The 20 most important things to consider when looking for a memory care home

seniorenheim 6The day I moved my husband into a memory care home was the second worst day of my life. The worst day was the day he was diagnosed with Alzheimer’s. And both of those days were worse than the day he died.

After the diagnosis, I didn’t waste any time getting our finances sorted out, talking to an elder attorney about options, and learning about Medicare benefits. I did, however, wait a year before I contacted that Alzheimer’s Association. That was a mistake because this amazing association offers so much good information and support. So do yourself a favor and contact your local chapter and take advantage of all the free classes and support groups they offer.

After several years of caring for my husband at home, and downsizing to a more manageable home, I was advised to start looking for a memory care home in case an emergency situation arose.  I wanted to keep my husband at home as long as possible. But things happen, and in my case, I received a serious diagnosis. My doctor said that I needed to take care of myself and I listened to him. I got recommendations about a few homes in my town, found one I liked, and put my husband on the waiting list.

Many facilities will allow you to get on a waiting list. When your name gets to the top, you might have the option to refuse because you are not ready. In this case, you can move down the list but still have priority over someone who is recently added. Ask about this option.

The home where my husband lived for two years provided good care, but did not live up to the promise of caring for him until the end of his life. In fact, the last month of his life included several moves. After being discharged from the hospital, Morris was sent to a rehab center in a nursing home. It was not a good situation. The food was horrible, and the care was sorely inadequate. After two weeks, I begged the original home to take him back. They agreed to only if I hired additional one-on-one care. I did, but the cost was prohibitive. I moved him again after finding a wonderful end-stage Alzheimer’s unit down the hall from a hospice center. Morris received excellent compassionate care there the last two weeks of his life.

Here’s list of 20 things to look for and ask in your search for a memory care home:

  1. Look at your state’s Public Health and Environment website to see a facility’s number of beds, complaints, medical director, ombudsman’s phone number, and whether the home is Medicare and/or Medicaid certified. Here you can discover things like mishandling of narcotics (oxycodone), and theft of residents’ belongings, etc.
  2. What is the staff to patient ratio? During the day? At night?
  3. Is there a RN (registered nurse) always on the premises? Is a doctor always on call?
  4. How often does a medical doctor visit the facility?
  5. What level of care does the home provide? Can your loved one stay there until the end of his/her life? What if your loved one becomes non-ambulatory?
  6. Are three meals a day provided? What about special diets such as kosher, vegetarian, low-salt?
  7. What type of training has the staff received?
  8. What is the staff turn-over rate?
  9. What is the monthly rate for housing and care? What services does that rate include?
  10. Are rooms private or semi-private? How do prices vary for each?
  11. Is housekeeping and laundry provided? How often?
  12. What programs are offered? Social, educational, outings, exercise?
  13. How secure is the unit? Are residents locked in? Is there any chance a resident can leave and wander? Has this ever happened?
  14. What happens if the resident becomes aggressive or violent? Is he or she drugged? Given a warning that he or she must move out?
  15. What is the chain of communication for letting family members know what is going on with a loved one?
  16. What is the discharge policy?
  17. Are pets allowed?
  18. Are visiting hours limited or open?
  19. What is the protocol for a medical emergency?
  20. Visit the facility and look around. Are the staff appropriately dressed? Are they warm and friendly? Is the environment pleasing and clean? Does the executive director address residents by their name? Would you be comfortable having your loved one live there, and would you be comfortable spending many hours there?

No one ever wants to live in a nursing home or assisted living facility. But when your loved one needs more care than you can provide, is a danger to him or herself, or you, the caregiver, need to take care of yourself, a memory care home can provide a warm and loving option. Good luck finding one that suits your needs and the needs of your loved one.


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Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

How dehydration can lead to delirium and other health issues

Different drinks in glass jugs on white background. Ideas for summer cocktailsIt’s hot outside and it’s easy to get dehydrated. Our body is 50-65% water. The brain, which is 70% water, gets dehydrated just like your body. When it is dehydrated, neurotransmission—which is heavily dependent on water—is impaired, resulting in poor memory, concentration and impaired abstract thinking.

Dehydration can also result in delirium. Delirium is a mental disturbance that is exhibited by a new or worsening confusion, changes in one’s consciousness or by hallucinations. It has a sudden onset from hours to days. It can be reversed but it’s easier to prevent delirium than to reverse it.

When my mom was admitted to the hospital for a UTI (urinary tract infection), she developed delirium. A psychiatrist called me to report that my mom was exhibiting full-blown dementia. I had just spoken to Mom a day before and she sounded fine. I refused the offer of an antipsychotic drug for her, knowing well the high risk of putting an older adult on those drugs. (see Why you should throw away that antipsychotic drug prescribed for your loved one). As it turned out, my mom was severely dehydrated. After a couple days on a hydrating intravenous solution she returned to her normal self.

It’s important to learn the signs of dehydration in everyone, but especially in seniors and young children. The physical symptoms are usually clear: dry lips and mouth, no tears when crying, decreased urine output, sunken eyes, headache, lethargy, dark urine and extreme thirst. The mental symptoms are not as obvious, but can result in mental confusion, irritability and delirium.

Many older adults often limit their fluid intake because they may be incontinent or fear accidents. Those who have limited mobility may try to avoid another trip to the toilet. Individuals who have aphasia (inability to speak due to dementia or brain damage from  stroke, etc.) may not be able to express their thirst.

