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navigatingalzheimersdisease.com

"When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown." Helping caregivers of Alzheimer's patients, navigate through deep waters.

How to Manage Medications for Alzheimer’s Patients

In addition to medications and vitamins that patients take to slow the progression of Alzheimer’s disease, patients are often prescribed meds for other ailments. All of these require management by the caregiver.

In the early stages of dementia, your loved one may be cognizant enough (with close caregiver supervision) to limitedly manage their own medications. If for instance, the patient takes medications in the morning or evening, associating it with a practice, like eating dinner or breakfast, then they may readily remember to take their medicines. The act of taking their medications can be attributed more to rote than to actual remembering, but it will allow the patient some regulated independence. They eat breakfast and down meds. They eat dinner, and then take their pills. In the same manner, a nighttime routine may act as a trigger to take pills at bedtime.

While some patients are able to “remember” to take their medications, caregivers have to pay very close attention to the process. Visual observation will guarantee that the patient takes the correct medication, and the correct dose at the right time.

Just as failing to take prescribed medications is dangerous, overdosing is also a serious concern. Caregivers should keep a medication file handy, to present at the hospital or poison control center in the event of an overdose.

Once it is determined that the patient is incapable of consistently administering their own medications, the caregiver should immediately take over the responsibility. Take an extra precaution by making sure the medications are inaccessible to the patient. Don’t assume that the child restraint cap is a sufficient deterrent.

Managing and Dispensing Pills

Coral all the medications into one place, perhaps on a lazy Susan, or in a nice basket or a small, sturdy box that will accommodate the plastic containers. Whatever you choose should be portable, so that it is easily carried from one room to the other. You will not dispense the medications from the bottles corralled in your nice basket or lazy Susan. It takes too much time and effort, and it’s also easy to make mistakes. Dispensing can be very confusing, given that some medications are prescribed for multiple times per day or even once or twice per week.

The most effective way of keeping medications straight is to use plastic pill dispense boxes, also known as dose or pill planners. The pill planners have individual compartments that are labeled with the days of the week. Caregivers will transfer the number of pills required for each day into the segment of the pillbox that is labeled for that day.

Caregivers can further differentiate between pills by separating nighttime medication from daytime medication. Choose a darker color pill planner to in which to place nighttime medications.

Using pill planners simplifies the process of dispensing medications. Caregivers plan out their loved one’s medications once a week, or multiple weeks at a time.

Pharmacies sell the compartmentalized boxes, or for your convenience, they can be purchased online. Prices vary, but the boxes are very affordable.

 

What to Do When an Alzheimer’s Patient Goes Missing

Six in ten Alzheimer’s patients will wander, and when they do it is downright dangerous for them, and a nightmare for their caregiver. It doesn’t take long for panic to set in, as the caregiver envisions every possible obstacle and potentially treacherous situation that his or her loved-one might face during their missing incident.

While panicking is the most natural thing to do, it is of course not helpful in ensuring your loved-one’s safe return. However, before we take a look at what to do in the event that a dementia patient goes missing, let’s observe the reasons that lead up to it.

Wandering, even getting lost, is an unfortunate symptom of Alzheimer’s disease.

According to a University of Florida study[1], there are many reasons and even common scenarios that account for a person with dementia becoming lost. They include:

  • Normal and independent activity

During a brief time of independence the person with dementia wanders away.[2]

  • Inability to follow instructions

 The person with dementia becomes lost when he or she is unable to retain instructions, perhaps about where to wait for the caregiver.

