So, after 14 months…….

I will make this brief because it’s too much about me! Fourteen months ago I began writing a book about my experiences as a primary caregiver.  I had heard from four friends that I should do this, and even as dense as I can be sometimes, I thought, “Maybe I should do this.”

The kind folks at New Dominion Bookshop are giving me space and time next Friday, March 29th, between 7-8 pm to chat a little about the book and sign copies.

Y’all are invited.

Which came first? Balance or Dementia?

I received a note from a caregiver whose husband has dementia and has balance issues.  Even after his diagnosis of vascular dementia, my LO did not have balance issues.  His neuropsychologist cautioned me to keep him off horses (that was a real challenge), ladders and anything else which might lead to head injury.

But, his balance issues developed after his stroke which occurred three years after the diagnosis.  He did not suffer any paralysis. It just became obvious that his gate changed. He walked more slowly and planted each foot firmly as he plodded on.  He also began using the handrails on stairs.

I have read, however, that balance issues may be a warning sign of onset dementia.

So, it is possible that balance problems lead to dementia and vice-versa.

For the caregiver this means you will need to look around your living quarters to make sure there aren’t tripping booby traps.  Throw rugs, for example, are a major
no-no.”  You can find lots of “safe house” hints on the Alzheimer’s website, or just Google

something like “preventing trips and falls at home. You’ll get lots of info.

Cabin Fever

I may be a little late writing this one because next week we are supposed to get a break in the weather. But, we still have a cold weekend ahead.

In addition to spending an inordinate amount of time watching TV, you might want to gather up some of those boxes of papers that may have been shoved in a corner in the attic, basement or garage.

A dementia patient is not going to have much interest in helping with the tax returns, but reviewing a box of old papers and pictures is a nice way to pass the time.  I have found that we had a lot of duplicates in papers, and pictures. And, a lot of what my LO had stashed away no longer interested him at all.  So, I got to do some serious editing, while unearthing some treasures!

One of the boxes we went through contained his college diploma!

I don’t know if this is correct, but I think the opposite of “saver” is “thrower-awayer.”

Peace in the cabin!

 

The Caregiver blows a gasket even before the colonoscopy!

We have to have to have a colonoscopy after the age of 50, and, if you are healthy, a total of three of these tests in your lifetime.  So, I am a little late with the last one.  Yes, care givers have to be sure they are in good shape and should get all the requisite tests! I know!

I made an appointment with a lab. Names will not be used. Given the nature of the procedure I don’t want the practitioner to have bad feelings about me.

Made the appointment and was told a prescription would be sent to my pharmacy. And, I was told if it turned out the prescription was expensive, I was to call the lab back and they would work something out. I thought that was a bit odd, as I didn’t remember having any prescription prep meds for the other two procedures. But, I am a caregiver so other things took up my brain space.

When the prescription was ready I went to the pharmacy to pick it up. I was astonished.

Pharmacist:  That will be 94-dollars.

Me: Say whaaaa?!!! What about my insurance?

Phar:  It’s not covered.

Me: Okay, well then I decline the offer.

Next business day or two I called the lab.  I ask why I have to have a 94-dollar prep med.

Lab Lady:  Our doctor prefers this brand of prep med.

Me: Then your doctor can pay the $94, because I didn’t pay $94 for the previous 2 prep meds and I sure am not going to pay it now.

Lab Lady:  Well, we sometimes have samples. So I could check to see if we have samples and get back to you.

Me: I don’t want a sample. That’s not the point. If you give me the sample, then the next guy who really, really, really can’t afford $94 will not be able to get a sample.  Why is it that for 99-cents each I can buy a couple of bottles of magnesium sulfate, like I did for the past 2 procedures. Where did this 94 dollar stuff come from?

Lab Lady: Oh, well that has been taken  off the market because people with eating disorders were abusing it.

Me: So, instead of putting the magnesium sulfate behind the counter and making people sign for it like you do for Claritin , or by making  magnesium sulfate an inexpensive prescription, it just gets taken off the market.  And then. the crafty pharmaceutical companies come up with a much “better” product for $94. right?

Lab Lady: well, we do have a coupon for the $94 med. It came with your prep procedure packet.

Me: How much is the coupon worth?

Lab Lady: I don’t know.

Me: It came from your office. Who does know its worth?

Lab lady: You’ have to call the company.

