Category Archives: memory care home

Is Palliative Care Right for Your Loved One?

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Woman comforting her unwell husband

When most people think about palliative care, they visualize someone who is suffering from pain, advanced cancer, COPD (congestive heart failure), or another fatal illness. Palliative care is specialized medical care for people also facing serious illnesses like dementia. The goal is to support the patient and the family on all levels, including physical, psychological, and spiritual.

What’s the difference between palliative care and hospice care?

Palliative care aims to ease pain and discomfort, reduce stress, and help patients —and their families— have the highest quality of life possible. Hospice care comes into play when a cure is no longer viable or when the treatment negatively outweighs the benefits. You can have palliative care at any stage of illness, along with other treatments.

Typically, with hospice curative medications or aggressive treatments for a patient’s illness are stopped. But not all medications are stopped. Medications that help relieve pain, nausea, anxiety and help a person breathe are an important part of hospice care.

In an article that appeared in Alzheimer’s TODAY (Volume 19, Number 1), Ann Wyatt, MSW, a leader in palliative care for people with dementia, says that people with dementia express their comfort and discomfort through their actions. It’s the caregiver’s responsibility to figure out the cause of the discomfort and help the person become more comfortable.

But that’s tough because dementia may prevent a person from communicating the source of distress. It’s usually not dementia that causes the distress, says Wyatt. (Although from my experience with my husband, his dementia caused frustration, anger, and irritability.)

Wyatt, says, “Most of the time it means that somebody is in pain or has some other discomfort. Dementia just means they can’t explain what it is.”

In a care facility, a resident might be given an antipsychotic drug to manage or misdirect behaviors that are perceived as aggressive. But the behavior might be a reaction to the person’s discomfort of being in a setting where schedules are instilled to provide efficiency and ease for the staff without considering the individual needs. For instance, a person who finds it hard to get up in the morning may exhibit “difficult behaviors” because they are woken early for breakfast or a shower, when they’d rather sleep in.

A personal anecdote

In my husband’s case, another resident occasionally, and mistakenly, walked into his room thinking it was his. My husband would shove him, and sometimes they got into a physical altercation. The situation was resolved when the other man was moved to the opposite side of the facility. This was a good example of palliative care. The caregivers removed the source of discomfort and stress for both residents (and families) by simply moving one resident to another area.

Simple ways to provide palliative care

  • Aromatherapy is a miracle cure for stress and anxiety. Use a wall plug-in to diffuse the aroma of lavender oil to uplift mood, or place a few drops on a handkerchief and tuck it into a shirt pocket or on a pillow. Other oils to try: vetiver, frankincense, myrrh, orange, lemon, bergamot, and grapefruit.
  • Play soothing music, and sing.
  • Speak softly.
  • Read to your loved one.
  • Use dimmed lights and/or battery-operated candles.
  • Beautify the environment with flowers.
  • Massage and/or physical touch is a wonderful way to ease everyone’s tension.

Getting palliative care

A palliative care team helps patients and families find ways to improve their quality of life whether that means moving to a skilled nursing facility or getting good home care. To find palliative care in your area visit https://getpalliativecare.org/howtoget/find-a-palliative-care-team/.

Download the free booklet Palliative Care for People with Dementia at caringkindnyc.org for excellent information about a comfort-focused care approach

For dozens more tools and techniques for reducing stress, uplifting mood, supporting your immune system and finding ways to connect on a spiritual and emotional level with the person you care for, read Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia.

Should you move your loved one to a memory care home?

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Forgetful senior with dementia

Moving my husband to a memory care home was the hardest thing I’ve ever done. But I knew that if I didn’t, I’d pay dearly with my own deteriorating health. After caring for Morris for 8 years, I was stressed and diagnosed with a serious disease. When I asked my doctor what he would do in my situation, he paused before saying “You need to take care of yourself.”

