The Long Road

"The number of people living with dementia worldwide is currently estimated at 35.6 million. This number will double by 2030 and more than triple by 2050.  Dementia is overwhelming not only for the people who have it, but also for their caregivers and families."  World Health Organization

Sobering statistics.  The road of caregiving is long, and according to statistics the need for caregiving is ever increasing.  Readers of this blog, if you know someone who may be facing dementia, please tell them to check into longterm care insurance.  Unless a person is either quite rich or very poor, one will need help in paying for the longterm care.  Wealthy people can pay for the care themselves, and the definition for being wealthy enough to self pay according to a financial adviser is having assets of $3 million or more.  People who have few assets, and I currently do not remember that money amount, might qualify to have the government pay for the longterm care in the USA.  However, there is a downfall for people who go that route.  I am now in the process of finding nursing home care for Dwane, and the first question every facility asks is, "Are you private pay?"  There are so few options for people who are not private pay because the government pays less that the nearly $8000 a month nursing home care costs, and nursing homes are reluctant to take those people.  Sad situation.  I am so grateful that I had the premonition to buy longterm care insurance many years ago..   

Yoga for Weight Control

"Scientists are just now uncovering the slimming power of gentle yoga." Hillari Dowdle

I have been doing a gentle, meditative yoga this past winter, and I just love it.  It stretches my leg muscles that sometimes keep me awake at night, the oxygenation improves my overall well being, my blood pressure -- always good - has been even lower despite the stress of caregiving, it has kept me flexible; and, although weight control is not an issue for me, research indicates it helps control weight too.  If you have not tried yoga, I recommend it.  There are many different types.  I have gone to classes which have a person changing positions every few seconds.  The class I have taken this winter is different -- the teacher has us hold every position and focus on deep breathing.  I sleep amazingly well after.  Yoga is well worth the investment of your time and money, and your body and overall well-being will be better by having done it.  

Beliefs

You are perceptual beings with different vantage points and — it does not matter how much information is given — you cannot see beyond the vibrational limits of where you are standing. You cannot live or see or experience outside of your own individual beliefs.

---Abraham

Our beliefs can either support our well-being or diminish it.  With health, with relationships, with prosperity and success -- how well we do is largely based upon the beliefs we have about our deservedness to have good health, loving relationships, and success.  It takes conscious effort to become aware of our beliefs that limit us, so that we can change them.  If there is an area of our lives which is not going as well as it could, then it behooves us to look at our beliefs around that area.  

Sleep

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   "Fish oil, already a staple for calming inflammation, might also help lull you to sleep." University of Oxford study
   
   

   In this study children who took a daily 600 mg dose of DHA omega-3s slept soundly for nearly an hour longer each night.  Omega-3s help release melatonin, which triggers sleep, so adults might have the same results.  As caregivers, we need good sleep, and this may be one way to help us obtain it on a regular basis.  

Sadness

"The best thing for being sad, replied Merlin, is to learn something." T. H. White

There is much within caregiving about which to be sad.  The dramatic decline in my loved one's functioning deeply saddens me.  It is important to feel the feelings that caregiving gives rise to, and I am sure we have all done our share of crying.  But, equally important, is to learn something from the sadness.  Yes, feel the sadness and honor it, and then go and listen to music you have never heard, or take a walk in nature, or cook something delicious.  Within the sadness, there is a gift of something we can benefit from knowing.

Being Who We Are

"In truth, there are always two reasons to be who we are.  It is how we find love, and it is how we keep the ways of others from sweeping us away."  Mark Nepo

It seems in life that there are many pressures to be something or someone other than what we are.  Well trained from early childhood, we often opt for pleasing others in order to have a sense of belonging and being loved, and it is important for us to know that this is not insignificant.  To belong is a strong basic instinct, one which has its basis in survival.  Our ancestors were not likely to survive unless they were part of a group.  That instinct remains in us today, and it is with conscious effort that we train ourselves to please ourselves instead of others.  We cannot truly be loved unless we first love ourselves.  