I called the Rx company and believe it or not, no one at the company that produces the coupon knew how much the coupon was worth.  A call to the pharmacy resulted in finding out that if I used the coupon, the price went up to $109. Neither the pharmacist or anyone else on earth can figure out why.

Out of the blue a third Lab Lady called me. I went through the whole story.

Lab Lady #3:  I am so sorry about your trouble. There is another prep med.

Me: You are the 3rd person I have talked to from the lab, and no one had any suggestions for a less expensive alternative.

Lab Lady #3: Oh my. I don’t know why they wouldn’t have told you.

She proceeded to tell me the alternative prep involved an over-the-counter laxative, and a giant bottle of stuff you drink: one 8 ounce glass at a time until you have consumed a liter. More detailed instructions to be sent by mail. I picked up the prescription bottle of stuff and the laxative. (which, by the way, she suggested the name brand when the store brand was less than half the cost).

Total bill: $4.19

The first 2 Lab Ladies called later in the day. I don’t know why, but I told them their colleague just saved me $89.81.  They didn’t really care, and didn’t even pretend to be surprised that magnesium sulfate has NOT been taken off the market. It’s still .99 at a couple of grocery stores. I checked.

What can I say? Ask questions, be your own advocate.  If you have to have a colonoscopy or any test in the near future, shop around.  AND do not doubt for one moment that pharmaceutical companies control health care delivery.

 

New Year’s Eve, Fast Forward

I got a huge laugh from a friend back in the 70’s when I told him I had recorded (taped!) the ball dropping in New York’s Times Square.  Re-running “the moment” was not at all the norm back then.

But, it has been my habit for many years to record whatever show appeals to me on New Year’s Eve. And, miracle of miracles, I can record MORE THAN ONE SHOW! What will they think of next????!!!!

The next morning we have scrambled cheesy eggs, grilled Kielbasa (I think that’s a Pittsburgh thing), hash browns, toast, fruit and coffee and spend a lot of time watching the previous night’s antics.

We celebrate the first day of the New Year, rather celebrate the last day of the old year.

We spend the rest of the day watching dog shows, parades and football games. And we try to eat “good-luck” food from many nations and religions!  Pork, sauerkraut, black-eyed peas, creamed herring, etc.

Even if my LO doesn’t remember all these New Year’s day traditions, I do. And it’s fun “re-introducing” them to him.  Keep your traditions, when possible, make new ones when it’s not!

Happy Almost New Year!

Making spirits bright!

I am hoping that if you are traveling this holiday season, you are there by now!

Holiday celebrations by their very existence, are different.  Different food, different times for meals and lots of different people.

If you are dealing with a dementia patient, who is away from home, these differences in routine might not sit well.  Your LO will be apprehensive meeting and greeting people.  It’s because they are embarrassed at their inability to remember people, or carry on a conversation.  Be sure your LO has a comfortable place to sit, get them a beverage or food, and try to be close by.  They will depend on you more than usual.

Remember the children’s table?  We now have the old folks table! Really.  Stake out an area,  where your LO can be comfortable and watch the activities.  Try to alert other guests to introduce themselves, and explain their relationship to the group. (Hi, I’m Ralph, Nancy’s husband). That works bout 75% of the time.

Buffets are a great way to feed a lot of people. And fixing a plate for your LO and delivering it to their staked out area will make him/her much more comfortable.

Holiday celebrations usually mean everyone stays up later than usual. That probably won’t happen with a dementia patient. When it’s time to leave, it’s time to leave because they are not going to adjust their bedtime!   And there is a limit to what amount of holiday celebrating (confusion) a dementia patient can take.

Give your self and your LO about 3 hours. to mingle, eat and enjoy. Choose which three hours are best. Then pack it up and start fresh tomorrow.

Happy Christmas Eve!

Holiday Lunch!

We were at lunch the other day when I noticed a happy trio of women across the aisle.

I overheard them talking about this lunch being a birthday celebration for the eldest of the three.  The celebrant was 94. She was having a delightful tine.

She did not have dementia, but it gave me an idea:  if you know of someone with dementia, if at all possible, take the person to lunch.  As we all know, we all DO NOT need anymore stuff.  Lunch is an outing and it’s interaction with other folks.  Include the caregiver as well.  Or, if the dementia patient feels comfortable with just you or an another friend, take the patient to lunch and give the caregiver a break. Or take lunch to the patient and let the caregiver go out for lunch.

Your time and attention is the very best  holiday gift.

Cheers!