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

Stranger Danger: In one ear and out the other

stranger dangerThere are few things parents universally agree on. Few things that we all teach our children. One possible exception is Stranger Danger. We disagree on what should be included in history curriculum, methods for teaching math and whether or not sex education should be taught in schools. But, has anyone ever opted out of having their child hear the Stranger Danger talk?

Yes, as a society, we seem to agree on this one. From the time our children can walk, we begin teaching them about strangers. Barney sings about Stranger Danger, The Berenstain Bears teach Stranger Danger in one of their books.  In our community, we have a preschool program called Safety Town that includes a lesson on the topic.

Once they start school, there are assemblies, guest speakers, role playing and more!

“NEVER GO TO SOMEONE’S CAR! They might want to show you puppies or offer you candy. It doesn’t matter! NEVER GO TO SOMEONE’S CAR!”

“If someone ever approaches you when you’re at the bus stop or in the yard playing, DON’T GO TO THEM! Get in the house! Call for your parents! DON’T GO TO THEM!”

How many times have your children heard that message and from how many different sources? Dozens and dozens and dozens, right? Yep. Mine, too. You think you have it covered? You think they know what to do? Yep. Me, too.

Until this afternoon.

We live on a quiet little street. Second house from the end in our U shaped neighborhood. My kids and the neighbor kids run back and forth from one house to the next almost every day. Today, my 10 year old girl, 13 year old boy and three girls from the neighborhood were all playing in our front yard. I was in the back of the house cooking dinner. Our dog started going crazy! I know that bark. It means someone’s here. Might be another dog or a person, but someone is definitely on her turf!

I walked into the living room to look out the window. What I saw was a man walking away and toward his car parked on the street in front of my house. My daughter was coming toward the house with a flyer in her hand.

She came in and said, ”Mom this guy said to give this to you.” It was a political flyer for a state candidate.

I asked her what was wrong with what just happened. She gave me a blank stare. I pressed on a bit more directly by asking what she should do when she’s approached by a stranger. Light began to dawn a little. She tried to make it better.

“Oh, he didn’t approach me.”

Realization began to settle on me like a lead weight on my shoulders. The rest of the exchange went like this:

Me: “He didn’t come into the yard?”      Her: “No.”

Me: “Where was he?”    Her: “In the street.”
Me: “Where were you?”    Her: “In the front yard.”
Me: “What part of the front yard?” Her: “The middle.”
Me: “I’m pretty sure his arms aren’t long enough to hand you this flyer from that distance.”

“Oh.”

Talk about a teachable moment! I immediately went outside and talked to all of the kids about what happened and what should have happened.

Next, I called the phone number on the flyer and left a message. I’m pleased to say I received a return call within 10 minutes. The volunteer is a college kid. He’s not a parent. Didn’t occur to him that it was an issue. They called him right away and he also had his teachable moment.

The more I thought about it the more I realized that all the talks, all the speakers, all the books, videos, coloring pages, role playing haven’t been enough. Had this been a predator, she would have been gone in an instant and her brother and three friends would have been standing there in shock.

And, it didn’t take candy, or puppies or balloons. It was a boring political flyer!

We talked as a family about it at dinner. My daughter said something so simple but yet, profound,

“Well, it never happened before so I forgot what to do.”

After she said this, I told the family I was glad this happened. The guy, though lacking some common sense, meant no harm. But it wasn’t role playing, it was real.

Many of us practice fire drills in our families. Maybe we should practice stranger drills with people we, as adults know, but our kids don’t. They’ll probably make the wrong choice and we can have our teachable moments.

Maybe then kids, including my daughter, can say, “It’s happened before and I know what to do.” Maybe then, someone other than the dog will know what to do!

 

Note: By suggesting stranger danger drills, I am in no way suggesting the drill involve anything scary, like trying to get the kid into a car or actually taking the child. I’m suggesting the set-up of a situation in which the child always feels safe and it can be talked about after the fact like what happened in the unplanned, real-life episode we experienced. 

