Being Flexible

Because their job is so important to them, care partners often get caught in the trap of having much higher expectations for themselves than they do for anyone else. Wallowing in guilt and self-blame, they believe that if they lose patience, or don't do something as it "should be done," then they have failed. Everything that goes wrong must have been their fault. If they'd just done it better, or differently, or more, or.... This is a setup for stress, followed quickly by the behavior and psychological symptoms of dementia (BPSD).

Being flexible helps you to let go of those unrealistic expectations and escape the destructive guilt trap by accepting what is. Being flexible allows you to stop using failures as badges of shame and see them as learning tools, reminders, and yes, warnings. It is a process that involves:

• Recognizing the problem or the failure, 
• Looking for the lesson, 
• Experiencing any guilt involved and making amends, 
• Worrying a little and looking for a better way,
• Taking action 
• Trying again and again
• Moving on.

Last night, George watched his favorite detective story on TV. Then I think he chased those bad guys all night long in his dreams. It was his favorite show...he's been watching it for years. -- Mary

• Recognize the problem. Sometimes that's easy. the PlwD expresses discomfort with BPSD. Often, it's less clear, as when the care partner is feeling overwhelmed. Sometimes it takes something serious such as a fall for awareness to come. More often it is simply a failure of some sort, like George's restlessness.

But I guess it is too exciting for him now. I know should have noticed this sooner. -- Mary

• Feel the guilt and look for the lesson. Guilt's job is to trigger you into expressing your concern to anyone you may have hurt (including yourself!) and to point out the need to try a different way. Then, guilt's job is over.

Oh, well, I guess I'm not perfect! -- Mary

• Forgive yourself. Be as compassionate with yourself as you would be with anyone else. Making a mistake, even a serious one, does not make you a bad care partner. Like Mary, you aren't perfect. You don't have to be! Love yourself anyway. This self-caring will be mirrored by the PlwD as positive feelings towards them as well as yourself.

I remembered that someone in my support group talked about using DVDs instead of TV and I decided to give that a try. -- Mary

• Worry a little and look for a better way. A moderate amount of worry can lead to constructive, thoughtful evaluations of the situation, and motivate a person into taking action. What can I do? Who should I ask? What are my options? Is this the right one? Can I think of anything better? What else can I try? Then worry's job is done.

I ordered some with some old programs for him to watch instead. -- Mary

• Take action. This might mean that you'll set up a plan of what to do later. Or it may mean that you'll do something right away. But there needs to be a feeling of "doing" involved, even if it is only making a decision to do nothing. This helps you to let go of the guilt and worry and move on.

The first one I tried he hated. Then I put in Andy of Mayberry. He likes it and it doesn't make him restless. -- Mary

• Try, try again. If the first thing you try doesn't work, try again. This is a big part of being flexible too.

We are both happy campers!-- Mary

• Move on. Once guilt and worry have done their jobs, it is time to let them go. All too often a person hangs onto these and tries to use them to control the past and future. "If I can't do anything else, at least I can feel guilty or worry about it."

Flexibility may mean lowering your standards. Your house doesn't have to be spic and span. The PlwD may not need a shower every day, and so on.

It's got so I realize that I need 24/7 care for George, but our finances are limited. I checked with the state. They will help if he goes into a residential facility but not if I keep him at home. I did my research and found a wonderful assisted care facility. The problem is that the state will only pay for a two person room. I had so hoped that George could have his own room. -- Mary

Flexibility comes into effect with finances too. Dementia care is expensive. Even with help from the state or other sources, you may not be able to afford what you really want. Don't let this stop you from getting the best help you can afford. You can seldom have it all. Mary may need to accept a two person room in a good facility. She just has to make the best choice she can with the resources she has and then let go of what might have been and move on.

An a different subject, we are exercising our own flexibility by moving to a twice monthly blog for the summer. We will be traveling and researching for blogs becomes more difficult. Expect blogs around the 7th and 21st days of the month.

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
PlwD: person living with dementia
PlwLBD: person living with LBD
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.

Medicaid Requirements for Long Term Care

(Italicized words are defined in the mini-glossary below.)

Residential care is expensive…more expensive than many of us can afford, but there is help in the form of Medicaid. Each state has different names for this and different standards, although some things are basic government requirements. If you have assets that you want to pass on to your children, you need to start planning early. Any assets you give to your family beyond minimal amounts in the five years prior to your “snapshot date” will still be considered yours when eligibility for financial assistance is determined. This includes trusts. Always consult an elder attorney before making these plans, but here is a simplified outline of what is offered.

The following Medicaid requirements take into consideration the Federal Spousal Impoverishment rules:

• Countable assets of both spouses are totaled as of the date the institutionalized spouse enters a hospital or long-term care facility and stays for at least 30 days.

• The community spouse can keep ½ of this total, up to a specified amount (from $23,844 to $119,220 in 2016 depending on the state). State rules differ. Some states allow the community spouse to keep up to the specified amount of the combined total instead of being limited to half.

• Income of the institutionalized spouse is counted for eligibility, but in most states, that of the community spouse is not.

• The institutionalized spouse can keep about $2000 (differs with state).

