Tag Archives: caregiving

My Mammogram Adventure

The last 10 days have been hell. If you’ve been around here at all, you already know my mother who is in the early late stage of Alzheimer’s disease lives with us and much of what that entails. You probably don’t know that I’m the “responsible party” for my elderly aunt as well.

At 10:30 pm 10 days ago, I got a call from my aunt’s neighbor that she was being taken to the hospital “because her legs gave out.” Well, this is a big long story in itself which I’m not going to go into. Let’s just suffice it to say that there were a number of things wrong, she’s now in rehab for physical therapy for at least a month, maybe longer and this probably serves as the “event” that will take away her independence (i.e., force her into assisted living).

So the last 10 days have been filled with daily trips to the hospital and many trips to her house to take care of her business, phone calls to friends, businesses, and conversations with doctors, nurses and social workers.

Sprinkled in between were my mammogram one day and a stress test and ultrasound for me the next. All standard appointments set up long before my aunt ended up in the hospital. Oh, and of course still taking care of my mom and my kids and trying my best to stay on top of things at work.

The stress was building to be sure. I’m strong, but, really, we all have our limits.

I reached mine yesterday when I got the call that I needed to go back for more images because they saw something on my mammogram that was suspicious and they wanted to take another look. Now, this happened last year. I freaked out a little then, my husband went with me just in case it was bad news, but it turned out to be nothing. So, under normal circumstances, this call would have been no big deal. But, I wasn’t operating under normal circumstances. I was teetering on the edge of keeping it together and this pushed me right over.

I cried and cried and cried. In front of my children (wrong, stupid, wrong, bad mother moment). I reassured them with my words the best I could, but of course the emotion they had witnessed made a bigger impression. My focus went out the window and I cried even more. I was a wreck.

I asked for prayers on Facebook–both my personal profile and my “secret group” that is only for my virtual team of colleagues–it’s our water cooler. More than 30 of my friends commented offering prayers, laughs and encouragement. Two immediately offered to go with me (oh yeah, hubby couldn’t go because he had to take his mom to an important doctor appointment at the same time) and another offered to stay at my house with my mom and kids if I needed it. I was so touched by each and every person! The support was overwhelming.

dinnerMy boss called and asked what I wanted for dinner because it was on her. Later, last night, a colleague sent me an Amazon gift card via email with strict instructions to spend it on something to pamper myself with. I told her I might get spa products or I might end up needing socks to stuff my bras with or scarves to wrap my bald head with, but I was hoping it would go for spa products.

So, this morning, my gal pals showed up and we headed off to the hospital. They had me laughing the whole way!

I asked the mammogram lady (no idea what her job title is…it’s probably not “boob squisher” though) to look and see if I was being called back for the same reason I was last year. Yep. Same side and reason, but different spot. I felt better already!

She did her squishing and I waited while the doctor looked at the pictures.

Hallelujah! Not cancer. A “ridge of dense tissue that looks totally benign.” Did I say “hallelujah?”

So, I told my girlfriends that all was good and we headed off to breakfast with a spring in our steps. Michelle told me her husband had said he was sure it was just a shadow. Thank you, Dr. Todd!

So first to tell the masses. no cancer

Sent a text to my hubby, too. Then called home to reassure my kids. My 16 year old son answered the phone. He was very relieved to hear I was not dying but did say it would be much appreciated if I could go to the grocery store today as we are out of bread, milk and the peanut butter is almost gone. They had applesauce and pudding for breakfast.

Then he said my second son wanted to talk to me. He’s 13 and was also very relieved to hear the good report. I told him to be sure to tell his sisters when they got up that I was OK! He said, “Oh, they’re up. We’re all up. We’re cleaning the house.”

Wait! Did I say I don’t have cancer? The test results aren’t back yet. I’m going to take my friends for breakfast. You keep cleaning!!!

Funniest phone call ever!

So to recap, I was having the week from hell anyway. Then the dreaded mammogram call back and before you know it the whole town was praying for me, two of my friends dropped everything to go to the appointment with me, men around town were talking about my boobs, my boss bought me dinner, my colleague sent me a gift card to pamper myself and MY KIDS CLEANED THE HOUSE!