Random Acts of Kindness for the Caregiver

“Mom, there’s a blue bag in the mailbox. It looks like a package,” my daughter said as we drove down our street on the way to school. I assumed she meant the newspaper box and it was the blue bag of ads. I told her as much and said, “I’m sure it’s not as exciting as you think, but I’ll look when I come home.”

random acts of kindnessWell, much to my surprise, it was a gift bag with my name on it in magic marker. I will admit, there was a moment of hesitation fearing that it was a bag of poo (not everyone loves me!) but was delighted to find an encouraging note, prayer and a book of prayers of renewal and restoration for caregivers. It was left by an anonymous friend who is aware of my struggles and took the time to send some encouragement my way.

I was so deeply touched by this random act of kindness! It’s inspired me to write this post. Not because I hope more people will do nice things for me, but because it meant so much to me and I know there are so many caregivers out there who would benefit from a random act of kindness shown to them.

Do you have a friend or family member who is a caregiver? I’m going to give you a laundry list of ideas to encourage him or her in a minute but, first, a couple notes about your friend, the caregiver.

Your friend, the caregiver, is used to doing things for other people. She is not accustomed to or comfortable with asking for help from others. She is likely to decline your offer the first time, maybe even the second time. Be persistent. She probably really wants to say yes!

Your friend, the caregiver, feels isolated and lonely. She doesn’t get to go out with friends like she used to. If she’s married, she doesn’t get date nights like she used to. She probably doesn’t invite people over as often as she’d like either.

Your friend, the caregiver, wants to hear about your life, yes, even your problems! Sometimes, the best way to get out of a woe-is-me, my-life-is-so-rotten funk is to focus on someone else’s “stuff” be it good or bad.

Your friend, the caregiver, is busy and tied down. Always be ready with two or three dates for whatever it is you’re planning. Be mindful of the fact that it’s probably hard for her to get away. If possible, work with her spouse to schedule times that she will be able to leave. Alternatively, allow time for her to make arrangements for respite care so she can go out with you or offer to stay with her loved one while she goes out.

Ready to perform a random act of kindness for your friend, the caregiver? Here’s that laundry list to get you started:

  • Write an encouraging note–and may I suggest snail mail? Admit it–it’s the best!
  • Send flowers.
  • Pick up a hanging basket or some annuals for her yard. Wear your garden gloves and take a little hand shovel with you when you deliver them so you can plant them for her.
  • Fix dinner for her family. Don’t ask her if you can. Tell her you are and give her a choice of a couple different meals.
  • Schedule a mani-pedi date for the two of you.
  • Give her a gift-certificate for a massage or salon.
  • Schedule a girl’s night out for a group of her closest friends.
  • Show up with lunch.
  • Surprise her with a certificate for housecleaning services or form a cleaning posse with some of her besties.
  • Put together a DVD care package with some flicks starring her favorite hunk. Don’t forget the popcorn!
  • Take her to the local comedy club. She needs to laugh!
  • Buy her a couple books and a snuggly blanket she can curl up with.
  • Do her laundry! Maybe not the delicates and whitey-tighties, but you can fold towels, right?
  • Gift her with some spa products in a stress-relieving scent.
  • Stay with her loved one for a couple hours so she and her husband can go to dinner.
  • Go to the grocery store for her.
  • Pray with her and for her.

What random acts of kindness can you add to this list? Even the smallest gesture will bolster her spirits, renew her energy and help her to not feel so alone!

