Monthly Archives: September 2012

September 10, 2012 · 9:51 pm

Tests and more tests

Dad refused to have most of the medical tests that were ordered for him before his dementia set in. I remember begging him to go have the prostate exam done, as he showed multiple symptoms and at the time I thought for sure he had prostate cancer.

I sent cards, I begged him on the phone, all to no avail.

Of course, my diagnosis turned out to be wrong. Cancer would not kill my dad, despite his almost lifelong smoking habit.

The last test I ever saw performed on him was the swallow test at the hospital in Albuquerque. It was about a month before his death. He failed the test miserably. Then came the dreaded feeding tube question. We declined. He was hand fed instead, but I don’t think he actually ate much that last month of his life.

Now Mom is the one that faces test after test after test, to keep track of her cancer. It is daunting, keeping all of the doctor’s appointments straight. There are people out there, too many poor souls no doubt, that have to manage all of this on their own. No one should have to do that, while trying to recover from surgery and get stronger.

The trepidation behind the tests are two-fold. Not only is there fear and anxiety of taking so many tests, but there is the fear of the results of the tests.

All a caregiver can do is to try to be a supportive secretary, by setting the appointments, helping to navigate the logistics and offering moral support.

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September 9, 2012 · 7:27 pm

Losing confidence as you grow older

One of the earlier signs of dementia is when a person loses the ability to do tasks that were very simple for them before. For Dad, this included things like ordering at a fast food restaurant or making correct change at the grocery store. He would accuse the clerks of trying to rip him off, when handing them a $10 bill for something that cost $15.

Mom doesn’t have dementia (that we know of) but she has been through a major surgery and has had anesthesia for three different procedures. She’s also been away from the routine of her life for two months. Today she wanted to order Pizza Hut and have it delivered to the home, something she had done dozens of times over the last few years. Today she waffled, almost wanting to give up at the thought of the task. I gently pushed her and she ended up doing just fine placing her order, even remembering a tip. 🙂

She also was not happy with the cordless phone I bought. (Her old phone was dead.) I thought it would be safer for her, so she wouldn’t try to move too fast to answer the phone and fall. But instead she thought it was too high-tech. We compromised. I ordered her one of those old-fashioned desk phones for her bedroom and we will place the cordless phone in the kitchen, so if she’s in there and the phone rings, she can answer it easily without having to run through the house.

Of course, you don’t necessarily have to be older to have these moments of uncertainty. I’ve also been away from the routine of my life for two months now, and have nightmares about forgetting the code to my home’s security system!

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September 8, 2012 · 9:35 pm

When parents wear diapers

As I said previously, I’m getting a taste of what Mom went through with Dad. I’m not sure what’s more difficult to bear: when a child has to care for a parent or when a spouse has to care for a spouse (with dementia).

Now Mom asks me whether her diaper needs to be changed. We grow as close as the mother-daughter relationship can when dealing with the colostomy bag.
When you’ve dealt with that, well, you’ve earned your dutiful daughter sticker. 🙂

So far I’m hanging in there, though I do worry the stress of today will catch up with me tomorrow or next week or next month. But if my mom’s cancer or my dad’s Alzheimer’s has taught me anything, it’s to be here today.

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September 7, 2012 · 8:48 pm

Weekend of the unknown

It’s my first weekend as a full-time caregiver. Yikes!

To be fair, Mom is doing pretty darn well on her first full day back at home. She mostly made her meals for herself today, and is getting around the condo just fine.

On the other hand, her INR levels spiked to a somewhat disturbing level today (fun with Coumadin & blood clots) and we had another colostomy bag leakage. So yes, ups and downs, but I’m used to that by now.

But now, I get a taste of what Mom went through as caregiver to Dad for those last few years of his life. Even though my mom has lost a bit of her mental sharpness, it is so much easier to be a caregiver for someone who can and wants to follow instructions. I can only begin to imagine what Mom had to endure with Dad, who was non-compliant due to his dementia.

That’s not to say that Mom’s motor-mouth and other quirks don’t drive me a little crazy. They do. But then they always have. And that’s the key. Mom’s been through a lot physically, but she’s still Mom emotionally and mentally. With Dad, we lost him mentally more than physically at first. I think as a society we are more equipped to deal with the crumbling of the physical body versus the disintegration of the mind as we grow older.

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September 6, 2012 · 8:01 pm

A parent comes home

Well, Mom is home. There were times when I thought I would never write those words. We have been through so much in these past two months.

Dad was never able to come home, but then, with his dementia, home was lost to him. It was lost to Mom as well for awhile, but happily she seems comfortable being back at home.

Of course, I know more dark clouds probably lurk on the horizon. Is there still cancer in my Mom’s body? That’s the next bridge we have to cross.

But today was a good day. And that’s what matters the most.

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September 5, 2012 · 7:02 pm

Giving up the little things at the nursing home

Today, my mom and her roommate were complaining about some of the things that were not being done around the nursing home. The complaints didn’t involve serious infractions, but it did make me think about how little control you have once you have to check into a nursing home.