Well, I’m healthy, and we’re out of food. So, off to the grocery store I go! It was nice while it lasted.

 

 

 

Incontinence Meds: Could they make the situation worse?

If you’ve been following our story, you know that I’ve written about my mom’s incontinence and how really bad it’s been caring for her lately. Things continued to be terrible as it related to keeping her in clean briefs and clothes.

Until recently. Recently, it’s gotten better and the whole thing has me wondering. The following is our experience. I am NOT a doctor and I’m not making any recommendations. What I am doing is posting some food for thought that may prompt discussions with your loved one’s doctor if you are battling incontinence (and I say you because it’s more than just your loved one who’s dealing with it).

ID-100240967We ran out of my mom’s incontinence meds a couple weeks ago and I’ve been too busy to refill them. (Cut me some slack. They aren’t life-saving pills.) Here’s what’s changed over that time–

She is having fewer leaks through her Depends. We were sometimes going through 4 pair of slacks a day and changing her sheets every other day. She is almost never leaking through now.

She has not had a bowel blow-out since she hasn’t been taking the meds. She still soils her brief once in awhile but that is very manageable compared to the weekly explosions we were experiencing.

More often than not, when she’s on the toilet, she pees. Before, I think she would go to the bathroom after she had just gone because nothing was going on once she got there.

She hasn’t argued, fought me, called me a name, cussed or spit at me in the bathroom for several days. Before, she would at the very least call me a bitch two or three times during the changing process.

I don’t have an explanation for any of this other than she isn’t taking the meds. You may recall when I took her to the neurologist in April, I asked for a higher dose of the incontinence meds hoping to get some relief from the awful situation.

I’m not a doctor, but here’s what I know about Oxybutinin: it doesn’t change how much you go, only how often. The point was to spread out the episodes to help me manage it better. Say every 4 hours instead of every 2. I wonder…by going less often, but going more, was it too much at once for the Depends to handle and so she would leak more often?

It can cause constipation. She always has very soft stool. But I wonder…was it bunging her up to the point that she would just explode with no warning?

It crosses the blood-brain barrier and can counteract Namenda (an Alz drug). The last several days she has been more engaged with the family. She sits in the living room with us more often and smiles more often. She’s also less argumentative…in fact, I would say she has not been argumentative at all for days. I wonder…has the Oxybutinin been contributing to her foul mood and withdrawn personality? (Note: She’s no longer on Namenda)

I don’t know if any of this is an actual cause and effect relationship.

But I do know I’ve been praying for relief and even about the idea of working full time so we could afford to put her in a facility. So whether or not the drug has anything to do with it, I do consider it an answered prayer. God is good!

If you’ve had a similar experience with incontinence medications (or the lack of them), I would love to hear from you! Please leave a comment.

 

Photo Credit: FreeDigitalPhotos.Net by Stuart Miles

Free will vs. Responsibility

Being a caregiver is not only a lot of work and a lot of stress, it is a lot of responsibility. Depending on the level of care your loved one needs the responsibility may range from simple medication reminders to complete, round-the-clock-do-everything-for them care.

When you sign on to be a caregiver, you are signing on to fulfill the responsibilities with the patient’s very best interests at heart.

Everyone approaches caregiving differently. Every situation is different. The existing relationship between caregiver and patient, the amount of care needed, the disposition of the patient and much more are all factors that shape the approach. And, no matter how it’s done, it’s difficult. That’s why 99% of the time, I adopt a “Judge not, lest ye be judged” attitude.

medication and dementiaExcept for this: a caregiver of a dementia patient recently told me that whether or not her loved one takes her medication is the patient’s “own free will” because she “can’t force them down her throat” so she sets the meds (and there are many!) out every morning and whether or not the loved one takes them is then up to the loved one and not the caregiver.

Poppycock!