If you are a caregiver, and that includes caring for yourself!) here are some helpful guidelines:

  • Encourage and remind your care partner to drink.
  • Drinking healthy fluids is important as eating healthy foods. Water is the top choice, followed by milk, vegetable and fruit juices. Remember that juices contain a lot of sugar, both natural and added, so don’t overdo them. Soups are nourishing and hydrating but be aware of the sodium content. Avoid carbonated and caffeinated drinks which have a diuretic effect.
  • Serve liquids at a temperature that your care partner likes. Not everyone enjoys ice water.
  • Flavor water with lime or lemon.
  • Remind your care partner not to wait until s/he is thirsty. By then s/he is already dehydrated.
  • Serve juicy fruits such as watermelon, which contain lots of water.
  • Offer healthy popsicles as an addition to drinks and to those who refuse water.

The rule of thumb is to have 48 to 64 ounces of non-sweetened, non-artificially sweetened drinks. Hydration keeps the body in proper pH (how acidic or alkaline your body is) and protects it from getting dehydrated, which is a cause of inflammation and other kinds of imbalances. Dehydration can also contribute to urinary tract infections (UTIs).

The dangers of UTIs

Urinary tract infections are notorious for causing delirium and delusional behavior in the elderly. When younger people get a urinary tract infection, they typically experience painful urination, an urgent need to urinate, lower abdominal pain, back pain on one side, and fever and chills. However, an older adult might not experience those symptoms. As we get older our immune system changes and it responds differently to infection. Instead of pain symptoms, seniors with a UTI may show increased signs of confusion, agitation or withdrawal. In older adults with dementia, these behavioral changes may come across as part of that condition or signs of advanced aging. If the underlying UTI goes unrecognized and untreated for too long, it can spread to the bloodstream and become life-threatening. In fact, I have a dear friend who died from a UTI that quickly became septic.

Always: Keep the patient hydrated since urination can flush out unwanted bacteria from the urinary tract.

The next time your mind is muddled, drink a tall glass of water and notice the difference. Drink plenty of water, fresh juices, and herbal teas to stay hydrated, flush out toxins and enjoy mental clarity—in summer and all year round.

 


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Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Urinary incontinence, UTIs, and dementia

Incontinence inscription isolated

There are lots of reasons that people develop incontinence. This blog focuses on people with dementia: their care and ways to prevent urinary tract infections, a serious consequence of incontinence in the elderly.

People with Alzheimer’s disease and dementia often have problems with urinary incontinence. This can be a result of not realizing they need to urinate, forgetting to go to the bathroom, not being able to find the toilet, or limited mobility.

Ways a caregiver can help

  • Avoid giving drinks like caffeinated coffee, tea, and sodas that may increase urination. It is important, however, that healthy liquids including water, smoothies, and fresh fruit juices are not restricted. Hydration is vital to overall health and to prevent urinary tract infections.
  • Keep pathways clear and the bathroom clutter-free, with a light on at all times.
  • Make sure you provide regular bathroom breaks–at least every 2-3 hours.
  • Mark the bathroom door with a large sign that says “Bathroom.”
  • Provide a portable commode or a toilet frame with handrails or grab bars to make getting on and off easier. Make sure it’s the right height.
  • Supply underwear that is easy to get on and off.
  • Use absorbent underclothes for trips away from home and/or adult diapers.
  • When going to a restaurant or public place such as a movie theater, try to sit as close to the bathroom as possible.
  • Limit liquid intake after dinner

Talking to the doctor

  • Ask if it’s possible to cut back on prescribed medications such as water pills that increase urination
  • Does the patient have undiagnosed diabetes? Diabetes increases urination.
  • Is an enlarged prostate the problem? Rule out any medical issues that increase urination or block urination.

Preventing urinary tract infections

Urinary tract infections, commonly called UTIsare more common in people who are elderly, bed-ridden and incontinent. Symptoms can include general weakness, confusion, nausea, dizziness, sudden incontinence or increased severity of incontinence. Often these symptoms seem connected to other conditions that are unrelated to a UTI, and can make it difficult to determine that the cause is an infection.

  • The most important method of prevention is to keep the genital area clean and healthy. Wipe from front to back to avoid transferring bacteria to the urinary tract, especially in women.
  • Remove used diapers from front to back.
  • Dry the skin when changing or after bathing since bacteria grows better in moist areas.
  • Use recommended hygienic products for washing that are not drying to the urogenital area.
  • Keep the patient hydrated since urination can flush out unwanted bacteria from the urinary tract.
  • Try to make sure your loved one gets help to empty their bladder entirely, since urine remaining in the bladder can help bacteria thrive and multiply.
  • Help to prevent constipation by providing plenty of fruit (applesauce, apples, berries, prunes, figs) and other foods high in fiber, such as oatmeal, legumes, peas, chia seeds, carrots, beets, broccoli, Brussels sprouts, popcorn, nuts, and whole grains.

The dangers of UTIs

Urinary tract infections are notorious for causing delirium and delusional behavior in the elderly. When younger people get a urinary tract infection, they typically experience painful urination, an urgent need to urinate, lower abdominal pain, back pain on one side, and fever and chills. However, an older adult might not experience those symptoms. As we get older our immune system changes and it responds differently to infection. Instead of pain symptoms, seniors with a UTI may show increased signs of confusion, agitation or withdrawal. In older adults with dementia, these behavioral changes may come across as part of that condition or signs of advanced aging. If the underlying UTI goes unrecognized and untreated for too long, it can spread to the bloodstream and become life-threatening. In fact, I have a dear friend who died from a UTI that quickly became septic.

If you suspect a UTI

  • Get medical help, especially if your loved one has fever or complains of nausea or back pain. An antibiotic will be prescribed. Make sure the entire prescription is taken even if the symptoms subside. Otherwise, the infection can come back with a vengeance.
  • If it is appropriate, have the patient drink unsweetened cranberry juice on a regular basis, and/or take a cranberry/D-Mannose supplement to help stave off future infections.
  • Give the patient plenty of water to flush out the harmful bacteria
  • Apply a heating pad to the lower abdomen and/or back to help with discomfort
  • A pain reliever such as Advil can help alleviate pain and fever

Urinary tract infections are nothing to mess around with. Please get your loved one medical help if you suspect an infection.