 

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

Dementia and Incontinence

Over the last few weeks, my mom’s incontinence has gotten MUCH worse. I would classify her as almost completely incontinent of bladder and about 50% incontinent of bowel. While these issues have been creeping up and steadily getting worse, they’ve been fairly well managed because she’s been willing and capable of changing her own briefs. When we’d notice she’d had an accident, we would ask her to change her pants and she would.

incontinenceOver time, the “passive” assistance she’s needed with this has increased. We used to keep the briefs in a drawer in the bathroom. Then we kept the package on the floor in the bathroom. But, she started hoarding the briefs by taking a handful at a time and putting them in her bedroom. The problem came in when she’d go into the bathroom with a full brief and no clean ones in sight. Lacking the ability to solve that problem, the dirty brief was left on and leaks and accidents occurred. We are now vigilant in making sure there is always one, and only one, brief sitting right on the sink next to the toilet.

Now, she needs “active” assistance. She has a hard time figuring out how to get the brief off and a new one on. That goes hand-in-hand with the job of care-giving. No surprises, it’s part of the job.

BUT, often, she flat-out refuses to take it off. The other day, my husband and I spent the better part of 6 hours trying to get her to change it.

Pause for just a moment and think about that smell. If you’ve never encountered it, you’re blessed. If you have, you know it’s a gagging, hold-your-breath-as-long-as-you-can smell. It permeates the house. Forget the job of cleaning her up, that’s nothing compared with enduring the smell while trying to convince her to change.

Maybe you’ve never cared for an incontinent elderly person, but if you’ve cared for a baby, you know diapers only hold so much. If they aren’t changed, eventually they leak. Through the clothes. Into the bedding. Into the upholstery.

Adjusting to this is rough. I don’t cry very often about this whole caregiving thing. I’m not always happy about it, but it’s my job and I do it. I’ve had complete hysterical melt-downs twice in the last three weeks.

She’s been averaging 3 pair of slacks a day. Changing the sheets is about an every other day job now. I clean the toilet and bathroom floor as many as 4 times a day. Twice in the last two weeks she’s fallen down in the bathroom. Thankfully, she hasn’t been hurt. In both instances, her pants were half up–or down. We aren’t sure, but we think she has lost her balance trying to get the pants up after she goes.

There are so many factors that could be at play and it’s so frustrating that she can’t really communicate what they are. Here’s just a few thoughts and possible solutions. Even if they’re strategies that aren’t working for us, maybe they’ll work for you and your loved one.

  • She’s afraid of falling. We’ve installed a raised toilet seat with grab bars on the side. She seems to not really know what to do with it, but I’m working with her to teach her to use the grab bars.
  • Her pants might be too difficult to get up and down. She wears only elastic waist pants, so I’m not sure what else we can do here, but if your loved one is still wearing pants with zippers and buttons and snaps, it might be time to change.
  • Her brain might not be receiving the signal that she needs to go. Not a thing in the world we can do to fix that, but encouraging her to go to the bathroom on a regular schedule might help. We just have to figure out how often that will need to be.
  • She’s lost the ability to solve the problem of cleaning herself up and attending to the details of putting on a new brief when it is wet. We accompany her to the bathroom when necessary and stand outside the door to listen other times to see if we need to intervene.

As always, I encourage you to do your own research. Both Alz.org and Caring.com have great resources on the topic of incontinence and Alzheimer’s. Of course, you should also talk with your loved one’s doctor. There are medications to help; however, like any medication, they involve pros and cons, risks and benefits and there is no single solution for every patient.

One final and important note…if the onset of incontinence is sudden, it probably isn’t a result of the dementia, but rather a symptom of an infection. Please get your loved one into  the doctor promptly!

If you have some tried and true strategies for caring for an incontinent person with dementia, please share in the comments!

 

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.

 

 

 

 

How do you really know your loved one is getting good care?

cautionNo matter often you visit your loved one when they are in a hospital or nursing home, you can’t be there 24/7. You can’t see all or hear all. So how do you really know they’re getting good care? The care they deserve? You don’t. You can’t.

My mom fell 7 weeks ago and has been in a skilled nursing center for the last 6 weeks for physical therapy so she’ll be strong enough to return to our house.

