The Whitworths of Arizona, bringing science to you in everyday language.

Friday, December 15, 2017

EASEE Holiday Hints

Holidays can be meaningful, enriching times for both the person living with dementia (PlwD) and the whole family. Maintaining family rituals and traditions helps all family members feel a sense of belonging and family identity. However, some of these can be difficult for anyone with sight or sound sensitivities. Some can be confusing for a person who needs continuity and sameness to feel safe. And some can even be frightening for the person who feels lost in all the temporary changes.

As for care partners, your already heavy load may get heavier when you add holiday chores like sending out cards and hosting family visitors. How do you balance it all? How can you keep the feeling of tradition and family but save your own sanity and protect the PlwD as well?

Here are some hints for helping you celebrate the holidays that are important to you and include the PlwD as much as possible, using EASEE (encourage, simplify, adapt, explain and enjoy).

Visitors:

Encourage: Encourage friends and family to visit even if it’s difficult. Being social is an important part of dementia care, for both the PlwD and for you.

Adapt: You may not be able to do things you've always done the way you've always done them. Choose alternatives, such as asking family to stay elsewhere while they visit, or dinner out instead of a big family meal at home.

Simplify: Set limits so that you aren't overworked and the PlwD isn't overwhelmed. Limit the number of visitors at any one time, or have a few people visit quietly with the PlwD in a separate room.

Explain: Be clear about what your limits are, what you can and can't do, and what works best with the PlwD. This is especially important with visitors who haven't seen the PlwD for a while, or have only seen the PlwD during a LBD Showtime, where they appeared much more able than they usually are.

Enjoy: Give yourself time and permission to relax and enjoy your visitors. Remember the less stress you have the less stress the PlwD will feel. Make sure the PlwD has a quiet space to escape to when they get overstimulated.

Preparations:

Encourage: Encourage the PlwD to participate in the preparations, which will foster valuable feelings of usefulness and togetherness. Even when they can't help, observing will familiarize them with the upcoming festivities.

Adapt: Change your usual preparations to be less work intensive. For example, instead of decorating a tree, hang a knitted or macraméd tree on the wall or  scatter a few decorations on tables and shelves.

Simplify: Limit what you do. Not only will your workload be less, but the PlwD will be able to participate more. How much cooking do you really need to do? Which tasks, such as sending cards can be limited or deleted?

Explain: When it isn't possible for your PlwD to participate in the preparation, just observing as you talk about what you are doing and what it means to you will help to familiarize them with the upcoming festivities. To help the PlwD recognize an expected guest, begin showing a photo of a guest week before arrival. Each day, explain who the visitor is while showing the photo. To help a visitor know what to expect from the PlwD, arrange a phone call between the visitor and the PlwD. This is also another opportunity for the PlwD to become familiar with the visitor.

Enjoy: Focus on the joy of the season and take time to truly enjoy it. Help your PlwD to feel the fun of anticipation, the togetherness with friends and family, and to reminisce about past times. Include quiet distractions such as a family photo album for times when the PlwD feels upset, anxious or just needs a break.

Activities

Encourage: Encourage yourself! If you are invited to celebrations that the PlwD cannot attend, go yourself. Ask a friend or family member to spend time with the person while you’re out.

Adapt: Chose activities for the PlwD where there is less likelihood of loud conversations or other loud noises. Adjust your lighting so that it isn't too bright or too dark. Replace rich foods with healthier ones and limit alcohol.

Simplify: Limit the number of activities, choose those with smaller groups and avoid crowds.

Explain: When in a group of people who have not been around your PlwD at all or later, you may need to explain about the disease what they might expect, such as the PlwD being unable to know what is expected or acceptable. Warn people that the disease may have taken away the PlwD's ability to know them but that the PlwD can enjoy their company anyway. Unwarned, it can be quite painful to discover that a once loving relative doesn't recognize you.

Enjoy: To help the PlwD the enjoy holidays and holiday visitors, keep the PlwD's routine as close to normal as possible and make sure they get plenty of rest. To help you enjoy the time, keep your own stress down with plenty of sleep and self care.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

 Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, December 8, 2017

Essential Oils Most Helpful with Dementia

This week's guest blogger is our Alternative Therapies consultant, Regina Hucks. Her last blog was about the benefits of Touch and Massage therapies for both caregiver and patient. This blog is about the Essential Oils (EOs) most helpful for persons living with dementia (PlwD). It is a condensation of the entry on her own Alternative Therapies for Dementia Care blog. Do check it out the get the whole story and much more.