  • Independent wakening

 The dementia patient is lost, after awakening on his or her own. They make, what the study terms as, a “judgmental or way-finding error”. [3]

  • Agitation

Perhaps in response to becoming agitated with their caregiver, the dementia patient wanders off. [4]

  • Unusual situations

 Unexpected situations that are beyond the normal, habitual or structured daily activities occur. The dementia patient prompted by more confusion wanders away.[5]

Knowing the reasons why dementia patients wander, and attempting to avoid those things, can help to keep them safe at home. However, there are no guarantees. In a given year, it is estimated that 60% of Alzheimer’s patients wander, and half of those individuals will become lost. One study indicates that o Alzheimer’s patients getting lost, at least 30,000 critical cases a year are reported to police. [6]

We know the danger. We know how to best avoid it, but what can we do once the unthinkable has occurred? What is the first step in finding help and getting our loved one with dementia in a safe environment?

  • Vulnerable Adult Goes Missing

A search should begin the Nano-second the caregiver recognizes that the person with dementia has gone missing. Searching the immediate area for a long period can be a huge waste of time; Spend 10-15 minutes max, and then immediately report the person missing to the police. Dial 9-1-1. Because the person that’s gone missing has Alzheimer’s, it is definitely considered an emergency, and the usual waiting period for filing a missing persons report will be waived. The police will be familiar with the term, “vulnerable adult”, and the search for your loved-one will begin right away.

The caregiver’s firsthand knowledge of the dementia patient’s habits will prove invaluable.

  • Knowing if the patient is right or left hand dominant could speed the process of bringing the patient home. In many cases the person’s first step away will be in the direction of their dominant hand.
  • Is there a special place within the neighborhood that the caregiver often takes the person with dementia; a lovely park for instance?
  • Is the person wearing Medic Alert or identification jewelry?

A Medic Alert bracelet or pendant is quite useful in the event that your loved one goes missing. MedicAlert coupled with the Alzheimer’s Association’s Safe Return is a nationwide emergency response service that operates 24-hours.

Here’s how it works.

Caregivers call the hotline to report that the person wearing the jewelry is lost. The call can be made at any hour of the day or night. At this point local Alzheimer’s Association chapters, and law enforcement agencies within the community support network are notified. Anyone finding the patient, whether they are a member of emergency personnel or a citizen, can call the 800 number on the back of the jewelry, alerting the proper authorities that your loved–one has been found.

For more information on the MedicAlert/Alzheimer’s Association Safe Return program, call: 1-888-572-8566, or go online at www.medicalert.org/safereturn.

[1] Prevalence and Antecedents to Dementia-Related Missing Incidents

[2] “Lost and Found” A report by the Alzheimer’s Foundation of America on the methods and technologies to aid law enforcement in locating missing adults with dementia.

[3] “Lost and Found” A report by the Alzheimer’s Foundation of America on the methods and technologies to aid law enforcement in locating missing adults with dementia.

[4] “Lost and Found” A report by the Alzheimer’s Foundation of America on the methods and technologies to aid law enforcement in locating missing adults with dementia.

[5] “Lost and Found” A report by the Alzheimer’s Foundation of America on the methods and technologies to aid law enforcement in locating missing adults with dementia.

[6] 6 Butler, B., B. Barnett (1991) Window of wandering. Geriatric Nursing September/October 226

 

Wandering a Danger to Alzheimer’s Patients

Elderly Asian couple Pinterest
“Caregivers, in anticipation of a loved-one’s bent toward wandering, should take steps to ensure their safety.” Photo credit- Pinterest

It can happen at any stage of the disease. Your loved one who suffers with dementia could wander off. According to the Alzheimer’s Association, six out of ten people with dementia will wander. Here’s the kicker, there’s no guarantee that your loved one, won’t wander off, just because they’ve never have before. If they can walk, wandering is always a possibility. Patients have been known to wander far from home, sometimes walking, or even driving away, if their car keys haven’t been confiscated.

Why dementia patients wander

The answer to why patients wander is varied. There isn’t a specific trigger for every wanderer, but there is something that calls to your loved one to get up and out. In their minds, it might be as simple as “going home.” For instance, my mother was certain that if she just walked down the road a little ways from my house, that she would be back in her old neighborhood, her childhood home, and would see her aged parents.