She stayed in this same facility two years ago for the same reason-physical therapy. Then, as well as now, the place is clean and nicely decorated. The staff is very welcoming when it comes to eating meals with my mom and visiting as often and whenever we’d like. I was confident that she would once again receive good care and return to us stronger than she had been before.

But, how could I really know? I couldn’t. And the big difference between the last stay and this one is my mom. Her Alzheimer’s is so much worse than it was two years ago!

My senses were on high alert from day one. All along there have been little, subtle things that concerned me. Not in a way that I felt she was being abused, but just that this facility, known for its physical therapy and as a nursing home just wasn’t equipped to handle a patient with this level of dementia.

Although long, this post is an effort to point out some things that might be subtle, and alone, probably don’t mean much. But when you start to add them up, you get a picture of a place that is not providing good care for my mom.

Check-In

Remember, she’s there because she fell. Two years ago, there was a pad on her bed and in her wheelchair. If she got up, an alarm went off alerting the staff. They got her settled in bed. No side rails, no alarm. I questioned this because I was seriously concerned that she would get up to use the restroom and fall. The answer I was given was that someone attended a seminar and found out that the alarms don’t really help because the patient gets startled by the sound and then falls.

(My answer? Use a silent alarm that alerts the staff in a pager. Also, I did a Google search of “do bed alarms reduce falls” and the most common answer was no, though not for the reason given to me. My point? She isn’t going to remember to call you if she wants to get up, so how will you know if she falls?)

Day 1

As an aide helped her to the restroom, she admonished my mom because she didn’t call her for help, saying, “Miss Carolyn! Don’t you remember you have to call me when you need to get up?!” To which I replied, “No! She doesn’t remember. She has Alzheimer’s.” The aide responded by saying, “Oh, I didn’t know that!”

She’d been there almost 24 hours and this aide did not know she was tending to an Alzheimer’s patient. 

Within the first week

One of the first things I did was schedule a beauty shop appointment for her. My mom’s of the “roller-set” crowd and desperately needed a perm so I quickly took advantage of the convenience offered by this in-house service.

When I visited later that evening, her hair wasn’t done. When I inquired, they said she didn’t cooperate. I suggested we reschedule and the beautician call me about 30 minutes before she was going to do it. I went over with my laptop, explained to my mom what was happening and sat in the salon while she got her hair done. No issue.

2 Weeks

During her care conference, we talked about the fact that she doesn’t eat much meat. From the dietician’s standpoint: “She’s only eating 25-50% of her food.” I suggested they cut her meat for her, which probably wouldn’t make much difference because she now seems to really prefer softer foods.

I acknowledged that I knew he had to provide her with certain servings and a balanced meal. I relayed that we tease her about her hollow leg at our house. She may only take one bite of meat, but she will eat four helpings of mashed potatoes, three helpings of fruit or the vegetable if she likes it. I asked if it would be possible for the dining staff to take note of what she’d eaten. If she hadn’t touched the meat, but all the stuffing and vegetables were gone, could they offer her more?

He cheerily responded, “Oh, she can always ask for more! Yeah, well, she has dementia, pal! She’s not going to think to ask for more!

The signs continued.

Her bed and clothes were soiled with urine. Often. She’s not completely incontinent. Sometimes she uses the bathroom, sometimes she uses the brief. When she’s home, if we notice her brief is wet we guide her to the bathroom and tell her to change her pants. Nothing ever soaks through. But, with no one really paying attention to it or encouraging her to change it, it just keeps getting more full.

ariel on dependsAt home, we keep her briefs sitting out on the bathroom floor. They used to be in her underwear drawer in her dresser. Then we moved them to the vanity drawer in the bathroom. Then right out in the open so she can see them. You see, she might go to the bathroom and notice that the brief is wet and full, but without seeing a fresh one sitting there, she wouldn’t know what to do about it. Guess where they keep the briefs in the facility? Inside her closet in the opposite corner of the room as the bathroom. On the top shelf (which she can’t reach when she’s sitting in a wheelchair even if she knew they were there)!