As a caregiver, YOU can change the way you respond to stress but dementia takes this ability away from PlwD. However, by incorporating Aromatherapy and Touch Therapy into their daily routine you can help them to achieve those changes. First, some suggestions:
  • Not all EOs are alike. To get the best results, I recommend using those that are marked "Certified Pure Therapeutic Grade."
  • EOs are strong. Prevent possible skin irritation or desensitizing.by blending them with Fractionated Coconut Oil (4-5 drops to 1 drop EO) when used topically. 
  • You can apply a small amount of the same EO you use for Touch Therapy massage to the back of the neck where the brain stem is, to increase effect.
Why essential oils work:

Essential oils contant sesquiterpenes, chemical compounds that enable oil molecules to cross the blood brain barrier (BBB). The BBB is the filtering mechanism between the circulating blood and the brain. Its job is to prevent damaging substances from reaching brain tissue and cerebrospinal fluid. The ability to cross this barrier is essential for the treatment of brain diseases and disorders, yet, up to 98% of small molecule pharmaceuticals cannot do so. (Pardridge; 2009). In contrast, Essential Oils with a high level of sesquiterpenes can pass through the BBB, where they can impact the brain directly by therapeutically interacting with glycine, dopamine and serotonin neurotransmitter receptors. (Wang et al., 2012; Okugawa et al., 2000)

Even those EOs that don't cross the BBB can still affect the brain through activation of the olfactory bulb. Odors and emotions are both processed in the brain's limbic system. The oils below are listed because of their beneficial impact and/or their ability to cross the BBB. However, each person will differ in their response so it is important to do a bit of research to see which ones impact your PlwD in the most positive of ways.

Best applications for essential oils:

Topical application via hand massage, (or Touch Therapy as discussed in my last article) is highly effective for both care giver and PlwD. Although massage alone is relaxing for both of you, massage with specific EOs is even more helpful. A 1998 study in Australia found that when patients in a dementia day-care facility received a 10 to 15 min hand-massage with a mix of essential oils, the patients had significantly improved feelings of well-being, alertness and sleeping patterns and significantly decreased aggression and anxiety. (Kilstoff and Chenoweth, 1998).

Aromatherapy is best performed with a misting diffuser, which breaks up the oil is into minuscule drops that are misted into the air. There are a multitude of diffusers on the market with each having its own bells or whistles. My recommendation is the GreenAir©SpaVapor. (Go to Regina's  blog to read why she prefers this type and to find out how to buy them.)

RECOMMENDED OILS FOR TOPICAL APPLICATION and AROMATHERAPY:

Often recommended for use by PlwD and related disorders. These high intensity oils have helpful enhancement and equalizing properties as well as other health benefits although they are not in high in sesquiterpenes:
  • Sandalwood: Helps to calm, harmonizes and balances the emotions, enhances brain function, and improves memory. (Blends well with Frankincense, Lemon, Myrrh and Ylang Ylang.)
  • Frankincense: Helps focus and improve concentration while minimizing distractions. It eases impatience, irritability and restlessness and can enhance spiritual awareness and thought. (Blends well with Clary Sage, Lemon, Sandalwood, Peppermint; can blend with any oil as an enhancer.)
Oils highest in sesquiterpenes:
  • Ginger: Improves digestion, acts as a soothing agent and reduces anxiety, helps to increase energy and appetite. (Blends well with Lemon, Rosemary and Frankincense)
  • Myrrh: Very soothing to the body. Works directly on the immune and nervous systems as an anti-inflammatory. May help to improve waning appetites. (Blends well with Frankincense, Lavender and Sandalwood)
  • Vetiver: May help to decrease depression, insomnia, extreme nervousness and stress. (Blends well with Clary Sage, Lavender, Sandalwood and Ylang Ylang)
  • Ylang Ylang: Aids in balancing the equilibrium. Helps to slow rapid breathing, alleviate frustration, balance heart function, reduce infection and eliminate shock. Has been used for centuries to reduce fatigue by stimulating the adrenal glands. Can have a calming and relaxing effect and alleviate anger. (Blends well with Lemon, Sandalwood and Vetiver)
Other oils recommended for use by PlwD:
  • Coriander: A gentle stimulant for those with low physical energy. Can also decrease stress, irritability and nervousness, provide a calming effect to those suffering from shock or fear. Regular use may slow memory impairment. Use sparingly; can be stupefying if over done. (Blends well with Cinnamon, Clary Sage, Ginger, Sandalwood and Frankincense)
  • Rosemary: Calms and relaxes. Found in multiple dementia studies to enhance the quality of memory. Combining Rosemary and Lavender in a diffuser has been shown to relax, calm, improving memory and provide extended periods of cognition. Combining Rosemary and Peppermint in a diffuser provides a more energetic and stimulating effect while improving memory and recall. (Blends well with, Peppermint, Lavender, and Frankincense)
  • Lemon: Invigorating, with strong anti-stress, anxiety and depressant properties. May help to improve memory and concentration. Recommendation: Drink 5 drops in a glass of water several times a day. A refreshing drink that aids digestion, decreases dehydration, limits fluid retention, strengthens the immune system and promote energy. (Blends well with Frankincense, Peppermint, Sandalwood and Ylang Ylang)
  • Clary Sage: Widely used to alleviate depression, insomnia, fatigue, mood swings and the muscle fatigue of Parkinson's. (Blends well with Lemon, Sandalwood and Frankincense.)
  • Lavender: calming, anti-depressant properties and is used for restful sleep. When in doubt, use Lavender. Recent studies have shown that combining Rosemary and Lavender in a diffuser will relax and calm while improving memory and provides extended periods of cognition. (Blends well with Clary Sage and Lemon.)
  • Peppermint: Known for centuries. Wide variety of uses: Improving alertness, reducing fevers, nausea and other digestive issues, muscle aches and headaches. A purifier and stimulant, it is used to improve memory and mental performance, and to decrease anger, depression, fatigue, and hysteria. (Blends well with, Rosemary, Lemon and Frankincense) CAUTION: Use sparingly when dealing with hypertension / high blood pressure. In this case, diffusing is best.

Coming up next month: Meditation: Slowing the Progression of Dementia

I wish you all a most Happy Holiday Season filled with love, joy, hope and peace.
To reach me with your questions, feedback or to find out how to purchase these oils at wholesale pricing, please click here and fill in the form.
For more in depth information about Essential Oils and the health benefits, please click here.
Regina Hucks, Alternative Therapy Consultant

For information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia Managing Cognitive Issues in Parkinson's and Lewy Body Dementia Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, November 24, 2017

Happy Thanksgiving

Yesterday was Thanksgiving. We spent the day with family and friends and we hope you did too.

We hope your holiday was happy.

  • That you had a few family or friends with you, but only a few so that your loved one could enjoy the time too. 
  • That you had a convivial holiday meal that included everyone's favorites--even if they were a bit odd! 
  • That you made a point of listing the many things you had to be grateful for. 
  • That you let go of the need to be the perfect caregiver and allowed yourself time and space to enjoy the day--even if that meant hiding off somewhere and reading a trashy novel for an hour.
  • That you took time to reminisce, to tell stories of past adventures and joys and to encourage your loved one to share their stories. 
  • That you got to share lots of hugs, and affectionate words and other expressions love and care.

And if you didn't have this, we hope you will make an effort to do so soon. It doesn't have to happen on any certain day, you know. You can make your own Thanksgiving Day on any day of the year.

Next week, the blog will be the blog I actually promised you this week: I Want to Go Home, Part 2.

For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia Managing Cognitive Issues in Parkinson's and Lewy Body Dementia Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, November 17, 2017

I Want to Go Home, Part One

Almost ever care partner has heard this request. Most start out by telling the PlwD,*  "But you are home" only to find out that instead of making things better it made them worse. The same is true for the care partner who tries to explain to a PlwD in a care facility that this is now their home.
Look at it from the PlwD's view:

Something isn't right. I don't really know what's wrong but I do know that when I'm home I feel comfortable and safe. Since I don't feel comfortable and safe right now, I must not be home.

"But you are home. We've lived here for 20 years!" your care partner says.

That can't be. What is she trying to tell me something that clearly isn't so. This isn't my safe, comfortable home.

"Look around," she tells you. "See this is your very own chair, and that's the carpet we bought a few years ago and..."

I have to say she's gone to a lot of trouble to fool me. The chair and the dresser do look like mine, but I KNOW this isn't home. I wouldn't feel the way I do in my own home. She can't fool me. I'm so mad.