Morris was mostly able to take care of his personal hygiene, with some help in the shower, etc. But he wasn’t able to drive, and he needed help getting dressed. He could feed himself if I put the food in front of him. He still enjoyed watching movies, although I’m sure he couldn’t follow the plot. He liked being taken out to lunch, but he couldn’t read a menu. In other words, he needed a lot of help. I didn’t feel that he was a danger to himself or to me, but I didn’t leave him alone in the house for more than a quick trip to the grocery store. However, I was burned out and had received a diagnosis that no one ever wants to hear — the kind that requires a lot of self-care, rest, and good nutrition.

So I was relieved to learn that our spot on the waiting list at my chosen memory care home was towards the top of the list. And I was especially glad, thanks to my therapist’s advice, that I had looked for a place the previous year so that in case of an emergency I didn’t have to frantically scramble to find a home for my husband . . . a place where I felt confident that the caregivers would treat him with kindness, compassion, and respect.

How do you know when it’s time to move someone to a long-term facility?

Of course, every situation is unique, especially since no two dementia patients or families are alike. Some families consist of an elderly couple who live by themselves with no family nearby. A person with dementia may live on their own. Or an older parent may be looked after by an adult child or grandchild who lives nearby or in another state. But in every case, it’s vital to have safety measures in place. That may involve moving the person with dementia into a family member’s home or into a long-term care facility. Families that have several siblings — adult children of the affected parent — share the caring responsibility by having the parent rotate throughout the year, staying with each child for a few months at a time.

Here are some indications of when it’s time to make that move

  • The caregiver is burned out and stress is affecting his/her mental, emotional, and physical health.
  • When it becomes obvious that the person being cared for is unable to take care of their basic needs.
  • S/he wanders off and doesn’t know how to get back home.
  • S/he is isolated, lonely, and depressed.
  • Your loved one is angry and verbally or physically abusive.
  • S/he has mobility issues and tends to fall.
  • The person with dementia has Sundowner’s syndrome and gets agitated at the end of the day. This is a sign that they are becoming unable to live alone.

Making the decision to move a loved one into a memory care home is one of the hardest decisions you will ever make. Just remember that when you’re a caregiver for someone with dementia, it’s important to take care of yourself, too. Because if you don’t and you get sick, then who will take care of you?

Take the advice of my therapist and start looking for a home where your loved one will be well cared for. Or have a family meeting and make a caregiving plan that suits everyone. Here are a couple of other blogs that may be helpful. https://barbracohn.com/2019/08/03/the-20-most-important-things-to-consider-when-looking-for-a-memory-care-home/

https://barbracohn.com/2013/04/03/is-it-is-it-time-to-move-your-loved-one-to-a-memory-care-home/

Please be gentle with yourself.

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: TheCaregiver’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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

The memory care home wants to evict my loved one! What should I do?

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Caregiver yelling at man in wheel-chair

Sometimes a person with dementia will act out and strike the person who just happens to walk by, or the person who accidentally walks into their room. Or, the aggressor might bite another person. Aggressive behaviors aren’t that unusual, but sometimes they get out of control. If they continue, the director of the memory care home will give the family a warning, and if the behavior isn’t resolved, the patient may be asked to leave.

Before things get out of control, there are modalities that can be used to help calm things down. Please read Chapter 18 “Aromatherapy” in Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia by Barbra Cohn (see below) on how essential oils can immediately diffuse a tense situation. The book contains 19 other healing modalities that really do work.

In our case, the care facility wanted my husband to leave because he became too needy. Even though the director assured me that the facility would be able to take care of him to the end of his Alzheimer’s journey when I signed the contract for him to move in, that’s not what happened.

After Morris had surgery for a kidney stone, he was unable to walk or toilet by himself. He couldn’t do much of anything anymore. He stopped talking and couldn’t feed himself. The facility where he had been for two years refused to accept him back from the hospital. The hospital discharged him on a Friday afternoon and we had to scramble for a facility that would take him. It was stressful and the new facility was awful. I begged the home where he had been to take him back, and they agreed, but with a big caveat. I had to hire a care person to be with Morris one-on-one because the facility didn’t have the staff to give him the extra care that he needed.

