Tag Archives: elder-care

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.

 

 

 

Laughter: The Caregiver’s Best Medicine

It’s no secret, the role of care-giver is tough. It’s frustrating, maddening and down-right disgusting sometimes. So how do I get through the days? I have a few tools in my arsenal (in no particular order): support group, blogging, prayer, tears, a good stiff drink (sometimes and don’t judge) and…laughter!

Even though much of my mom’s personality is gone, her sense of humor is still very much in tact. Often, when she’s taking her pills, she’ll ask, “What are these for?” When we tell her one is for her memory, a common response from her is to grin and say “Oh, I forgot.”

Laughter Is Best Medicine

There are many times we’ve been able to diffuse a tense situation by cracking a joke.

And there are even more times when finding the humor helps the rest of us deal with it all. Sometimes the situations are just funny and it’s ok to find the humor in them and laugh.

I remember a night about a year ago when we were all watching TV and my mom was holding Sissy, her cat, and petting her. Every couple minutes she would say, She’s a pretty kitty. She’s a calico kitty.”

Every time she said it the words were exactly the same and so was the sing-songy way she said it. After she’s said it at least half a dozen times, my oldest son (14 at the time) said, “We should turn this into a drinking game. Every time she says it, we should all take a drink of coke.”

This absolutely cracked us all up! Now, I’ll admit, as his mother, I’m still a little perplexed as to how he even knew what a drinking game was at 14 because I assure you he had never seen one or participated in one. Yes, I’m sure. But, I digress.

Sure enough, she said it again. We all raised our glasses and said, “Cheers!”

Now, when she gets focused on something and starts to drive us nuts, all one of us has to do is say, “Cheers!” and everyone relaxes.

The best part is, I know my mom would approve. She’s always been one of the funniest people I know. I’ll never forget during the visitation at my dad’s funeral seeing my mom and two of her closest friends, standing near the casket doubled over in laughter. No one remembers what they were laughing at, but boy, it must have been good! And, better yet, it was good for her!

If you’re a caregiver and you’re afraid to laugh because it seems disrespectful, I encourage you to read some of these articles and not just take my word for it.

I’ll leave you with one last thought, from one of my favorite authors:

“From there to here, from here to there, funny things are everywhere.”–Dr. Suess

Share with me! I’d love to hear your funny caregiving stories!

 

No sissies allowed

“Old age is not for sissies.” My mom says it all the time. She’s right.

You know what else is not for sissies? Caregiving.

CaptureIf we are lucky enough to have our parents live well into old age, chances are we will all take on the role of caregiver at some point. Some of us will enter it willingly, others reluctantly. Some will only spend a few months in the role, others may spend years. Getting started is overwhelming. Heck, the whole thing is overwhelming!

When our parents reach the point that they need more than just our physical assistance with tasks they used to do themselves (i.e., yard work, more difficult household chores, etc.), knowing where to start and how to begin is daunting at best. Often, children live in denial because they simply don’t know what to do first. And, if the parent is also in denial and refusing help, the issues are compounded.

I can’t claim to be an expert, but I’ve been on this journey for about five years now. I’ve made mistakes, done a lot of the right things and learned an enormous amount. What follows are some of my best “getting started” tips. And by getting started, I mean BEFORE you’re really needed as a caregiver.

Schedule a family meeting

I’m an only child. If you are, too, you can skip this step. That’s probably the only pass you’re going to get along the care-giving path! For the rest of you, sit down and talk about it! Don’t wait until an event (illness, fall, stroke, etc.) forces the issue. Sit down together when emotions aren’t running high and no one is stressed out by the circumstances and have a frank discussion. Who is willing and able to do what? What plans need to be made about future living arrangements? How will any care be financed? Include your loved ones in the conversation if possible. There is a wealth of information on family meetings on the internet. This is one article I like.

Consult an elder-care attorney

Learn the differences between medical and financial powers of attorney and guardianship. Figure out what is likely to best suit the needs of your situation. This article offers an overview of the difference between POA and guardianship, but each state is likely to have its own nuances. If these documents aren’t already in place, do it! Don’t wait!