The person with dementia lacks the rational thought, the understanding of the consequences of not taking the meds or the memory to know it must be done. No, she can’t force them down her throat, but she can give them to her and sit with her until she finishes taking them. She may be able to crush them into her food if necessary. There are ways to fulfill this responsibility to ensure the health and well-being of the patient.

Another of my mantras of caregiving is “Pick your battles.” Is it ok if my mom wants to wear the same shirt for three days? As long as it’s reasonably clean, sure! But when it comes to taking her meds, it’s not up for discussion.

If you’re experiencing difficulty getting your loved one to take his or her medication, check out these articles for tips, and by all means, if you have tips you’d like to share, leave them in the comments!

How to get an Alzheimer’s patient to take their medication

Medication Safety and Alzheimer’s

When Elderly with Dementia Refuse Pills

The Cadillac of Alzheimer’s Patients

The last few weeks have been rough. I.mean.rough!

If you’re an Alzheimer’s caregiver, you know that things will go along pretty steady for awhile, and then suddenly, it’s as though your loved one falls off a cliff and is markedly worse and you find yourself having to navigate another new normal. That’s where we are right now.

Showering has always been an ordeal and a struggle. From start to finish it’s usually at least an hour-long if not afternoon-long undertaking that includes hitting, yelling, cussing and stand-offs. (To be clear–and honest–while my  mom is the primary owner of all of those behaviors, I have been known to participate in all but the hitting.) Since it’s always been an ordeal, we are used to it. We don’t like it, but we deal with it.

Add to that worsening incontinence and more hitting, yelling, cussing and stand-offs when it comes to needing to change the pants. And, don’t forget the additional mounds of laundry and multiple-times-a-day bathroom cleanings that go along with that.

It’s been rough.

That’s why I’d been looking so forward to my mom’s semi-annual trip to the neurologist. She’s much worse than she was on her last visit. She’s lost a great deal of language and is much more weak physically in addition to the aforementioned issues.

I had two goals: The first was a “happy pill” to make her more compliant. I don’t want to turn her into a zombie. She sleeps (or at least lays in her bed) around 20 hours a day as it is. But, I do need her to be less argumentative about these matters of hygiene. Not only for her sake, but for that of the entire family.

The second was an increased dose of her incontinence medicine for obvious reasons.

I knew the doctor was likely to be resistant to both of those requests as both carry side effects that range from constipation to making the dementia worse/progress faster or even death depending on the drug. While decisions like this aren’t easy, it all comes down to quality of life vs. quantity at some point.

Appointment day finally arrived! I was going to make my case and get the help I needed to improve the quality of her life as well as that of the family!

It was going to be a heck of a day. My mom would have to shower, brush her teeth AND get dressed before we left for the appointment. I was gearing up for a big battle.

She didn’t really fight me. She got a little belligerent when I washed her hair, but that was it. As I helped her dress, she pulled her turtleneck sweater over her head and as her face peeked through she looked at me, we smiled at each other and said, “Peek a boo!” at the same time. We both laughed hard at that. As we drove the 45 miles or so to the U of M Turner Geriatric Clinic for her appointment, she was quite observant, reading signs and commenting on the scenery.

I thought to myself, “She’s having a good day.”

When we entered the doctor’s office, I began to paint a picture of just what life is like dealing with the incontinence and the combativeness. I told the doctor that I would describe my mom as nearly completely incontinent of bladder. It was just about that time that my mom spoke up and said, “I need to go to the bathroom.” Humph.

Upon returning from the bathroom, the doctor began to give her the mini-mental.

Question 1: What’s your birthday? She always knows that and she got it.

Question 2: What year is it? She had no idea–she never does. The doctor said, “It’s two-thousand something. Can you guess what it might be?” My mom replied, “2014.”

Before the next question, my mom asked the doctor, “Is your name Dr. Heidebrink?” At which point I burst out laughing! How in the heck did she know that? She hasn’t seen her for 9 months! It’s not as though her name is “Dr. Smith” afterall!

Question 3: What month is it? May. It’s ALWAYS May because her birthday is in May. Doesn’t matter who asks or when, it’s May. Not yesterday. Yesterday it was March!!

