You can be a caregiver and also care for yourself.

There’s a look that comes over caregivers that allows us to spot one another – it’s the look of exhaustion.  A dullness in our eyes and usually a sallowness in our skin.  Being a caregiver is emotionally and physical exhausting.

I remember when I first entered the world of being a mom to a child with Intellectual Disabilities.  I started meeting other moms who were further along on the journey which is when I noticed the common characteristics.  There’s also an edginess about us.  Every time our phone rings and we see it’s the school calling we just know it’s going to be a problem that will require our immediate attention.

Fast forward ten years to when I got remarried to an incredible man. I was positively glowing with the existence of a new romance.  And then, four weeks after our wedding, he was diagnosed with Primary Progressive Multiple Sclerosis.  While I didn’t necessarily know what to expect I remembered growing up watching my mom’s best friend care for her husband with MS.  I recalled how she looked and more so how she behaved.  It was if she kept her emotions contained.  There was laughter and smiles but never exuberance.  Mostly I remember how she always looked tired.

With Primary Progressive MS things start getting bad quickly.  There are no drugs and no remissions, it just keeps progressing rapidly.  I watched Greg go from walking at our wedding to being in a wheelchair full time within a few years.  And as I maintained a strong, confident appearance for him, inside I was grieving and freaking out.  I saw the life I had dreamed about slipping away and morphing into a life of caregiving for my son and my husband.

It was difficult for friends to understand how I felt or how to help me.  I watched our lives as a couple become more isolated.  There were friend’s homes we could no longer visit because there were stairs leading in or their bathroom wasn’t handicap accessible.  Even restaurants we frequented turned out to not be accessible. Nothing gives me more pleasure than a romantic dinner at the beach watching the sunset but a 500lb powerchair gets stuck in the sand, as we learned very quickly when we needed to call EMTs to rescue him so that too became a distant memory.

Some might consider it selfish, but I realized I needed to save myself.  I had no intention of leaving Greg and I certainly would never abandon my son, but I knew that I couldn’t let my life slip away.   First of all, I needed to be strong physically, mentally, and emotionally in order to care for both of these men for the long haul.  But even more so I wanted a life of happiness and adventure. And I had a right to it.

At first it was small things, going out to dinner with a friend, taking a hike, hanging out at the beach for a few hours or going to an exercise class at the Y.  I came to accept the fact that some of those adventures couldn’t include Greg.  I started taking day trips and even multi-day trips with girlfriends or solo.  I needed this to recharge.  I also travel a great deal for speaking engagements and to work with clients.  Not only do I love doing this, but I have to do it.  I need to in order to financially support my family.  But to do this required help from my family.  My husband needs help getting into bed at night and my kids do it while I’m gone. Greg and my son have become an incredible team – the dynamic duo.

I made sure at a very young age that my son knew how to take care of himself.  He can make his own meals with a bit of oversight, do the dishes, take out the garbage, do the laundry, mow the lawn and shovel the snow in the winter. He can also grocery shop.  What he can’t do is drive.  Fortunately, we have a minivan that has hand controls and Greg’s powerchair is the driver’s seat so he’s able to do the driving.

This isn’t to say he and I don’t do things together as well.  We take trips together, we still go to the beach (but stay on the walkway rather than the sand) and go out to dinner at handicap accessible restaurants.

I know I’m one of the lucky ones.  There are women who are caregiving for people with profound disabilities.  But even then, it’s possible to find small moments of escape by creating a plan and asking for help.  Too often we feel like we’re doing it alone.  Even one hour a few times a week to escape to a coffee shop, take a walk at the beach or even read a book in your car can dramatically help.  But it requires you to be willing to take some time for yourself.  I repeat – this isn’t selfish!  You deserve and must care for yourself as well.

Do you feel guilty doing something for you?  Do you think it’s selfish to be able to go out and enjoy some activity when you’re loved one isn’t able to?

First it starts with the mindset that you deserve happiness.

 

Are you stressed by all of the demands on your time from family and work? Get my free guide 5 Steps to Create a Chill Life.

If you would like to join a group of supportive women in midlife who are ready to get past fear and self-doubt and live life joyfully and abundantly, head over to Midlife Mavericks: Fabulous, Fierce, Females!

 

 

 

Let’s agree that marriage isn’t easy.  It’s a lesson in compromise, trust, patience, and perseverance.  I’m not sure if most people really consider their marriage vows – in sickness and in health, for richer or for poorer.

My marriage to my second husband tested this to its limits.