Both Mom and the roommate said their bedsheets hadn’t been changed in two weeks. With my mom’s colostomy accidents, I would think you would need to be changing the sheets much more frequently. They also did not receive a fresh set of towels for the past two days. Again, little things, but both of these women are with it enough to want to maintain good hygiene, so it’s a shame to see their efforts thwarted by a shortage of clean supplies.

In the dining hall, I saw a woman in a wheelchair struggle to pick up her napkin, which had fallen on the floor. She almost fell out of her wheelchair trying to get it! I was about to get up to help her but then I saw an aide come to her table. But she ignored the poor old woman, assisted someone else, and left. Her tablemate noticed her struggling and helped her get her napkin.

I don’t blame the staff members, they are so busy trying to hand out the correct meals, then feed the many who can’t feed themselves. A dropped napkin is obviously not a priority.

But it goes back to dignity. And though ideally the nursing home is about restoring your health, which can boost your self-esteem, it also can be a place that kills your spirit.

Luckily, I’ve been able to help Mom out with some of the stuff she has needed. But I think about my father at the nursing home, and those long hours and days alone, when his needs may have been ignored as well. Not intentionally, but just as a side effect of being short staffed and my dad being a very quiet guy with dementia.

So many of the elderly’s struggles go unseen and unheard within the walls of the nursing home. While of course it’s depressing, I’m glad I’ve had the opportunity to witness the good and the bad of elder care firsthand.

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September 4, 2012 · 8:44 pm

Things to think about when you get older

After seeing Mom today at the nursing home here in Roswell, I was waiting for the bus which was running late as usual. An elderly lady came up and set down with me. She would peer over her book periodically to see if the bus was coming. Finally, she sighed and said, “Well I was going to catch a movie today but now I’m not going to make it.” She wished me a nice day and shuffled back down the sidewalk. It was 100 degrees outside.

Sure, she could have called for a cab but they are really pricey in this town.

It’s too bad that a town with such a large elderly population doesn’t have a better transit system. Even the small town my parents retired to has a more reliable, door-to-door shuttle that only costs $1 each way. Each year, the transit system there has to fight to keep their government funding, because local politicians don’t want to throw a few dollars their way. It’s a clean, reliable service and is a lot cheaper than the town’s cab service. There’s also a sizeable elderly population and a lot of tourists.

Anyways, the poor old lady who just wanted to see a movie made me think about how important it is to think about things like transit options as you grow older. Luckily, my parents had options when Dad had to give up driving due to his dementia. It’s important to have these resources so that you can still get out and enjoy yourself, even if it’s just a trip to a movie theatre or local restaurant.

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September 3, 2012 · 7:59 pm

Dad sweetens up my morning

Of course, I’m way too young to remember this memory, but one of Mom’s more fond memories of Dad and I was when he would come in to my room in the morning and put honey on my pacifier. He would keep me entertained while Mom tried to get a few more minutes of sleep. (Or maybe just some much needed alone time.)

Now honey is not recommended for babies under age 1, due to botulism concerns. In the 1970’s, parents had to wing it more, having less access to information. Fortunately, I survived. 🙂

Dad would also sing to me. I think his baby duties centered more on keeping the baby happy than doing the dirty work, but Mom seemed okay with that.

And even though it is not a memory that I can remember, all of those special moments help shape us, and make us who we are when we grow up.

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September 2, 2012 · 8:49 pm

Another ER visit

I never was with Dad on any of his emergency room visits. By the time I flew in from Atlanta (if my presence was recommended), he was already in ICU. Dad had several ER visits in the last year of his life, while he lived in the care center. None of these trips involved Mom or I being by his side. He would fall or have some other minor issue, and the nursing home would send him to the ER, then pick him up when he was discharged.

Today, Mom was sent to the ER for what turned out to be yet another blood clot. (That would be #3 if you are keeping track. I know I am.) Luckily, Mom still has most of her mental capabilities and knows why she was brought to the hospital. She can interact and joke with the staff. No one enjoys visits to the ER, but Mom can maintain her good spirits throughout the ordeal.

But I thought about Dad today, and all of those ER visits when he was in the latter stages of Alzheimer’s. Was he frightened? He was no doubt disoriented. He could name some of the staff members at the care center, the ones he liked the most. (Well, he would get close enough to their names, say Ronnie for Ricky.) All of a sudden, he was whisked away to a new place with new people. Perhaps it didn’t faze him that much at all. It’s just one of those things I’ll never know.

I’ll also never know the degree of loneliness that Dad felt, if he felt any at all. The emergency room is a lonely place to be, and you usually have plenty of time to sit around and think about it, as long waits are legendary. Did Dad yearn for human companionship of some sort, even if he couldn’t remember his family any more? I don’t know.

But I am glad I made the decision to be with my mom now.

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September 1, 2012 · 7:12 pm

Dad a proud Teamster

Since it’s Labor Day weekend, I thought it would be appropriate to post something related to Dad’s long relationship with the Teamsters. Dad was a proud union member for most of his adult life. And Dad certainly served the Teamsters well, by being so loyal, dependable and hard-working.

So it was not much of a surprise that he had kept every one of his union due receipts from over the years. In the middle of all of those yellowed receipts, I came across his Teamsters identification card.

When I think about Dad and the things he most closely identified with, being Irish and being a Teamster certainly rise to the top.

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