We hired extra care, but the cost became prohibitive. I moved Morris for the third time in four weeks to a different facility that specialized in end-stage Alzheimer’s. It was the perfect decision. He died there two weeks later, after having compassionate end-of-life care.

If things hadn’t gotten so crazy, and my husband hadn’t deteriorated as quickly as he did, I would have called my ombudsman to help me communicate with the first memory care home’s director. Her refusal to take Morris back after his hospitalization was virtually the same as kicking him out, and it was contrary to what was promised when I signed the initial contract: that they’d care for him until the end.

Contact your ombudsman

If you have any similar issues, contact your ombudsman. An ombudsman is someone who advocates for the health, safety, and rights of individuals in long-term facilities (LTC), and ensures that the residents are protected by the standards required under the Nursing Home Reform Law of 1987. Under the federal Older Americans Act, every state is required to have an Ombudsman Program that addresses complaints and advocates for improvements in the long-term care system. 

Unlawful evictions are one of the major complaints that an ombudsman deals with. The ombudsman will

If you can’t resolve a conflict or your concerns with the director of the facility or are uncomfortable, you can contact your ombudsman to:

  • Investigate suspected abuse (mental, physical, and emotional) of your loved one
  • Review inadequate staffing or training that should meet the level of care expected and promised
  • Discuss and resolve grievances that you and the staff have
  • Learn about your options and legal rights

Who can use an Ombudsman?

  • Residents of any nursing home or board and care facility, including assisted living facilities
  • A family member or friend of a nursing home resident
  • A nursing home administrator or employee with a concern about a resident at their facility
  • Any individual or citizen’s group interested in the welfare of residents
  • Individuals and families who are considering long-term care placement

How do I contact my Ombudsman?

Residential care communities must post the area’s ombudsman program contact information and responsibilities. You can also search for your state’s ombudsman by visiting the Elder Care Locator website (eldercare.acl.gov) or contact the Alzheimer’s Foundation of America’s (AFA) Helpline – 866-232-8484.

What if my loved one is asked to leave because of aggressive behavior?

First, try to figure out why your loved one is acting out. Does s/he have a urinary tract infection? Is s/he in pain because of a tooth abscess? Have a physician do a complete physical exam to rule out pain. Your loved one may be unable to articulate what is bothering them.

Be on the lookout for bruises, bedsores, stomach upset, missing personal items such as eyeglasses, or anything else that may be the cause of a change in behavior. Is another resident walking into your loved one’s room accidentally? Is loud music being played in the dining room? What about community TV shows? Are they violent, disturbing, or too loud?

Sadly, residents who have behavior issues are often given medications to control their outbursts. Try everything you can before resorting to those. My husband was given a sedating drug at one point and he became catatonic. As soon as I ordered the doctor to take him off the drug, Morris quickly reverted to his usual, pleasant self. When he would start to show agitation, I’d plug in an aromatherapy diffuser with a blend of oils that immediately calmed him down.

Essential oils can diffuse feelings of sadness, depression, anxiety, etc. Lavender oil is the most frequently used fragrance. You can also try bergamot, grapefruit, lemon, orange, clary sage, geranium, rose, and ylang-ylang, frankincense, and myrrh. Put the oil in a diffuser or spray bottle to mist your loved one’s collar or pillow. Find a fragrance that is pleasing to them.

It’s always in everyone’s best interest to try to solve things amicably. An attorney can help review your contract with the facility, especially when it comes to involuntary transfers and aggressive behavior. But hopefully, the situation won’t get to that point.

All the best to you in the new year,

Barbra

Calmer WatersAbout Barbra

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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

How in the World Will I Pay for Long-term Caregiving?

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Financial planning is an important factor in long-term caregiving.

Having a long-term caregiving plan is a must for family caregivers, especially if their loved one has Alzheimer’s disease or other chronic health conditions. In 2018, the Alzheimer’s Association estimated that the total lifetime cost of care for someone with dementia was  $341,840.