Meet your loved one’s doctors

Attend a routine appointment with your loved one. Accompany him or her into the exam room to meet the doctor. Allow your loved one to introduce you and explain you’ll be the caregiver when the time comes. Make sure you are listed on all medical records as someone to whom the provider can release information. HIPPA laws will make it very difficult for you to help your loved one if this is not in place. Further details can be found in this article.

Discuss financial arrangements

Whether you meet with your loved one’s financial advisor, attorney or simply go over documents with your loved one, it’s important to know what assets are available to finance the care of your loved one, where they are held and how to access them when they’re needed. Eldercare.gov offers some tips here.

Explore Resources

Well before the tough decisions need to be made, begin looking for support services such as mobile meals, home care services, area offices on aging, Veteran’s Administration offices, senior centers and more in your local area. I strongly encourage you to find and join a support group for caregivers. This is the best decision I’ve made as a caregiver, bar none! Not only has it given me an outlet to discuss my feelings and talk to others who can relate to what I’m going through, but it has been the greatest source of knowledge and information for all aspects of care-giving.

So, no, caregiving is not for sissies, but, taking these five steps, before your loved ones are in dire need of help will go a long way to ensure that everyone is able to navigate through the process with a sense of peace and it will ease tensions and fears of the unknown for all involved. In this case, ignorance is most surely NOT bliss, but knowledge IS power!

Of course parents aren’t the only people we care for. Often it’s a spouse, a sibling, a child. While I write about my experience, which revolves  around caring for my mom, my aunt, and, to a lesser degree, my mother-in-law, I want to be sure to acknowledge that folks in these other care-giving roles have it just as tough, maybe more-so.

If you’ve already begun navigating the care-giving maze, what is one thing you’re so thankful you did at the beginning or one thing you wish you had done that you didn’t?

We Begin Again

11147909214_ba04bda741_zDecember 1, 2012 marked the beginning of my role as full-time caregiver to my mother who suffers from Alzheimer’s Disease.

It’s been a rough two years. My four kids are all at home. They were 13, 10, 8 and 4 when my mom moved in. I was a stay at home mom and a perpetual volunteer. We have an 1100 square foot house with three bedrooms and only one very tiny bathroom on the main floor.

I liked my life.

I love my mother and want to ensure she’s well taken care of. When the time came, we
brought her to live with us. It was the right thing to do. It was also the only option.

She doesn’t have any money. Neither do we, really. So placing her in a private pay facility at roughly $7,000 per month isn’t an option.

She doesn’t qualify for a nursing home through Medicaid because there’s nothing wrong with her that requires a nurse. An around-the-clock babysitter, yes, but a nurse, no.

She doesn’t qualify for in-home care because she doesn’t have enough medical expenses to get Medicaid to kick in anything there either.

I’m an only child. I have no family nearby. I’m it.

I really want to want to take care of my mother. She was my best friend most of my life and has done so much for me. But I’ll be honest: there are a lot of days when I resent the position I’ve been forced into to no end.

The vast majority of the time, she’s not my mother. My mother has slowly faded away. I’m caring for a woman who absolutely refuses to take a shower, wouldn’t change her clothes-ever-if I didn’t force it, insults me, shows almost no gratitude or appreciation for anything I do, requires me to keep a baby gate up at my kitchen door that I must hop over every time I want to go in or out, causes my boys to sleep in the basement, prevents us from being able to do whatever we want, whenever we want as a family, and the list goes on.

You see, everything in life is better when it’s our choice to do it. I’ve said that I’d like to think that even if we were very wealthy, it wouldn’t change anything and I would choose this. The truth is, I’ll never know.

Everything I just told you about the resentment I feel makes me feel incredibly guilty. Like I said, I want to want to do this. My mother deserves that from me. I’ve been praying that God would change my heart. My head knows all this “stuff” but it can’t make my heart feel any differently. But God can!

We’ve recently had a break from the care giving. Due to a fall, my mom has spent the last 8 weeks in a skilled nursing facility receiving physical therapy. Three things happened during that time.

The entire family got a much needed break.

God showed me why what I’m doing is absolutely the best thing for my mom and that money wouldn’t change that fact. You can read details of what led me to that decision here.

I had time to reflect on things we could be doing differently which might make her happier and allow us to enjoy this time a bit more.