I met Greg on Match.com and we were a success story. He lived in the town nearby, was handsome, a devoted dad, an athlete and above all kind.  It wasn’t love at first sight but we both quickly knew that this was something incredible.

At the time we met I had three little kids, one with intellectual disabilities. My dad was declining with Alzheimer’s and I was working non-stop to stay financially afloat after a long, drawn-out divorce. My life was chaotic and busy. This was definitely not the time for something serious. Yet here this man came along with a calm, steady presence.  His kids and my kids hit it off immediately and they all accepted and supported my son with disabilities.  It truly felt like we completed each other.

At that time Greg was a highly competitive golfer (a former pro), had played hockey in college and had been invited to try out for the 1980 U.S. Olympic Hockey “dream team.” He worked out constantly and the beginning of our relationship was filled with dates that included hiking or other outdoor activities.

The only issue had been what doctors had diagnosed as Lyme Disease that seemed to flare up occasionally.  He also had surgery on his leg which led to drop foot as he was recovering.  The first sign he realized something else was going on was when the drop foot started occurring on his good leg and several times he tripped while walking.  He knew before any doctor that something wasn’t right.

By this time, we were engaged and happily planning our future as a blended family.  And then the day came where he sat me down and said he had been doing research.  “Alison, I think I have Multiple Sclerosis.” While I dismissed his worry and told him that couldn’t possibly be the case, inside I was freaking out.  A good friend of the family growing up had M.S. and I had watched his horrible decline and eventual death. This couldn’t be happening!

Getting a diagnosis of MS is a long process filled with MRI’s and spinal taps.  We continued on with our wedding plans and life in general, but we could see things were happening.  The evening before our wedding we hosted a dinner in a vineyard and took pictures walking around the property.  Within 20 minutes of walking, Greg could barely stand and was dragging his legs.  He said if felt as if his legs were blocks of cement that he needed to move.  The morning of our wedding, as I was getting ready, he went to play golf with his friends.  It was the last round of golf he would play for several years.

Four weeks after we were married, as I was driving home from a meeting, Greg called me.  He heard back from the doctors – he was officially diagnosed with Primary Progressive MS (PPMS.)  PPMS is different than regular MS.  Usually with MS you have “flare ups” – some good times, some bad times.  With PPMS, there are no good times, it’s a rapid decline.  As his doctor said, it’s like a herd of horses galloping out of control through your body.  It’s rare and there are no drugs or therapy.

He rapidly declined from walking with a cane, to a walker and finally to a wheelchair.  He also was no longer able to work. His rage and anger at his body betraying him was evident and his depression was understandable.

At the same time, I was grieving the life I had envisioned and dealing with the fear of being a full-time caregiver and sole provider for my family.  I was sad for the things we would never be able to do as a couple – the hikes, bike rides and adventure trips once the kids were grown.  I also quickly learned how many other things you can’t do when you’re in a powerchair full time, like visit the homes of your friends who have stairs leading to their home and bathrooms that aren’t large enough for his powerchair.  Spontaneity doesn’t exist as you need to consider every restaurant, concert venue, outdoor park and plane trips are massively challenging.

This definitely was not what I had in mind and I admit to indulging in  a self-pity party several times.  It would have been easy to allow myself to fall into the role of victim.  After all, this wasn’t my first life-changing tragedy.  In 1997 my first son died of Sudden Infant Death Syndrome.

But allowing ourselves to be a victim traps us. It prevents us from moving forward with our life and keeps us in a cycle of fear, anger, and self-loathing. That doesn’t help anyone and certainly not our selves. You can look at your situation and say, “why me?” or you can realize “why not you?”

You need to recognize that you’re being led down a path. Every joy, triumph, heartache, and failure are leading you to exactly where you’re meant to be to become the best version of yourself and fulfilling your highest purpose.

When you hold on so hard and fast to your vision of the future you don’t allow yourself to be guided by God, the Universe, Spirit. We often have no idea why these things are happening but fighting it is exhausting and leads to misery.  You can either fight the tide or ride the wave.

I loved my husband enough to say “yes” to being a team and dealing with whatever life had in store for us. That meant enjoying one day at a time and not looking too far into the future.  It also meant establishing some ground rules.  I’m a practical person and don’t believe in wallowing.  Problems only remain problems until you find a solution.  I explained to my husband that I would support him in every which way, but  he needed to become the best version of himself he could be.  Maybe he could no longer play golf but that didn’t mean he couldn’t teach it.  Maybe there was something else he was also meant to do.  Whatever it is, he was not allowed to curl up and quit life.

