Our Thoughts Shape Us

"We steadily grow into the likeness of that which we think of most." Christian D. Larson

There are many teachers who are teaching this currently.  Our thoughts shape the quality of our lives, and this author is saying that we actually grow into looking like the content of our thoughts.   That may be true.  When we think of people whose countenances are constantly angry, it is probably reflective of their thoughts.  When we see people cheerful and smiling, it is probably reflective of their thoughts.  Which way would you rather look?  It is worth considering.  We do have some control over our appearance, and our thoughts contribute to our looks.  

Infections

"Urinary tract infection in the elderly or in people with Alzheimer's or other types of dementia can profoundly affect, not only their health, but can result in significant behavioral changes. It is always worth considering changes in behavior may be due to infections like a urinary infection or constipation etc" alzheimers.org

How very true.  My loved one has been significantly more of a behavior problem --- crawling around his room, dragging things out and disrupting the room.  I was there recently, and it looked as if someone had trashed the room -- things were strewn about.  When I talked with him, he told me he had pain in his feet, so I started to check his feet and legs.  He had severe cellulitis in his lower legs, so bad there were open and oozing sores.  I called this infection to the attention of staff and arranged to get him to the ER.  I think his decline in lucidity and increase in behavioral problems is the result of this infection.  And, yes, I can certainly wonder why the staff at the care facility had not noticed and taken care of this.  I have asked the nurse to check his legs frequently to make sure this does not happen again.  He was much more lucid after being on the antibiotic, although the lucidity is continuing to fluctuate and is not back to the level it was in January.

Continuum of Care

"Care for someone who needs assistance ranges from in-home care, paid care at home, day care facilities, assisted living, care facilities which are more than assisted living but less than nursing homes, nursing homes, and hospice." AARP

By the time I faced the fact that continuing to provide 24/7 care at home was going to kill me and checked into assisted living centers, none of them would take my loved one because his needs were greater than the services they provided.  When he moved into a care facility, it was one which provided services between assisted living centers and nursing homes.  We are now at the point where his needs may be too great to remain in that type of facility, and I have spent the week checking out nursing homes and other options.  Sobering task.  Many of the facilities are full, some take only short-term rehabilitation patients, some would take women but not men.  Please learn from my mistake and do not wait too long to check into appropriate care.  

Stormy Clouds

Quote of the Day

Growth is the only evidence of life.

John Henry Newman

Read more at http://www.brainyquote.com/quotes_of_the_day.html#wiB2wtsm9BpRrxcD.99

"Growth is the only evidence of life."  John Henry Newman

As caregivers, we will experience days of stormy clouds.  We are currently.  Much less lucidity, more physical difficulties - such as falling, much more complaining.  It seems odd that now is when he has begun again to insist that he does not need assistance, when he can no longer dress himself.  There are stormy cloud within our role as caregivers; the point will be to not allow ourselves to be swept away with the storms.  We must, by necessity, develop some objectivity.  This terminal illness is not our journey to take.  Witnessing respectfully the journey of the person with the terminal illness is our journey --- not the illness itself.  I believe there is a purpose in everything in life, and it is my daily intention to see the purpose his journey has for me, but I must remember --- his journey is not mine.

Variation in Lucidity

"A prominent feature of LBD (Lewy Bodies Dementia) is fluctuating lucidity." lbda.org

Something I had not realized about Lewy Bodies Dementia is that the times of not being lucid, and the depths of the not being lucid increase as the ravages of the disease increase.  Since January, Dwane is more and more of the time not lucid.  He speaks of people coming from Minneapolis and telling him he is just fine, to saying that his cuckoo clock woke everyone up (he does not have a cuckoo clock), to reporting that people kept him in a cave all night.  I listen carefully to make sure there is no mistreatment of him in the care facility, but it does seem just to be increased confusion and less lucidity.  He has also regressed into being largely dissatisfied most of the time about most everything.  So sad to see. 