She often decided to “go home”, and in her mind she could get there. She had no understanding of time and space. It didn’t matter that we lived 1000 miles from her hometown. She would be home in a matter of minutes, if she just went for a walk. Also, she was driven by responsibility. She had taken care of her parents in their old age. In her mind, my mother had to get back to care for her own mom and dad, and she would walk there if she had to. She was determined and an attempt at convincing her otherwise, always fell on deaf ears.

Obviously, taking a walk alone or getting behind the wheel of a car is extremely dangerous for one who suffers from any form of dementia. Getting lost can exacerbate the effects of Alzheimer’s disease, which may cause even more confusion and frustration, and have a long-term consequence. Caregivers, in anticipation of a loved-one’s bent toward wandering, should take steps to ensure their safety.

How Alzheimer’s proof is your home?

Your home is the first line of defense. Make it as inconvenient as possible for your loved one to leave the house unnoticed.

Visit your local hardware store to find a simple alarm mechanism that can be easily installed at each door to the outside. Place the alarm in an inconspicuous place along the doorframe. Leave it turned on. The alarm will sound when the door opens and the connection is broken, alerting you to a wandering family member.

Childproof doorknobs are another option for keeping wanderers from leaving without supervision. Additional locks, or locks that are basically camouflaged will help. In other words, place locks in odd places; on the down low, or up high where they’re not expected.

Do not leave car keys out in the open. Out of sight, out of mind.

Enlist trusted neighbors, and neighborhood watch groups.

Outsiders may not know that your family member has Alzheimer’s disease. They don’t interact with them on a daily basis, at least not in the same manner that you do. A neighbor might observe your parent or spouse out for a walk, and think nothing of it. If it “takes a village to raise a child”, it takes that much more to assist a neighbor with a mind-altering disease.

If you are comfortable with your neighbors, then inform them that your loved one should never be out and about alone. Give the neighbor your telephone number, and ask him/her to call you immediately if they see the family member outside alone, especially if they are seen walking away from home. In the same manner, inform your community’s neighborhood watch.

It can be difficult to share with someone outside of the family, that your loved one has dementia. You want to protect their dignity and privacy, but it is best to err on the side of caution, but only if you’re confident of your neighbor’s trustworthiness.

Supervision is crucial

A person in the throes of dementia should never be left unattended. Depending on the stage of Alzheimer’s of your loved one, you may not have to be tied at the hip. However, stay close, and stay aware. Pay strict attention to your loved one’s movements when out at a public event.

While we’ve strongly stressed that dementia and Alzheimer’s patients wander, (six out of ten) we must also stress that locking a loved one inside a room or house unattended is not recommended. In fact, it shouldn’t occur, since it presents additional dangers.

Implementing the practices above will help caregivers keep loved one’s with dementia safe from wandering. However, it is unfortunate that sometimes despite a caregiver’s best efforts, a loved one will wander away. Navigatingalzheimersdisease.com will examine that topic in an upcoming article: “What to Do When an Alzheimer’s Patient Goes Missing”.

 

 

 

 

 

 

 

 

 

Study to Assess Alzheimer’s Effect on Caregivers

Screenshot 2016-07-27 00.16.17
Picture by Michael Havens (Flickr)

Participants Wanted for Alzheimer’s Caregiver Study

If you’re reading this page it is assumed that you are either a caregiver for an Alzheimer’s patient, or you know someone that is. That being said, if there were a research study that assessed cognitive data, to track caregiver health, would you participate?

There is in fact such a study, and here’s the clincher; the Health-e Brain project will only include individuals who wish to participate. As you can imagine, a voluntary group of people can just as easily opt out, so for this reason, researchers are requesting that interested parties carefully consider their decision to take part in the 12-week, online study.