I got a call December 23rd from the social worker. My mom had been there nearly a month and it had been brought to the attention of the social worker that she was uncooperative when it comes to showers. Welcome to my world. The social worker thought maybe I could come in and help. We decided on 8:30 the next morning (Christmas Eve). I showed up at 8 ready to help. Of course the message hadn’t been passed on and the staff had already attempted to do it at 7 that morning. Let me tell you, my mom HATES taking a shower. I ended up doing the whole thing myself.

Up until then, I had been thinking that if they were able to qualify her through Medicaid to stay there permanently, I might do it. Then I thought if I’m still going to have to come in and do the very part of the care giving I hate the most, why would I pay them $7500 a month?!

I haven’t been asked to come in and help again with the shower, but I’m pretty sure she hasn’t had a full shower since. I know her hair hasn’t been washed. She doesn’t smell, so I think they’re managing sponge baths, which is ok, I guess.

On Christmas morning, my son and I went to pick her up to bring her to our house for the day. She has an ankle bracelet on because of the dementia. She’s an “elopement risk.” I was told they don’t take it off, but to let the receptionist know we were going out and she’d turn of the alarm while we exited the building.

No receptionist. Waited a few minutes. No receptionist. Well, it’s Christmas, and I don’t have all day. Out the door we went. Alarm ringing loudly. We loaded her in the car and my son stayed with her while I took the wheel chair back to her room. I walked back in and was well past the lobby before a member of the kitchen staff finally peeked around the corner to see what the alarm was for. A good three to four minutes had passed before anyone even noticed.

All of these things are noteworthy in and of themselves, but when you put them all together, a picture of poor care begins to emerge.

One of the best things about my mom’s stay has been her room mate. A wonderful woman who is simply there for physical therapy. Her mind is sharp as a tack! I’ve learned much more about my mom’s progress, mood and behavior from her than all the staff members combined.

Last night, she told me that she has reported three of the aides for their treatment of my mother. Two of them were fired. The incident that resulted in the termination had to do with my mom’s shower. Now, my mom swears and hits and yells about a shower. She HATES them! Especially when they come in at 7 am while she’s sleeping, turn on the lights, wake her up and say, “TIme for your shower!” I’d cuss, too! Apparently, they weren’t too kind in return one day. I don’t believe they were physically abusive, but whatever they did exactly was enough for them to be fired. (Mind you, I haven’t been informed of any of this by the facility.)

What disturbs me most is this: One morning about 5:30 am mom’s room mate called the aides because she needed assistance herself. Two responded. When they finished with her, one said to the other, “Hey, watch this.” She then went over, turned on my mom’s light and said, “Wake up! Time for your shower!” Just to get her riled up. This infuriates me.

I called this morning and told them I will be bringing my mom home on Friday. (I can’t do it sooner because of paperwork and the need to make some arrangements for her here at home.)

The good and bad of this is that my mom doesn’t remember the ill-treatment. She raves about how good they are too her. But, because she doesn’t remember any of it, she can’t report it. I’ll never trust anyone I don’t know well to care for her. Not ever. Even if she were in a facility that specializes in dementia care, this type of disrespectful treatment could still go on. And there, her room mate wouldn’t be able to tell me what’s happening any more than she can.

If you made it through this whole post, thank’s for hanging in there. I shared this story to demonstrate that mistreatment of your loved one doesn’t necessarily manifest itself in bruises, bed sores and a dirty, dingy environment.

I encourage family members to look for the little things, the subtle things along the way to know if your loved one is being treated with respect and dignity in addition to having their physical needs met. Be vigilant. Talk to room mates, families of room mates. The staff. Let them know you’re watching! And don’t be afraid to speak up and take action when it’s not going as you think it should.