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Stages of Dementia and Diapers: Part One

  
  
  

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Funny how times change. Remember when we were younger and something funny would happen and when we retold the story we added, "I almost pissed my pants!" and everyone laughed? Flash-forward to caring for a person with dementia and peeing your pants is no longer a laughing matter.

One of my biggest caregiver challenges through Mom’s middle stages of dementia was that she was peeing everywhere except in the bathroom. Dining room chairs, living room couch, my car, closet, garage, outside...didn't matter where. When Mom had to go, she went.

When my three year-old son peed outside by a tree, the neighbors would laugh. When my eighty year-old mother did the same thing, the neighbors freaked out! It was like having a puppy in the house. But Mom was not going to grow out of this phase. As time wore on it only got worse.

As I mention in "Alzheimer's Disease and Other Dementias: The Caregivers Complete Survival Guide," "Incontinence will be your biggest challenge...and cause the greatest caregiver distress".

I should have seen this coming. Had I not been in denial for so many years it would have been obvious. Looking back now, the signs were all there. When mom was in the early stages of dementia she became obsessed with napkins and paper towels. At first, I thought she was being thrifty.

There wasn't a restaurant, gas station or supermarket bathroom that she went into without stuffing her purse with paper towels. Once she was home, she would proudly show off her newfound contraband.

It was during this stage of dementia that she also started buying and wearing large boys’ underwear. According to Mom, they were “much more comfortable,” so I never questioned her choice. Looking back, everything adds up. The underwear provided extra room, making it much easier to stuff with toilet paper, paper towels, and napkins.

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Back in the days when my always-frugal mother was growing up during the depression, there were sanitary products on the market that were expensive and uncomfortable. But lets face it – for my mom, household paper products were cheap, absorbent and could be discreetly thrown away. Especially since she visited so many restrooms!

As Mom’s stages of dementia progressed, the only product that would have worked for her back in the 90's was a Kotex feminine pad. But who would have thought back then to use those for urinary incontinence?

Today, the grocery and drug store shelves are stocked with incontinence products. But as a caregiver, the vast amount of products and styles available now is confusing.

Small, medium, large, or extra-large. Daytime or nighttime. Pull on, tabs, disposable, or cloth. Light, moderate or heavy absorbency. Full diapers vs. pads. Male or female... the list is never ending. Choosing a product that works for your loved one is a battle in itself.

As a successful caregiver you need to be prepared that incontinence can strike during any stage of dementia. And this is an embarrassing issue for your loved one to talk about with you, and probably vice-versa. Next to taking away their car keys, this may be the hardest discussion you’ll have to have with your loved one. But it needs to be done.

The first step in feeling comfortable enough to approach this topic of conversation is becoming familiar with the various types of products on the market. I often advise my clients to take a trip through this aisle at their local drug store. If they get confused or overwhelmed, imagine how someone struggling with dementia would feel.

In this series of posts, I will help you through the difficult process of overcoming diaper resistance and choosing the right product as your loved one moves through their different stages of dementia.

If you liked this article and know someone it will help, please share. If you have a specific question regarding the different stages of dementia or dementia care - ask away!

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Every month, we're giving away a free copy of "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide" to a new member of our community. Enter to win a copy by entering your email in the "Subscribe" form on this page. 

Stages of Dementia and the Effect of Hospitals

  
  
  

Stages of Dementia ER Room

 

 

 

 

 

 

 

 

 

 

 

 

 

I remember it like it was yesterday. Once again, Mom spiked a fever and her doctor told us to immediately take her to the emergency room. Sudden fevers and infections happen frequently when your loved one is going through dementia.

The middle stage of dementia is when paranoia and delusions frequently happen. Hospitalization is a perfect storm. What I thought would be a quick in and out turned into a 10-day ordeal that I wouldn't wish upon my worst enemy.

Mom was in the middle stages. She had a fear of hospitals and doctors, so it came as a major surprise to me that she willingly got into my car. Once Mom got checked into the ER, they put us in a small room where they hooked her up to machines that made enough noise to wake the dead. Or keep a person with memory loss on high anxiety, hyper-alert. 

Then they left us for hours. No, seriously, I kept looking at my watch – it was hours! With each passing moment Mom's agitation increased. No amount of talking, singing, diversions, or massaging on my part was working.

No one was checking in to let us know what was going on. I was forced to leave her to find out. Informing the staff we were “having a major melt down behind curtain #2" got no response. I guess being in the middle stages of dementia means absolutely nothing to hospital staff. 

They either didn't believe me or blatantly ignored me until Mom went into a full Chernobyl meltdown and in raced the ER social worker, psychiatrist, a newbie doctor in training, and a security guard. It would have almost been comical if this weren’t happening to my mother and I.

Immediately, they started bombarding her with questions to see if she was oriented – told you it was comical. I told them (once again) that mom was in the middle stages of dementia. The more they questioned, the louder and more out of control mom got.