• The rest of the institutionalized spouse’s assets must be ‘spent down’ before they will be eligible for Medicaid. This can be spent only in certain ways. For example, it cannot be gifted, except in very small amounts. Don’t wait to give your children anything you want them to have. If you wait too long, it may fall within the five years prior to your snapshot date and will be counted as still belonging to you as far as eligibility goes. Consult an elder attorney about the ways to give gifts, and the limitations involved.

Post eligibility requirements:

• Community spouses with higher incomes may be required to help pay for cost of the institutionalized spouse’s care. (Varies with states)

• If the community spouse’s income is less than the state’s minimum monthly maintenance needs allowance (MMMNA), then they can keep some or all of the institutionalized spouse's income. (up to $2002.50 a month in 2016)

• The home equity of the institutionalized spouse must be less than the state standard ($552,000.00 to $828,000.00 in 2016). 

• The institutionalized spouse is allowed to keep a personal allowance of $60 a month.

• The institutionalized spouse’s medical costs are also considered.

• The institutionalized spouse is required to pay the institution what is left of their income after deducting the amount the amount that can be kept by the community spouse, their personal allowance and the allowed amount for medical costs.

It is always a good idea to consult an elder attorney when planning for retirement, long term care, and upon a diagnosis of any eventually incapacitating disease such as Parkinson’s or any dementia. At that time, ask about Medicaid requirements for long term care and how they apply to your specific situation.

Be aware that these requirements can change as the lawmakers in Washington DC hammer out new rules for the Affordable Care Act.

Mini-glossary:

Assets: Anything of monetary value: real property, art work, savings, pension plans, stocks and bonds, cash, etc.

Community spouse: the spouse who is NOT living in a hospital or residential facility.

Elder attorney: A lawyer who specializes in laws concerning the elderly.

Federal Spousal Impoverishment Rules: Medicaid rules which provide special protections for the spouses of Medicaid applicants to make sure that they have the minimum support needed to continue to live in the community while their husband or wife is receiving long-term care benefits.

Home equity: The  fair market value of a home, less debts, divided by the number of owners. Thus the institutionalized spouse’s share of a $900,000 mutually owned home where $100,000 is still owed, would be $400,000.

Institutionalized spouse: the spouse who is living in a hospital or residential facility.

Medicaid: Called by different names in different states. There are basic federal requirements and payments but states can add to these.

Minimum monthly maintenance needs allowance (MMMNA): a minimum monthly income standard for the community spouse, set at one-and-one-half times the Federal Poverty Level for a single person living alone. ($1,991.25 to $2,980.50 in 2016)

Residential care: Care in a hospital or an assisted living, memory care, rehabilitation or nursing home facility for at least 30 days.

Snapshot date: the date a person enters a hospital or residential care facility for a stay of at least 30 days.

For information about Medicaid requirements for long term care specific to your state, go to Find an Attorney, click on your state, and then "Key Medicaid Information" for that state.

For more information about Spousal improvishment standareds:
2016 SSI and Spousal Impoverishment Standards

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 or lawyers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's or lawyer's advice.

Regina Hicks, Alternative Therapies Consultant

Over the course of the next few months, our Alternative Therapies Consultant Regina Hucks will be guest writing an occasional blog about the use of alternative therapies in dementia care. Raised by a university professor of quantum physics and a master chef, it’s no wonder Regina chose to study the science behind essential oils and the importance of whole nutrition. She holds certification in both Clinical Aromatherapy and Therapeutic Massage, with a focus and extensive research on the chronically ill, dementia, depression and anxiety disorders. Regina teaches the importance of whole nutrition in promoting cellular health, emotional stability and physical healing as well as the benefits of alternative therapies for wellness in everyday life.

Feel free to email your questions to Regina through this link or at the end of this article. Please fill out the short questionnaire so that she can provide a more complete answer.

AN INTRODUCTION TO ALTERNATIVE THERAPIES FOR DEMENTIA CARE:

We do not advocate the use of alternative therapies as your sole source of treatment. We are here to inform, educate and empower you and your charges. Alternative therapies provide benefit to both patient and caregiver. They can work in conjunction with pharmacology to enhance treatment while providing positive and beneficial results. On their own, they have been shown to alleviate, and in many cases, eliminate a multitude of symptoms. Unlike many pharmaceuticals, alternative therapies do no harm. Side effects, if any, are negligible.

We suggest working with your physician to incorporate alternative therapies into your care plan. Many physicians find value and embrace their use while others are strictly by the book. Alternative therapies have been used for centuries, it has only been in the last 20 years or so that our modern medical community has begun to see their value. Physicians, hospitals, hospice and dementia care facilities are relying more and more on the use of a non-pharmacological approach.

I highly suggest taking a look at www.lbdtools.com . Authors, Jim and Helen Whitworth wrote their award winning books and created this website to help caregivers better understand Lewy body dementia and how to provide appropriate care for their patients and loved ones. The Whitworth’s will tell you, caregiving isn’t a job, it’s a labor of love, personal sacrifice and commitment that can take its toll on your physical, mental and emotional wellbeing well beyond what you can imagine.