Criticism

"If you have no critics, you'll likely have no success."  Malcolm X

Criticism is one thing of which we can be assured as caregivers.  I have been told by countless families that there has been discord and disagreement from family members about the care of the care receiver.  It is my experience that this criticism is usually from someone who has not been active in helping with the caregiving.  The likelihood of criticism is increased with Lewy Bodies Dementia because of the significant variation in lucidity.  Someone who sees the care receiver infrequently may find the person lucid and think the person is doing better than he or she actually is.  I had a relative who saw my loved one once in over a year and who told Dwane that he did not need to be in assisted living.  What an incredible disservice to Dwane!  And to me.  My advice is:  if a person is not actively involved in the caregiving, they have no right to tell the person the care provided is wrong.  There are rules and regulations for placing someone in a care facility, which is fortunate, as the decision cannot be based on what one person thinks.  To be helpful to the care giver and the care receiver, people can help with the caregiving.  That will give everyone a better and more accurate idea of the needs and appropriateness of care.   In the end, however, we who are caregivers need to make the best decisions we can and ignore the criticism.

Value of Silence

In the attitude of silence the soul finds the path in a clearer light, and what is elusive and deceptive resolves itself into crystal clearness.  Our life is a long and arduous quest after Truth.    Mahatma Gandhi

Silence.  Something hard to come by these days with our living in cities and our being constantly in contact with some form of communication via cell phones, etc.  People who have lived extraordinary lives know the value of silence.  We do find our path in a clearer light and we do become clear about things that may have been elusive -- when we make a practice of sitting in silence and receiving guidance and comfort from whatever source of divinity we know.  Perhaps it is even getting in touch with your inner truth.  There is too much mystery for us to know for sure what is guiding us, but we can know that when we honor silence, we will find answers and peace of mind.  

Our Thoughts Are Our Plans

Whatever you're thinking about is literally like planning a future event. When you're worrying, you are planning. When you are appreciating, you are planning...What are you planning?

---Abraham

It is both sobering and helpful to consider that our thoughts are our plans.  We are helping to create our future by what we think about.  If we worry about money, we will likely experience the lack of it.  If we resist time by always being late, we may experience that the good experiences of life will come to us late.  Most certainly, we cannot control all of our lives and experiences, but we can shape the overall tone of our lives by our thoughts and attitudes.  Today, consider what kind of life you want, and align your thoughts accordingly.  

Tool to Help with Money

"Get a handle on your finances the free and fast way. Mint does all the work of organizing and categorizing your spending for you. See where every dime goes and make money decisions you feel good about." www/mint.com

As caregivers, we have little time to take care of such important matters as finances.  This website from Intuit looks like it could be very helpful.  It organizes and categorizes your spending, so that you know where you stand with money.  Providing care for someone is very expensive, no matter how you provide it.  If you provide it yourself,  you may have the consequences of lost wages.  If you hire someone in your home, that is expensive.  If you choose placement in a care facility, that, too, is expensive.  This website could be a good tool to help us stay on top of our money and the decisions we make on how to spend it.

And, just a reminder, if you are thinking about a long-term care facility, I urge you to call.  For most of them there are waiting lists, and some have chosen to just do short-term rehabilitation instead of long-term care.  We need, as caregivers, to be proactive in arranging the type of care that our loved one needs, or will need.

Wheel of Life

1. 

   Within the Physical/Health aspect of the Wheel of Life, we went to one of the best-of-the-best for our neurological evaluation: Mayo Clinic.  They concurred with what our family doctor had already implemented, the medications: Aricept and Namenda.  In recent medical research these two medications together are considered to be the best defense to slow the progression of dementia. They are not a cure; they simply slow the process.  At Mayo Clinic we also had a sleep study done.  With Lewy Bodies Dementia there is often a sleep disorder called REM sleep disorder, in which the person acts out their dreams.  This is dangerous for the person with the disorder and any bed-mate, because the person thrashes, hits, can even get up and run into walls.  Mayo Clinic put Dwane on clonazepam, which is typically administered to treat seizures and panic attack.  This medication was wonderful in helping us have peaceful nights. 