Truth be told, I was getting out of control. These people were supposed to be professionals and yet they had no clue how to deal with an Alzheimer's patient. After they sedated mom, they admitted her into the hospital.

If you think this story is going to have a happy ending, you're wrong.

Once in her hospital room, I was informed that she would need to have around the clock aides (three eight-hour shifts). Mom's private home aide would only be allowed to spend 8 hours. This meant spending even more money for a person who had never even met my mother.

When we came back the next morning, Mom's arms were tied to her bed rails to physically restrain her. According to one of the hospital's aides, mom kept trying to get out of bed. The next night I visited after hours. Mom was tied to the bed while their aide was sleeping.

Mom kept trying to get up to use the bathroom. The doctor had ordered a foley catheter. Why? I have no idea. But it sure made the hospital clean up team's job much easier. Just an observation.

As a caregiver, it didn't make my job easier because Mom was in distress and continued to want to get up and use the bathroom! All of us want the ability to go bathroom by ourselves. Mom would have been able to if the hospital would allow it. Instead, because of her hospitalization, she became incontinent.

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Every day that mom was at the hospital, I spent all day and half the night with her. The constant noise on the floor, the intercoms going off in the room, a steady stream of strangers bringing unfamiliar meals, taking blood, giving medication, undignified bed baths... it's no wonder she became delusional.

No matter what stages of dementia your loved one is in, hospitals should be avoided at all costs.

But let's face the facts. There will be times that your loved one will need more than a trip to the doctor and the hospital simply can't be avoided. Mom went into the hospital continent. She came out incontinent. Ten days on a foley will do that. It took me 4 months to retrain her to use the toilet when she returned home.

Thank God she was in the middle stages of dementia and still able to make her needs known to me. However, restraining was common in the hospital, and they used this technique as they felt necessary.

The cause of Mom's fever was from impacted bowels. You need to be aware that in hospitals, despite all of the advances in medication and technology, you will need to be proactive. Staff training and responsiveness, which should be top notch, is not always ideal. 

Know that no matter what stages of dementia that your loved one is in, sensory overload from intercoms, bright lights, being prodded, probed and poked by strangers will cause confusion, delusions and anxiety.

When you are providing Alzheimer's dementia care you need to be prepared for not only what happens in the hospital, but equally as important, what will happen when you both come back home.

Every month, we're giving away a free copy of "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide" to a new member of our community. Enter to win a copy by entering your email in the "Subscribe" form on this page. 

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Stages of Dementia and the Skills of Listening

  
  
  

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It can be hard to know what signs and symptoms to look for in an aging parent or loved one. And for many of us, even when we do notice something of concern, it can be hard to differentiate between normal signs of aging and signs of Alzheimer’s and dementia.

Years ago, as my mom was going through the early stage of dementia, the changes that I noticed were so subtle that neither my dad nor I recognized them as serious. We both just chalked it up to Mom getting older. Since I visited with her every day, I was blind to the symptoms. Not to mention, back in the 80’s and 90’s, Alzheimer’s disease was not nearly as well known as it is today. So very few knew what to look for.

Thankfully, awareness has progressed and now there are lists of signs to help you recognize if your loved one has dementia and to tell you about the different stages.

Family members and friends are told the signs to look for, but what about those who live hundreds or even thousands of miles away? Knowing the signs to look for and recognizing the stages of dementia are often based on visual clues. And for some caregivers, due to work, financial constraints and family responsibilities, going home to check on your parents or loved ones is often not an option.

When you care from a distance, visual signs are often not possible. But this doesn’t diminish other tools that you can use to recognize whether your loved one is safe on their own or not. 

What we can’t see with our eyes, we can hear with our ears. 

As a caregiver, never underestimate the power of listening. You know your loved one better than anyone else and can learn a lot about what is or is not going on, simply by asking the right questions and knowing what to listen for.

For those of you who maintain phone contact – know that learning what to listen for is a skill that can be developed. Whether you live near or far, phone conversations can provide you with some of the information you’ll need to determine if and when your loved one needs more help. 

Here are some tips for loved ones living far away screening for signs of dementia:

  • Keep a log of your phone calls by date and time. By jotting down notes, you can look back and see any progression of behavior or things that stand out over time. It’s difficult to remember every little thing as time passes, let your notes be your guide.
  • Listen for difficulty getting out words or finishing sentences. Has their pattern of speech changed? Are they having difficulty finding words to complete sentences or thoughts?
  • Ask them about their day/evening and listen to the things they tell to you. Did they misplace an item or forget an appointment? Did they forget how to do something? Are they spending more time at home than they used to?
  • Listen for repetition. Repetition can be saying the same story or concerns over again. But it can also be not varying meals and outings.  
  • Do they sound fearful, depressed – or on the other side of the spectrum –overly happy and upbeat? Changes in mood or personality for many can be one of the first signs of dementia.  
  • Are they aware of the date or time of year? If they seem to be disoriented when it comes to what time of year it is – maybe they don’t remember a holiday coming up, or a birthday – this can be a clear cut sign. This can also be a red flag for missing medications, meals, or appointments. 

