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Posts Tagged ‘MS’

Who is an invisible caregiver?

Millions of spouses, adult children and friends who are caring for someone they love–but having to “do it on the sly.” It’s a tough transition, to admit you need care. After decades of being the strong one, the provider, the professional, the hub of the family, admitting that you need help in and out of the bed, in and out of the car, or down the stairs because of a chronic illness, disease, or after surgery can feel like a blow to the ego.  And it’s not who they are. Call is pride, but there’s a time in a person’s life when they aren’t ready to admit they need care. Their worth goes far beyond their need for help.

I met a gal last week who is caring for her husband, but it’s not a label she gives to herself. He has MS and is in a wheelchair. He’s on disability and yet he strives to see himself as he always was–a competent businessman, father, friend and spouse. He is–all those things–but he needs a little help now and then.

They married last year and their devotion and honeymoon love is obvious. They look at each other with such tenderness. She walked into this relationship eyes open. His disability isn’t what she fell in love with–it’s his charm, his wit, and his generous spirit. But his disability is something they have to work around.

She helps him dress–on difficult days. She makes sure his meds are delivered on time and she helps him sort them and reminds him occasionally (wives tend to do that–some people call it nagging but it’s all in the interpretation). She washes his hair. She works her schedule around his so she can accompany him to doctor visits so she can help manage his care. And since he’s prone to infection, she takes extra care to keep their environment germ-free–and keeps masks available for when they’re out in public during flu season.

The other night, he had a fever and decided to sleep downstairs on the couch. He just didn’t have the strength to head upstairs, change clothes and do his normal bedtime routine. She slept in the recliner next to him and checked on him several times that night–to make sure his fever didn’t spike.

Yes, technically she’s a caregiver. But her husband is a young 50 years old,  and his disease takes such a toll on his life and health that she doesn’t want to see him as needing care. He wants to be seen first as a man. That’s how she chooses to see him as well.

There are times when naming something brings a sense of relief–so that’s what it is. The definition helps define us. And then there are times, as in this gal’s case when it changes the relationship. She’d rather be an “invisible caregiver.” She’d rather consider herself his wife, his companion, his confidant.

Caring for a spouse isn’t a role. It comes with “I do.” All the invisible caregivers out there–spouses, children or friends do it out of love and loyalty. They choose to camouflage the care they give in order to keep the emphasis on the relationship–to give their loved one the dignity and respect they deserve.

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It’s one of those signs adult children start noticing–when their parents begin to shuffle. It usually starts when they’re tired and around their own home because they’re relaxed. As a caregiver, you worry they’ll fall, trip on a rug, or get tangled in their own feet. Is it something to be concerned about?

Yes. Shuffling can not only cause them to fall, but it may be a sign of something else–such as Parkinson’s or some other neurological disorder that’s not allowing the brain and the legs to work together. In fact, there are many diseases that can effect our ability to walk.

When people think of Parkinson’s, they immediately go to the “shaking” visual in their mind. They may “see” Michael J. Fox shaking, fidgeting, moving uncontrollably when he’s being interviewed and chooses to let the world see what “P.D” is like without medications.

But one of the most tell-tale signs of Parkinson’s is rigidity. The brain isn’t producing enough Dopamine, and without that chemical, the electrical connections of the brain and muscles misfires, or doesn’t fire enough. The body becomes rigid.

Does your loved one get up to start to walk somewhere and starts out unusually fast and then starts to lean forward a bit–and you’re afraid they’re going to topple over?

Does your loved one veer to one side when walking? Is one side of the leg and/or body cave in a bit more than the other?

Does your loved one take a few steps and then pause and can’t seem to get moving again? Have you ever noticed that this happens in doorways and when the flooring changes from say, carpet to tile?

These were some of the things I noticed about my mom–that and the shuffling. So we went to see a neurologist. There don’t really give them blood tests or even do a CT scan or MRI to determine Parkinson’s. Our neurologist (my mother’s, but I claim him too–he was a great guy who sadly died too soon) simply asked my mom to walk down the hall outside the waiting room.

The doctor, the nurse, and I watched my mother walk. She was nervous, made excuses, called for me to come help her–but the doctor gently insisted she try.