   
   

Avoid Arguing

Many years ago I took a class from someone who was trained as an expert in working with people who are aging.  The teacher said that when a person says something incorrect, that the listener should reflect reality back to them by correcting them.  I have seen this countless times between people.  The person with diminished cognitive capacity says something, and the other person corrects them – to the point of arguing.  I feel strongly that this is the wrong approach.  Not only is it disrespectful, it is pointless.  A case in point.  Recently Dwane told me a long story about how the staff in the assisted living facility was working him long hours, 30 hour days, with no food.  It would have been pointless, in my opinion, to try to convince him that this was not reality, so I responded with a truth that was within his topic matter and said, “You have always worked so hard all your life.”  Now, you may think I missed the point and that maybe he is being mistreated in the facility, but I am quite certain he was expressing an adjusted reality.  He complains a lot about some of the staff, and there is some truth to those complaints. I listen to those complaints and help him stand up for himself.  I also talk with the staff and tell them I want him treated at all times with kindness and respect.  I am there often enough that I see that one staff member can be impatient, but I think the basis of Dwane’s complaint is his frustration that they are not letting him wear his blue jeans any longer because he is now wearing adaptive clothing.   His life situation is not what he would prefer, but, then again, neither is mine. 

Continuum of Care

Considering the Continuum of Care

"Dwane is already in assisted living; it is just that you are doing all the assisting.” Holly Crump, Friend

The above quote was during a time when I was wondering out loud about whether we were at the point of needing assisted living, and her comment helped me see my circumstances for what they were.  Her comment, along with concern expressed from my daughter, helped me realize the extent of caregiving I was giving and the increasing needs and stress.

The issue of how to provide care and safety for your loved one will be an ongoing concern.  Research reveals that most caregivers wait too long to place their loved one into a care facility.  I urge you to not wait.  There are waiting lists at most facilities, and it is critical – if we are considering at some point using a facility to provide care --- that we visit the facilities and get on the waiting list of the one we prefer.  I waited too long, so that assisted living facilities would no longer consider taking my loved one because they could not meet the level of his needs.  Fortunately, a facility was available that offered care above the assisted living level.  Perhaps you prefer to keep your loved one at home and hire care to be delivered within your home.  There are drawbacks and benefits to that choice.  It is expensive.  Yes, it our case it was much more expensive than a facility, but the biggest problem was the severe opposition of my spouse.  He would lock caregivers out of the house, and I would not be aware that he was left alone.  So, every situation is very unique, and we must make decisions within our circumstances. 

There is a continuum of care for people who require caregiving, and that is:  home health assistance in the home, adult day care, assisted living, facilities that offer care between assisted living and nursing home, and nursing homes.  Then, when a physician has said the person has 6 months or less to live, there is hospice. 

Invitation to Practice:   Looking down the road into the future, what are the best options for care for your loved one?  Please consider your needs as well as that of your loved one.  

Eating Healthy

"Eating healthy may be easier than you think -- if you know how to separate food fact from fiction." Jessica Girdwain

Myths abound in life, and it is important to separate fact from fiction in many areas of life, but here are some facts about food.  White fruits and vegetables may not always be as vitamin-rich as their more colorful cousins, but they do contain properties that can help prevent stroke.  Canned food is not only more affordable, but it is also a rich source of vitamins -- as the produce is picked and processed right away, which preserves the nutrients.  In winter months if you live where food cannot be produced nearby, then canned food is a great value for money and nutrition.  Some nutrients, like lycopene in tomatoes, are more easily absorbed by the body after it is cooked.   Very moderate amounts of any alcoholic beverage (1 drink for women and 2 for men) can help reduce the risk of cardiovascular disease.

As caregivers, we are short on time but still need to manage our nutrition.  This can be made easier by using canned produce and eating a wide range of vegetables, with some protein, and healthy oils like olive oil.

The Dying Process

"Doctors and other professionals who manage end-of-life care advise loved ones to take their cues from the dying and avoid projecting their own desires or needs onto the person. They also urge loved ones to continue speaking comfortingly to a dying person -- hearing may be one of the last things to go." Molly Edmonds

The subject of death is often something we avoid, and even though I know intellectually that we are dealing with a terminal illness, the reality of watching the declining process is very difficult.  In the last two weeks my spouse is exhibiting a significant decline in both physical and cognitive functioning.  Death is not imminent, but I am reminded that we are in that process.  According to the article cited above from science.howstuffworks.com, there is a predictable process as the body shuts down.  Appetite is lessened, skin may become mottled, beverage intake is decreased, and the body's systems start to shut down.  There is more sleeping.  According to experts in the dying process, it is important for us to honor this process and not force food or drink.  We also need to honor the person's way of dying, and to speak kindly even when the person does not seem aware.  