When we placed my husband in a memory care home in 2008, it cost roughly $6,000 a month, which covered a private room and extras like a weekly massage. Everything is more expensive today. The Alzheimer’s Association lists the following median costs for long-term care services in 2021. From what I’ve seen, the costs are typically higher on the East and West Coasts and lower in rural towns, and in the Midwest, the South, and western states.

  • Home care: A paid non-medical home health aide is $24 per hour and $960 per week (40 hours of care).
  • Adult day services: $74 per day.
  • Assisted living facilities: $4,300 per month or $51,600.
  • Private room in a nursing home: $290 per day or $105,850 per year.
  • Semi-private room in a nursing home: $225 per day or $93,075 per year. https://www.genworth.com/aging-and-you/finances/cost-of-care.html

What’s the difference between assisted living and a nursing home?

By the time a person with dementia is ready for a care facility, they need lots of assistance so it’s best to consider a home that offers memory care in a locked-down environment. Locked-down isn’t as bad as it sounds. It just means that the residents can’t leave the facility and wander off and get lost. The exterior doors are locked, but residents are usually free to roam the halls and go in and out of their rooms and living areas.

An assisted living home offers some care such as transportation to doctor appointments and help taking medications. And some offer designated living areas for people with dementia. But generally, residents in assisted living facilities are in fairly good health and are able to take care of their personal needs.

A nursing home provides medical care 24 hours a day. Meals are prepared by the staff, residents usually eat in a dining room, or in their own room, and care is provided ranging from help getting dressed and bathing, to rehabilitation from a fall or bone breakage.

People with dementia and Alzheimer’s disease are usually placed in memory care homes that cater to their particular needs. Memory care homes aren’t exactly nursing homes because not everyone with dementia has another physical illness. But the cost is comparable to that of a nursing home because of the amount of hands-on care that is needed, which includes bathing, brushing teeth and getting dressed, toileting, etc.

Consider respite care

Respite care provides short-term relief for primary caregivers. It can be a life savior when you’re at your wit’s end and “just can’t take it anymore.” There’s no need to feel guilty. All caregivers need a break in order to recharge, destress, and take care of their own needs—which is crucial to staying healthy.

Respite care can be provided at home, in a healthcare facility, or at an adult day center. It can be arranged for a few hours or for several days or weeks. For more information about respite care: https://www.nia.nih.gov/health/what-respite-care, https://archrespite.org/respitelocator

Financial help

As soon as you or a loved one is diagnosed with Alzheimer’s, or other dementia or chronic disease, make an appointment to see an elder attorney. They will inform you of your options and help with long-term planning.

For instance, in Colorado, in 2020, one month in a nursing home costs nearly $9,000. That’s more than $100,000 over the course of a year. Many elderly individuals spend down their life savings on nursing home costs so they can eventually qualify for financial assistance

If both spouses are living, and one of them is healthy, the healthy spouse can be left with little money on which to survive. An elder law attorney can help families avoid this unfortunate, but common, scenario.

The Community Spouse Resource Allowance is useful when there is concern the couple has too many assets to receive financial assistance from Medicaid to pay for long-term care. This particular allowance lets the healthy spouse keep a portion of the joint assets, up to $128,640 in 2020.

Another allowance, the Minimum Monthly Maintenance Needs Allowance, or MMMNA, lets a healthy spouse retain part of their ill spouse’s monthly income. ps://www.robinsonandhenry.com/colorado/estate-planning/medicaid-planning/?utm_term=&utm_campaign=&utm_source=adwords&utm_medium=ppc&hsa_tgt=&hsa_grp=&hsa_src=x&hsa_net=adwords&hsa_mt=&hsa_ver=3&hsa_ad=&hsa_acc=4376139444&hsa_kw=&hsa_cam=14487629423&gclid=Cj0KCQiAhMOMBhDhARIsAPVml-HXnbFv18MpGCumQd7lKb5xGoJ36cvPNwcdGqRFpgnWq63lYsSAYAkaAnCaEALw_wcB

If you plan to hire an elder attorney, please check reviews and ask for referrals for a competent elder attorney. Unfortunately, the elder attorney I hired made a mess of things for me and my family, and I had to hire an additional attorney to straighten things out.