11992665765_0cf109088b_zI brought her home this morning. And we begin again.

January 17, 2014 marks the new beginning of my role as full-time caregiver to my mother who suffers from Alzheimer’s Disease.

My heart has changed. I’m thankful for this “do-over” of sorts, and pray for God’s guidance as we continue on the journey.

 

 

 

 

UTI: Know the symptoms!

If you have an elderly person in your life, it is imperative that you know the symptoms of a UTI (and don’t ignore them).

My first experience with a UTI in the elderly was several years ago. I went to my mom’s house and found her in bed in the middle of the day. Unusual behavior. Her speech was slurred. Unusual behavior. And she wasn’t making any sense. Unusual behavior. I thought she had had a stroke. I called 911. The paramedics thought the confusion was dementia. I knew differently.

UTI.

The next encounter was about 18 months ago. My mom, now diagnosed with Alzheimer’s but still living independently, fell four times in three days. Unusual behavior. The fourth time she fell was in the middle of the night. As my husband drove over to pick her up off the floor, I Googled “sudden frequent falls + Alzheimer’s.”

UTI.

She ended up in the ER the next day after seeing the doctor. She was sent home to our house with an aggressive antibiotic. Four days later, she literally slept all day. Unusual behavior. When I checked on her before I went to bed, her voice was childlike, speech was slurred and she wasn’t making much sense. Unusual behavior. I suspected the UTI had gone south and called 911.

She was septic. She spent 5 days in the hospital followed by 30 days of in-patient rehab to build up her strength.

Last year, my friend’s mother-in-law came for a visit. I had never met her, but my friend was talking about how much worse she was than they realized. She suffered from Parkinson’s related dementia, I believe,  but she  was hallucinating and was very confused. Unusual behavior. I asked my friend if it was possible she had a UTI. Upon her return home, it was confirmed. She ended up in a coma. Thankfully, she recovered.

And, last night. My sister-in-law sent me a text that my mother-in-law had been sitting on the bathroom floor for two hours. Unusual behavior. I called and talked to my MIL for less than 60 seconds. Her voice was lethargic and sad. Unusual behavior. Moments after I hung up the phone, my husband walked in the door from a business trip. I told him to kiss his kids and go to his mom’s house. Something wasn’t right. Maybe it’s a UTI.

She was admitted to the hospital for UTI and dehydration-which often accompanies a UTI.

I’m not a doctor or a nurse. I’m simply a caregiver with experience and the internet. If you Google “sypmtoms of UTI in elderly” you will find over 860,000 results. I urge you to read some of them. You will find things like:

“The best indication of a UTI in the elderly is a sudden change in behavior.

“And for people suffering from Parkinson’s disease, Alzheimer’s disease, or other dementia, “any kind of stress, physical or emotional, will often make dementia temporarily worse,” Forciea says”

“elders often don’t exhibit any of the common symptoms – or don’t express them to their caregivers”

When caught early, UTIs are highly treatable. Whether you are a caregiver or not, familiarize yourself with the myriad of ways a UTI can wreak havoc on your loved one.

“Knowing that a urinary tract infection in the elderly can be symptom-free is the first step in avoiding serious complications from untreated UTIs. Any time a change in behavior is noted in an elderly patient, a urinalysis should be performed to rule out a urinary tract infection.”

A is for Alzheimer’s

When my mother began forgetting things, we chalked it up to simple old age. She put a calendar on her fridge to keep track of appointments and a notebook and pencil by the phone to write down important notes. No big deal. I mean, who among us doesn’t forget things, right?

As it got worse, I couldn’t remain in denial. We went to her doctor and he diagnosed her with dementia and prescribed Aricept. I asked him then if she should see a specialist. His response, “No. There are only two drugs that are prescribed and she’s on the more effective of the two. There’s really nothing else they can do.”

What a bunch of baloney!

My instincts told me better, but I was in uncharted and overwhelming territory. I really had no idea what to do or who to see. So, I did nothing. The Aricept did help her memory, but not enough for her to be driving (though at that point she still was).

About 10 months later, my friend saw a notice in the paper about a support group that was starting at a local eldercare facility. The group was aimed at caregivers of those with dementia. It was a four week session. I missed the first week, but went to the other three sessions.