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Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Does gum disease really cause Alzheimer’s disease?

Doctor holding blue crystal ball with gum disease sign on medical background.A study published January 23, 2019 in Science Advances caused a lot of people to freak out. It implied that the bacteria called Prophyromonas gingivalis that cause gum disease—gingivitis– might be the culprit in Alzheimer’s disease. It sounded too good to be true. But can you reduce your risk by getting regular dental check-ups, and brushing and flossing every day?

I posted a link to the study on my Facebook page and got some heated responses such as “I don’t believe that. My mom and husband always went to the dentist??????” Another person called the study “BS.” 

So, what is the bottom line? And what is the response of scientists who were not involved in the research paid for and conducted in part by employees of Cortexyme, Inc., a San Francisco–based biotech company? 

Here’s the gist of the Cortexyme study: the researchers found that enzymes made by P. gingivalis, called gingipains, interact with amyloid-beta and tau (the proteins implicated in Alzheimer’s disease) in test tube experiments and in the brains of mice. According to the study, gingipains cause A-beta to accumulate and tau to behave abnormally. These are the primary signposts of Alzheimer’s disease in the brains of humans.  The Cortexyme group also found genetic material from P. gingivalis in the cerebral cortex – an area involved in conceptual thinking – in the three Alzheimer’s brains they examined. Cortexyme, Inc. is developing compounds that block gingipains, which their scientists claim reduce the amount of A-beta in the infected mice.

In a previous study, Sim Singhrao at the University of Central Lancashire, UK, found that P. gingivalis can migrate from the mouth to the brain in mice with gum infections. Her group of researchers concluded that periodontal disease is a polymicrobial inflammatory disease that leads to chronic systemic inflammation and direct infiltration of bacteria/bacterial components, which may contribute to the development of Alzheimer’s disease.

A cautious response

Rudolph Tanzi,PhD, an Alzheimer’s researcher at Massachusetts General Hospital in Boston says that the Science Advances study is inconclusive.  An interview in Science News (January 31, 2019) conducted by Laura Sanders reported Tanzi’s responses to the following questions:

Do we now know what causes Alzheimer’s disease?

No. “It would be a complete fantasy to say that now we’ve solved Alzheimer’s based on this,” Tanzi says.  “People need to know that this was a small study…. It’s way too early to say that this result is valid.  We need to see many more samples. We need much more replication.”

Headlines that claim gum bacteria causes Alzheimer’s disease stretch the science way too far, he says. “It got out of hand. People should not be freaking out just because they didn’t floss enough. It doesn’t mean you’re going to get Alzheimer’s.”

But did it make sense to look at whether gum bacteria play a role in Alzheimer’s?

Yes. Tanzi and his colleagues suspect that Alzheimer’s is kicked off by brain inflammation, perhaps prodded along by bacteria, viruses or fungi. His team has been looking at large swaths of genetic material found in brains to figure out exactly which infectious entities might be in the brains of people with Alzheimer’s.

“We went in expecting to see periodontal bacteria in the brain. That was a leading hypothesis. One of the biggest pools of bacteria in your body lives in your gums if your gums are not clean. We expected to find them, but we didn’t.” (Those negative results, from dozens of brains, are unpublished.)

What you need to know

Periodontitis is the most common infectious inflammatory disease of humans. A recent survey in the USA concluded that 47.2% of adults aged 30 years and older had periodontitis. The disease is characterized by the loss of periodontal ligament, connective tissue, and alveolar bone, and is a major cause of tooth loss. 

Now we know that virulent strains of P. gingivalis can affect the central nervous system, which can result in Alzheimer’s and dementia. Although the research is still in its early stages, it’s a good idea to amp up your dental care and get thee to a dentist at least once a year for an exam and cleaning. It is certainly worth the bucks if it will help reduce your risk of Alzheimer’s disease. Don’t you think?

For more information about periodontal disease and why it’s important to floss please take a look at my previously published blog Do you still need to floss


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Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

12 ways to protect yourself and loved ones from Elder Abuse

senior woman with her hands signaling to stop over light backgroundWorld Elder Abuse Awareness Day is June 15th and according to the World Health Organization elder abuse is a violation of human rights and a significant cause of illness, injury, loss of productivity, isolation, and despair. It touches people across all socioeconomic groups, cultures, and races. But only about one in five cases is ever reported. People with dementia are particularly vulnerable because they are unable to recognize that they are being abused or to report it.

Also, people who have diminished eye sight or hearing, or are confined to a wheel chair are vulnerable. My friend’s father who has macular degeneration and is hearing impaired was scammed out of thousands of dollars by a caller who claimed that she was his niece. She claimed that she was being held in jail and needed bond money. This family emergency scam has been going on for years.

Verify an Emergency

If someone calls or sends a message claiming to be a family member or a friend desperate for money:

  • Resist the urge to act immediately, no matter how dramatic the story is.
  • Verify the person’s identity by asking questions that a stranger couldn’t possibly answer.
  • Call a phone number for your family member or friend that you know to be genuine.
  • Check the story out with someone else in your family or circle of friends, even if you’ve been told to keep it a secret.
  • Don’t wire money — or send a check or money order by overnight delivery or courier.
  • Report possible fraud at ftc.gov/complaint or by calling 1-877-FTC-HELP.

Another friend’s mother lived in Florida where she had round-the-clock nursing care in her own home. At the end of her life she suffered from dementia and was frail and bed-ridden. When Cheryl (name has been changed) went for a visit, she discovered that her mother had been cruelly beaten, and even though her two caregivers were women, it was apparent there she had been sexually abused. The poor woman’s genital area was swollen and bruised.