Power of Silence

"Honest people speak truthfully and wisely.  It takes greater wisdom to know when to be silent, than when to speak.  Most of us talk far too much, and our effusiveness bears witness to our undisciplined minds."  Ernest Holmes

This is a noble truth, and as caregivers it is something to practice.  People with dementia or any terminal illness may not be able to process all the talking some people do.  There are many times when I just rest in silence with Dwane.  It is too difficult for him sometimes to express himself, and that causes him frustration; so when we are together, sometimes I am present but silent.  It is our presence that other people yearn for; knowing we love and support them; and, sometimes, that is said better by silence than by talking.  What if we would practice saying only what we mean, and saying it with kindness?  It would be a different world if we all practiced that.  According to Ernest Holmes, the law of Mind gives us back our words in form.  If that is true, isn't it enough reason to monitor what we say?  Speaking simply, truthfully and in kindness can support us in this caregiving task.  

Compassion

"We survive . . . . and then we die." Ojibway Elder

Knowing that no one gets out of here alive can help us have compassion for ourselves and others.  Yes, ourselves first, because when we are compassionate toward ourselves, we can be compassionate toward all others.  Too much of what we have experienced in life has been the result of self hatred projected out onto others.  The criticism of others is often based in a person's own self hatred, and the intolerance we have toward others is based in our own intolerance of ourselves.  When Jesus said in the bible that we must become as little children to enter the kingdom of heaven, this is perhaps what he meant.  Little children do not have self doubt until they learn it from the feedback of others.  Our life journey is to come back into healthy self acceptance.  All creation benefits when we like ourselves.  Truly like ourselves.

Patience

"Given sincerity, there will be enlightenment." The Doctrine of the Mean, 200 B.C.E.

Patience is something we need in spades as caregivers.  Everything takes longer, so in order not to be frustrated by that, we need to plan ahead.  In our society today, it seems everything is rushed, everyone is in a hurry.  That mode of being will not serve us well as caregivers for someone with dementia.  One way I deal with this is to make his medical appointments in the afternoon.  It is not realistic, given the time it takes him to dress and eat, to try to have appointments in the morning.  I also have to allow much longer to get his coat on and get him into a vehicle.  This process is made worse if we are pressed for time and rushing things.  It is like having a good cup of tea.  It cannot be rushed.  To bring out the full flavor of the tea leaves, they need time to steep in the hot water.  To bring out the best in our loved one and in the caregiving situation, we need adequate time for tasks.  Planning enough time brings out the best in our loved one and in ourselves, and supports the process of patience.

Simplicity

"I have just three things to teach:  simplicity, patience compassion.  These are your greatest treasures."  Lao-tzu

These three things are important for caregivers to keep in mind.  Today we will deal with simplicity. The more simple we can keep things, the smoother our lives as caregivers can be.  Being simple in what we say to someone with dementia is very important.  The person with dementia can appear to understand more than she or he actually does; so, we as caregivers can keep our language simple.  One example is for us to give one direction at a time, and to keep our sentences short and brief.  Simplicity applies to the environment as well.  Television remotes that are simple to use, phones that are simple with large numerals, furniture and arrangement is best kept simple as the person with dementia will probably have a more and more difficulty in mobility.  The person with dementia often cannot process all the information coming at him or her, and we can help alleviate confusion and anxiety by keeping things simple.  Simple does not mean lack of enrichment in the environment; it just means keeping the complications to a minimum.  

Cutting Back on Sugar

"The number one thing you can do for your health and weight is cut down on sugar intake." Anne Alexander

Sugar is hidden in many processed foods, along with some form of wheat product.  The hidden sugar can amount to us consuming 2/3 cup of sugar every day.  Some cereals contain as many as ten different forms of sugar.  In order to cut down on the amount of sugar we eat every day, it pays to read labels.  I was astonished one day when buying peanut butter that all brands but one contained sugar in some form.  Ways we can cut down on sugar is to limit or eliminate soda and read labels.  The new popular low fat foods often compensate for the taste fat would have given the food by adding more sugar.  There are some in the mental health field who believe that sugar is addictive, so it is prudent for us to check the amount we are eating.