It can be difficult to screen for dementia in person, but even more so if you live far away from the person you are concerned about. But if you know what to listen for, screening for dementia over the phone is possible, and will be your most valuable tool for success.

As stated in Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide, “As a caregiver, you are unique, the person that you are caring for is unique. Know that no two persons with dementia will ever be the same. Each journey will be different." 

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Every month, we're giving away a free copy of "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide" to a new member of our community. Enter to win a copy by entering your email in the "Subscribe" form on this page. 

Stages of Dementia During Holiday Visits

  
  
  

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The holidays are upon us and for most, it’s a joyous homecoming! Whether you’re going home for the first time in a few months, or the first time in years, it’s important to keep in mind that as our parents and loved ones age, sometimes their minds change. Seeing signs and symptoms of Alzheimer’s or dementia for the first time can be a shocking and overwhelming experience. And depending on the stage your loved one is in, symptoms of memory loss can be glaringly obvious or very subtle.

No two people are alike and memory loss will affect everyone differently.

So, it’s important for you, as a potential caregiver to know what to look for when visiting with your loved ones this holiday season. It can be difficult to come to terms with the fact that a parent or family member could be struggling with dementia, and at times, denial can be an initial reaction. But by missing or ignoring clear cut signs, your loved ones are not getting the help they need and they could potentially be in physical and emotional danger.

Whether you’ve noticed symptoms in your loved one before and are using this holiday visit to follow up, or are simply investigating as a precaution, here are some signs that you can spot and when to know if the severity requires action. 

  • Changes in mood and personality.
  • Misplacing and losing things often.
  • Difficulty with words or change in handwriting.
  • Difficulty completing common and every day tasks.
  • Neglect of personal care or hygiene. For example, the smell of urine or wearing the same clothes for days at a time.
  • Difficulty preparing and planning meals.
  • Deferring to you for not only meal choices but activities and outings.

By preparing yourself before your holiday visit with these symptoms in mind, you’ll have a better understanding of what is occurring with your loved one and what your next steps will be as a caregiver.  

If you have a question about an upcoming visit with a family member this holiday season, or a question about Alzheimer’s and dementia care in general, feel free to send me a detailed question about your personal situation.  

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Every month, we're giving away a free copy of "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide" to a new member of our community. Enter to win a copy by entering your email in the "Subscribe" form on this page. 

Alzheimer's Disease as an Only Child

  
  
  

Alzheimer's Disease, Caregiving

We all wish for the perfect family where everyone can work together to support our parents or spouse as they go through the different stages of dementia.

Over the years, I have had many clients who dream and wonder what it would be like to have siblings that would be there for them to help out during this unplanned situation. Yes, there are some families that work together as a cohesive group, and they are a pleasure to work with.

But these families are few and far between.  

Like Santa Claus, the Easter Bunny and the Tooth Fairy - being an only child and having the perfect supportive family to help you through your loved one's stages of dementia is often a fantasy. For many caregivers, the expectation of their family members stepping up to help with their loved one will never be a reality.

The majority of families that I work with are all on different pages than their siblings. Heck, sometimes they aren't even in the same book!

As I mentioned in Alzheimer's Care and the Deadbeat Sibling Club, past family feuds, sibling rivalry, entitlement, birth pecking rights, geography, job hierarchy, and divorce all come into play for siblings when dealing with a family member going through dementia.

And as a therapist and coach, it's not always pretty. Actually, it often becomes down right nasty.

It may sound harsh, but if you asked caregivers with less than helpful siblings if they wished to be only children during this process, the answer would often be yes. 

Siblings can behave badly - no matter what age.

In my practice it is not unusual to call a family meeting. These meetings are often necessary because siblings are unaware, in denial, or quite frankly - some could care less about their parents.

I'm not just talking about siblings who live out of state. I have lost count of the family members that I've counseled and coached who lived within 5 miles, or even just next door, to their parents and rarely see them.

As for the out-of-towners, many are what I refer to as the "Flock of Seagulls." Family members who fly in during holidays or on vacations, and offer unwanted advice to the family members that are acting as caregivers. Essentially, dumping all over the hard work the caregivers are doing, and then fly off to continue with their life and vacation.

Yep, getting extensive advice from those who haven't walked in your shoes is always a welcome treat! Then factor in that every financial and physical decision is going to have to be passed through these individuals for approval.

Being an only child when you are dealing with a parent's dementia can be a blessing in disguise.

Being an only child, although lonesome, has several benefits when dealing with a parent with dementia.