Physical abuse is not the only type of abuse targeted at the elderly. I know of two families who lost their inheritance because of financial fraud and theft. In one family the elderly father was cared for by a young woman who convinced him to marry her in order to be the beneficiary of his estate. The man’s family was unable to get a penny or access to the family home they had grown up in. Another elderly man assigned a trustee to overlook his financial affairs. The trustee stole his money and even though one of his adult children is a lawyer, the family was unable to recover a penny of their inheritance.

We’ve all heard of telephone scams in which a caller claims he is a jailed grandson who pleads with his grandparents to send bail money, or the IRS scam where the caller threatens severe consequences if the senior doesn’t pay tardy taxes.

These types of occurrences are all too common, especially in under staffed, under funded nursing homes.

Report abuse

Abuse can occur anywhere: at home, in nursing homes, and memory care homes. If you suspect abuse don’t hesitate to report it. You do not have to prove anything. It is up to the professional staff to investigate your suspicions, and put the proper safety measures in place.

Types of abuse

  • Physical–causing pain or injury
  • Neglect–failure to provide food, shelter, clothing, medical and other necessities required to provide a safe, nurturing environment
  • Emotional and Psychological—Verbal assaults, harassment, threats, intimidation
  • Confinement –restraining or isolating the person
  • Financial—Scams, misuse or withholding of the person’s financial resources to the disadvantage of the elderly person, and to the advantage of another person.
  • Deprivation—Denying the person medication, medical care, food, shelter or physical assistance
  • Sexual abuse –Any sexual activity, including fondling, when the person is unable to understand, unwilling to consent, or threatened or physically forced

Signs of abuse

  • Bruises, pressure marks, broken bones, abrasions and burns
  • Bruises around the breasts and genital area could indicate sexual abuse
  • Poor hygiene, bed sores, unattended medical needs, unusual weight loss
  • Sudden withdrawal from normal activities, unexpected depression, and a sudden change in alertness can be an indicator of emotional abuse. However, these symptoms can be the result of a progression of dementia or other disease.
  • Sudden changes in financial situation can be a result of exploitation.
  • Aggressive behavior from a caregiver or from the person being cared for can result in verbal or emotional abuse on either end.

Caregivers also are the recipients of abuse from the person they care for. If a caregiver feels physically threatened it’s important to get help in providing safe care for the person being cared for, possibly in a facility.

What can you do to protect yourself and your loved ones?

Report suspected mistreatment to your community’s Human Services Adult Protection agency and/or law enforcement office. Even if a situation has already been investigated, if you believe circumstances are getting worse, continue to speak out.

If you or others experience abuse or neglect in a community setting:

Adult Protective Services (APS) is there to help. The APS mission is to ensure the safety and well-being of elders and dependent adults. Unfortunately, it is estimated that millions of U.S. elders, from all walks of life, face abuse and neglect every year. Anyone can be victimized. However, there are things you can do to help protect yourself from abuse and neglect…

Human Services provides help with:

  • In-home assessment for abuse, neglect, and/or exploitation
  • Crisis intervention
  • Monthly visits by a case worker, if risk continues
  • Assistance with housing and/or placement to alternative housing
  • Assistance with obtaining benefits
  • Money management
  1. To report suspected abuse in a nursing home or long-term care facility, contact your local Long-Term Care Ombudsman. Each licensed long-term care facility is required to display a poster with the facility’s assigned ombudsman’s name and contact information. If you are a resident or family member of a resident in a facility, call the ombudsman listed on the poster. To learn more about the ombudsman program visit: Long-term care ombudsmen are advocates for residents of nursing homes, board and care homes and assisted living facilities. http://www.ltcombudsman.org
  2. Caregivers (both family and professionals) are most often the abusers of the elderly. Stress and feelings of being overwhelmed may provoke unintentional belligerent feelings. If you feel overwhelmed or frustrated as a caregiver, talk to someone for support.
  3. To speak with an Alzheimer’s Association Care Consultant call: 1-800-272-3900
  4. To find a support group in your area visit http://www.alz.org/apps/findus.asp
  5. To receive support from other caregivers visit https://www.alzconnected.org/
  6. To report an incident or concern of abuse or neglect, call the Alzheimer’s Association (1.800.272.3900) or Eldercare Locator (1.800.677.1116). You’ll be connected to your state or local adult protective services division or to a long-term care ombudsman. You do not need to prove that abuse is occurring — it is up to the professionals to investigate suspicions.
  7. Read more: http://www.alz.org/care/alzheimers-dementia-elder-abuse.asp#ixzz2W9DhCbSL
  8. Keep in contact. Talk with your older friends, neighbors, and relatives. Maintaining communication will help decrease isolation, a risk factor for mistreatment. It will also provide a chance to talk about any problems they may be experiencing.
  9. Join Ageless Alliancea national, non-profit grassroots organization working to promote aging with dignity and eliminate elder abuse, neglect and exploitation through Awareness, Advocacy and Action. Based at the Center of Excellence on Elder Abuse and Neglect at the University of California, Irvine, Ageless Alliance is a grassroots campaign to give a voice to those who have been affected by elder abuse and abuse of adults with disabilities.
  10. Plan ahead to protect against financial exploitation. Download a handout on ways to protect yourself or a loved one.http://www.ncea.aoa.gov/Resources/Publication/docs/NCEA_ProtectYourself_web508.pdf
  11. Be aware of the possibility of abuse. Look around and take note of what may be happening with your older neighbors and acquaintances. Do they seem lately to be withdrawn, nervous, fearful, sad, or anxious, especially around certain people, when they have not seemed so in the past?
  12. Contact your local Area Agency on Aging (AAA) office to identify local programs and sources of support, such as Meals on Wheels. These programs help elders to maintain health, well-being, and independence—a good defense against abuse. See the Eldercare Locator, www.eldercare.gov Welcome to the Eldercare Locator, a public service of the U.S. Administration on Aging connecting you to services for older adults and their families.You can also reach us at 1-800-677-1116.