Other options

• Call 800.827. 1000 or visit http://www.va.gov. In addition to Medicare, the person with dementia may qualify for a number of public programs. These programs provide income support or long-term care services to people who are eligible.

• Contact your local family and senior services office. They can provide you with information about help in the home, long-term care options, legal support, Medicare and Medicaid, public assistance benefits, services, and programs, guidance, and tips on accessing services, caregiver support training, and more.

• Contact your local Alzheimer’s Association for information about services and support groups. They offer classes for caregiving on everything ranging from financial planning to how to get your loved one to take a shower. https://www.alz.org/

Taking time for yourself

Caregivers get burned out if they don’t take some time off to recharge. And in the worst-case scenarios, caregivers end up being sick and having to be taken care of. If you don’t take care of yourself, who will take care of the person you were lovingly taking care of?

Here are links to a couple of articles I posted on this blog about ways that caregivers can achieve more peace and less stress. https://archrespite.org/respitelocator, https://barbracohn.com/2020/06/23/20-natural-remedies-for-depressed-caregivers-and-everyone-else/

Have a safe, satisfying, and stress-free (as much as possible) Thanksgiving. And please take a little respite time for yourself, even if that entails just walking around the block for 30 minutes.

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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

The best gifts for your Alzheimer’s loved one

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Instead of worrying about what to give a friend or loved one who suffers from Alzheimer’s disease or dementia consider this. What that person really wants more than anything is to just be with you.

But this holiday season is going to be very different. If your loved one is in a memory care home, you probably won’t be able to visit them. If you can stand outside their window you could play their favorite music on your phone, or if you’re a musician you could sing or play an instrument. Or, eat a favorite dessert together, even if it’s through glass, and it’s not freezing cold.

Here’s a general list of gifts for dementia and Alzheimer’s patients, no matter where they live. Of course, the stage of the disease will determine the gift that is most appropriate.

  • A soft bathrobe or blanket in a color they love
  • A CD with their favorite music
  • A digital photo frame.
  • Non-skid slipper socks.
  • Books in large print or audio books if the person is still able to follow and/or read.
  • Poker chips that can be sorted and counted.
  • Non-toxic modeling clay or PlayDoh
  • Water-based paints, brushes and paper
  • An aquarium, if someone else can take the responsibility to feed the fish
  • A terrarium or beautiful plant
  • Easy puzzles, word search books, etc.
  • Plastic nuts and bolts sets
  • Weighted blanket
  • Doll or stuffed animal

If your loved one lives with you and you are the primary caregiver, here are activities to do together.

  1. People with dementia love ice cream. Share a pint of his or her favorite. Bring the toppings and arrange them on a table in little bowls—sprinkles, chocolate chips, chopped fruit, whipped cream, butterscotch or chocolate sauce, etc.
  2. Watch a comedy together. It doesn’t matter if your loved one can follow the plot or not. If you laugh, he or she will probably join in the merriment. Laughter triggers the production of endorphins; the brain chemicals that reduce the sensation of pain and make you feel good.
  3. Listen to music together. Put on a CD and sing together. Big Band Music is usually a hit with most 70, 80 and 90 year olds. If your loved one is younger, you can try classic rock.
  4. Get out the paint brush, paper and water colors. You don’t have to be an artist or art teacher to have fun with your loved one. Painting and drawing is a great way to share time together, and to even express feelings of frustration, irritation and fear—on paper.
  5. Dance to the music. If your loved one is still mobile help him or her get up and move. The exercise will enhance memories, even if temporarily. A short surge of condensed exercise boosts the compression of memories in both elders in good mental shape as well as those with slight cognitive impairment, according to new research by a team of scientists from UC Irvine’s Center for the Neurobiology of Learning & Memory.http://www.cnlm.uci.edu/ If the person is in a wheel chair, move his or her arms to the rhythm.
  6. Go for a drive and get some fresh air. Just getting out of the house does a body good and uplifts the spirit.
  7. Hold hands, give a foot massage. Use aromatherapy oils (see chapter 18 “Aromatherapy” in The Caregiver’s Journey Through Alzheimer’s and Dementia
  8. Create a book of photos that depict your loved one’s life and share memories without saying “remember when. . .”
  9. Share a special meal together and set the mood with candles and music.
  10. Just breathe together and be still in the silence. It’s the greatest gift of all.

