mentioned before, many seniors do not just die from the flu alone, but complications of the illness. Those with a history of heart problems, chronic lung disease, diabetes, or renal failure are more likely to have complications with the flu and should take extra precautions against contracting it. The most common complication associated with the flu is pneumonia, which leads to the most deaths and hospitalizations. Arming seniors with the pneumococcal vaccination is the best protection against this, even paired with the flu vaccine, just to be safe.

Not getting the flu shot, which in recent years has been made so convenient and accessible – and it is always covered by MediCare – is a risk too big to take with senior citizens. The vaccine can reduce the risk of illnesses and complications by 60 percent and reduces the incidence of flu deaths by 90 percent in seniors. Most importantly, getting your loved ones vaccinated offers the peace of mind of knowing that they will not suffer or be exposed to an array of illnesses and complications that could  prove fatal this season.

LifeisBeautifulI’ve been a caregiver for 15 years now but it’s kicked into high gear over the last two.   While there’s no question that being a caregiver is exhausting and oftentimes frustrating, it’s also helped me figure out some important life lessons that I probably wouldn’t have known otherwise.  Here are some secrets I’ll share:

We know how to put life into perspective – The phrase “don’t sweat the small stuff” is our motto.  The rude sales person, our child’s messy room, the delayed train and the person who cut us off while driving just don’t carry the weight of sitting in a hospital room with our sick child or trying to figure out how to pay for the desperately needed medications and therapies not covered under insurance.

For us, life is made up of the tiny moments not the major events – Most likely I will never see my son get a driver’s license or be able to dance with my husband at my daughter’s wedding or have my dad recognize his grandkids as they accept their diploma.  But there’s no guarantee that I’ll be around for those things either.  What I take most pleasure in are those smaller moments, seeing my daughter open a birthday present she desperately wanted, enjoying a quiet dinner with my husband and watching my son go off to the movies by himself with a friend (a HUGE accomplishment for an intellectually disabled child.)

We only keep the company of supportive people –  It’s easy enough as a caregiver to feel like you’re not doing enough or short-changing somebody in the family –  you certainly don’t need someone else being critical of you.  For whatever reason, some friends will never be comfortable being around the person you care for, even if they’ve been long time acquaintances.  It hurts, it’s confusing, but it’s the reality.  Too often we turn ourselves inside out trying to please other people and/or make them comfortable around the people we care for.  In the end, it’s exhausting and not at all productive.   Eliminating toxic relationships leads to peace

We’re not Martha Stewart and it’s OK – There’s way too much pressure to have a clean house, organized shelves and a gourmet meal cooked while at the same time baking home-made cookies for the school bake sale and sewing our kid’s costume for the school play.  That illusion died for me a long time ago.  My kids are great about helping around the house but when they’re finishing homework at 9 or 10 o’clock at night, the last thing I’m going to request of them is to clean the sink of dirty dishes.  It just doesn’t matter! I know that if I go down because of exhaustion the important things, like work, doctor’s appointments and school meetings, won’t happen.  It really is OK to have a messy house.  And store bought cupcakes, put onto a nice plate, really can pass for homemade!

Join me for a life-changing half-day retreat to learn how to become happier, healthier and in control of your own life.

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I had no idea how hard simply walking would be for Greg in two years. Photo: Maring Visuals

I had no idea how hard simply walking would be for Greg in two years. Photo: Maring Visuals

Two years ago, just after I got married, my husband Greg was diagnosed with Progressive Multiple Sclerosis.  Most people don’t realize that there are two types of MS; Relapsing Remitting MS, which is the more common type and, as the name implies, offers some times of remittance, and then there’s Progressive, which my husband has.  Progressive is less common and the really bad one.  There are no drugs for Progressive MS.  There are no “remitting times.”  It’s simply degenerative and constant.

When we first met, Greg was extremely active.  He went to the gym everyday and he was a former pro-golfer.  We would take long walks and he was teaching me to play golf.  All that changed once he was diagnosed.  For years he had been misdiagnosed with Lyme Disease, something that happens frequently.  Ironically, one of the first really bad days he had was the night before our wedding.  We were hosting a party at a beautiful winery for our friends and family and our photographers were having us walk through the vineyard.   It was extremely hot and humid and Greg could barely walk without me supporting him.  What I didn’t know at that time was that he was dealing with two of the worst factors for MS sufferers – excessive heat and stress.  Regardless, the evening was still magical and our wedding the next day was absolutely perfect.

Over the past two years, Greg’s MS has progressed.  Neither he nor I know what our future will look like.  He often apologizes for the “situation” he has put me in.  As I tell him constantly, I love him no matter what.  Just as I’m certain he wouldn’t have called off the wedding if I was the one with MS, the thought never crossed my mind.  True, the plans I had for our retirement will probably look different but that’s OK, we simply need to create a new reality.   I also remind him that no one’s future is certain.  Any one of us could face some physical disability or life-changing catastrophe at any time.