Why you should throw away that antipsychotic drug prescribed for your loved one

Elderly woman taking a medicineAccording to Human Rights Watch in an average week, nursing facilities in the United States administer antipsychotic drugs to over 179,000 people who do not have diagnoses for which the drugs are approved. Often, these drugs are dispensed like candy, without free and informed consent. . . without a family member or someone who holds durable power of attorney for the health care resident, to make a decision based on the benefits and risks of taking the medication.

Like my late husband, most of the patients who are given these drugs have some form of dementia or Alzheimer’s.  My husband was in a memory care home for two years. Towards the end of his illness, he was given an antipsychotic drug because his behavior became “difficult.” He was not combative, and he was mostly non-ambulatory. Once, though, while sitting, he swung out his arm and hit a woman who was bothering him. Since I wasn’t there, I don’t know the details. But in general, he was a sweet man up until the end. He did get annoyed, however, by other residents’ behavior. And so he was given a drug to pacify him. After visiting him over a period of a few weeks and noticing the deterioration in his overall wellbeing, including his inability to hold his head up, sit upright, or staying awake most of the day, I demanded that he be taken off a number of drugs. The improvement was dramatic and astounding.

According to the US Government Accountability Office (GAO) analysis, facilities often use antipsychotic drugs to control common symptoms of Alzheimer’s. These drugs are associated with clinically significant adverse effects, including death. Then why are they being prescribed to an extremely vulnerable, frail and “at risk” population? Because disruptive behaviors such as crying out “help me, help me” over a long period of time, or yelling out profanities, or exhibiting aggressive behavior can become a nuisance that caregivers –professional and family–are either not skilled in addressing or are too busy taking care of other patients to be bothered with.

What are the alternatives?

First:

  • Eliminate noise and disruption.
  • Make sure the patient does not have a urinary tract infection.
  • Evaluate physical needs. Is s/he thirsty, hungry, constipated, etc?
  • Encourage the patient to verbalize feelings and needs, if possible.
  • Limit or reduce caffeine.
  • Reduce external stimuli (loud TV or radio, etc.).
  • Dim the lighting.
  • Avoid confrontation and use a soft, sweet speaking voice.
  • Provide companionship.
  • Identify events or issues that trigger behaviors.

Once you know the patient is safe and free from pain due to an infection, create a calm and beautiful environment.

Creating a beautiful space

  • Maintain a clean environment without clutter.
  • Enjoy a vase of fresh flowers.
  • Burn incense to clear and purify the air, unless the smoke or odor is irritating.
  • Paint the walls a color that rejuvenates the spirit. For instance, green is healing and relaxing, red restores vitality in people who are depressed, and purple is powerful for those who need spiritual and emotional healing.
  • Gather gemstones. They exert healing effects. Lithium quartz is said to ease tension and stress, and keep nightmares at bay. Pink Calcite promotes compassion, healing, and universal love. Amethyst is for protection, purification, and spiritual/divine connection.
  • Listening to calming sounds can relax a tense body within minutes. Consider a wind chime, water fountain, or a CD of singing birds, ocean waves, or falling rain.]
  • Use essential oils or aromatherapy to have a specific effect on the body, mind, and spirit. (See Aromatherapy, Chapter 18 in “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia.”)
  • Create an outdoor sacred space with river rocks, a koi or lily pond, a flowering tree or shrub, pampas grass, colored sand—the possibilities are endless.
  • Include religious symbols, chakra symbols, animal totems, prayer flags, angel statues, rainbow banners, and lamps with colored bulbs.

Herbal remedies

  • A nervine is a plant remedy that has a beneficial effect upon the nervous system.  Nervines are especially useful during times of stress because they have a strong relaxing and calming effect without producing a dulling, “hang-over” side effect.  They also tone and restore the nervous system to a more balanced state.  Some nervines are also anti-spasmodic, meaning they relax the peripheral nerves and the muscle tissue, which in turn has a relaxing effect on the whole system.
  • The main types of nervines are tonics, relaxants, and stimulants.
  • Nervine Tonics – are particularly helpful for strengthening the nervous system and restoring balance. In addition to having a relaxing effect, they have a vaso-dilating action on the blood vessels of the brain.  This increases oxygen availability to brain cells and helps with mental agility and mood.
  • Nervine Relaxants – are especially beneficial for short-term use, for example in treating mild depression or acute anxiety. “This group of nervines are most important in times of stress and confusion, alleviating many of the accompanying symptoms. They should always be used in a broad holistic way, not simply to tranquillize.  Too much tranquilizing, even that achieved through herbal medication, can in time deplete and weigh heavily on the whole nervous system,” says renown herbalist David Hoffman.
  • Nervine Stimulants– are used as a restorative “pick-me-up” when you need an energetic boost without that revved up feeling produced by caffeine.
  • Recommended nervines:
  • Passion flower- helps soothe anxiety, insomnia, tension headaches, muscle aches and spasms, pain, hyperactivity, epilepsy, and helps alleviate anger and lower blood pressure.
  • Skullcap – is antispasmodic and relaxing and is recommended to relieve headaches, mood swings, insomnia, premenstrual syndrome, and nervous tension and exhaustion.
  • The next time your loved one is  feeling nervous, agitated, restless or hyped up, try calming him/her with a nervine herb or aromatherapy. If your loved one is on medication, please check with the physician to make sure the drugs do not interact with the nervine herbs.