And, I needed to also live my life.  While I couldn’t go hiking with him that didn’t mean I couldn’t hike with my girlfriends or take trips with them.  And even though I would be his caregiver in certain ways, I needed him to be mine in others.  All my life I believed that I wanted someone to take care of me.  In many instances the Universe kept trying to show me that wasn’t the case, but I thought I knew better.  I now realized that I had to redefine what that meant in my head – “being taken care of.”  What that truly meant was a man who was emotionally wealthy – who provided a strong loving presence, who supported and encouraged me to follow my vision for myself.

I also came to understand that there was another reason we were brought together.  My son has an intellectual disability, so he needs help with decision making.  My husband needs support physically.  The two men in my life have formed an amazing bond, helping each other in a way that’s incredibly special.

It took a good deal of time for Greg to get to a place of acceptance and even happiness.  It started when he discovered an amazing device, the Paramobile.  It’s a golf-cart like machine that Greg is strapped into that he can drive around the course.  When he gets to the tee it raises him up to a standing position so he can swing.  This finally allowed him to play the game he loved once again.  From there, he began teaching military vets, stroke victims and people with intellectual disabilities how to play golf. He now sits on the Board of the Stand Up and Play Foundation which donates Paramobiles to individuals.  He readily admits that he feels more inspired and fulfilled doing this work than he ever did before M.S.

Our marriage is a strong partnership.  We have come a long way over 10 years.  We have now taken trips to Mexico, we’ve found hiking trails that accommodate wheelchairs and have many dinner parties at our house with friends whose homes are inaccessible. Greg does chair yoga and modified boxing in addition to golf with his friends and he’s now teaching my daughter how to play. I watch Greg every day live a fulfilled life. Some days are exhausting – that’s OK.  Most importantly, we have both found our passions and life’s work.  I now coach women in midlife who want to get past fear and tragedy to live a life of personal happiness and professional success.

There are no guarantees how our lives will evolve. When women tell me that they want to meet a man who is athletic or has a certain amount of money I remind them that those things can be gone in an instant. Who is the person that’s left?

There are times when Greg asks me if I’m OK with who he is.  To be honest, I don’t even see the wheelchair anymore.  I simply see the man I love.  Are there times, like when we’re at a wedding and everyone’s dancing with their partner that I get sad? Sure.  Do I sometimes worry what the future holds? Absolutely. But those moments are few and far between compared to every morning when I see that man I love lying beside me.  I know that together we will figure out whatever comes our way.

 

Are you stressed by all of the demands on your time from family and work? Get my free guide 5 Steps to Create a Chill Life.

If you would like to join a group of supportive women in midlife who are ready to get past fear and self-doubt and live life joyfully and abundantly, head over to Midlife Mavericks: Fabulous, Fierce, Females!

 

 

 

 

 

 

 

For those of you who follow my blog you know that my 22-year-old son Spencer is Intellectually Disabled and my husband Greg has Primary Progressive MS and is confined to a power chair. For those of you who aren’t familiar with my story, Greg is my second husband and was only diagnosed 4 weeks after our wedding. He went from walking at our wedding to being immobile within 3 years. I can’t count how many times in my life I’ve heard the words “I could never deal with everything you do.”

Caring for two people with disabilities isn’t always easy but loving them is.

First I’ll share the hard parts. There are so many everyday things that you take for granted when you are able-bodied – dancing at weddings, going on a hike in the woods, visiting friends whose homes aren’t wheelchair accessible, spontaneously planning a weekend getaway. These are all things we can’t do together, and it definitely makes me sad. And yes, sometimes I get cranky when I have to do the majority of the work around the house and work full time.

As a mom it hurt as I watched other kids Spencer’s age get their driver’s license, graduate high school then college and fall in love for the first time.

But the one thing that truly terrifies me is what happens after I die to Spencer and Greg if I were to die before him? The profound weight I feel being completely responsible for two people I love is at times overwhelming.

It’s difficult for people who have able-bodied, neuro-typical loved ones to fully comprehend how hard it can be. I get that. Prior to my life as a caregiver I didn’t either.

Does this sound tough?

I won’t lie – it is. But here’s the amazing side of my life with Greg and Spencer.

Greg is my hero. He has not allowed his disability to define him. Prior to his diagnosis he was a pro-golfer. Today he is on the board of the Stand Up and Play Foundation, an organization that donates specially designed golf carts to courses around the country. The Paramobile allows people with disabilities and spinal cord injuries to play golf and other sporting activities. Greg now teaches the game he loves to stroke victims, military vets and others with intellectual and physical disabilities. He also keeps himself in shape by daily chair yoga sessions and working out on the Myocycle, a device that uses functional electrical stimulation (FES) to help people with muscle weakness or paralysis to exercise by pedaling a stationary bike.