Vinegar Use

"Vinegar has been used as a disinfectant since Roman times, but more recently has been found effective against some drug-resistant bacteria." Prevention Magazine

With scary reports of newly-found viruses or forms of bacteria, it is good to know that there is something safe and perhaps effective in staying healthy.  White vinegar is a cheap, nontoxic cleanser.  To kill bacteria (research has found it effective in killing at least the drug-resistant bacteria which causes tuberculosis), cover surfaces with vinegar and wait 20 minutes before wiping it off.  

Yoga

"The answer to almost any health problem is yoga." Prevention Magazine

Cited as being beneficial for back pain, high blood pressure, weight loss, sleeping better -- besides it supports flexibility, strength and muscle tone.  Hard to find all of that in any one other form of exercise.  When I go to evening yoga, I sleep better.  The deep relaxation and oxygenation I get supports my overall health.  When I had a recent yearly physical, my blood pressure was 92 over 60.  The nurse asked me what I was doing to be so relaxed, and I knew that doing yoga, along with my spiritual practices, was the answer.  For all of us caregiving, I highly recommend yoga to help handle the stress.

Checking Infections

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   "Infections are often the cause of decline in functioning in elderly." Mayo Clinic
   
   

   With the significant decline in Dwane's cognitive and motor functioning and the increase in his hallucinations, we are checking to see if he might have a urine infection -- infections of some kind are often the cause of such a decline.  He has declined so significantly since January, with another significant dip this week.  We are checking to see if there is an infection that is causing the decline, or if this is a new normal level of functioning.  So sad to see.  

Given Notice

1. 

   Last night I got the phone call that was inevitable.  The care facility where Dwane is, which is in between assisted living and nursing home/longterm care, is unable to continue to meet his needs.  So, the serious look for longterm, nursing home care.  So many have waiting lists.  So many are ones where I would not consider placing him.  Changes in the near future, which are not ones I look forward to.  

Neurological Insights

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   "There was both freedom and challenge for me in recognizing that our perception of the external world, and our relationship to it, is a product of our neurological circuitry."  Jill Bolte Taylor, Ph.D.
   
   

   A friend lent me a book, My Stroke of Insight, by above author which is about a woman who had a stroke, but it also lends some insight into what might be happening to the brain as the disease of dementia ravages it.  Even for those of us with "normal" functioning (whatever that is) can benefit from knowing that our perception of the world may not be the same as the person next to us.  We are each different.  Our neurological circuitry is different, as is our DNA and our personal history.  It might benefit us to consider that the world looks different to each of us.

Life's Impermanence

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   "If you can learn to embrace that life's experiences are temporary, it may provide the fuel to face the challenge of caregiving."  Mayo Clinic
   
   

   All of life is temporary.  Impermanence is the only constant.  Life is a process of letting go -- of relationships, jobs, people, our youth.  If we can truly accept that all of life is impermanent, then caregiving might be easier.  This job of caregiving will end with the death of our loved one.  Then we will be done caregiving, but we will need to grieve the loss of the one for whom we provided care.  With dementia, we have been grieving all along as the person loses more and more of who she or he was, but their death will be the ultimate loss.  All of life is temporary.  Let us accept that as good.

Money Saving Tips

""When it comes to saving money, we all have our quirky little habits.  Some of these are clever and thrifty.  Some are wasteful or silly." Kathleen Fox

Some habits that are clever and thrifty are:  buying big (if that is the better buy) on nonperishable items, do it yourself if you have the skill and tools, air-drying dishes in the dishwasher (I always open the door and let it air dry).  I would also add, if your electric company has different rates for different times of day - as mine does, using the clothes dryer and anything using hot water during the time of lower rates.  Some things that can be wasteful are:  postponing maintenance, overstuffing the washer, doing it yourself if you do not have the skill.  With the extreme expense of caring for someone with dementia, we can all use a few easy tips to save money.

Learning From Our Mistakes

"So what if you bomb?  You learn from it.  You pick yourself up, try to figure out what went wrong and then move on, knowing you've given it your best shot." Billy Crystal

Good advice, and what it is reported successful people do.  We have all heard of the hundreds of attempts that Edison made on the filament of the electric light bulb before finding one that worked.  I love what he is quoted to have said -- that he was not discouraged with all the attempts, as each attempt gave him one more material that would not work as filament.  As caregivers we will make mistakes, we will have times when our patience is short, we will become frustrated.  We are, after all, human.  So, let us be gentle with ourselves, learn from what we have done, and move on.  