Other ways to help a person with dementia relax and feel calm without the use of antipsychotic drugs.

  • Aromatherapy
  • Music
  • Pet therapy
  • Horticulture therapy
  • Color therapy

For detailed information on all of the above, read  “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia”

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How to prevent people with Alzheimer’s from wandering

 

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Wandering is a common symptom of Alzheimer’s disease. More than 60% of memory loss patients wander at some point during the course of their illness.  A man at the memory care facility where my husband lived used to scale a 10-foot wall. Luckily, staff personnel were able to find him before he was harmed. But that is not always the case.

A neighbor of mine had the tragic experience of having her husband take the car keys, drive off to another state, and disappear. The car was found and he was not.

Who is at risk? Anyone with Alzheimer’s or dementia and is mobile is at risk for wandering.

Also, individuals who:

  • Live in a memory care home and want to go home or are waiting for a loved one to pick them up.
  • Live at home yet repeatedly say, “I want to go home.”
  • Come home from a walk around the neighborhood or a drive later than usual.
  • Don’t remember how to get to a familiar location.
  • Are nervous, anxious or disoriented when out in public , i.e. restaurant, grocery store, etc.
  • Pace or repeatedly try to find things or familiar rooms in a house.
  • Ask the whereabouts of friends and family.
  • Seem busily occupied but in actuality don’t get anything done, such as moving dirt around without planting or watering, or shoveling snow but not clearing off the sidewalk or driveway.

Ways to prevent wandering

  • If you care for your loved one at home, put the car keys in a secure place where only able, designated drivers have access to them.
  • Hang bells on the doorknobs of exterior doors to alert you when a door is opened.
  • Install new locks on the doors and windows that your loved one cannot open.
  • Remove items from sight such as shoes, hats, gloves, umbrellas, etc. that your loved one might associate with going outside.
  • Put a black rug in front of the door. To some people with dementia, this looks like a hole, which they will not cross.
  • Put a large sign on the inside of the exit door that says, “Stop” or “Do Not Enter.”
  • Do not argue with your loved one if he or she insists on going outside. Instead, walk with him or her down the hall, or redirect their attention to an activity. Mentioning the word “ice cream” often works like magic.
  • Avoid going to crowded places such as shopping malls.

Make a plan

  • Keep a list of places where your loved one might wander such as a past job location, previous home, restaurant, library, etc.
  • Alert your neighbors to the situation at home, and make sure they phone you if they see him or her unaccompanied outside.
  • Be aware if the person is left or right-handed because wandering usually follows the direction of the dominant hand.
  • Put a close-up photo and medical information in an easy-to-find location to give to the police.
  • Search the immediate area that the person has wandered off to for no more than 15 minutes. Then call “911” to report to the police that a person with Alzheimer’s disease or dementia —also referred to as a “vulnerable adult”–is missing. A Missing Report should be filed. Then the police will begin to search for the person.
  • Many local police departments have a Project Lifesaver GPS bracelet or Safe Return® bracelet that can track an Alzheimer’s patient.
  • The Alzheimer’s Association offers MedicAlert® + Alzheimer’s Association Safe Return®, a 24-hour nationwide emergency response service for individuals with Alzheimer’s or a related dementia who wander or have a medical emergency.

How it works

  1. If an individual with Alzheimer’s or a related dementia wanders and becomes lost, caregivers can call the 24-hour emergency response line (1.800.625.3780) to report it.
  2. A community support network will be activated, including local Alzheimer Association chapters and law enforcement agencies, to help reunite the person who wandered with the caregiver or a family member. With this service, critical medical information will be provided to emergency responders when needed.
  3. If a citizen or emergency personnel finds the person with dementia, they can call the toll-free number listed on the person’s MedicAlert + Safe Return ID jewelry. MedicAlert + Safe Return will notify the listed contacts, making sure the person is returned home.

Most importantly, stay calm and don’t panic. 94% of people who wander are found within 1.5 miles of where they disappeared. But it is important to begin the search and rescue efforts immediately.

Remember this: Prevent the danger that has not come. Be prepared.

For more great information about how you can reduce stress, feel happier, more energetic, healthier, deal with issues of grief and depression, and ultimately experience inner peace, read Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia.   Available on Amazon and at all bookstores that sell quality books.

BarbraCohn__

 

 

Is it time to take away the car keys?

Senior woman driving a car in traffic jamDeciding when to take the car keys away from someone with dementia is one of the most heart wrenching tasks that caregivers face. The milestone is a huge blow to the driver, who loses his/her independence, and to the caregiver, who is forced to take on even more responsibility. My husband never forgave me for taking away his car. He reminded me on a weekly basis that he was angry with me.

But according to a study at Florida Atlantic University, Boca Raton, FL, drivers diagnosed with early Alzheimer’s disease may be able to maintain their road skills over the course of a year if they are treated with Memantine.*  The study included 60 otherwise healthy men and women over 60 years of age, who had mild Alzheimer’s disease — defined as a Mini Mental State Examination score of at least 23. Twenty-nine participants completed six months of the program, and 25 completed the 12-month study.

Peter Holland, MD, lead author of the study, said that despite the small group of participants in the study his research team was able to show a statistically significant difference between the drivers who were on memantine and those who were on placebo. In an article written by Ed Susman for MedPage Today, Holland is quoted as saying, “We believe that adding Memantine to the drug regime is effective in delaying driving impairment in subjects with mild Alzheimer’s disease.”