Even more than his commitment to be his best self and desire to help others is his unwavering determination not to be a burden to me. It is a rare day when Greg complains about his disability, even though he has every right to.

I sometimes forget how incredibly hard it is for him to manage seemingly easy tasks such as maneuvering his power chair to get a dish from the cabinet or put something in the microwave. I know it upsets him that I have to do many of the tasks around the house that he would prefer to do – mowing the lawn, snow blowing, leaf blowing, even changing light bulbs in ceiling fixtures. I love that he wants to do these things as I also know there are many able-bodied husbands who don’t help around the house even when they can.

One of the greatest challenges for him is getting into bed and I have to help swing his legs up. Until COVID I used to travel a great deal for business and if one of the kids wasn’t around to help him get into bed he’d sleep in his chair. Last month, after my friend passed away from a long battle with cancer I knew that I needed to go away by myself and regroup. Despite this being difficult for Greg, he encouraged me to go, never once complaining.

I know Greg doesn’t believe me, but I don’t see the disability I simply see the man. The guy who always buys me the perfect gift. The man who I enjoy spending time with no matter what we’re doing. The goofy stepfather who makes my kids laugh and has been known as Steppy since the day we got married.

As for Spencer he is hands down the kindest and happiest guy you’ll ever meet. While he can’t drive he takes several walks a day, sometimes to Subway or Dunkin Donuts and other times just around the neighborhood. Everyone knows him and he knows them. He’ll stop and have conversations and tell them what’s going on in his life. My heart melted the day he told me that when he gets a girlfriend he knows that the most important thing is to “respect her and treat her with kindness.” While he might have trouble reading a book he can read a person’s emotions perfectly and when he senses someone is upset he’s the first person to offer comfort. Yup, that’s my son.

My daughters and step-kids love Greg and Spencer unconditionally. They too see beyond the disabilities to the men they are. And in my heart I know that, should anything happen to me, they will be there caring for both of them.

When Greg proposed to me we had no idea this would be our future. When Spencer was born I had no idea I would be caring for him the rest of my life. None of it matters because I love these two men just as they are.

 

Are you stressed by all of the demands on your time from family and work? Get my free guide 5 Steps to Create a Chill Life.

If you would like to join a group of supportive women in midlife who are ready to get past fear and self-doubt and live life joyfully and abundantly, head over to Midlife Mavericks: Fabulous, Fierce, Females!

I’m an avid reader. I usually have several books I’m reading at the same time. One is always my easy night reading, some fiction that doesn’t require me to think. In the morning it’s usually a non-fiction about self-improvement, spirituality or business.

I find myself searching right now for a book that will help me understand my feelings as my friend quickly nears the end of her life due to cancer. It’s not how to deal with grief as she hasn’t passed yet. It’s almost a “how to prepare to miss someone” that I’m looking for.

I’m pretty sure it doesn’t exist.

So often I find myself comparing the end of her life to the beginning of life. When you’re about to have a baby and you’re waiting with excitement and a little trepidation about the birthing process. You prepare the bag for the hospital, decorate the nursery and buy the clothes. But just as there’s no manual for being a parent there’s no manual for grieving. You can read or take a class, but you never know how YOU will feel. Here we are waiting for her death also with trepidation about the process. Her family has made plans and we’ve prepared but I certainly don’t know how I will feel. Each birth is as unique as each death.

I’m so grateful that my friend and I have this time together to say all we want to say and to just be together. And while I know she’s at as good a place mentally as she can be with her imminent passing, there’s definitely fear on her part and anxiousness on mine – waiting for the call or text when she tells me she’s decided the time has come to go to hospice. You see she’s made the decision that she wants to die at hospice not home. She doesn’t want her family having that memory of their home where so many happy ones were made.

I have good friends who check in on me through this process – people who know she’s a close friend and understand that I’m hurting but can’t hurt too much in front of her. It’s almost impossible to explain how I’m feeling because, to be honest, I don’t know how I’m feeling. Right now, I’m numb, waiting for the inevitable grief.

Every morning I wake up wondering if this will be the day she decides it’s time to go to hospice. When my texts go unanswered for too many hours or she tells me she has new pain I worry. It’s the next chapter and almost the final one. I realize that once she goes to hospice the only question left to consider every morning is whether this will be the day she passes. I haven’t allowed myself to think about that yet or how much I will miss her. How her passing has affected me like no other since the passing of my baby at 4 months-old to Sudden Infant Death Syndrome.