It was the best thing I ever did! I learned so much! Right away, I learned about “geriatric evaluations.” I had never heard of this before, but some of the others’ loved ones had done this and the facilitator of the group highly suggested it. I left the first meeting with something actionable to do!

In less than a month, we were on our way to the University of Michigan to meet with Dr. Judith Heidebrink, a neurologist at the East Ann Arbor Health and Geriatrics Center. Dr. Heidebrink asked a lot of questions and examined my mother. She ordered blood work, an MRI and extensive cognitive testing.

She also dropped the A-Bomb. She suspected my mother had Alzheimer’s. OUCH! Somehow, dementia didn’t sound so scary. But Alzheimer’s. That’s. Not. Good.

The tests took place over the course of the next several weeks and less than two months after we started, we were going back to get the results.

Although there is no way to diagnose Alzheimer’s exactly, other things can be ruled out and certain things in the brain strongly indicate whether or not a patient has the disease. All roads pointed to Alzheimer’s.

The doctor went over all  of the results with us and sent us home with the results and recommendations that came from the cognitive testing–five pages of information all about how well, or poorly, my mom was functioning in different areas.

In some areas, she tested better than average or pretty close to normal limits. When it came to memory, she tested in the 1st percentile. That means if you lined up 100 people her age her memory would be worse than 99 of them! But, she could still cook and shower and dress herself. In some ways, she was still functioning very well.

The doctor  and a social worker both counseled us that now  the important thing was keeping her safe. She shouldn’t be driving. Check. That battle had already been fought. Someone should be managing her finances. Check. She needed medication reminders. Check. I’d been taking her medication to her every day for several months since I realized she wasn’t taking it at all.

We left that day with some other A words. Yes, she had Alzheimer’s. But we had some Answers and we had and Action plan.

Dementia and Driving

 ”When you tell me it’s time for me to stop driving, I won’t argue with you.” I can’t tell you how many times over the years my mother told me this.

She’d had the responsibility of telling her father, a notoriously bad driver, that it was time for him to stop. I think it came after he sideswiped several parked cars in one trip.

He didn’t argue. He didn’t put up a fuss.

She always promised me she’d follow his example.

HA! Famous last words.

When it became very clear she shouldn’t be driving–for her own safety as well as others, My husband and I went over, sat down in the living room with her, made a little small talk. Then I said, “Mom, you’ve always said that when I told you it was time to stop driving, you wouldn’t argue with me.” To which she replied, “I won’t. But it’s not time.”

Oh boy.

Long story short, I told her I was just going to take them for a month until she saw the doctor again. She’d been diagnosed with dementia and had started taking Aricept. She was going back for a follow-up visit in a month.

I lasted 4 days. She made my life a living hell. She would call me and yell at me, call me names. We’d hash through everything, she’d calm down, say she understood. Ahh.

Then, two hours later, she’d call back and we’d do it all again. I don’t know if she was forgetting our conversations or just sitting there stewing and getting mad all over again. Maybe a little of both.

Before long, my husband was screening the calls to protect me. I wasn’t functioning. So I gave them back. I called her doctor and asked him to counsel her that it was time to stop driving.

I took her to that appointment. He counseled her brilliantly. It didn’t do a bit of good. I was torn up. My options were allow her to keep driving and risk her getting lost, hurting or even killing herself or someone else. How would I live with myself is something did happen? Or, take the keys and have her put me through hell for the rest of her life. How would I even function?

Like many of the decisions I’ve faced along this journey, I procrastinated. Five months after I initially took the keys away, she showed up at my house unexpectedly. My husband was there, I was on my way home from a meeting. He told me she was there and I said, “Oh, she had a doctor appointment today, she’s probably coming to tell me how it went. Tell her I’ll be there in a few minutes.” We hung up.

He called me right back. She hadn’t been to the doctor yet. She was on her way and couldn’t find it. Uh-oh. We live in a small town. Getting to the doctor from her house requires two right hand turns. She couldn’t find it even though she’s been a patient there  for 20 years or more.

I told my husband to take her to the doctor and I’d meet them there. In the meantime, I called ahead, gave the staff the scoop and requested that the doctor confront her with it and tell her she couldn’t drive anymore.