In "Alzheimer's Disease and Other Dementias: The Caregivers Complete Survival Guide" I will show you how to be a successful caregiver through the various stages of dementia.

Here are 6 examples why being an only child during this time can be viewed as a blessing in disguise:

1. You make all the decisions. Without having to consult with one or more siblings to determine what is right for your loved one, there is no chance of dispute or delay. 

2. You are not questioned for your decisions. There is no need to have to explain to anyone why you chose to make a difficult decision or change. You are able to decide what is right for you and your loved one without contention.

3. No one is going to legally challenge you. It's unfortunate, but it happens. Siblings often feel strongly about many things, and methods of care can be a big dispute to the point of legal action. Being an only child allows you to be the sole decision maker and you can be assured that you will not be challenged legally. 

4. You can seek outside help that you need. Often times siblings can second guess why outside help is needed or put pressure on caregiving without outside help. As an only child, you can get the assistance you need without being questioned.

5. Not depending on family members to help, and being disappointed when they don't. Having a sibling gives many caregivers the expectation of assistance. But as you now know, a helpful sibling isn't always a reality and leads to major disappointment. As an only child, you are free from that disappointment and can't be let down by anyone else. 

6. Never hearing, "That's not what Mom/Dad wanted." You will be the best person for the job, and know exactly what you and your loved one need and want. No ifs, ands, or buts about it.

The list that I hear and know personally and professionally is endless, but these are just a few.

As an only child dealing with a loved one who has dementia, you may often feel isolated and lonely. And as the sole caregiver, you are now responsible for caring for a person who is going through difficult moments - and input from someone else could be helpful.

Caring for someone with dementia, with or without a family member's input, is a big job. Big or small decisions will affect them. As a team we can and will work through this together. You will never again be alone.

If you enjoyed this article and think it could help someone struggling with the stages of dementia, share it with them. It could help more than you know.

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Every month, we're giving away a free copy of "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide" to a new member of our community. Enter to win a copy by entering your email in the "Subscribe" form on this page. 

Alzheimer's Dementia Care and The Deadbeat Sibling Club

  
  
  

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Dementia's Impact on the Family

Recently, I watched a video on the Internet that gave "helpful" advice to families who are going through sibling conflict. Watching a video about how to get my "dreaded" sibling to be my new best ally should have really been a life changing moment for me, both professionally and personally. But it wasn’t.

As a licensed therapist, certified coach, geriatric care manager and a certified Florida Supreme Court family mediator, I’m here to tell you that it’s not that easy to get family members on the same page when caring for a loved one.

Over the years, I have found that when you have family members (adult siblings) who have no intention or desire to be a part of the family caregiver process - bringing everyone together rarely becomes a kumbaya moment.

Please don’t get me wrong. It can be done, and I have helped many families successfully work together. But know that it will take a lot of work and dedication from all parties.

Flashback: a few years ago when I was working at Mount Sinai running a support group, which just so happened to be filled with children/caregivers of dementia sufferers on this particular day, the topic of siblings who don't help came up.

You’d think we would all relate because we all have a common understanding and empathy for one another. And in a way we did, but much differently than you might think.

That day, as siblings, we were all fed up. Tired of caring for our parents alone, tired of listening to excuses why they couldn't show, tired of going through this without our siblings’ support.

At that meeting we unofficially formed "The Deadbeat Siblings Club." There was a lot of hate and resentment that we all needed to get out in order for us to heal.

Letting Go of Resentment

One of the most important lessons I learned over my many years as a professional is "Holding on to resentment is like taking poison and waiting for the other person to die".

In my case and many of my clients', it often takes time to figure out why we are so resentful. For me, my epiphany moment was when I realized that it wasn't that my sister wasn't helping out with Mom - our mother - I was resentful that at this time in our lives, she wasn't helping me!

I had thought that all of the years of sibling rivalry were in the past because we were adults - emotional equals. In my case and some of my clients, the rivalry was subtle and lying dormant. Caring for my mother gave my sibling new ammunition to use against me.

What causes sibling rivalry?

There are many factors that contribute to sibling rivalry: parents paying more attention to one child than another, competition vs. cooperation, unhealthy conflict resolution, and family dynamics, to name a few.

Another factor is stressful situations for either the parents or child. Stress can lead to shortened fuses and frustration that sometimes, we don’t have the tools to cope with.

Sometimes, the different stages of dementia that our loved ones go through aren't easy for others to be around. What we have to accept as the "new" mom is difficult and let's face it, some family members can barely deal with the "old" mom.

As I say in "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide"Book, "not everyone is capable of being a caregiver" and without support, our jobs become lonely, isolating and hard. In many families, sibling rivalry doesn’t end in childhood. Old wounds continue to fester and carry into adulthood, especially in times of stress.

Nothing is more stressful than the challenging behaviors that come with the different stages of dementia. Wandering, repetitiveness, bathing wars, and incontinence take their toll on caregivers and all their relationships.