Question 4: What season is it? Let’s see…she was wearing winter clothes, a winter coat and there was snow on the ground when she went outside. Yup! SPRING! Not even 24 hours into spring but it was spring! In the four years she’s been getting the mini-mental I don’t think she’s ever gotten that one right before.

UNBELIEVABLE!

cadillacShe actually ended up scoring two points higher on the test this time than she did 9 months ago. It was like taking your car to the mechanic and all the dings and rattles suddenly stop!

Sometimes, it’s easy to forget that from the doctor’s perspective, it’s actually my mom that’s the patient and not me or the rest of the members of our household. Getting the meds I was asking for was not looking good at this point.

Then I just really put it out there about how her behavior is impacting the family and the care-giving situation and that all of this stress can’t be good for her either. The end result was a low-dose anti-anxiety pill and an increased dosage of incontinence meds. I’m very hopeful that the anti-anxiety med will do the trick. Honestly, the only time she is combative is when it comes to hygiene and everything about hygiene takes place in the bathroom–a room it is obvious makes her very nervous. I can’t know which came first–the anxiety over the bathroom which makes her resist the hygiene tasks, or the resistance of the hygiene tasks which causes the fear of the bathroom. Either way, this drug could be the answer.

As we left the doctor, I asked my mom what her favorite car is and she said a Cadillac. I told her I was going to start calling her “Cadillac” because she acted just like a car at the mechanic!

Although the timing of her having a good day wasn’t great in terms of the doctor getting a true picture of how she is doing, I sure wish there were more days like yesterday!

 

photo credit: “the most beautiful car in the world” by contemplative imaging

Take care of you.

keep-calm-and-take-care-of-you-13One of my favorite movies of all time is Pretty Woman. Julia Roberts and Laura San Giacomo play friends and roommates who are prostitutes–dangerous work. Whenever they say goodbye to one another, they say the same thing.

“Take care of you.”

I’m not a prostitute.

I’m a wife.

I’m the mother of four young children.

I’m the caregiver of my mother who has Alzheimer’s.

I’m stressed out.

I’m overweight.

I’m tired.

I hear the words over and over in my head. “Take care of you.” “Take care of you.” “Take care of you.”

I hear it at my support group. I read it on some of my favorite blogs and magazines. I see it on TV.

Easier said than done! But I’m learning.

I’ve joined a support group. This is THE single best decision I’ve made along the way. It is a source of information, resources and emotional support. I’ve never missed a meeting!

I’m learning to say, “No.” That’s a tough one for me. I’ve been a people pleaser my whole life. I like to help people. I also like to feel needed. So, when someone asks me to do something, my knee-jerk reaction is to say, “Sure, I’d love to!” In the last year, I’ve scaled back my volunteering. I now focus my efforts on only those things that really bring me true enjoyment. If the activity causes me stress, I don’t do it.

I also cancelled a family reunion I was to host this summer. That was hard for me to do. I love my family and don’t get to see them often. If I put it off, will my mom still be here? Will she still know them? I’ve wanted to cancel it for awhile. But, I kept telling myself not to make the decsion on a day when I was stressed out…but to make it on a day when I’m not. Then it hit me: I’m almost always stressed out!

I’m asking for help. Another tough one. I think  I’m generally thought of as self-reliant and strong. It’s difficult to admit that I can’t do it all.

I write about my feelings. This blog is a great source of therapy for me. If I am able to help anyone along the way, so much the better. I don’t publish everything I write. Some of it is too emotional. Maybe one day I’ll share those writings, but not yet.

What I don’t do is eat right or exercise. The eating thing is really tough. I’m an emotional eater. If I don’t get this under control, I’ll weigh 600 pounds before this caregiving journey is over. Exercise is tough, too. It’s hard to find time for it. But I must! I’m not getting any younger and it’s not going to get any easier!

What do you do to maintain your sanity as a caregiver…whether you’re caring for your kids or an aging loved one–or both, like I am? I’d love to hear from you!

Take care of you!