"The number one thing you can do for your health and weight is cut down on sugar intake." Anne Alexander

Greed

"We suffer, often unknowingly, from wanting to be in two places at once, from wanting to experience more than one person can.  This is a form of greed, of wanting everything.  The truth is that one experience taken to heart will satisfy our hunger to be loved by everyone." Mark Nepo

An interesting take on greed.  Another interesting take on greed happened for me many years ago when a dear friend was closing her store.  As she put things on even more of a discount, she was told by her consultant that the people, who kept coming in trying to get the items at an even more discounted price, were exhibiting greed:  trying to get something for nothing or for very little.  Sometimes it is tempting to think we would rather be one place than another, and we all know people who cut their time short at one place to hurry to get to another.  It seems it is human nature to fear we are missing out, but it is informative to realize that this is greed.  We cannot be truly happy until we can accept what is.  That is worth repeating:  we cannot be truly happy until we can accept that what is in front of our lives at this moment is what is most important and appropriate.  Let us settle into this moment.

Remembering the Good

"There seem to be strange quirks in the human mind.  It has the ability to remember so much that is not good, and to remember so little that is good." Ernest Holmes

How true.  Perhaps that is one reason for taking photos -- they help us remember a significant event that is good.  It does seem the human brain is hard-wired to notice and remember the negative or what was to be feared , and psychologists have suggested that this was necessary for our species to have survived.   But, we no longer have to worry about being eaten by saber tooth tigers, so perhaps it is time to put aside that orientation and to focus, instead, on what is good in one's life.  It is bitterly cold here today; and, yet, the weather here is not as bad as in some places.  For those of us reading this blog, we probably had enough to eat today, and we probably have shelter.  Most people who are attracted to this blog also have people with whom to share their lives.  Granted, if one is a caregiver, our life situation might not be what we envisioned; but there is still goodness to notice and appreciate.  I appreciate the people who provide care with kindness to those who need it.  I appreciate that the care of those people allows me to have freedom to live my own life.  All in all, life is very good.    

The Long Process of Grieving

“No one ever told me that grief felt so like fear.”  C. S. Lewis
Being a caregiver for someone we love is a long, long process of grieving.  Even though we know in our intellect that the one for whom we are providing caregiving has a terminal illness, the reality of living with that decline is quite different from knowing it intellectually.  And, fear is a part of it.  I fear that we have reached a new normal, and that normal is significantly below what was just one week ago.  One week ago today I took my care receiver to the dentist and out to lunch.  Two days later he awoke significantly confused with hallucinations.  Even now, a week later, he is not who he was just a week ago.  It is so very, very sad.  I have ordered him new adaptive clothing, and I hope he will wear it -- as it will make his own life and that of the caregivers so much easier.  Yes, we are dealing with the death process, but I have to admit that Woody Allen had a point when he said he did not want to be around to see it.    

Core Issues

"The stuff of our lives doesn't change.  It is we who change in relation to it." Molly Voss 

It seems we each have core issues to deal with in life, and those issues keep showing up over and over in different forms.  For those of us who are caregivers, it might benefit us from looking at - in what circumstances did we give care before?  Is it possible that taking responsibility for someone else has been a theme of our lives?  I know that I was overly identified in the role of parent while I was raising my children.  Being a good parent was a large part of my identity.  There are some in the mental health field who believe that we must open the door of our core issues, really deal with them, to find our self worth --- which is separate from any of the tasks we do or have ever done.  What are you willing to look at today?

Our Nonverbal Language

"Before we blink, we know each other.  We speak before we speak, with eyes and lips, in how we tip our heads, in how we lean like trees tired of waiting for the sun. We tell our whole story before we even open our mouths."  Mark Nepo

It is said that first impressions are what gets a person hired for employment, and that those first impressions happen in the first 5 seconds!  5 seconds and the people with whom we are interacting have already formed an opinion of who we are.
It is good to keep that information in mind as we meet and interact with people, and to make those first 5 seconds speak in the way we want them to speak.  I heard someone say recently that we should sit "regally".  What a lovely idea.  What if we inhabited our bodies in honor and humility?  It is such rare good fortune to have been born human --- let us honor that by inhabiting our bodies with honor and humility.  