Mindfulness During Dementia Care

One of the tools that I practice with my clients is mindful communication. As caregivers, we should keep in mind that communication is a two way street. Sometimes it’s not what we say, but how we say it, that can make all the difference in the world.

The reality is that you may never have the kumbaya moments with your siblings that you always wanted, but by understanding some of the dynamics behind sibling rivalry, you may be able to forge a new relationship as caregivers for your loved ones. As caregivers, we need all the support we can get.

 

Do you have a question you need answered regarding dementia care? Ask away!

Get honest answers from an expert. You don't have to do this alone. 

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Every month, we're giving away a free copy of "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide" to a new member of our community. Enter to win a copy by entering your email in the "Subscribe" form on this page. 

Stages of Dementia and Fecal Incontinence: Part Two

  
  
  

toileting, Alzheimer's Disease, dementia, frontal Lobe dementia

Jane walked into my office with a tearful face.

"I can't take this any more. I have to place him.”

This was not the first time that I have heard a caregiver make this statement.

However, I have been coaching Jane for over two years and even for me, this statement came as a surprise. Peter was originally diagnosed with Alzheimer's disease, but over time working with both of them it was apparent to me that Peter was more frontal temporal dementia than Alzheimer's disease. Knowing this, in our weekly coaching sessions I would bring up incontinence.

For many of us, when we think of incontinence, we automatically think about urinary incontinence. Depending on a person’s stage of dementia, urinary incontinence will eventually occur.

Fecal incontinence is a whole different matter!

Fecal incontinence is the inability to control bowel movements. This can be caused by other bowel problems, such as: diarrhea, constipation, gas and bloating, which I wrote about in my first article.

Fecal incontinence usually occurs during the later stages of dementia, however, for a person with frontal temporal dementia, it often times occurs in earlier stages. This is what happened to my mother ... and to Peter.

The reality of understanding fecal incontinence and having to deal with this situation are two totally different battles.

As a caregiver you need to be aware that fecal incontinence can strike at any stage of dementia.

Fecal incontinence happens for many reasons: muscle damage, nerve damage, constipation, diarrhea, surgery, rectal prolapse, rectocele and dementia. If your loved one has had any of these prior problems as the stages of dementia progress, they will be more prone to fecal incontinence.

Medication can also be a contributor to fecal incontinence.

It is a well-known fact that many of the medications used for dementia have major side effects on the stomach. Problems such as diarrhea, cramping, and constipation can occur as a result of taking these medications. For many, the side effects are so severe that they are often discontinued - and they probably should be.

Not everyone can tolerate the side effects that these medications can cause. If the medication can help your memory, but you are spending most of your day in the bathroom cleaning up after your loved one ... is it worth it? For many of my clients, the answer is NO.

Why?

Fecal incontinence is the number one reason for early placement in an assistant living facility.

Changing the clothes or a diaper of someone who has urinary incontinence is one thing, but changing a diaper or the clothes of an adult who has fecal incontinence is a totally different situation.

In my book I explain about PTDD (post traumatic diaper disorder) - yes, I have been traumatized... but so are my clients and thousands of others. Fecal incontinence is the least spoken about "behavior" or "side effect" of dementia. But the reality is that it happens and as caregivers we need to discuss this issue and bring it out into the open. Even if it's uncomfortable.

When you are caring for a person with dementia, you will need to address this issue. When you are planning to care for a person with dementia as either a loved one, friend, or paid caregiver, fecal incontinence is something that you will have to deal with and something that you will need to be aware of.

So, where do we go from here? You, as a caregiver, are going to be different through not only their different stages, but also your different stages in life. What you thought you could handle - maybe you can, or could at one time, but now or maybe later on you can’t. As your coach, I am here for you to help you through this time.

There are certain times that even the best of caregivers will need to take a step back to reevaluate the current situation. Know that no matter what stage of dementia you are dealing with, you will need to answer and evaluate, and as things progress – reevaluate. When dealing with fecal incontinence, these are just some of the questions that I pose to my clients:

1. What can you really handle?

2. How will you handle this situation?

3. When will you be able to provide what is needed?

4. Is this something that you will realistically be able to do?

5. How will this affect you and the person that you are caring for?

It took a while for Jane to feel comfortable in her decision. No two caregivers will have the same answer, and you need to do what is comfortable and right for you and your loved one. 

Interested in learning more about dementia care? Download the first chapter of "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide" here!

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Every month, we're giving away a free copy of "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide" to a new member of our community. Enter to win a copy by entering your email in the "Subscribe" form on this page. 

Dementia and Delusions: Part One

  
  
  
Stages of Dementia

Whenever I hear of a client who has dementia and is having delusions, it takes me back to moments where my mom suffered through these episodes and so did I.