A positive side to incorporating Alternative Therapies into your caregiving routines is the impact it has on the caregiver over and above the impact it has on the patient. Many of these therapies require physical contact, others, a connection on the spiritual and/or emotional level. As a caregiver, this contact with the therapies may provide you with the same or similar positive experience your charge will have.

While there are a multitude of therapies, we will cover those therapies that:

1. Are evidence based in nature and have been shown to have great impact on the health and well being of the dementia patient as well as their caregivers
2. Are a range of affordable services provided by licensed, trained therapist with a history and extensive experience working with dementia patients
3.  Are therapies (most) that can be taught to caregivers who desire to implement them in the care of their patients or loved ones
4. We have researched for higher than average results with recommendations for specific products that meet the highest standards in the industry
5. Have been found to have a significant impact on behavioral and physical problems found in patients suffering from dementia.

Please visit my Healing Things blog  for upcoming weekly articles covering:

• Incorporating Alternative Therapies
• Essential Oils and their role in dementia care:
• Essential Oils for Nutrition Therapy
• Essential Oils and Massage Therapy
• Essential Oils and Touch Therapy
• Essential Oils for Aroma Therapy - Stress Reduction, Improved Sleep, Memory and Cognition
• Music Therapy
• Healing Frequencies, Tones and Vibration – Impacting the body on a Cellular Level
• Music and Memory
• Art Therapy
• Memory and Motor Function
• Color and How it Relates to Dementia
• Fractal Therapy
• Meditation and Stretch Yoga
• Nutrition Therapy – Dealing with Toxicity
• CBD Oil – Researching the Best, Purest, Cleanest and Organically Grown Product and the Positive Impact on Dementia and Overall Health.on Dementia and Overall Health.

To reach Regina with your questions or feedback, please, click here below and fill in the form.

The Five Senses

The following is a chapter in our newest book, to come out this fall. More about it in later blogs.

senses: Sight, smell, hearing, taste, and touch; faculties by which the brain receives external stimuli.

The senses are the brain's information gathering system. When they are damaged, the information they deliver may be distorted from the beginning. Dementia itself doesn't damage the senses. Age can, or other illnesses can, but dementia doesn't.

However, attention deficit is a common dementia symptom. It limits one's ability to narrow their focus and pay selective attention. Everything is giving equal billing, making it difficult to choose what to ignore what to zero in on. This broader view sends fuzzier, less accurate information to the brain for processing, even when the senses themselves are not damaged. (reference)

In communication, when words and non-verbal cues picked up via these senses differ, it is human behavior to believe the cues over words. That's because words are symbols that must be decoded, requiring an extra processing step. Non-verbal cues are not so difficult to decode and therefore are processed more quickly.

It is important for a care partner to know not only what dementia has taken away, but also what is left to work with. For example, as language skills wane, a PlwD will turn to using non-verbal cues to communicate their own needs and wishes instead of words.

Vision. As a person ages, one's peripheral vision tends to narrow. Dementia tends to cause this to happen sooner. Thus a PlwD will probably have poor peripheral vision and as the dementia progresses their field of vision narrows to a small area right in front of them. They need you to stand inside their field of vision, but off to one side a little so that you don't block their whole field.

The quality of vision still left also degenerates with age, other health issues, and possibly even with dementia. Things that were once clear can become blurry, faded and distorted. Use bright color and contrasts to help with this. (Reference)

Hearing. Dementia does not make people hard of hearing and using a loud voice will not improve their ability to hear. The louder a voice, the more distorted the sound and the less it will be understood. However, many people with dementia are of the age where being hard of hearing is common. The higher registers tend to be more affected more than the low ones. Use a normal voice, pitched as low as possible, to have the best chance to be understood.

Unless some other problem has caused hearing damage, a person with dementia will usually be able to hear no matter how far they are into their journey--and may be able to comprehend as well. Use care with what you say around a PlwD who appears to be comatose or inattentive. Inappropriate words can cause great agitation.

Smell. There is some early research suggesting that Parkinson's disease (PD) starts in the nose, not the midbrain. An early PD symptom is loss of smell, which supports this idea. (Reference) LBD care partners often name loss of smell as an early symptom even when PD wasn't involved. The good news is odor receptors (olfactory nerves) reside in many areas of the body besides the nose, including the skin. This means that smell-based alternative therapies may still be helpful. (Reference)

Touch. Touch seems to be a long-lasting sense like hearing. This is especially true for the more sensitive areas of the body: lips and tongue, fingers and palms, soles of feet and genitalia. That's why you will see a PlwD touching things or putting them in their mouth. A person can also continue to feel and enjoy touching from others. Use a gentle but firm hand. Avoid a light feathery touch that might cause unpleasant feelings of tickling or even "bugs."

Taste. PlwD often have altered food preferences. Dementia may take away the ability to identify and remember tastes. But typical aging is even more of a problem. Like vision, the efficiency of the taste buds fades with age. Thus a person will tend to prefer sweets or other foods with strong tastes. The ability to enjoy food and the cultural processes around eating last however. This enjoyment can be increased when meals are made into a special time of relaxed togetherness.

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
PlwD: person living with dementia
PlwLBD: person living with LBD
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.