Whatever you do, I wish you and your loved ones a peaceful holiday season. Be safe, wear a mask whenever you leave the house, and please be careful.

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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.


Should you move a family member back home from a care facility?

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I'll have to learn to walk againAccording to the New York Times (April 17, 2020), about a fifth of U.S. virus deaths are linked to nursing homes and other long-term care facilities. That’s about 7,000 people.

It’s an extremely difficult time for families who have a loved one in a care facility. You’re not able to visit, and you and your loved one might be missing the physical touch that we as humans crave.  You might be too overwhelmed with caring for others at home to make the drive to the care facility, only to be allowed to peer through a window and touch hands separated by glass.

Two of my friends recently lost a parent who was in a nursing facility. Their parents didn’t die from Covid-19. One died from Alzheimer’s (yes, Alzheimer’s is a fatal disease) and the other had dementia and was recovering from a broken pelvis. Neither friend was able to get to the facility in time to say good-bye, partly because of the imposed lock-down on these facilities.

You might be worried that your loved one will contract Covid-19. What should you do?

Should you move your loved one home?

  • Consider why you moved your loved one to a care facility in the first place. Are you able to safely care for him/her at home?
  • How is your health? Have you been sick? Do you have a chronic condition that prevents you from taking on added stress?
  • Are you overwhelmed caring for children who are doing online schooling?
  • Are you working from home?
  • Is your loved one mobile? Continent? Can you bathe and dress him/her? Do they need a two-person transfer?
  • Can you hire in-home care? This option comes with the risk of having an outsider who has possibly been exposed to Covid-19 come into your home.
  • A person with dementia might have compounded anxiety during the pandemic. Anxiety increases when a person with dementia has their routine disrupted. The individual may not be able to understand what is going on, but pick up on the stress of those around him/her. Would you have the patience and time to devote to caring for such an individual?
  • Be honest with yourself, and consider your own health, psychology and emotional well-being.

If moving your loved one is out of the questions, consider these tips from The Alzheimer’s Association.

If your loved one is in a care facility:

By now, almost all care facilities are not allowing visitors through the door. 

  • Check with the facility regarding their procedures for managing COVID-19 risk. Ensure they have your emergency contact information and the information of another family member or friend as a backup.
  • Do not visit your family member if you have any signs or symptoms of illness.
  • Depending on the situation in your local area, facilities may limit or not allow visitors. This is to protect the residents but it can be difficult if you are unable to see your family member.
  • If visitation is not allowed, ask the facility how you can have contact with your family member. Options include telephone calls, video chats or even emails to check in.
  • If your family member is unable to engage in calls or video chats, ask the facility how you can keep in touch with facility staff in order to get updates.

What if the care facility has or had Covid-19 incidences?

  • Ask the facility about their quarantine procedures. What is your level of confidence that CDC guidelines are being followed?
  • How many people in the facility have been impacted by COVID-19? Are those affected staff, residents or both?
  • Is your family member able to follow social distancing procedures (with or without help)?
    • In some cases, the person may not be able to walk or move about on their own. This could help maintain social distancing.
  • Does the facility have and use personal protective equipment?
  • How many staff members interact with your family member on a regular basis? Is the facility able to limit the number of staff who work with your family member?
  • Is the facility adequately staffed to provide the level of care your family member requires?

The Centers for Disease Control has issued these guidelines for nursing home visitation in the wake of the COVID-19 outbreak:

Limiting Visitation: For facilities that are in counties, or counties adjacent to other counties where a COVID-19 case has occurred, we recommend limiting visitation (except in certain situations as indicated above). For example, a daughter who visits her mother every Monday, would cease these visits, and limit her visits to only those situations when her mom has a significant issue. Also, during the visit, the daughter would limit her contact with her mother and only meet with her in her room or a place the facility has specifically dedicated for visits.