Delusions will happen at some point to those who are suffering through the stages of Alzheimer's disease or other dementias.

Dad called me at 10 PM to tell me that he couldn't find Mom. I jumped into my car and drove the 30 miles to my parents' house. In my PJ's fearing the worst, and not caring how I'd look on the 11 news only to find that Mom had not wandered away - she was still on the property!

Mom, the nighttime wanderer, was safely on property (for more on nighttime wandering, go here), thank heavens. But now she was perched at the top of an 12 foot ladder cutting branches because as she logically explained to me when I confronted her, "Florida Power and Light (the local electric company) was stealing our light."

This may sound irrational to you and me at that time, but to Mom it made perfect sense. Mom grew up during the depression - coal, fuel and food are survival.

Once I talked her down from the ladder and got her safely back inside much to Dad's delight, I knew that this wasn't something that I was equipped to deal with. I have a fear of heights and Mom could easily find another ladder because dad had one at any given height. Our family joke was if dad put all of his ladders together we could reach heaven.

When they first happened, my mom's delusions made me uncomfortable. Like you, I was confused, scared, and at a loss of how to react. Truth be told, as the new sole caregiver to another person going through the same stages of dementia as Mom, I had no idea how to properly handle the situation. And failed miserably. 

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Mom's stages of dementia were driving me insane!

I read all the current books on Alzheimer's and tried their "expert aproach" which was to help the person with dementia back into "reality". Using their "expert" wisdom I tried to reason, pointed out reality, bargained and used guilt. Nothing worked and I found myself screaming and crying.

None of my tantrums or "expert reality theories" brought my mom back to reality. All it did was have her dig deeper into her new reality and take her further from Dad and I. The further mom slipped away the more desperate I became. I just wanted the delusions to stop, keep mom safe, and have life as I knew it return to normal.

That night, as tired as I was, I took the long way home. I needed to because I thought I was losing my sanity. How much longer could I keep this up? At the time I knew NOTHING about dementia. I didn't know about Alzheimer's care or what being a dementia caregiver really meant. I didn't know anything about having a caregiver coach, which at that time wasn't even an option.

On the drive home all I could think was how in over my head I was. The 30 mile drive to my parents was filled with fear that mom could have been injured or hurt. My biggest fear was that I wouldn't be able to protect my mom.

Dad needed me to be the rational one. He was in his 90's and couldn't figure this out on his own. The reality was that neither could I. I had a husband, a 6-year-old and a newborn. I knew nothing about Alzheimer's Dementia care. I knew nothing about the stages of dementia and what was normal.

That night when I drove back to my husband and kids I never felt so alone. The next morning I did the only logical thing that I knew to do - I called Mom's doctor. I told him what happened the night before and he prescribed a medication that I quickly filled.

As promised, Mom's behavior stopped. And so did she. Mom stopped being Mom with every medication or increase of meds that her doctor ordered. And like anyone else giving Alzheimer's Dementia care, we just keep filling the doctors prescriptions.

What I didn't know then that I do know now, is that delusions are just one of many normal stages of dementia. Yep, let me just say this again.

Delusions are a normal stage of dementia. Delusions happen. And with both Alzheimer's and dementia they happen a lot.

A delusion is a false belief. Usually they are harmless, but the for the person who is going through them, they believe that they are real. I only wish that in all those Alzheimer's Caregiver support groups that I attended, that they would have normalized Mom's delusions and guided me through this stage of dementia. But they didn't.

I was left on my own. Hopeless, hapless, crying into my pillow, begging God to help me. God knows I couldn't do this alone.

Flash forward years later, where I've dealt with over 10,000 families, I've learned what works and what doesn't.

Here are 5 things that will help you:

1. Each family is different. The caregiver support and intervention that they need will be different. There is no "one size fits all" with dementia.

2. Good caregiving support needs to help the caregiver and their loved one in real time. You need support when the situation happens to know how to deal with it then and there.

3. The person that you are caring for will be going through different stages of dementia. Each stage of dementia will present challenges.

4. Due to the stages of dementia your loved one will act out of the norm and you'll be thrown some caregiver curves. It's okay, with proper planning we can deal with this.

5. Know what you are dealing with. There are over 86 different types of dementia - Alzheimer's is just one - and it may or may not be what your loved one is dealing with. As a caregiver, you should learn the different types of dementia - each one will present itself differently - and the medication that will be used for that particular type. 

Whether you are giving or getting caregiver support, keep this in mind. In my book, "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide," I address delusions. I hope sharing what I know now will help you. 

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Every month, we're giving away a free copy of "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide" to a new member of our community. Enter to win a copy by entering your email in the "Subscribe" form on this page. 

Alzheimer's Disease and Nighttime Wandering

  
  
  

 wanderingUnless you have lived it, no one really gets it.