Does this sound like some of your interactions, but from a different point of view? Here are some basics to remember and some suggestions for putting yourself in your loved one's frame of mind. To get the most out of this, rely on what your senses and emotions first tell you. Don't think about it. PlwD don't--they can't.
  • Emotions trump reality. What the PlwD feels is more important that where they really are. "Home" means comfort, thus discomfort means "not home."
Try it: Think about how you feel about "home." Is this the place where you feel most comfortable, most safe? Is it where you want to go when you don't feel well?
  • First impressions are all there is. The PlwD doesn't do the abstract thinking that change requires. The PlwD bases their impressions on the first feelings they experience after they perceive something and that's what they are stuck with. Their brain can't change.
Try it: What are your first impressions, your first feelings? Imagine that someone tells you something that you know isn't true. Say, that the blue car you are looking right at is really red? React at face value. Don't add or subtract anything--that takes abstract thinking. So now, go back and look for your first feelings. Incredulity ? Affront? Disbelief?
  • The PlwD bases further feelings on their initial response. That is, once the PlwD decided that this isn't home, they will respond just like you did about the car---and with negative feelings about being lied to.
Try it: Imagine that someone that you depend on seriously tells you that this isn't your home. Would you feel lied to? Hurt? Belittled? Angry? Scared?
  • The PlwD responds to negative feelings with negative behaviors. They will do the first thing they feel like doing without considering the effect or consequences.
Try it. What is your first impulse upon feeling lied to? What is the very first action you consider? Do you want to strike out, resist, argue, withdraw, hide, cry? You can choose not to do these things but the PlwD can't. If they feel it they will act it out.

All is not hopeless. With this inside view of the PlwD's cognitions, a care partner can choose words and actions that will help a PlwD feel more at home. Next blog will be about "going home."

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD, LBD, DLB, MCI, PD, PDD, etc: person/people living with dementia
        (Substitute your loved ones name here!)
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, November 10, 2017

Affirmations to Keep You Going

Today's blog is about mantras, or motivating statements, like the “I think I can, I think I can” that you can chant over and over to yourself when the going gets rough. It can express a basic belief, be a guide for behavior, or be a personal affirmation. You can make a mantra an affirmation and make it your own by using "I:"I am open to receive..."  or "I choose...". When you leave off the pronoun, it is more of a command...and sometimes, that may be what you need! Just don't use "You" which puts distance between your mantra and you and makes it less helpful.

The following affirmations were adapted from a list of mantras collected by the LBD Caring Spouses online support group by Rosemary Dawson. All mantras are helpful but I believe that they are most effective as personal affirmations. Not every affirmation will have meaning for every care partner. Some will have meaning at one point on the Lewy journey with different ones resonating at other points. Which can you relate to now? Which ones do you use? Which ones will you choose to use today?
  1. I am open to receive the gift of the day.
  2. I choose the lesser stressor.
  3. I don't look back. I don't look forward. I focus on today.
  4. I don't worry about tomorrow; today is what matters.
  5. I don't take the bait.
  6. I drop the rope.
  7. I find joy each day with (your loved one's name).
  8. I find not just issues, but blessings.
  9. I go along to get along.
  10. Home, Hospice, Heaven!
  11. I am doing the best I can.
  12. I don't like the music, but I am still going to dance.
  13. I forgive (your loved one's name).
  14. I forgive myself.
  15. I love you.
  16. It's Lewy, not (your loved one's name).
  17. I keep in touch (by touching) .
  18. I kiss slowly, forgive quickly, play hard, take chances, give everything, and have no regrets.
  19. I laugh when I can, apologize when I should, and let go of what I can't change.
  20. I let go, let God.
  21. Life is too short to be anything but happy!
  22. I look for treasures in the darkness.
  23. One day (hour/minute) at a time.
  24. Outsmart Lewy.
  25. I pick my battles!
  26. Sooner rather than later.
  27. Start low, go slow!
  28. I stay calm and avoid the ER.
  29. Thank you for ....(e.g., being you, loving me, sharing my life, helping me with......)
  30. This is doable. This too will pass ...
  31. This was the best day of our life!
  32. To dream the impossible dream.
  33. Toujour Ensemble.... Always together.
  34. When it rains, I look for rainbows. When it's dark, I look for stars.
  35. I can't control the waves, but I can learn how to surf.
  36. (Your loved one's name) is doing the b•est s/he can.
If you are interested in joining an online LBD caregiver support group:

The Caring Spouses is a private online group limited to spouses of people living with LBD. If you are a LBD spouse, you can CLICK HERE to request to subscribe.