Dealing With Poor Behavior

"If the caregiver can determine what is causing the behavior, they can often reduce or eliminate it by addressing the underlying cause." Michele Mongillo, RN, MSN

Infections, pain, confusion, fear, dehydration, sleep deficits -- all can cause behavior problems.  It is important to speak calmly with someone who has dementia and is upset.  I make a policy of never arguing, nor trying to convince him of a different reality than the one he sees.  When he told me recently that the scrapes on his forehead and nose were caused by him driving a golf cart into other golf carts, I merely responded, "bummer."  What else is there to say?  He is falling more.  He is having more hallucinations, and his hallucinations are his reality.  Only if it is important to decrease his anxiety level do I correct him gently.  For instance, when he worried that he had left a car parked some where and he could not remember where and he was worried that he would get a ticket or it would be towed away, I offered to check in our garage to see if our vehicles were accounted for.  I was able to tell him that all vehicles were accounted for and that he did not need to worry that he had left one somewhere, and it gave him great peace of mind.  I could actually see him relax physically.  There is no need for him to carry more worries than this disease actually creates.  

Causes of Behavior Problems

"Poor behavior can be caused by pain, lack of sleep, hunger, thirst or feelings of being lost and not belonging." Samsclub.com/healthandwellness

I think fear is often the basis of poor behavior.  As the person with dementia becomes more confused, I think they are afraid, and that fear can come out looking like belligerence.  My loved one said to me recently, "The day I feared has come."  When I asked him to explain further, he indicated that he feared the day he would not be able to get out of a chair.  I can understand that fear, and I appreciate the times he is lucid enough to be in touch with what is fearful for him with this debilitating disease.  His bringing it up did give me the opportunity to talk about the probable need for a wheelchair sometime in the future.  The care facility staff and I both want him to be as mobile as possible for as long as possible, but it is sad to see how much strength and mobility he has lost in just the last 3 months. 

Incidence of Dementia

"One in 9 Americans 65 and over currently have Alzheimer's.  Of the top 10 causes of death, Alzheimer's is the only one that can't be cured or prevented." Peter Jaret

These statistics appear to be just for Alzheimer's Disease.  Since Lewy Bodies Dementia is the second-most-often occurring type of dementia, these numbers are obviously much larger.  "cannot be cured or prevented" -- sobering.  But there is some good news:  "A heart-healthy diet, physical activity, and social and cognitive stimulation can help preserve cognitive function." Jason Karlawish, M.D.  But, these are not a guarantee.  For at least the past 20+ years my loved one had those things, but he and I wonder if exposure to leaded gasoline, when he worked to put himself through high school and college at a gas station, is not the cause of his dementia.  

Dealing With the Diagnosis of Dementia

"Hearing that a parent, sibling, friend, or loved one has been diagnosed with Alzheimer's disease may be the most life-altering event you could endure." Michele Mongillo, RN, MSN

It is interesting that she leaves 'spouse' off the list -- because that may be the most life-altering event of them all --- when you learn your spouse has dementia.  I miss having anyone with whom to discuss things and make decisions.  That was always something I treasured about my spouse -- we discussed things and made decisions together.  Now I am faced with some decisions about my own living situation, and it is not possible -- or prudent -- to include him.  My habit has always been to seek out the best counsel I can find in any given situation, and then to make my own decision based on what is right for me.  And, that is what I will do in this case.  How do you make your decisions?

Water Is Necessary For Health

"Water is your body's principal chemical component and makes up about 60 percent of your body weight. Every system in your body depends on water. The Institute of Medicine determined that an adequate intake (AI) for men is roughly 3 liters (about 13 cups) of total beverages a day. The AI for women is 2.2 liters (about 9 cups) of total beverages a day."  Mayo Clinic

I drink a lot of water --- always have.  I love good, pure water.  We are so lucky if we live where we have access to good water.  People with dementia run the risk of being dehydrated.  Between the toileting and mobility issues, I think people with dementia cut back on their water intake and/or forget to drink.  If the person for whom I provide care is particularly confused, I prepare him something to drink.  He prefers cola, but any liquid is better than none.  There is also always water with ice by his chair.  We as caregivers also need to drink enough water.  Today, let us make sure we drink enough water. I am so grateful that I have easy access to good, clean water.  

