I have worked with hundreds of care givers and never have I experienced such a care giving warrior as this person whom we will call Ruth. Her husband is a retired law enforcement officer who was diagnosed with Alzheimer’s disease several years ago. He has a heart as big as hers and is the epitome of what we all pray for if our loved one is diagnosed someday with this disease. It is what I call a match made in Heaven.
In my experience, the Christmas Season is the most difficult time of the year for the family who has a loved one with dementia. If we could only know what is in store for the next year. I have had this conversation many times with my fishing buddies. The question is: “What would the world be like if we new what God had in store for us every day of our life?” Would your best friend be calling you to say that they could not drive today because they new they were to die in an auto accident? Would your daughter tell you that she would not date the man you approved of because she new that he would experience several tragedies in the future resulting in his own alcoholism? The world would be a mess!
Ruth has chosen the humble path of servitude and has accepted the cards she was dealt. When she promised her husband that she would stick by his side until death do us part, she meant it! What she did not promise was that she would do it with a positive attitude and a big heart. What a fortunate man! What follows is here Christmas letter to her friends and family:
“YOU’LL BE IN OUR HEARTS THIS CHRISTMAS SEASON- 2008”
We don’t have all of our Christmas decorations up yet but as we continue putting them up here and there, our hearts expectation is that Christ will do something new in all of us this special season.
We are reminded that Mary & Joseph were real people and they were deeply affected by all that took place. Likewise, Christ’s presence should deeply affect us. He is our God, our Savior, our friend, our King. He has come! He lives today! He is! That is indeed reason to celebrate!
Our daughter Shelly was here with us for two months this last summer. What a joy to have her here. We were happy to have our son Ben visit us also in the summer as well as a more recent visit. It is good that our daughter Karen still lives close by so she can stop in frequently. We are thankful for the many things our children do for us and the love they share with us.
The Lord has given us a good year because of his Loving Presence. We are doing ok physically, however, we both are learning to adjust and accept the progression of Larry’s dementia. Despite the many daily difficulties that contend with, secure in our love and knowing God is always with us, we are mostly content. Maybe it’s the pleasure of making another person happy. But we know it is in part, the encouragement we receive from family, from friends, from support groups, and the daily blessings from God.
The Lord is teaching me to release to Him my hopes and desires so that He can bring them to pass. I find that God takes yesterday’s hopes and challenges me to let go of them for a greater display of his Grace. Daily He says “let go, and trust Me. Watch me work”. My chosen scripture (Which has been printed in large letters on my dining room area wall) is found in Proverbs 3:5 “Trust in the Lord with all your heart…” May this scripture be yours in the 2009 year!
We wish you a Christmas Joy. And may the Spirit of the Season fill your heart during this special time.
Can you find anything about this letter that has to do with meeting her own needs? When families often ask me what are the qualities necessary to be a good care giver? The answer can be summed up into one word, “Grace”.
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Delirium is a sudden, fluctuating, and usually reversible cognitive disorder characterized by disorientation, the inability to pay attention, the inability to think clearly, and a change in the level of consciousness.
Delirium is an abnormal mental state, not a disease. Although the term has a specific medical definition, it is often used to describe any type of confusion.
Because delirium is a temporary condition, determining how many people have it is difficult. Delirium, which is usually a sign of a newly developed disorder, affects about one third of hospitalized people aged 70 or older.
Development or worsening of almost any disorder can cause delirium. Any person can become delirious when they are extremely ill or are taking drugs that affect brain function. However, delirium can result from less severe conditions in older people and in people whose brain has been affected by a stroke, dementia, or other disorders that cause nerve degeneration. In such people, delirium can result from a relatively minor illness, such as retention of urine or feces; sensory deprivation, such as that due to being socially isolated or not wearing glasses or hearing aids; or prolonged sleep deprivation. For example, the sensory and sleep deprivation that occurs in intensive care units (ICUs) may contribute to delirium. This disorder is sometimes called ICU psychosis.
Being in the hospital can also contribute to or trigger delirium. About 10 to 20% of older people develop delirium while they are in the hospital. Delirium is also very common after surgery, probably because of the stress of surgery, the anesthetics used during surgery, and the analgesics used after surgery. The most common reversible cause of delirium is drugs. (NIMH)
Delirium may occur in persons with a normal brain but is more common in those with underlying brain disease, such as dementia. It is more common in the elderly, probably due to changes in neurotransmitters, geriatric cerebral cell loss, and concomitant disease. Delirium may be due to primary brain diseases or diseases elsewhere in the body that affect the brain; causes are usually metabolic, toxic, structural, or infectious. Regardless of cause, the cerebral hemispheres or the arousal mechanisms of the thalamus and reticular activating system of the brain stem become physiologically impaired. Disruption of sleep and extreme stress superimposed on acute disease may worsen symptoms of delirium (as in intensive care psychosis).