Facilities should actively screen and restrict visitation by those who meet the following criteria: 1. Signs or symptoms of a respiratory infection, such as fever, cough, shortness of breath, or sore throat. 2. In the last 14 days, has had contact with someone with a confirmed diagnosis of COVID19, or under investigation for COVID-19, or are ill with respiratory illness. 3. International travel within the last 14 days to countries with sustained community transmission. 4. Residing in a community where community-based spread of COVID-19 is occurring.

Be kind to yourself, and try not to feel guilty about not being able to visit your loved one. Caregiver guilt is complicated, but you are probably doing the best that you can.

This pandemic lock-down is unprecedented. Hopefully, the restrictions will lift soon and you’ll be able to be with your loved one again. Until then, take extra good care of yourself.

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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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

What if your dementia patient becomes abusive, aggressive or violent?

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Angry, enraged senior woman yelling at a landline office phone, unhappy with customer service provided by the agent on the other side, giving off steam and smokeMy husband Morris was a gentle man. But occasionally, if things didn’t go his way, he would get nasty. Once Alzheimer’s took his brain hostage, he exhibited a darker side. But only when he was frustrated or confused.

Morris spent the last two years of his life in a memory care home. He was popular among the staff because he liked to goof around. When he walked the halls listening to music on his Walkman, he’d have a smile on his face and swagger to the rhythm. But if another resident got in his way, watch out. If it was crowded in the dining room and someone accidentally bumped him, he’d swing his arm out to shoo that person away. When one of his neighbors walked into Morris’s room mistaking it for his own, the two got into a rumble on the bed and fought like school boys. After this happened a couple more times, the neighbor was moved to the opposite side of the facility.

When Morris hit a resident in the dining room, the on-call physician prescribed a depressant to “calm him down.” Morris reacted to the drug by transforming into a zombie who slumped in his chair and slept too many hours during the day. I insisted that he get off the drug and Morris returned to his mostly cheerful self.

I once had a next door neighbor whose wife had Alzheimer’s. She threatened to kill her husband with a knife and then went on to slash a painting hanging in their living room. Was she or Morris responsible for their actions? No. A person with dementia is not responsible for acts of violence because as the disease progresses, neurons in the cortex that are responsible for language, reasoning and social behavior are destroyed. This leads to some Alzheimer’s patients engaging in aggressive or violent behavior such as biting, kicking, spitting, slapping, punching, and/or using foul language.

Research from the National Institutes of Health indicates that up to 96 percent of patients with dementia who were studied over a 10-year-period exhibited aggressive behavior at one time or other. In 2011, CNN Health reported that 5 to 10 percent of Alzheimer’s patients exhibit violent behavior at some point during the course of the disease.

There is usually a reason for aggressive behavior.

What to watch out for

  • Urinary tract infection
  • Pain or stress
  • Loneliness, depression
  • Too much noise or stimulation
  • Boredom
  • Constipation
  • Soiled diaper or underwear
  • Uncomfortable room temperature
  • Physical discomfort (stomach ache, etc)
  • Confusion
  • Anger about loss of freedom (to drive, living independently)
  • Drug reaction or contra-indication
  • Resistance against being told what to do such as bathing
  • Sudden change in routine, environment or caregiver
  • Communication problems
  • Hunger or not liking the food
  • Dehydration