Water is your body's principal chemical component and makes up about 60 percent of your body weight. Every system in your body depends on water.

Being Authentic

"Everyone's bald underneath their hair." Susan McHenry

We go to so much trouble to cover up who we really are.  I gave a talk at church on Sunday, and some friends came to support me -- such a touching and supportive gesture, and yet, I found it made me a bit nervous, and I found myself concerned with what they might think of my talk -- as they would be seeing me in a light not familiar to them.  To be nervous while speaking publicly is rather unlike me when I am at my best, but so like all of us humans sometimes.  It is scary to relax and be totally and truly who we are, and those people who provide us enough safety to be completely ourselves are very rare gifts.   Perhaps the reason that it is so hard to be truly ourselves in all situations is that it would be harder to accept people rejecting us for who we truly are, than being rejected for the cover-up we wear.  And yet, that is folly.  It is only in being ourselves that we can truly love and be loved by others.  Who in your life supports you in being fully who you are?

Our Homes

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   "No matter what the trends dictate, nothing is more important than your own personal style." Jennifer Lage
   
   

   The above quote pertains to one's home style, but it certainly applies to one's personal style.  Fads come and go, but good classic taste lasts through the decades.  Rather than follow a trend, it is important to find what our own style is and to honor that.  As caregivers we spend a lot of time in our homes.  It is important that the style within the home supports and nurtures us.  

Happy Mother's Day

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   "Everyone has a purpose in life  . . . a unique gift or special talent to give to others." Deepak Chopra
   
   

   Most caregivers are women according to statistics, and, therefore, many of them juggle the role of mother and professional person with that of being a caregiver.  It is a lot to carry.  So much so that we can forget that we have a unique gift or special talent to give to others that might be separate from the role of caregiving.  Today is a day we honor mothers, and I think it is important that we acknowledge the love, intuition and spiritual power of an integrated woman.  This is not to oppress men, but by honoring the integrated woman -- one who is acting out of love -- we honor all of humanity, to include the male aspects.  Today let us celebrate Mothers.  

It's Bigger Than That

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   "The Tao that can be told is not the eternal Tao" Lao-Tzu
   
   

   I watched the movie, Twelve Years a Slave, last night.  It is so sobering how humans can dehumanize and treat other humans -- or any other living creature.  This inhumanity of human toward human is something I have never been able to figure out, and so often it is in the name of God.  In the movie it showed where some plantation owners used Scripture to justify what they were doing.  Our capacity for cruelty, like a lot of life, is a mystery.  Mystery can also be very good -- as we recognize and honor the uniqueness of the humans with whom we interact.  Part of the fun in life is to enjoy the mysteries of life as we live it.

Gratitude

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   "Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow." Melody Beattie
   
   

   Perhaps there is nothing better for one's mental, physical and spiritual health than feeling gratitude.  When we focus on gratitude, we find more things about which to be grateful.  If we think of all thoughts as collective and going past all of us as if on a conveyor belt, then it becomes visually important to us to avoid negative, repetitive thoughts.  Practicing gratitude is one habit that helps us have more positive thoughts.  What are you grateful for today?  I am grateful that spring seems finally to have come in the area where I live, although there is a winter storm forecast for tonight.  At least we have milder temperatures, and any snow we get will not last long with the warmer temperatures.  

Self Care

1. 

   "Be gentle with yourself.  You are a child of the Universe, no less than the trees and the stars; you have a right to be here." Max Ehrmann
   
   

   My observation is that caregivers tend to not take good enough care of themselves.  So focused on the well-being of our loved one, we can become oblivious to our own self care.  We must take care of our own health.  We must not let this disease take both of us.  It is very sad that our loved one has a terminal illness, but we have an obligation to ourselves, the loved one with the terminal illness, and all the people who love us to defy the statistics and not allow this disease to make us a victim too.  The research says that 1/3 of us will die while caregiving, 1/3 will have their health badly damaged, and 1/3 will come out the other side of caregiving being better for having done it.  Let's consciously choose to be part of the 1/3 who survive and thrive from this experience of caregiving.

Seeing Clearly

1. 