Treatment
Symptoms are usually reversible when the underlying cause is identified quickly and managed properly, particularly if the cause is hypoglycemia, an infection, an iatrogenic factor, drug toxicity, or an electrolyte imbalance. However, recovery may be slow (days to even weeks or months), especially in the elderly.
All unnecessary drugs should be stopped. Identifiable disease should be treated, and fluids and nutrients should be given. A patient suspected of alcohol abuse or withdrawal should be given thiamine 100 mg IM daily for at least 5 days, to ensure absorption. During hospitalization, such patients should be monitored for signs of withdrawal, which can be manifested by autonomic disturbances and worsening confusion.
The environment should be as quiet and calm as possible, preferably with low lighting but not total darkness. Staff and family members should reassure the patient, reinforce orientation, and explain proceedings at every opportunity. Additional drugs should be avoided unless needed to reverse the underlying condition. However, sometimes agitation must be treated symptomatically, particularly when it threatens the well-being of the patient, a caregiver, or a staff member.
Few scientific data are available to guide the choice of drugs to treat delirium. Low doses of haloperidol (as little as 0.25 mg po, IM, or IV) or thioridazine (5 mg po) can help in managing the delirious patient. Larger doses (haloperidol 2 to 5 mg or thioridazine 10 to 20 mg) are sometimes needed. Newer drugs, such as risperidone, can be used instead of haloperidol for oral therapy but are not available IM or IV. Short- or intermediate-acting benzodiazepines (eg, alprazolam, triazolam) can control agitation over the short term; benzodiazepines may worsen confusion, but if required, the smallest effective dose should be used. All psychoactive drugs should be reduced and then eliminated as soon as possible so that recovery can be assessed. (Merk, 2nd Edition)
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A client I had been working with shared a letter with me she had received from her son who lives across the country. She cares for her husband who has Alzheimer’s disease. On this particular visit, she said that her son wanted them to move to the East Coast so that he could care for them. When I asked what he did for a living, she said he was a successful, but very busy Software Engineer. She had some concerns about a letter he had sent her and wanted to share it with me so that we could discuss it. I knew this would be interesting since most engineers are linear thinkers.
Keep in mind that this couple had only given some thought to the concept of moving to the East Coast in the past. At this time, they were not even remotely able or ready to take it to the next level. They have long standing relationships with their doctor’s, have an extensive social network, and a specialized dementia care program in which her husband attends two days a week, a program that specializes in increasing blood flow to the brain which has been proven to slow the progression of the disease. This program allows her to take a break during the day and it provides her husband with much needed socialization with people who are trained extensively in dementia care activities. Activities that increase blood flow to the brain include the following: Socializing, Diet, Monitoring of other conditions, Physical Exercise, Proper Diet, Exercises for the Brain, and Music.
Let’s take a look at an excerpt from the letter so that you yourself can examine his intentions. The names of the individuals as well as any other identifiers in the letter have been removed for privacy purposes otherwise; I have not changed a word from title to conclusion.
“Long term Planning for Mom and Dad” (This was the title of the letter)
“Premise:
Staying at 1234 Lane under the current conditions is not tenable for much longer-less than one and one-half years in the absence of persistent illness or significant crisis. At age 85, Mom is reaching the limits of her ability to maintain the house and care for Dad. A breaking point is on the horizon, and only if we become proactive will we be in the position to dictate the terms under which we live in the future rather than having those terms dictated to us by circumstances out of control.
A priority in our decision making is to be able to provide Dad with the quality of care and quality of life he currently enjoys. He receives extremely high quality care and thus he has to accept that in order to continue some semblance of such care, some sacrifices must be made.
Rationale:
Mom cooks, cleans, shops, drives, monitors medications, oversees all of Dads doctor’s appointments and handles the house along with everything relating to Dad. Some of these responsibilities are new as a result of Dad’s inability to drive, but most of them she has been upholding for decades. In either case, Mom is reaching the limits of her ability to maintain them. With each passing month, she is pushed closer to a breaking point at which she will be unable to provide care either for Dad or for herself. In short, Mom needs help!
Solution:
Either we begin using financial resources in Washington to hire help and alleviate the responsibilities on Mom, or we move Mom and Dad closer to family assistance. (Whose financial resources will be used?) Both options have drawbacks; no idyllic solutions exist. Either option we choose carries with it burdens and losses. For instance, the concern for the first option is the speed at which financial resources will be drained and the difficulty of maintaining safe and quality assistance. For this and other reasons, we believe the solution of relying on family help incurs the least amount of loss and maximizes the potential for gain. For this reason, we believe moving Mom and Dad to the East Coast is preferred.”