Dr. Corinna Lathan, co-founder and Chief Executive Officer of Anthro Tronix, andSteve Sidel, founder and Chief Executive Officer of Mindoula Health Inc., are teaming together to lead the research project. Participants will include both men and women, between the ages of 45 and 65 years of age. Researchers hope to enroll as many as 400 participants. The primary focus of the study is to “help scientists understand how the caregiving experience impacts brain performance”, by assessing cognitive vitality and mental health.[1]

There are a few requirements to be accepted into the study. For instance, participants must be current caregivers that have been providing care for at least a year.

The BrightFocus Foundation and the Geoffrey Beene Foundation Alzheimer’s Initiative support the Health-eBrain study. [2]

For more information or to join the survey, follow the link below.

https://www.health-ebrainstudy.org/join-the-study/

[1] https://www.health-ebrainstudy.org/?utm_source=BrightFocus%20&utm_medium=social%20&utm_campaign=BrightHEB

[2] https://www.health-ebrainstudy.org/?utm_source=BrightFocus%20&utm_medium=social%20&utm_campaign=BrightHEB

Alzheimer’s Caregivers Need Practical Help

Screenshot 2016-07-23 23.53.15

H-E-L-P for Alzheimer’s Caregivers

Alzheimer’s is a demanding disease, and for that reason, the daily responsibilities of a caregiver never end. Anyone taking care of a loved one with Alzheimer’s knows that this is true. They work, work, and work some more. It is easy for caregivers to feel lost, as days run into weeks, and weeks into months. What they need, really need, is h-e-l-p; someone to come alongside of them, and not just to cheer them on, but also to lift them up in practical ways.

Friends, neighbors and family members want to help, but aren’t sure how to go about it. As a caregiver, how often has someone said to you, “If there’s anything I can do, please let me know?” This is well appreciated, however, what generally happens is- nothing. The status quo continues, and here’s one reason why. Caregivers don’t come clean on what they are up against, with what and how they need help.

Break the cycle

Caregivers, you must speak up and ask for help. Be specific when it is offered. When you hear the words, “If there’s anything I can do let me know”, then let them know.

On the other hand, neighbors, friends, and extended family, if the caregiver with whom you’re acquainted doesn’t ask for help, then take matters into your own hands. You may not know precisely what he or she faces each day, but there are some certainties that can be identified.

Just like yours, a caregiver’s family eats three meals a day. When you plan and prepare breakfast, lunch or dinner, then that’s one less job the caregiver has to complete.

Running errands is greatly appreciated.

Though a gift card for groceries is nice, a gift of time might even surpass a financial gift, since getting out of the house is an issue for caregivers.

Helping out a caregiver can be as easy as picking up a few staples the next time you’re in the grocery store.

Taking a loved one to the doctor’s office, finding a place to park, and escorting them through the parking lot and into the office, is a chore. Driving right up to the front door would be wonderful. Offer to take your caregiving friend and their loved one to the doctor’s office. Drop them off and pick them up at the entrance.

A picture is worth a thousand words, perhaps especially for a caregiver that often misses out on their kid’s events. Be the designated photographer and document the events that your caregiving friend has to miss.

The above are only a few examples of how extended family, friends and neighbors can ease the emotional stress of caregivers, by helping to meet their daily challenges in practical ways.

What are your practical suggestions for helping out caregivers of Alzheimer’s patients? Please share them below.

 

 

Caregiving Complicates Parenting

Raising kids and caring for a loved-one with Alzheimer’s disease

Sixty to seventy percent of unpaid caregivers of Alzheimer’s patients are women. Women of varying ages, are juggling life with kids, life at work, and life with Alzheimer’s disease. This article takes a brief look at what it’s like to care for a loved one, while also raising kids; at best, it’s complicated.

Caregiving Complicates the Parenting Process

There is little rest for a wearied parent battling the onslaught of his or her own parent’s dementia, while attempting to keep life as normal as possible for their children. But, there is no normalcy with dementia. Relentless and devastating to families, Alzheimer’s disease rips through aged minds, eliminating basic memory. Brushing teeth, feeding, bathing, and all other rudimentary daily responsibilities ultimately fall to the caregiver.