Nighttime wandering, depending on the person's stages of dementia, will wreak havoc in your life. Daily, I get a crisis phone call from a sleep deprived caregiver who has spent yet another sleepless night listening for the sounds of their loved one, who they fear and know is leaving their bed.

Been there done that. My mom was the ultimate night walker! I can totally relate.

Years ago, when Mom was in the moderate stages of dementia, her night time wandering drove me into a sleep deprived caregiver mode. As you all know and have experienced, when you are sleep deprived, you have less patience, mental agility and energy the next day.

The reality is that when your loved one is wandering through the house, no matter what stages of dementia they are in, the sleep deprivation that will happen to you as a caregiver will turn you into the walking dead.

Putting Mom's wandering into perspective...maybe this is payback for when I was a teenager and my parents waited up until I got home? But in reality, I was the good kid and my siblings were the late night rebels!

No matter who was the good kid or bad, with memory loss, all bets are off. Unfortunately for me - and now you - depending on the person's stages of dementia, they may no longer remember which child did what or the good kids from the bad. This applies to all relationships including marriage, siblings, and children. Good or bad, happy or sad, all the memories of their loved ones get lumped together.

What this means to you as a caregiver, is that the person with memory loss could meld and blur past situations.

Past memories will become their now. And dealing with their "now" is now your reality.

Unfortunately for me (and now you), this situation is going to suck. How we deal with that situation will make all the difference. In order to be a successful caregiver, you will have to learn how the different stages of dementia will affect your loved one.

Sleep disorders are not uncommon. The reality is that it's common for many of us to wake up in the middle of the night. But when a person has dementia, their sleep/wake cycle will change. Memory loss may affect sleep patterns and they may get up and have night time wandering. But this is common.

And oh my, the trouble they can get into.

Showering by themselves, cooking, dressing for a job they no longer have, or my mom's favorite - tree trimming that I wrote about in "Alzheimer's Disease and Other Dementias: The Caregivers Complete Survival Guide".

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I have clients who raid the fridge and forget to close the door so that all of the food spoils. Some get dressed for business and then drive to their "office." While others fuel the mid night oil by going through mail or email, signing up for newsletters, and even donating to causes and charities. 

But at a certain point, we need to stop worrying about what our loved one's are doing during their daytime/nighttime mode, and focus on their safety during these times. Wandering around in a dark house can lead to anxiety and falls.

At first I didn't even know Mom was nighttime wandering. I thought that I was just a tad stressed out from her daytime care and that I was overlooking things that I normally do, like put the dishes in the dishwasher, close a cabinet door, or shutting lights off.

I would awake in the middle of the night - a little caregiver anxiety - to check on Mom. All the lights in the house would be on and she was softly snoring. I actually called the electrician to check the circuit breakers!

And so I did what any caregiver would do. I freaked out.

I recalled a novel that I read many years ago where they put baby powder on a loved one's feet at night. Mom was in the moderate stages of dementia and I was desperate. Her nighttime wandering had sent me into the dementia zone of caregivers.

Sure enough, the next day I found out who the nighttime light gremlin was. Yep, it was Mom! I simply followed her trail of foot prints until the powder wore off.

The next day I got a baby monitor. But after raising two kids, the monitor drove me nuts. Every sigh, toss and turn woke me up. This went on for six months. I hear the same thing from spouse caregivers who wake up every time their loved one moves in the bed because they fear their loved ones are getting up and out.

So I did the next logical thing that I could think of, I went out and bought a floor mat. Unfortunately, the only mat I could find was for Halloween, and it scared the bejeebers out of her. But she did stay in bed for a while! Mom grew up in a home bordering a cemetery. So after putting myself in her shoes, I realized I would freak out too if I put my feet on the floor in the middle of the night and heard ghosts and goblins making scary noises.

I finally found a mat that played music and that's when Mom started getting out of bed again. It could have been due to her ever-changing stages of dementia or maybe the music didn't scare her. 

Keeping Mom in bed at night was never my goal, but keeping her safe was.

Times have changed and so has technology. Products that were once only available to nursing homes, hospitals and assisted living facilities can now be purchased for home use. Alzheimer's caregivers now have new ways that will alert them about night time wandering.

On the internet you can purchase bed mats that will remotely let you know that the person with dementia has left the bed. They have sensors based on body pressure that will alert you if a person is getting up or accidentally rolls off the bed. There are also floor mats that you can purchase that will alert you if your loved one leaves the bed. These mats can also be used in front of any door or area that you choose.

As the stages of dementia progress you will eventually buy or rent a hospital bed. Many Alzheimer's caregivers mistakenly believe that their loved one is safe in a hospital bed, but nothing could be further from the truth. I will do another blog post on hospital beds, but for now consider buying a bed sensor that attaches to the bottom of the bed.

Keep in mind that these products will not keep the person with memory loss in place, they are not restraints. As a caregiver you will have to remain vigilant, but your job will be easier. These products may you get some peace of mind and hopefully some sweet dreams.