Unfortunately, parents are being subjected to this way of thinking everyday. The generation of people I have the honor of working with have several character traits in common. Lets take a closer look at the traits I admire the most: They keep their promises including “Until death do us part!”, They do not want to burden others with their problems, They have learned the hard way how to manage their money, They have a strong sense of commitment and loyalty to people they trust, It takes time and the correct actions to build their trust, They have a strong faith in a higher power, They understand the value of close relationships and understand that true love goes beyond what is on the surface, They understand that love is strengthened by the trials they have experienced together, They respect and listen to people who want to help them such as doctors, nurses, firemen, pastors, etc, They have a deep sense of honor for our country, They know how to laugh at themselves and with others, They still feel they are invincible, They have a strong desire to give and not take and they have humility, and above all else, they have a remarkable sense of grace!
Can you see these same traits in the letter written by the son to his parents? Something that is hard for most of us to understand is that it is impossible for us to know what others are thinking because we have not had the same experiences. Most of us were not raised by our grandparents, our parents were!
“Life is not about outcomes, but fragments of time in which we are designed to experience.” Reed Henry
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The fourth and final skill is called Integration. The act or instance of combining into an integral whole. (Webster’s) So now we have to pull all of our information together and actually attempt to institute change. Rather than discussing what integration is, I have decided to provide you with some case examples so you can see what integration actually looks like. The most important thing to remember at this stage is that you may or may not be correct in your findings.
The biggest mistake you can make is to be unwavering in your thoughts. Use all of the previous skills we have discussed, Attending, Empathy, and Confrontation before you begin to integrate your thoughts and feelings. Once you feel you have done this, ask the person if it is possible you are correct using an I statement. Example: I hear you saying you are having a lot of anxiety and are not comfortable about having to speak in front of a large crowd next week. You may get it right, you may not. Be prepared to accept either and move on. If you are not correct, continue to dialogue using the other skills until you think you can integrate again. Once the person confirms your integration, you have shown them you are a true listener!
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The third basic counseling skill is Confrontation. It is not unusual to think of confrontation as a negative experience or the perception of a negative experience. When somebody tells you they’ve had a confrontation, do you think about a tense, angry argument or possibly even a brawl? Most people do. Even my Webster’s Dictionary tells me that “confront” means “to come face to face with, especially with defiance or hostility.” In radical contrast, counseling textbooks refer to confrontation as “an act of grace” or “a true act of caring.” This is one of those annoying times when a specialized, professional use of a word is nearly opposite to the way people normally use it. Still, the concept of “appropriate” or “loving” confrontation is critical to what counselors, family members, good friends, and spouses do.
In order for this to work though, we must have utilized our previous skills of attending and empathy first. Confrontation means telling people about inconsistencies that they may not yet has spotted for themselves. It’s hard to do, harder to do it right.
Timing is critical. Effective confrontation can only happen after two people have had a chance to get to know each other. As a counselor, spouse family member or friend, you know that first impressions are often off base and almost always superficial. It takes some time to feel into another person’s experience and even more time to sense when they are ready to face and work through their more difficult issues. People need some time to size up whether the counselor is competent, caring and honest. It takes time to build trust, but only trust can allow the person to accept and integrate information that might be frightening, even painful. Appropriate confrontation can only happen in an atmosphere of trust. How many of you can do this? This is exactly why “Boundaries” are important.
There are two main circumstances in which we might offer confrontation, two very different kinds of inconsistencies: those between what we say and how we feel, and those between what we say and what we do. Sometimes a person tells you they feel a particular way, but their voice, facial expression, posture and the general feelings you are getting from them seem to be saying something else. If you feel the person is ready to take another step in self-understanding, you might choose to tell them what you’ve noticed, and what you think it might mean. I have used this when working with a spouse who refuses to believe that anyone else can care for her husband who has Alzheimer’s disease. On the one hand they are exhausted and their doctor has said “Your going to have another heart attack” and on the other hand they still hold onto the belief that they can continue to do the job. If you offer empathy, remember to be sure to own your inferences, present them tentatively, and gracefully accept correction from the person. Your role is to invite self-exploration, not to compel it.
Other times, a person tells you they want or believe one thing, but their behavior seems unlikely to bring them to that goal, or to be inconsistent with those beliefs. They don’t seem to you to be walking their talk. Again, confrontation means telling them about the inconsistency that you perceive, caringly and as gently as possible.
Here are some sensible guidelines for confronting inconsistent behavior. Pick a calm and grounded moment for both of you. Speak gently. Only address one or two key areas at a time. More is more than a person can process at once. Only discuss things the person realistically could change. Be as specific as you can about how the behavior is interfering with the person’s stated beliefs or goals. Do not confront someone as a family or couple. This must be done one on one to begin with. Check that communication was clear. Have the person restate what you said if possible. Allow time for discussion of what you have presented. Be prepared to handle a defensive or angry initial reaction. Be as firm and as patient as stone.
When working one-on-one with an individual, about either feelings or behavior, never confront them unless you are willing to deepen your involvement with them. Normally, offering loving confrontation means volunteering to be there with the person as they work through the implications of whatever they learn from what you share with them. It means volunteering to be even closer to them than you were before.
Special thanks to Judy Harrow (Confrontation: “The Dark Mirror”)
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