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secondary progressive MS

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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Struggles with Skin Care

I am obsessed with Lynn’s skin. Many years ago I worked as a home health nurse and I saw some terrible bed sores that started out small and then progressed to craters. Some of the patients had their entire backsides destroyed. Most of the breakdown, I expect, was due to inattention but some was also due to poor nutrition and just the disease process the person had.
With progressive MS, secondary or primary, the person often is in a wheelchair or in bed most of the time. In either situation, the person’s ability to shift their position is very limited or maybe non-existent.
continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-struggles-with-skin-care/

Letting Go of Unrealistic Plans

Lynn and I had to make a very difficult decision this week– whether to cancel our summer vacation or to go as planned.  Now, on the surface that might not sound like such a big deal, but it was.  Since the children were small, we have been going to the beach in North Carolina for a week during the summer.  It’s the only type of vacation we take all year. Now that the children are grown with families of their own, we still invite them as our guests to spend the week with us at the beach.  It’s a great way to reconnect and create memories to look back on during the cold winter months.  Over the past two years we have also included both my parents and Lynn’s mom (all in or near their 80’s).  Both of us love the beach and the family time and we had traditions of fishing trips, play time in the pool, and lots of grilling outside.  However, Lynn’s secondary progressive MS has changed all that.
Trips to the beach over the past ten years have been difficult for Lynn.  He doesn’t tolerate heat well so we tried a cool vest – didn’t work, and we tried early morning fishing –took too long to get him ready to go so by the time we got there, it was already starting to heat up.  We rigged ways for him to hold his rod to fish but though he could hold it for a few minutes, his spasticity prevented him from having a good grip or being able to reel in anything that might nibble at his bait so it really took the joy out of fishing.  Plus there was the issue of needing to intermittently cath him every hour or so…  The result was—no fishing. For a couple of years we took fishing gear just in case but last year we didn’t even do that.
We tried borrowing a floating wheelchair so Lynn could get into the ocean.  That was fun… for about the first five minutes.  It took three of us to stabilize the chair in when the surf rolled in so he wouldn’t flip over.  He and the rest of us got beat to death by fighting the waves so we tried just sitting him on the beach.  (Don’t worry; he had a life jacket on.) He, of course, could not get away from unexpectedly higher waves so he got whipped by that process too; not to mention the fun of trying to lift him from the ground up to a floating wheelchair as the sand shifted out from under us every few seconds.  We decided not to do that again.
Last year we found a really nice house that was handicap accessible.  I was so excited.  It thought, “This is it! The solution to our vacation woes”. It had ramps, an elevator, a roll in shower, handrails on the wall, and most importantly a ramp into a pool.  It seemed like the perfect solution except the room designed for the disabled person to use was the smallest room in the house and was filled with furniture.  As any of you know who have traveled with someone disabled, lots of equipment and supplies are necessary for ongoing care.  Therefore, this room just didn’t meet our needs.  We tried re-arranging the furniture so he could get his power chair in and out easier but we were warned not to do that again next year.  We also thought about using the larger downstairs bedroom but were told we could not do that either because his wheelchair would damage the carpet.  Okay, all the added restrictions and challenges were starting to make the place less desirable; then, I found out we could not have a late check out this year.  That was the straw that broke this camel’s back.  It takes three hours to get Lynn ready for the day.  With a 10 a.m. checkout, that meant a 7:00 a.m. get up time if we did nothing but get him ready to go but when checking out, you have to do the packing, straightening up, throwing away food, etc. which takes at least 2 if not three hours when you have 7 people using the house.  And while they all pitched in to take care of their own things, I still had all our packaging and packing to do to get us out the door because everyone else was busy with their own. With a five hour drive home, getting up six hours before 10 was just too much for me to accept.
So we are canceling our vacation.
Continue reading at http://multiplesclerosis.net/blog/caregiver-perspective-letting-go-of-unrealistic-plans/

Am I Competent to Do This Job?

I earn a living by working in a hospital in the department of Human Resources.  Hospitals are heavily regulated and one of the most stringent agencies who monitor us is The Joint Commission. One of the standards they have for human resources is that it’s our responsibility to determine if the people we hire are competent enough to safely do their jobs. I won’t bore you with the details on how that’s done but in working on a project related to competency determination today, I thought about what competencies are required to be a family caregiver.  It’s not an easy job but for some reason insurance carriers and the government seems to believe that any family member should be able to be a caregiver.
Just before my father-in-law died last month, I was attempting to assist my mother-in-law in finding someone who could take care of him if he was discharged to hospice care.  We discovered that once a person is deemed not to be able to improve but instead just needs comfort care or maintenance care that Medicare and insurance companies no longer pay for help regardless of the health and well-being of the family member responsible for his care.  My mother-in-law is near 80 and has myasthenia gravis, a neurological condition that makes all her muscles very weak.  She cannot lift or move anything more than a few pounds in weight.  There was no way that she could provide care for her spouse; however, that factor was not considered by insurance and she was unable to get any type of financial assistance to bring someone in to care for him or to place him in a skilled care facility.  Why? Because insurance said he did not need skilled care; just palliative care.
I’ve found the same is true for someone who is totally disabled and cannot improve their health, like Lynn.  His MS has progressed to secondary progressive and he can do nothing physical for himself; not even scratch an itch. He is an author and writes manuscripts with the use of a verbal command program that writes what he dictates.  It’s slow going but it keeps him productive and fortunately, so far his memory has not been affected by the disease.  With Lynn needing total care and my needing to work full time to pay the bills, I looked for help that we could afford.  I now pay an individual to work six hours a day 2-3 days a week to assist him with typing, feed him, and make sure he has liquids to drink. I provide all the rest of his care.  Am I competent to truly care for him? What type of competencies do I need to keep him safe and healthy? If someone was to apply for my job, what would my job description as a care giver look like?
Caregiver Job Description
continue reading at: http://multiplesclerosis.net/living-with-ms/caregivers-perspective-competent-job/