The Yahool LBD Caregiver's Support Group is open to LBD caregivers and anyone interested in LBD caregiving. To subscribe, CLICK HERE, then enter "LBD Caregivers" in the search box.

The Lewy Body Dementia Support Group on Facebook is a closed group, but easy for anyone interested in LBD to join. Enter "Lewy Body Dementia Support in the Facebook search box.

For  information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, November 3, 2017

Touch and Massage Therapy Incorporating Essential Oils:

Today's blog is from our Regina Hucks, our Alternative Therapies Consultant.

Touch is powerful.
The Human Touch is a powerful thing. Often a touch can be something as simple as placing a comforting hand on a shoulder or another’s hand or a more powerful touch found in a hug or gentle embrace. For someone with dementia, this is huge.

The number 1 question I get from caregivers is “What can I do to dispel agitation and anxiety.” While everyone responds differently, you may need to try several things before finding that particular therapy that works best for your charge. There are several basic things I will suggest doing that may well be your key to preventing episodes from occurring but it is important to try first to discover the source of his or her trigger. Consider this exercise much like child-proofing a home.

Anxiety and agitation may be caused by a number of different medical conditions, medication interactions or by any circumstances that worsen the person's ability to think. Ultimately, the person with dementia is biologically experiencing a profound loss of their ability to negotiate new information and stimulus. It is a direct result of the disease.

Situations that may lead to agitation include:
  • Moving to a new residence or nursing home
  • Changes in environment, such as travel, hospitalization or the presence of houseguests
  • Changes in caregiver arrangements
  • Mis-perceived threats
  • Fear and fatigue resulting from trying to make sense out of a confusing world
There are 5 basic things you will want to do to prevent or reduce agitation:
  1. Create a calm environment. Remove stressors. This may involve moving the person to a safer or quieter place, or offering a security object, rest or privacy. Try soothing rituals and limiting caffeine use.
  2. Avoid environmental triggers. Noise, glare and background distraction (such as having the television on) can act as triggers.
  3. Monitor personal comfort. Check for pain, hunger, thirst, constipation, full bladder, fatigue, infections and skin irritation. Make sure the room is at a comfortable temperature. Be sensitive to fears, misperceived threats and frustration with expressing what is wanted.
  4. Simplify tasks and routines.
  5. Provide an opportunity for exercise. Go for a walk. Garden together. Put on music and dance or paint or draw.
NOTED SUGGESTION: I know this is off the subject of Touch and Massage therapy but creating the calming environment is first and foremost. Research has shown that a combination of Rosemary and Lavender Essential Oils in a diffuser reduces or eliminates anxiety. Rosemary has been shown to increase cognition while Lavender acts as a calming and soothing agent. Regular daily diffusing helps to create and maintain a calming environment.

Once you have done all you can to ensure the creation of a calming environment and you are confident there isn’t any medical issue needing your attention yet anxiousness or agitation still persists, Touch Therapy and the use of specific Essential Oils will generally provide immediate relief.

Touch Therapy is our primary focus in this blog today. Touch Therapy is easily learned and incorporated into a daily routine while Massage Therapy should only be performed by a licensed practitioner with knowledge and experience working with dementia’s and the aged. Above all else, Touch Therapy and Massage Therapy present SIDE-EFFECT-FREE alternatives to everyone.  More.... 

 (Find the rest of Regina's information on Touch Therapy in her blog, Alternative Therapies for Dementia. To contact her visit this page and fill in the form.)

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers, nor is Regina Hucks. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Tuesday, October 31, 2017

Lewy Body Phrase for 10-31: Our Upcoming Book

What better day than Halloween to talk about a book that helps care partners deal with the frightening and bewildering behavioral and psychological symptoms of dementia (BPSD) that start showing up far too early with LBD but eventually show up with most dementias?

We plan to have our upcoming book published in time you to use it as a Christmas gift. If you've been following daily October blogs, you already know what it is about. Each of these blogs is a tiny sample of the information in the book.

Of course, since these blogs were kept very short, they contained only a few of the items covered in the book under each subject and seldom included the many quotes that make the book so much more personal.

We plan to offer versions of the book: one for care partners and one for care staff. You can get one for yourself and one as a gift for your helper. We will list it on LBDtools.com and on Amazon so watch for a notice!

For information about Lewy body disorders, read our present books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.