An earlier study done at the University of Michigan in Ann Arbor assessed the driving skills of 17 people with a diagnosis of early stage dementia. Their cars were equipped with special instruments for the two-month study in order to analyze a set of driving behaviors that might be common among drivers with dementia. The memory-impaired individuals were able to drive as safely as the comparison group, but they were more likely to get lost.

Although some people with early stage Alzheimer’s disease are able to drive for a year or two after diagnosis, it’s imperative that caregivers continually assess their skills in order to ensure safety for the driver, passenger(s) and other drivers. If a person with Alzheimer’s disease is in a tragic automobile accident, the consequences can be emotionally, physically and financially catastrophic for the families involved.

When you are concerned about the safety of a memory-impaired driver

Dr. Jason Karlawish, associate director of the Memory Disorders Clinic and fellow of the Center for Bioethics at the University of Pennsylvania, said it helps to give dementia patients’ families some perspective.

“In my practice, I recommend that family members and friends ask themselves a simple question,” he said. “‘Would you let your relative with Alzheimer’s disease drive the grandchildren, or someone else’s grandchildren, to an event?’ If they answer to this is anything less than a simple ‘Yes,’ then it is sensible to consider at least a driving evaluation or even taking away the keys.”

 For caregivers, the question of when to take away the car keys is always a difficult one. Here are some resources that can help.

  • Make an appointment with your doctor and let him or her make the decision. Often the memory-impaired individual will listen more readily to a doctor than to a family member or friend.
  • Contact the Alzheimer’s Association® for help. 24/7 Helpline: 1-800-272-3900 or visit their site that specifically discusses Driving assessment.
  • The University of Michigan Transportation Research Institute and the UM Drive-Ability Program has published an excellent on-line driver evaluation test at: um-saferdriving.org. This is an excellent assessment of driving ability for seniors and those with early stage Alzheimer’s disease. The test can be completely in less than 30 minutes, with or without the help of a caregiver. Based on the answers, a report is instantly issued with health concerns the driver might be experiencing, i.e. reduced visual acuity, and a list of driving skills that might be affected by the health concerns, i.e. turning, yielding, etc. A list of recommendations for safer driving is given, along with a list of ways to modify the driver’s vehicle and other safety tips.
  • When Your Are Concerned: A Handbook for Families, Friends, and Caregivers Worried About the Safety of an Aging Driver (and Help Network) is an 8 chapter handbook available online. aging.state.ny.us/caring/concerned
  • How to Help an Older Driver is a 30-page booklet that provides readers with details of how age and medications affect a person’s driving skills, how to assess an older driver’s skills both through self-screening and by observing various factors, how to help an older driver by ensuring he or she exercises and sees a physician regularly, and what features to look for in choosing a car. It also provides a list of driver refresher courses and offers suggestions for how to help older drivers cope and plan for driving cessation, and how to overcome the fear of losing independence. Finally, it provides contact information for every state department of motor vehicles and lists of useful websites for aging drivers. Funded by AAA Foundation for Traffic Safety. aaafoundation.org

* Memantine is the first in a novel class of Alzheimer’s disease medications acting on the glutamatergic system by blocking NMDA-type glutamate receptors. It was first synthesized by Eli Lilly and Company in 1968. Memantine is marketed under the brands Axura and Akatinol by Merz, Namenda by Forest, Ebixa and Abixa by Lundbeck and Memox by Unipharm. Memantine has been shown to have a modest effect in moderate-to-severe Alzheimer’s disease and in dementia with Lewy bodies. Despite years of research, there is little evidence of effect in mild Alzheimer’s disease. (wikipedia)

If you’d like to read more articles like this, please subscribe to thehealthycaregiverblog.

If you would like to read about tools and techniques that can help you stay strong as a caregiver, reduce stress and support your immunity, read Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia

BarbraCohn__

10 Things to Remember if You Love a Person with Dementia

Assisting and helping elderly peopleToday is World Alzheimer’s Awareness Day. It’s a good day to repost this important article and to remind people about the book I wrote after caring for my husband who passsed away from younger-onset Alzheimer’s disease seven years ago. The book has helped so many people, which is what my intention was in writing it. “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia” contains a treasure trove of information on how to stay connected with your loved one, keep calm, improve immunity, reduce stress and feel happier and healthier. Plus, it includes 20 healing modalities that the caregiver can do alone or with their loved one. Available wherever fine books are sold and on Amazon.

It’s sometimes hard to love a family member who has dementia or Alzheimer’s disease. People with dementia can be quarrelsome, uncooperative, negative, whiney, belligerent or combative. They might get their nights and days mixed up, pace the floor for hours, wring their hands non-stop, or cry like a baby. They might ask you the same question twenty times in a row, refuse to budge when you need to get them to an appointment, or refuse to eat what you’ve made for dinner.

When the going gets tough, it helps to remember that you love the person who resides inside that body that is tight and tense and inflamed from amyloid plaque that has strangled the neurons and disrupted the neurotransmitters that allow thoughts to flow and emotions to stay even. He or she is the same person you married, the same loving parent who nurtured and guided you, the same sibling you shared holidays and outings with, or the same friend who offered a should to cry on or who helping you move to a new home.

When you’re about to lose it, walk out, or hide in the closet, stop for a moment and remember at least one of these 10 things about the person you lovingly take care of.