Waiting

"When we find ourselves stalled in our very serious and ambitious plans, we are often being asked to refind the beginning of time.  Unfortunately, we are all so high-paced, running so fast to where we want to be, that many of us are forced to slow down through illness or breakage." Mark Nepo

Waiting.  Waiting is a familiar experience in the role of caregivers.  In the 6 hours it took for me to take him to a dentist, three were spent driving; the rest of the time I was waiting.  Waiting while the dental people did their work, and then waiting for him to eat.  Patience has never been a well-developed quality for me, so I am getting a chance to develop it and honor it more.  It is prudent for us to learn to wait; because if we do not learn that, I think Nepo is right --- our bodies force us to slow down through illness or breakage.  There is risk enough of that breaking down with the stress of caregiving.  Let us relax into the waiting periods and not allow them to be stressful as well.
         "Now is the appointed time to recognize that we are the change we have been waiting for." Eugene Holden
Now is the time to recognize that we can allow ourselves to be changed -- in positive ways -- in this role of caregiving; of which waiting is a big part.

Hallucinations Increasing

"Core Symptoms of Lewy Bodies Dementia:   Fluctuating cognition with pronounced variations in attention and alertness. Recurrent complex visual hallucinations, typically well formed and detailed. Spontaneous features of parkinsonism"  http://www.lbda.org

It is so sad to watch the progression of Lewy Bodies Dementia.  In addition to more difficulty with cognitive processing and mobility, he has begun to have significantly more hallucinations.  Today he told me a long, involved story about being in a cave with 3 other men who left him to fend for himself.  In the past he would have been able to tell me this was a dream or that he wasn't sure if it was real, but today he is adamant that this occurred.  I do not argue with him; it would be pointless.  I just listen and reevaluate to what extent we can rely on his reporting of things now.  Of course I know this is a progressive disease.  It is just so hard to watch it progress.  

Our Journey

"You cannot see the working, for it is as delicate as a butterfly's journey through a hurricane." Letters of the Scattered Brotherhood

Some of us spend time puzzling what life is all about.  One of the things about which there is need for wisdom and insight is knowing when to go.  People seem to have a hard time leaving relationships and situations.  There is some social stigma about "giving up"; but what if we are not giving up, but giving in.  Giving in to the greater wisdom of what is next and best for us.  Some situations may have started out good, but no longer are.  Then, perhaps, it is time to go.  Life is about leavings and letting go.  We let go of our youth, the body image we had when we were 20, houses, jobs, relationships.  We will even let go of our own body at some point.  We sometimes cannot see the workings of the dance of our own life, but we can trust we are on the right path when we honor the best in ourselves and others.  And sometimes that means leaving or being left.

Creating Safety in the Home

"Stairs can be one of the largest barriers to remaining in the home as a person ages." Leacey Brown, gerontology field specialist

There are three main areas to consider in making one's home a safer place for people to stay in as they grow older:  a main floor laundry, a bedroom on the main floor, and an accessible bathroom.  If your home has those three things, there are other considerations as well.  The height of toilets should be 18 inches.  Lighting is very important, as people's vision changes as they get older and a greater amount of light is needed to see well.  Thresholds are best if they are flush with the floor, and something I have discovered is that all traffic patterns need to be clear of any obstacles.  I have learned to never place anything on the floor, because it is so easily tripped over.   I also have night lights lighting up every traffic pattern.  "Falls in bathrooms are one of the leading causes of nursing home placement," Brown says; so grab bars are very important in tubs and showers. Brown suggests that a person go through their house room by room to assess the safety of that room and to make changes as necessary.  A website that offers suggestions for safety is:   http://homemods.org/resources/pages/safety.shtml

Integrity

"Integrity is an unending process of letting our inner experience and our outer experience complete each other, in spite of our very human lapses." Mark Nepo

Nepo is talking about being true to ourselves and aware of others.  At the core, each of us is a very good person.  Sometimes that goodness is shaped and distorted by treatment from others, especially when we are children.  To live with integrity means to be true to oneself.  It also means that we experience other people in their wholeness.  Too often we numb ourselves with our lists to-do, our mental gymnastics, our worries -- and we do not see the beauty in ourselves and others.  Today let us be aware of our own inner beauty and wholeness, and that of all other people.