The doctor prescribed her Sinemet, and we visited him every six months. The medication helped tremendously in terms of allowing my mother to walk and not pause, to not shake as much, but it didn’t make the shuffling go away.

If your loved one doesn’t have Parkinson’s, is there a way to help them not shuffle?

Yes–but it probably won’t make it completely go away. It’s kind of like trying to keep your cat off the kitchen counter–the best that you can hope for and aim for is that the cat doesn’t do this in your presence!

You can remind them–gently and with patience.

You can ask for six weeks of physical therapy (oftentimes they come to your house and your insurance will pay for it if your doctor recommends).

You can attend physical therapy with them, take notes and continue on your own.

There are other diseases that include the symptom of shuffling–MS, ALS, fibromyalgia, arthritis, high or low blood pressure, Alzheimer’s…the list goes on. If the shuffling gets worse, insist that your doctors get to the root cause. Symptoms allow us to ask questions and seek solutions.

Don’t rule out that even though there’s no official diagnosis–there still might be one in the future. I truly believe that as a family member who cares, who pays attention–probably picks up on little clues that occur months or even years before the medical community diagnoses it.

Be sure not to “blame” your loved one or get fussy with them. They truly can’t help this. Face it, just being tired can make me shuffle–I can’t imagine how tired I’ll be 30 years from now!

The bottom line is, shuffling is a symptom, and it could mean something pretty serious–and if you find out what that is, you may be able to help your loved one get the medications and treatments that will help make their life easier. As a daughter, son, spouse, friend and caregiver, it’s our job to be their advocate–to speak up for them when they can’t.

If your loved one is shuffling–be extra aware of throw rugs, table legs, clutter, step-ups and downs. Help them with respect and kindness because hey, we’re all just a shuffle away.

Carol D. O’Dell

 

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

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Today, the Today Show had a six-year old little girl on their show who is a singing sensation. She can belt out the national anthem with a voice to rival Ethyl Merman. Natalie Morales introduced her and said that the little girl also lives with autism.

Words are important. Autism cannot be viewed as a death sentence–especially not for a child who has their whole life ahead.

Living with or suffering with makes a big difference.

If you have Parkinson’s, Alzheimer’s, MS, or cancer, you have to eventually come to choice–do you choose to live or suffer?

Personally, I hope to never say the word, “suffer” again. I don’t want to suffer with anything!

Suffering implies pain, sorrow, heavy burden…agony. And yes, there are moments, days, even months where pain and sorrow overwhelms life–but as my very religious, very southern mother used to say when asked how she was, she’d reply…

“Well…I don’t want the devil to hear me!”

She didn’t want to entomb herself in negativity.

Caregivers, how do you talk about your role? Begin to observe your words.

How do you introduce yourself?

“I’m just a caregiver?”

“I’m just caring for my mom?”

Really? Just a caregiver? That’s like saying you’re just the president of the United Stats, just a mom, just a CIA assasin!

Even if you are at home with your loved one, or even living with them. You can introduce yourself any way you like–”I’m an artist, I’m a teacher (even if you’re not in a classroom now, do you ever stop teaching? I’m in school (are you taking an online class? That counts.”

If you introduce yourself as a caregiver, then do it with pride.

But also introduce the fact that you’re a daughter, a wife, a friend. Your role as a caregiver is admirable, but your loved one needs to hear you say that you’ll always be their daughter/sister/spouse first.

How will anyone respect you and perceive what you do as important if you don’t?

Choose. Choose your words. Choose to care for your loved one.

No one is making you be a caregiver. You may think they are. You may believe that you have to, that your loved one has no one else, that it’s your responsibility…but realize that it is a choice. Other people in your same situation have said no. The world will not end. Is it the right thing to do? To say no? Every family is differentt, and my point is that you choose.

If you choose caregiving–part-time, full-time, in your home, their home, as a working caregiver, or an advocate for your loved one who is in a care facility–whatever the living/working arrangment is–choose. Caregiving is a part of who you are, it’s a role, what you do with your time and energy.

Take the helplessness, choice-lesness out of your vocalbulary.

~I’m Carol D. O’Dell, and I hope you’ll check out my book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

It’s available on Amazon, other online stores and in bookstores. Kunati Publishing

I’m a family advisor on Caring.com, and my syndicated blog appears on www.opentohope.com.

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