People with dementia and Alzheimer’s often feel:

  1. Embarrassed when you say, “ I just told you . . ..” Instead of reminding them that they forgot what you told them a second ago rephrase it, breaking it down into a simple sentence . . . or completely change the subject.
  2. Fearful because they don’t see things spatially the same way we do. Their sense of space is distorted and their vision gets skewed, not because there is something physically wrong with their eyes. But rather, the brain interprets what the eyes see, and when the brain doesn’t work right our perception gets distorted. Two things you can do to help are to put extra lights in dark areas of the living quarters and remove throw rugs in order to reduce falls.
  3. Lonely because they can’t communicate well, or some of their friends have “jumped ship.” Set up times for family or friends to visit or take your loved one on an outing.
  4. Confused because they don’t understand why they can’t drive anymore, or why they can’t go for a walk alone, or why they can’t remember where they live or what their son’s or daughter’s name is.
  5. Angry because the keys to the car have been taken away, or because they get frustrated when they can’t express their feelings or thoughts.
  6. Sad because they can’t read a book or newspaper, or can’t manage to engage in their favorite hobby or sport.
  7. Anxious because they can’t move as fast or get dressed by themselves or put on their shoes easily. Or, because they hear sounds that are disturbing or are bothered by someone else’s behavior.
  8. Nervous because they have lost their sense of balance and feel unsteady on their feet. Or because they don’t like the feel of water on their skin and don’t want to bathe and don’t want to be forced.
  9. Frustrated because they can’t write a check, figure out how much tip to leave, or remember how to use the TV remote control.
  10. Paranoid because they think someone is stealing their money or prized possessions.

When all else fails, take a deep breath and put on some music. It almost always uplifts the spirit—for both the caregiver and the person being cared for.

Please subscribe to my blog for more informative articles like this. Thank you!

12 ways to make sure your loved one is safe in a nursing home

 

Nurse serving food in nursing homeIt’s horrific and tragic that eight residents of a nursing home in Hollywood, Florida died this week as a result of dehydration, respiratory distress, and heat-related issues.  The nursing home administrator Jorge Carballo said “The Center and its medical and administrative staff diligently prepared for the impact of Hurricane Irma. We took part in emergency management preparedness calls with local and state emergency officials, other nursing homes and health regulators. In compliance with state regulations, the Center did have a generator on standby in the event it would be needed to power life safety systems. The Center also had seven days of food, water, ice and other supplies, including gas for the generator.”

But clearly something was wrong, very wrong. One man who learned about his mother’s death from a report said communication with the staff had always been difficult, so it did not strike him as unusual that his calls were not returned. Lack of communication is a big red flag.

My husband spent a little over two years in an assisted care facility, and my mother lived in a continuum care facility for seven years. Here is what I learned from my experience as the primary family caregiver responsible for making decisions about their care.

  1. If you anticipate that your loved one will be going into a nursing home or assisted living facility in the near future prepare months in advance. Visit a number of facilities in the area where s/he will live. Once you shorten the list to two or three, drop in unannounced so you can observe how the patients are treated. Supposedly, the best time to “drop in” is Saturday evening when there are fewer staff members around and visitors are not expected. Your senior services ombudsman will know which facilities have had complaints filed against them and can give you an idea of which ones to look at based on your family’s needs.
  2. Notice if residents are crying out for help, are in distress or appear dehydrated, and if their needs are attended to quickly. Be aware of odors (especially ammonia or urine) and whether the halls, dining areas, and residents’ rooms are clean.
  3. Once your loved one makes the transition into a home, get to know the staff—as intimately as your time allows. By making a personal connection with the people who care for your loved one, you will become more than a familiar face.  Professional caregivers make little income, have a huge responsibility, and are often the people who know best about the patient’s needs and status. These are people with families of their own. Ask about their child’s sports team or dance class. Ask about their grandchild’s birthday, etc. Your personal interest in their life will be appreciated and they will naturally develop an interest in your loved one and your family.
  4. A friend of mine visits his wife in a nursing home every single day, bringing her fresh berries or cut-up melon because the home doesn’t provide fresh fruit. It’s not practical for everyone to visit a loved one every day, but when you do, bring something nutritious such as fresh fruit instead of sweets. Fresh fruit is usually easy to eat and provides vitamins and antioxidants that help prevent colds and flues.
  5. Make sure water is provided throughout the day–not just that it is available but that it is offered. Seniors often lose the signal that they are thirsty and dehydration can be a serious problem for the frail and elderly.
  6. If your loved one is incontinent, make sure there are plenty of adult diapers in the room and that s/he is being changed regularly. Urinary tract infections are a serious problem with this population and staying dry and clean is a key to preventing them!
  7. Be on the alert for bruises or sores. A bed sore can lead to a systemic infection and death. Speak to the attending doctor or nurse immediately if you notice a sore that is not healing. A bruise can indicate that your loved one has fallen or, in the unlikely but not unheard event, that s/he has been abused.
  8. Sit with your loved one while s/he eats in the dining room. Is she able to feed herself or does she sit there not knowing what to do with her sandwich? If it is a problem, make arrangements with one of the staff to help her.
  9. Does your loved one require oxygen? Nursing homes are required to have generators in case of power outages such as during a hurricane. Familiarize yourself with the provider of the oxygen that your loved one receives and make sure the company is equipped to provide liquid oxygen for use when there is no power.
  10. Remove all loose rugs and obstacles in the room that your loved one might trip on. Also, place a lamp in easy reach of the bed so s/he doesn’t fall while trying to turn it off or on.
  11. My husband lost numerous pairs of glasses when he was in the assisted living home. Leave at least one extra pair with the floor nurse, and keep an extra pair at home.
  12. Know who to talk to if you have a question or concern. Over the years, I had to speak with the director of the facility where my mother lived several times. Don’t be shy and don’t be afraid of making a nuisance of yourself. Your family might be paying big bucks for the care you expect. If something is not agreeable to your loved one or your family speak up. Most of the time the director will be appreciative to hear your concerns and the matter will be quickly remedied. If not, contact the regulatory agency in your state to file a complaint. On this page you’ll find contact information for each state and territory. We provide information (where available) so that you can: 1) file a complaint about a nursing home; and 2) find additional nursing home information provided by a state.