Does that mean I’m not scared sometimes?  Of course I am.  I worry about how I’m going to support our family when he can’t work.  Last year, when he could no longer snow blow the driveway and I had to do it, I had a bit of a pity party that I needed to handle all of the chores around the house myself.  But I’m not really doing it myself.  My kids have learned that they need to help out – way more than most of their friends do.  At 7 years-old, my daughter is in charge of doing the laundry and cleaning the bathrooms.  My 15 year-old son, despite being intellectually disabled, is strong and puts in and takes out the air conditioners, rakes the leaves, takes out the garbage and empties the dishwasher.  My 11 year-old daughter cooks, helps her siblings with homework and is my “second in command.”  And Greg has become air traffic control – getting the kids where they need to be, managing the family paperwork and picking up the slack where ever he can.

We’ve created a new family reality – one that works for us.  I’m learning that Greg will have good days and bad days, that there are instances that I can’t possibly imagine how he’s feeling.  I’m also learning that I too will have good days and bad days and, as the caregiver, I’m entitled to that.  Our lives might not look the way either of us imagined but we’re in this together and we’ll figure it out.  People often say that they don’t know if they could do it.  Well, there’s really not an option when you love someone – you just do it.   The only choice you do have is how you will deal with it.  I’m choosing happiness.  It’s a heck of a lot better than the alternative.

Disclaimer –  I have a material and/or financial connection because I received a gift, sample of a product and/or compensation for consideration in preparing to write this content. All opinions stated within are my own.

 

More Information from The Safety Mom’s Media Segments

November has been designated National Caregivers Month.  As someone who cares for three generations of men in my life (my dad has Alzheimer’s, my husband has MS and my son has intellectual disabilities) I understand all too well the stress caregiver’s are under and the physical toll this can take.

The theme this year is “Family Caregivers – Now More Than Ever” and boy, that’s the truth.  Consider this – today there are more than 90 million family caregivers in the United States and 2 out of every 5 adults is a family caregiver.  Family caregivers provide $450 billion worth of unpaid care each year. That’s more than total Medicaid funding, and twice as much as homecare and nursing home services combined.

Sometimes, caregivers are thrust into this role after a traumatic accident or sudden illness.  Other times, it’s far more gradual, as when we realize our aging parents need help with daily activities or their driving skills have diminished.  It’s usually during the holidays, when adult children are visiting their parents after not seeing them for several months or even a year, that they see the decline in mom or dad.

It’s All About Planning Ahead

Recognizing the signs that your aging parents might need help and getting resources in place before an illness or injury occurs will go a long way in reducing the stress on you as a caregiver.  Comfort Keepers, the In-Home Companionship and Care agency, offers a free Home Care Survey which can help you determine if your parent or older relative might need some help with daily activities.

Being a “long distant caregiver” is not easy – even if the distance is 10 miles.  Insuring the your older parents are remembering to take their medications, keeping scheduled doctor’s appointments and simply stay connected to family and friends is difficult when they’re not living with you .  And then we always worry about what would happen if they fall or have a medical emergency.    The VTech Careline phone system is a great tool in helping seniors continue to live independently while giving caregivers the peace of mind to know they can get help at a moment’s notice.  In addition to the phone, which features larger buttons, and four frequently-called programmable buttons that you can be customized with the person’s photo, there is a pendant that they can wear that also acts as a phone to call the four pre-programmed numbers, answer the phone and talk.  So, in the case of my dad, my mom wears it in case he should fall or there’s an emergency, she doesn’t have to leave him to run and get the phone, she can call 911 or me directly from the pendant.  What I also love about the VTech Careline is that you can program “reminder calls” that can be set up at any intervals to remind your parent to take their medication, if they have an appointment and even to check if they have enough food in the house.

Whether your caring for an aging parent or child, be sure they can get help in an emergency

As I said, I not only am a caregiver for my father but also my son with intellectual disabilities.  The number of parents caring for a child with special needs is growing dramatically in this country.  Issues of wandering and/or emergency safety when they are away from home is a major cause of stress for any parent but especially for a child who might be non-verbal, autistic and/or not able to advocate for themselves.  The Amber Child Safety System allows caregivers to track their child’s location through their cell phone, set up and set up “safe zones” and “danger zones.”  Perhaps most importantly, you can store all of your child’s vital information securely in the system so that if they are unable to communicate with emergency responders if they are injured, they can be cared for appropriately.  Clearly this is a great system for elderly people as well, especially with Alzheimer’s or dementia.   All members of the Safety Mom community can receive a 25% off discount on the Amber Child Safety System when calling their toll free number at 855-726-2377, and mentioning the “SafetyMom”  promotional code.

There’s a high likelihood that, if you’re reading this, you care for someone.  But, if you don’t and you have a friend who’s a caregiver, share this information but also offer to help out – maybe it’s just watching the person they care for while they just take a walk, get a manicure or have some quiet time.

We want to hear from you if you’re a caregiver – how do you handle the stress and feeling of being overwhelmed?  What advice can you give to others?