   "Before fixing what you are looking at, check what you are looking through." Mark Nepo
   
   

   The context of this quote is that Mark Nepo went to see his 94 year old grandmother who was living in one room at this stage in life.  She said the sky looked gloomy, when Mark Nepo noticed that is was her window that was dirty.  Before we try to fix a situation, let us be sure we are seeing it clearly.  Too many times we jump to conclusions about what other people are thinking about us or doing.  It is prudent to make sure we see a situation clearly before taking action.

Care Level Options

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   "Levels of care include home care, adult day care, respite workers coming in to the home, assisted living, a care facility between assisted and nursing home, nursing home and hospice." LBDA
   
   

   By the time it became clear that we needed to consider placement in a care facility for the well being of my husband and myself, his needs were greater than what assisted living centers would meet.  So, he went into a care facility that offers more care than assisted living, but less than nursing homes.  I urge you readers to not wait before you check into what assistance you may need or want -- for yourself and for your loved one.  There are long waiting lists at many care facilities.  Please do not wait until your health is on the line from your caregiving.  

Considering One's Priorities

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   "I want to know God's thoughts . . . . the rest are details." Albert Einstein

   This is such a famous quote of Einstein, and yet, what does it mean?  Perhaps it means identifying what is important -- your priorities -- and then putting your energy into those priorities.  I was raised with the work ethic of working very hard, and I am not sure that is at all wise.  Work need not be our top priority.  But, what does deserve top priority?  For me it is family, relationships, acting out of love and respect to all people, integrity, speaking the truth even when it is difficult, and remembering and nurturing my spiritual self.  What is important to you?

Staying Active

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   "My grandmother started walking five miles a day when she was 60.  She's 97 now, and we don't know where the heck she is." Ellen DeGeneres
   
   

   A humorous reminder of the importance of exercise.  Study after study confirms that one of the best things we can do for our health is staying physically active.  Staying physically active even helps us stay mentally and cognitively healthy.  I love to exercise, so that helps me with staying active.  Hiking, biking, skiing, water aerobics, gardening, household chores -- all are a means by which I stay active.  We have had a significant spring/winter storm, so I have spent over 2 hours a day shoveling -- not my favorite form of exercise, but I did enjoy listening to the birds and breathing in the fresh air.  What exercise can you create in your day?

   
   

Resource for Those Dealing with Death

1. "On top of the emotional crisis of losing a loved one, multiple decisions have to be made after the death -- immediately and in the weeks ahead. ABA/AARP Checklist for Family Survivors is a guide to help deal with the personal and financial affairs of the person who has died." AARP
   

   

   
   

   Some of the suggests from this guide are:  check driver's license to see if your loved one wanted to be an organ donor, carry out the loved one's funeral requests, find out if any part of the funeral was prepaid, do not include address in obituary - as burglars use that information, keep expressions of condolence so you can acknowledge them, accept offers to help, shred papers with personal information such as bank statements or canceled checks, alert credit bureaus of the death.  To buy the entire guide, go to aarp.org/checklistforfamily

Healthy Habits

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   "A laugh and a long sleep are the best cures in the doctor's book."  Irish Proverb
   

   
   

   How very true.  As caregivers, whether for someone with dementia or a small child or someone with a disability, sleep and laughter may elude us.  Parents of very young children are often sleep-deprived, which has a negative effect on one's ability to cope and stay well.  Those of us caregiving for someone with dementia are familiar with the sleep disorders that accompany many forms of that disease.  So, we need to have a plan to make sure we get adequate sleep.  Sleep comes first, and then we can feel well enough to laugh.  What is your plan for ensuring a good night's sleep for yourself?

Moving Toward Our Potential

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   "It's never too late to be what you might have been." George Eliot

   It is true.  We all know people who came into their own late in life.  I have read that Colonel Sanders started the Kentucky Fried Chicken food franchises when he found he did not like trying to live on Social Security at age 65.  Grandma Moses became a famous painter very late in life.  It is never to late to continue to grow as human beings.  We can continue to learn, take up new activities, meet new people, create new experiences for ourselves, volunteer in new situations.  What one thing can you do today to continue to develop your potential?  Even as caregivers, we can read something new, learn something new, find a new way to create respite for ourselves.