Do you have a question about the different stages of dementia? Ask an expert - I am here to help you.

Ask your dementia care question

Every month, we're giving away a free copy of "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide" to a new member of our community. Enter to win a copy by entering your email in the "Subscribe" form on this page. 

Stages of Dementia and Fecal Incontinence: Part One

  
  
  
Dementia Incontenence resized 600My Mom and Dad grew up during a time when talking about bowel movements was a much more conversational topic because it was a not to be missed, daily (or twice daily) event. Seriously, they could have had their own reality TV show called "American Bowel Wars"!

Mom grew up during the great depression and Dad grew up in the early 1900's and loved John Harvey Kellogg - yes, the Corn Flake guy. According to Mom, she was as regular as the sun rising. Dad was a once a day kind of guy, Mom was a twice a day kinda gal. Growing up, I was the "can we NOT talk about this?!" kinda of gal.

My parents were Northerners who moved to the South. I was born as a proper Southerner, and we just DON'T talk about these things. Not even with family members and definetly NOT around the breakfast table.

Just so you know, being "regular" in our home meant stewed prunes and Kellogg's Corn Flakes were breakfast staples. Back then, I would never admit to my parents that I really liked stewed prunes, but now as an adult, I will openly admitt that boiled Sunkist prunes are actually quite delicious.

It is because of all the conversations from my childhood (and prunes), that it never dawned on me that my Mom could later have fecal incontinence. As Mom's caregiver, I didn't know that memory loss could affect her bowels.

Urinary incontinence, yes. But bowel incontinence - who knew?

I will never forget when Mom's stomach started growing. And growing...and growing. She was in the mid stage of dementia and still physically and vocally active. She was in a stage of dementia where she was still able to go to the bathroom by herself.

As her stomach grew larger, so did her pain and discomfort. Since Mom was in the mid stage of dementia she had a hard time letting me know what was wrong. At this point, her stomach looked like she was 6 months pregnant and she was grimacing in pain.

Mom has always been afraid of doctors so of course, when I made the appointment with her geriatrician she smiled at him and said she "felt fine." One touch to her stomach and she was grimacing in pain - off to the hospital.

Fecal incontinence can be life threatening.

What started out as slight uncomfortableness soon became a hospital situation. Mom had a serious case of impacted bowels that resulted in a two week hospital stay.

During Mom's hospitalization, I learned more than I ever wanted to know about Mom's and the bowels of those who have memory loss. If you've read my book "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide" you're aware that I have a major case of PTDD (post traumatic diaper disorder). So dealing with any form of incontinence is not a happy moment for me.

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Impacted bowels is a common occurance when a person has dementia. Since it is common, as a caregiver, I know that in many situations it's avoidable.

Think about it - how many times have you gone on a holiday or swayed from your normal routine? For many of us, constipation occurs.

The difference is, for those of us without Alzheimer's disease or other forms of memory loss, we can simply go to our medicine cabinet and take a laxative. Not so simple for a person who is in any stage of dementia.

There are many reasons for fecal incontinence: diet, lack of excercise, trauma, medication, altered mental states such as Alzheimer's/dementia, anxiety and other medical diseases.

As a caregiver, you need to be aware that during different stages of dementia, things like appitite, food choice, excercise and liquid intake will change bowel movements.

A key part of caregiver support is education. An informed caregiver is the best caregiver. With that in mind, here are 5 tips to avoid fecal incontinence during any stage of dementia.

1. Check not only memory medications (Aricept, Exelon, Razadyne, Namenda and Axona), but also all medications that the person is taking. Speak to their doctor about any changes or concerns in bowel movements before starting or stopping any medication.

2. Make sure that the person you are caring for is getting plenty of fruits and vegetables. They are high in fiber and help with digestion. We made a cabbage soup for mom that she loved, and so did we because it kept her regular. You can also read more here on what to serve to your loved one with dementia.

3. Ensure your loved one is drinking plenty of fluids. Hydration is key to avoid constipation.

4. Movement is important to keep the bowels working, so any form of physical excercise is important. No matter what stage of dementia your loved one is in, any body movement will help avoid constipation. In the early and mid stages, this may mean continuing at a gym and developing a new excercise regime, such as walking, swimming, etc. As Alzheimer's and dementia progress, consult with a physical therapist or doctor to tailor the excercises to your loved one's capabilities.

5. No matter what stage of dementia your loved is in, when you are an Alzheimer's Dementia caregiver you will need to be vigilent. Your relationship and your new knowledge of this situation will make a world of difference.

Do you have a question about stages of dementia or caregiving? Get honest answers from someone who knows the ins and outs of dementia care.

Ask your dementia care question

Every month, we're giving away a free copy of "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide" to a new member of our community. Enter to win a copy by entering your email in the "Subscribe" form on this page. 

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