What to do

  1. If your life or the life of the person you care for is in danger, get help immediately!
  2. The Alzheimer’s Association has a 24-hour helpline at 800-272-3900.
  3. Rule out UTIs, pain, discomfort, etc.
  4. Use an essential oil to help calm the person down. When my husband got agitated I’d put a few drops of oil on a cotton pad inside a diffuser and plug it into the wall. He usually calmed down immediately.  The following oils can be used in a diffuser, or put in a bath or fragrance free moisturizer. They can also be sprayed on a pillow or handkerchief. Citrus oils are generally refreshing and uplifting for the mind and emotions, relieve stress and anxiety, and are useful for odor management and appetite support. Consider: bergamot, grapefruit, lemon, and orange. Floral oils are often used as a personal fragrance and are useful to relieve anxiety, depression, and irritability. These oils are useful as an inhaler, in a body lotion, and for the bath. Consider: clary sage, geranium, lavender, rose, and ylang ylang. Tree oils are revitalizing with immune boosting properties, ease respiratory congestion, and are supportive to breathing ease. They are useful for pain relief, skin infections, and odor management, and can relieve nervous exhaustion and depression. Consider: eucalyptus (Eucalytpus citriodora or globulus), pine needle, sandalwood, or Tea Tree.
  5. Reassure your patient by speaking gently and calmly.
  6. Play calming music, i.e. Mozart
  7. Try to distract the person with a TV show, favorite snack (ice cream almost always works), or a walk outside.
  8. Maintain a regular routine.
  9. Make sure the lighting is suitable in the home or facility.
  10. Help the person to maintain as much dignity and independence as possible.
  11. Make sure the person is eating a nutritious low-sugar, low-salt diet, with no or very limited amounts of alcohol and caffeine.

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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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Caring for a Parent who is Resistant to Care

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Upset womanIt’s typical for our parents to resist moving out of their homes if they need to be cared for or need assistance in a long-term care facility. They may think their children are bossy and forcing them into a situation they didn’t choose. People, in general, are also often resistant to having an aid or personal carer other than family in their home.

A friend of mine had to move his parents, who were no longer able to care for themselves, into an assisted living facility. His mom had broken her hip and his dad was blind. After spending a couple of weeks settling them into their new home, David’s mom accused him of kidnapping her and his dad. In the end, after David returned home, his parents found a way to move back into their condo. There are bad feelings on both sides and now David and his parents are not speaking.

When the roles of parent and child are reversed, awkward moments and emotions can arise. The adult child may feel resentment at having to provide support and/or care for the parents because the extra time detracts from his or her normal routine and work schedule. Sometimes there is a financial burden placed on the adult child. The parents may feel disempowered when their freedoms are limited or taken away. They may feel financially stressed, and not want to “be a burden.”

Here are some ways to help you navigate this touchy and stressful subject.

  • Talk with your parents’ Primary Care Physician to get a clear picture of their physical needs.
  • Although you want your parents to be safe, above all else, respect their perspective and autonomy. Listen with an open heart and mind, and share your concerns. Tell them you know that this is hard, and that you are concerned about their welfare and safety.
  • Validate their feelings. Ask non-threatening, open-ended questions about the type of care they might be willing to accept. “Mom, wouldn’t it be great if you didn’t have to cook or do laundry anymore?” “Dad, do you miss having coffee out with your friends?” Their answers will provide you with the opening to a discussion about how a caregiver or assisted living situation can make their lives, and yours, easier.
  • If finances are an issue try to enlist the help of a close friend, neighbor or family member once or twice a week for a couple of hours to assist with meal preparation, etc.
  • If this works and your folks get accustomed to having someone in their home, hire a caregiver agency to provide more care as needed.

What if you’ve tried everything you can think of and your parent is still resistant to help. Or what if your sibling wreaks havoc on what you’ve done?

If you sincerely believe that your parent’s behavior is contrary to what they typically exhibited previously; if they are unsafe in their home or are a danger to them self or others; if you have considered their dignity with respect, and you believe that their mental capacity is impaired as well as their decision making, you can activate a Medical Power of Attorney (MDPOA).

This is a legal document that authorizes someone to make medical decisions on behalf of another, only if one is already in place. If one is not in place and things are getting dire, consult with an elder attorney to determine if it makes sense to have a court appointed guardianship. This would be a last resort.

Most importantly, treat your parents with respect and honor their wishes the best that you can, always keeping their safety as a priority. Most everyone wants to stay in their home as long as possible. It’s hard bringing up this topic with our parents, but the earlier the better, especially when one of your loved one has dementia.

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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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

 

 

 

 

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

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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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.