Caregiver Perspective: Know FMLA’s Benefits but Beware its Challenges

As a working caregiver, I encourage others in my situation to find out about the Family Medical Leave Act (FMLA). With FMLA I know I can take time off I need, and if my employer tries to retaliate for my doing so, I can turn to the protections of that law for support. If you have never heard of FMLA, here are some things you should know.

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Being A Caregiver Can be Viewed the Same as Having the Disability in the Eyes of an Employer

Hello, my name is Donna. I’m a 60-year old wife, mother, grandmother, and primary care-giver for my husband, Lynn, (age 59) who has secondary progressive MS. He has a very aggressive form unfortunately.  I describe him as being a functional paraplegic because he has slight movement and total feeling of all limbs but no function in any of them. Nothing works. He can’t scratch an itch, flick off a fly, reposition his foot, shift his weight in a chair, feed himself, have a bowel movement without assistance, pass his urine without using a catheter, or swallow thin liquids without using a special technique to prevent choking.

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Something’s Different. Something’s Not Right. Listen to Me.

Something’s different.

Don’t you hear that? Don’t you see the difference?

It’s not the same.

Something’s wrong.

Something’s changed.

Trust me, I know. I can tell. It’s not right.

I don’t care that the lab work is normal.

I don’t care that he looks good to you.

I don’t care that you’re an expert in illness.

I am the expert in him.

In our world of daily living.

We are one. I know something’s wrong.

I know his every breath.

I know what every sound means

I know where every pimple, pink spot, dark bruise, or open tear appears.

I know his smells-good and bad.

I know his body temp-good and bad.

I know his moods-good and bad.

I know his changes-good and bad.

Just like an artisan working his craft

I am an artisan of healing in his life.

I know him.

I know what works and what doesn’t.

I know how best to apply healing.

You need my help.

I keep you from making mistakes.

I stop you from assumptions that harm.

I am your partner not your enemy.

Use ME.

Something’s different.  Something’s not right.

Listen.      To.        Me.

Something’s wrong.

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Sorry I Haven’t Been Able to Write Lately

I guess most of you who have read my column in the past think I’ve stopped writing.  I have to admit that I’ve considered whether I should do that because my time to do anything at all these days is so limited but the publishers of this site are so kind and they have asked me to share my stories whenever I get the opportunity so I’ll keep doing so for as long as I can.  Continue reading at:


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What Goes In Must Come Out

One of the joys of having a progressive disease is that everything changes. Just as you adjust to one change, something happens and the “fix” you had in place is no longer working. As Lynn’s caregiver, I have not found his physician to be particularly helpful in warning me about things to come. If I ask about an issue, he will give me a prescription or a referral but he’s not much on home remedies or being proactive on warning on what I might encounter. Therefore, most solutions I come up with are things I stumble across and come up with myself and are not recommendations by doctors so you might want to talk to your doctor before you decide to do anything I mention here.

Now, my take on waste management…

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Realities of Life

For the most part, our home life is fairly stable meaning we have the same things happening day in and day out. We have a routine – I get Lynn up for the morning and help him with his exercise, take him to the bathroom for his bowel regimen, put him back to bed and do a partial bath including skin care, and he takes a nap to recover from that activity. It takes about three hours to do all that. None of it is complex (except sometimes the skin care) but most of it is very physically demanding and Lynn can do nothing to help with it except cooperate with what I do to him. Once this morning routine is completed, the rest of the day is pretty basic attendant type care (assist with eating, getting things to drink, changing position, helping him write, etc.). At night, the work increases again with preparing meals etc., for the next day, bath time, night time rituals, etc. Including my own personal care and feeding, it takes about five hours to get it all done and get us to bed. Again, the work is not complex care; just physical and time consuming. None of this is complicated but all of it is necessary to maintain quality of life that is not miserable every minute of every day till you die so it’s very important stuff. It is also stuff that if you cannot do on your own, is very, very expensive to have someone else do for you unless you are fortunate enough to have family or friends to help you out.

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Did You Miss Me?

Some of you have noticed that I have not been writing for a couple of months because you have sent me messages asking if I was okay. Thank you very much for checking on me. It’s humbling to know there are people that I don’t even know who care about me and lift me up in their prayers. Thank you.

It’s been about two months since I last wrote. During that time I have been in the emergency department three times for abdominal migraine attacks that I could not control at home. I started having attacks of severe abdominal pain in February. Initially the ED staff thought it was appendicitis but that was ruled out on CT. The next time it occurred in March, they thought maybe I had an intestinal infection because they could see two areas of thickening on the CT and my white blood cells were elevated. I was given a course of antibiotics and an anti-fungal (to be on the safe side) and survived the additional trauma of a two week encounter with their side effects. I was feeling pretty good about things when in May it happened again and the ED doctors said they didn’t have a clue what was going on; I should see a gastroenterologist.

It took a while to get a specialist appointment but I saw someone around the first of June. Five minutes into my visit, he said, “You have abdominal migraines.” What in the world is that? I thought to myself. He went on to explain that they are similar to headache migraines; same mechanism of action. There is usually an aura (Yep, I had that), they come on and get progressively worse and then go away with or without treatment (that seemed to be true), and between episodes everything was perfectly normal (Yep, that was true, too). Abdominal migraines usually affect children but can affect adults who have chronic migraines as well (that was me). Great, I now had a diagnosis and a series of medications to try when I had an attack. What I have found so far though is that the medications are either not strong enough or I’m waiting too long to take them. As with every new diagnosis, there is always a learning curve required before you find the right treatment plan.

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