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.

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.

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.

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.