It’s ironic that those two deaths have been so different. Connor died with no warning and apparently completely healthy. There was no time to prepare myself emotionally for my world completely crashing around me. It took years for me to even slightly recover.

And now I have just the opposite experience. The opportunity to say goodbye and spend precious time with her. I have the benefit through the loss of my son to understand all too well the grieving process and that while her passing will leave a gaping hole in my life I will at some point smile thinking about her.

How do I prepare for her dying? I don’t. I simply enjoy every minute I have with her right now.

 

Are you stressed by all of the demands on your time from family and work? Get my free guide 5 Steps to Create a Chill Life.

If you would like to join a group of supportive women in midlife who are ready to get past fear and self-doubt and live life joyfully and abundantly, head over to Midlife Mavericks: Fabulous, Fierce, Females!

I only recommend products or services I use personally and believe will add value to my readers. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”  I have been, or can be if you click on a link and make a purchase, compensated via a cash payment, gift, or something else of value for writing this post. Regardless, I only recommend products or services I use personally and believe will be good for my readers.

 

Visiting aging parents during the Thanksgiving holiday can sometimes be a jolting experience.  If it’s been some time since you’ve seen them, the awareness of a decline in health or simply the realization that they’re aging can be not only upsetting but concerning.  It can seem as if overnight memory loss, falls and other health issues need to be addressed and safeguards put in place. If you don’t live near your aging parents (or even if you do) finding products and services that can keep them safe will give you some peace of mind. 

Fortunately, there are many smart devices now on the market that will allow aging relatives to remain independent and safe:

OMRON 10 Series Wireless Upper Arm Blood Pressure Monitor – Monitoring blood pressure on a regular basis is critical for prevention of strokes and heart attacks.  This blood pressure monitor can send unlimited readings for two people wirelessly to a smartphone, so you can help your parents manage their blood pressure and share the results with their physician. The information may help their doctors tweak their drugs and doses more readily than waiting until their next office visit to see if their current medication regimen is working.

Trelawear Medical Alert Pendant

TRELAWARE – This is a great alternative to the clunky white plastic “help I’ve fallen and can’t get up” medical alert pendants. MobileHelp now offers beautiful pieces of jewelry that work with their medical alert systems: with purchase, TRELAWEAR is paired with a mobile device and base station. 

Blending form and function, the new collection was designed for consumers who want a more stylish alternative to a traditional help button.

Pendants are offered in two different shapes (cushion and round), two different finishes (gold-tone and silver-colored), and two center resin stone color choices (black and turquoise).

If a user needs help, they simply press the discreet “T” button on the back of the TRELAWEAR pendant, and the signal is communicated through the MobileHelp base station or mobile device to its 24/7 central monitoring station for emergency dispatch to the user’s location.

Safer Alarms Christmas Ornament

Safer Alarms Christmas Ornament – Christmas tree fires are the deadliest house fires because they ignite so quickly. Frayed wires, placing a tree too close to a heat source or a candle that’s accidentally left burning all night that’s near the tree can all lead to a deadly disaster.  Safer Alarms Christmas ornament is actually a fire detector. Simply hang it on the tree and place the alarm in a common area where it can be heard and your family can get out of the house faster. Even when the ornament melts in the fire the alarm will continue to sound.

Sagely Smart Weekly Pill Organizer

Sagely Smart Weekly Pill Organizer – Medication management is one of the most difficult yet important tasks for aging adults. This pill organizer is large enough to hold big pills such as fish oil, multi-vitamins and has a magnetized base so will keep it stable.  The Push-Through design allows someone to push the pills from the lid into the container to improve loading accuracy and the flexible lids are easy to open and perfect for people with arthritis and other manual dexterity issues. Most importantly, there’s an app so it can remind you when to take your medication.

Jitterbug Smartphone – Many smartphones are too small or complicated for seniors to use.  The Jitterbug is perfect as it has a larger screen, a menu that is easy to navigate and voice typing so seniors can send a text message without needing to key in all the letters.  It also has a front facing speaker so it’s easier to hear.

 

Are you stressed by all of the demands on your time from family and work? Get my free guide 5 Steps to Create a Chill Life.

If you would like to join a group of supportive women in midlife who are ready to get past fear and self-doubt and live life joyfully and abundantly, head over to Midlife Mavericks: Fabulous, Fierce, Females!

 

As a spokesperson for COX Homelife I have the chance to check out so many smart devices that provide accessibility and for seniors to remain in their home.

For more information, visit Cox.com.

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.

 

 

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.