The mundane tasks associated with caregiving lengthens days, but childhood is short. Caregiving parents strongly sense their children, rapidly slipping through their fingers. Parents miss ball games, recitals and other special events that mark accomplishments and the passing of time in a child’s life.

We fear that our children are denied what we are most challenged to provide; our full and undivided attention. Having to choose between the joys of parenting and time caring for an elderly parent is not a fair choice, but is one in which, caregivers attempt to find a balance. We are also plagued with an accompanying anxiety. We are anxious that our children will somehow lose themselves and the whimsy of childhood, as we are entrenched in the throes of their grandparent’s disease.

Good parents seek to provide good homes, good relationships and good experiences, as their children pass through the growing years. Unfortunately, Alzheimer’s often negatively influences relationships, as the affected person becomes less and less himself or herself.

Privy to grandma’s slow demise, will children of the diseased become overly burdened with emotional turmoil that is beyond their years? These are the questions and dilemmas that caregivers with children face. But, there is good news in the midst of this situation. Children are most often stronger and more understanding than their parents suppose.

Children are a blessing.

Eleven years ago, when my own dear mother was diagnosed with dementia, we had four children, eleven years of age and under. My husband and I were fearful of what the future would hold as our parents aged. We made a purely, intellectual decision. We would not have another child. That being said, our only son was born the year following my mother’s diagnosis. So, with five children, aging parents, and one with dementia we moved forward into uncertainty. We found through the process, that our children were very strong, stronger than we gave them credit. They were a blessing to one another, to their parents and to their suffering grandmother.

It was remarkable to watch our children adjust their hearts and minds to the pressing needs of our family. They were learning a valuable lesson, one that all children would do well to learn, and some adults too. Through the caregiving process our children recognized a few things: they were not the center of the universe, life is sometimes hard, and everyone has a responsibility in the hurts of others. Don’t get me wrong, our kids had their understandably selfish moments, but overall, we found they were willing to make sacrifices in deference to their grandmother’s needs.

The older children had the advantage of remembering their grandmother when she was well and lovingly doted on them. The younger children’s point of reference, however, was rooted in her dementia. They weren’t privy to the grandmother that baked bread and cookies, that played games on the floor, or as an advocate, defended their naughty behavior before their parents. Though she remained sweet and kind, their granny was not the same person. She was not the granny their siblings once knew. This made me sad and I mourned my younger children’s loss. But, I also was learning a new lesson.

I am not sure at what point it dawned on me, but I came to realize that my little ones loved their grandmother just as she was-plagued with dementia. It was of little consequence that she sometimes exhibited odd behavior. They adored her and like the older kids, made exceptions on her behalf. They enduringly answered the same questions over and over again, watched television through her endless chatter and witnessed the occasional hallucination that took their grandmother further out of the present, and into the abyss of Alzheimer’s disease. The children loved her just as she was, and even with dementia, she loved them right back.

If your family is facing the disease, please know that there is hope. Raising your children while caring for a loved one with Alzheimer’s disease may be the hardest thing you will ever do. However, with your assistance, children can thrive through the challenges of growing up with a caregiving parent. A few suggestions follow:

  • Do not ask your child to complete uncomfortable tasks.

It is reasonable to expect your children to help out a little. However, it is best that children do not attend to certain jobs. Jobs that compromise the grandparent’s dignity in front of the child should be left to the caregiver. 

  • Do not minimize your child’s feelings.

Do not say, “You shouldn’t feel that way”, but help the child work through his or her feelings. Be truthful about what you are also feeling. You may find your emotions are similar.

  • Give your kids love at all times.

Children will adjust to almost anything, if they know you love and support them. As much as possible give your children your attention. Listen to them when they talk to you. Hear what they are saying and respond lovingly. Your time is divided, but on those occasions when you are with your kids alone-make it about them.

  • Remind your children that the person, for whom you are providing care, is the same on the inside as they were before the disease.