I drove her home, and told her I needed the car to get back home.

In the months since my first attempt at keeping the car, I had learned that I could submit a letter to the Secretary of State indicating that I thought my mother was an unsafe driver and why and request that they test her. They requested some information from the doctor and scheduled an appointment for her. I was able to remain anonymous to her in this process.

A few days before the test, she said she needed to practice driving. So, I picked her up, and suggested she drive to the doctor’s office. The mechanics of her driving weren’t really an issue, the problem was she didn’t know where she was going. She drove all over town. She never did find it.

On the day of the test (which was an hour away), my husband took her. We knew she would leave the facility without her driver’s license and she would be fuming mad at me. I was afraid she would get me so rattled on the way back that I’d have an accident. So he took her.

They didn’t even give her a driving test. She answered a few written questions, which, my husband isn’t even sure they looked at. They revoked her license then and there and gave her a letter stating that if her medical condition changed, she could reapply for her license.

I wish I had known about the Secretary of  State option from the beginning. She blames me for everything. She knows I’m responsible for her not driving, even though I’ve never admitted having anything to do with the “test.” I can’t help but wonder if things would be different had I never said anything about her driving and just contacted the state. (For information on this in your state, click here.)

It took four months, and my promising to get her a new car if she were able to get her license reinstated, before she agreed to sell her car. It’s been 11 months since she drove and thankfully, she isn’t still yelling about it. Maybe it’s because she’s accepted it. Probably it’s because other stuff has happened since then for her to be mad about.

But that’s a story for another day.

Dementia and Denial

My mother, who is now 82, was diagnosed with dementia 1 1/2 – 2 years ago. I remember leaving the doctor’s office with her. Driving in relative silence back to her home as she clutched the receipt for her visit in her hand. She looked down at it, read the word “dementia” written in as the reason for her visit and said, “I hate this.”

For at least a couple years, she’d been increasingly forgetful. She’d repeat herself, forget appointments. But really, who among us doesn’t? She kept a calendar on the fridge for appointments and a notepad by the phone so she could write things down to help her remember. No big deal.

An extremely strong and independant woman, she’d raised me alone from the age of 15 when my father died suddenly.  She often worked two, three, even four jobs at a time  to keep food on the table and put me through college. She had been my best friend ever since my father died. We talked on the phone daily…sometimes multiple times. I noticed the forgetfulness, but shrugged it off as normal for an aging person.

She’d also lived alone since I got married until about four years ago, I think. A good friend of hers fell on some hard times and needed a place to stay. It was only supposed to be for about three months, but turned into much more. Even though I could see my mom’s memory starting to fail, it was probably not as obvious because the friend helped her so much around the house.

During this time, I was busy with my fourth baby, so her roommate eased my mind and my load immensely. My kids were keeping me very busy and my focus was on them. If I’m going to be completely honest, I probably pushed some thoughts of where this was headed aside. The world of elder-care is daunting–something I knew nothing about. I also knew, well, sort of, the impact all of this would eventually have on my life and didn’t want to go there. It was painful, overwhelming.

So, I suppose I  was in denial. I even remember thinking that from time to time.

Just about a year ago, there was no denying it anymore.

She got lost–twice. Although, for a long time, I only knew about one incident. Her roommate knew, but out of loyalty to my mother, didn’t tell me.

Then one day she mentioned in casual conversation that she forgot how to use the oven.

Uh-oh.

Her dementia reached out and slapped me in the forehead like a brick. If she could forget how to use the oven, she could forget where the brake was on the car. She could get lost, flustered, forget the mechanics of driving. Hurt herself. Hurt someone else.

Time to think about this seriously. My responsibility. What do I do? What’s the first step? Who do I talk to?

In a word? Clueless!

I wasn’t in denial anymore, but I didn’t know where to start.

Alot has happened in the last year. I’ve made, and am still making a lot of mistakes. But, I’m learning. In this series of posts on dementia and Alzheimer’s, I will share my journey as a caregiver hoping to provide information and support to others in my shoes. Maybe some will read this who have more experience than I do and share what they know so I can make fewer mistakes going forward.