Teach your children to love that person. Talk to children about the good memories you have surrounding the Alzheimer’s patient. Embrace moments of clarity and draw your children’s attention to those moments.

  • Teach your kids to love others.

Explain to your child why it is that you care for your elderly parent. Tell your child how you love your mom or dad in the same way that the child loves you. Teach them that love demands action. 

  • As often as possible, be present for your child’s events.

This will be impossible on many occasions, but try very hard to be there. Make the effort for the sake of your child. Your kids will sacrifice many occasions, but caregiving parents must make an effort to be present. Divide and conquer – one parent goes while another stays home. At least be present for the big events. Hire a healthcare professional for an hour or two on those occasions.

  • Solicit the help of trusted friends and family members.

When you are tied down with caregiving, ask friends or family members to chauffeur your child to a birthday party, football practice, dance class etc. It may seem like a lot to ask, but often people who want to help, do not know how. They are willing, but must be instructed on how they can assist your family. Be sure the person you solicit is one that you trust without reservation, and with whom your child is comfortable.

Yes, caring for a family member with Alzheimer’s disease will complicate the parenting process, but the experience could have a hand, in producing children that will be stronger, more loving and empathetic adults.

 

 

Defining Alzheimer’s Disease

Ladies and Gentlemen, this is Alzheimer’s disease

Holding a practice ball in his hand, the late Vince Lombardi, coach of the Green Bay Packers, began the first day of training camp with these words, “Gentlemen, this is a football.” Who doesn’t recognize a football? But, it’s kind of like that with Alzheimer’s disease. We think we know what it looks like, but aren’t certain we’ll recognize it, if it shows its ugly head.

The Alzheimer’s Foundation of America defines Alzheimer’s disease as “a progressive, degenerative disorder that attacks the brain’s nerve cells, or neurons, resulting in loss of memory, thinking and language skills, and behavioral changes“.

Somehow, with all the medical terms, the definition of Alzheimer’s doesn’t sound as heinous as it really is. But, those of us who care for loved ones, are all too familiar with its fiendish ways. The results of what happens to a brain when it begins to degenerate is beyond imagination. Though Alzheimer’s disease is the most common cause of dementia, caregivers will tell you, that even the word dementia doesn’t do it justice.

And, ladies and gentleman, THIS is Alzheimer’s disease.

Its final form is crippling-demise, which may be the reason that many don’t recognize Alzheimer’s in the early stages. Alzheimer’s has one redeeming factor; it is often slowly unfolded. Unfortunately, this can work against the undiagnosed, who tend to compare their cognitive abilities to persons who have been facing the disease for some time. Obviously, the cognitive ability of a person in the early stages, will be vastly superior to those in the waning stages of the disease.

Self diagnosis

Do not self-diagnose. It may sound funny, but this is exactly what a lot of people tend to do. It is a form of denial. Here’s what often happens. Knowing someone who has dementia, you begin to compare yourself with their capabilities; and surprise, you come out feeling pretty good about your cognitive abilities. You can, after all, remember your own name, where you live, and what you had for breakfast. This isn’t a real test.

No one wants to be diagnosed with Alzheimer’s disease, but a misdiagnosis, or going undiagnosed is worse. See a health professional for a complete physical and mental evaluation.

Diagnosis and Early Detection

Find a doctor that specializes in Alzheimer’s disease. Ask your primary physician to refer you to a healthcare provider that specializes in the treatment of Alzheimer’s diseases and other dementias. It is very important that you see a specialist in the field, as a primary doctor/general practitioner, internist, etc., may not have extensive experience with the disease.

A neurologist, psychologist, or psychiatrist will be able to diagnose your situation, as it pertains to memory loss associated with Alzheimer’s. Early detection is very important, and can assist the patient in holding the disease at bay for a long time. Alzheimer’s disease isn’t curable, but there are steps that will slow the progression of the disease.

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