PODCAST 6 – MAKING THE CAREGIVER DECISION 2
This podcast is available for listening at Ancient Faith Radio
Glory to Jesus Christ, Glory forever.
This is Deacon Mark for A Christian Ending.
In our last meeting, we started to discuss some of what to expect if you should decide to become a long-term caregiver, particularly if you are faced with long-term care of a patient with Dementia.
Even with all our preparation, there is an awful lot that we didn’t know. Elizabeth became somewhat of a clearing house for information for others. She discovered there is a lot of information available from a number of sources like the Alzheimer’s Association of America.
To start with, I’d like to ask a few True or False questions to get us thinking about Alzheimers and dementia.
True or False?
QUESTION 1: Forgetfulness is always a sign that something is wrong with your brain.
This is false; it is a myth. If we didn’t possess the capacity to forget, we would all go crazy. The ability to remember what is important and discard the rest is a necessary skill. It is the level of forgetfulness that might indicate something is wrong.
QUESTION 2: Everybody has different capacities for memory and these capacities can change over the course of a lifetime.
This is true. Thus, comparing yourselves to others to see if your memory is normal is not a good measure.
QUESTION: You lose 10,000 brain cells every day and eventually, you just run out. This is false. Some parts of the brain do lose nerve cells, but it’s possible to grow new ones and/or maintain the nerve connections of existing cells by exercising your mind.
QUESTION: Dementia is a normal part of aging.
This is false, another myth. Dementia is not a normal part of aging. It is true that most people who get dementia are over 65 (although people in their 40’s and 50’s can get it, too), but this percentage is fairly low until age 85 and older. For example, only about 5 percent of people ages 65-74 have Alzheimer’s Disease, the most common cause of dementia, but about half of those age 85 and older are estimated to have it. The Matriarch of our parish died at 95 and she didn’t show serious signs of memory loss until a year or so before her death. We met a beautiful 95 year old in Virginia who was sharp as a tack and stood in church in heels.
So what changes in mental ability are a normal part of aging (such as information processing, memory, the ability to “multi-task”, use of language, accumulation of new knowledge)?
Some of these abilities tend to decline as we age, while others will change only a little, and some will improve. For example, creativity can continue into our 90’s, and we can accumulate wisdom until the very end of life.
Of course, changes in abilities vary by individual, but in general, as we age:
- We don’t process information as quickly, which sometimes means we need to have new information repeated to understand it.
- We are not able to divide our attention among a number of tasks as easily as when we are younger. We’re learning the multi-tasking is not such a great thing anyway.
- We experience some decline in short term memory as we age, although cues seem to help. Long-term memory is less affected as we age.
- We maintain or improve much of our language ability,
So what is Dementia?
Dementia is the term used to describe several types of brain disorders. All types of dementia involve a mental decline that affects more than one of the four core mental functions:
- Recent memory – the ability to learn and recall new information
- Language – the ability to write or speak, or to understand written or spoken words
- Visuo-spatial function -the ability to see and understand spatial relationships among objects (e.g. skills needed to use a map or do a jigsaw puzzle). This can also be as simple as looking through a window or watching TV.
- Executive function – the ability to plan, reason, solve problems and focus on a task.
There are several Types of Dementia
Some diseases and disorders that lead to dementia can be treated and reversed, but others get progressively worse. The most common type of irreversible (incurable) dementia is Alzheimer’s disease.
Reversible (curable) dementia can be caused by high fever, dehydration, vitamin deficiency and poor nutrition, bad reactions to medicines, problems with the thyroid gland, or a minor head injury. Sometimes emotional problems can be mistaken for dementia; struggling with grief or anxiety, for example, leaves some people feeling confused or forgetful.
It is important to see a doctor to confirm a diagnosis of dementia. A diagnosis of dementia will rule out other conditions and allow the person and their family to make plans for their care.
Alzheimer’s disease – this is the most common form of dementia and accounts for between 50 and 70 per cent of all cases. It is a progressive, deteriorating illness that attacks the brain. My mother had Alzheimer’s.
Vascular dementia – this is the second most common type and is associated with problems of circulation of blood to parts of the brain. We’re pretty sure Frank had vascular dementia, but it didn’t make any difference. You couldn’t tell the difference and the progression of the disease was nearly identical.
Dementia with Lewy bodies (DLB) is when abnormal deposits of protein called Lewy bodies develop inside the brain’s nerve cells.
Parkinson’s disease – this is a progressive disorder that attacks the part of the brain that controls movement. Many people with Parkinson’s disease develop dementia in the later stages. It is difficult to know if my dad’s dementia, which was minor, was caused by his Parkinson’s disease or his alcoholism.
Huntington’s disease – this is an inherited, deteriorating brain disease that affects the mind and body.
Alcohol related dementia (Wernicke-Korsadoff syndrome) -this is caused by too much alcohol and a poor diet low in Vitamin B1 (thiamine).
AIDS related dementia – is caused by the HIV virus, but does not affect everyone with HIV-AIDS.
Diagnosing someone’s type of dementia is not an easy process because symptoms and behaviors may appear before the brain clearly shows the cause. Doctors look at behaviors to determine which part of the brain is most affected, but not all dementia patients demonstrate the same types of behaviors. As with other diseases, doctors often treat symptoms and behaviors until a cause can be located and addressed.
It is very important to consult a physician if you suspect that you or your loved one may be showing signs of dementia. Research is continuing, and there are medications now that may be able to slow the progression of the disease. If you think you may be showing signs, get tested. The sooner you slow or arrest the progression of the disease the better.
There are several identified Stages of Alzheimer’s but sometimes they are only clear in retrospect.
- Stage 1 – No impairment. Memory and cognitive abilities appear normal.
- Stage 2 – Minimal Impairment/Normal Forgetfulness. Memory lapses and changes in thinking are rarely detected by friends, family, or medical personnel, especially as about half of all people over 65 begin noticing problems in concentration and word recall. At this stage many people don’t want to admit there’s a problem and even close family may not notice it.
- Stage 3 – Early Confusional stage showing Mild Cognitive Impairment. While subtle difficulties begin to impact function, the person may consciously or subconsciously try to cover up his or her problems. Expect to experience difficulty with retrieving words, planning, organization, misplacing objects, and forgetting recent learning, which can affect life at home and work. Depression and other changes in mood can also occur. Duration: 2 to 7 years.
During stage 1 through 3 my mother was being treated for depression. This made it difficult to know whether it was the depression causing her problems or if her memory problems were adding to her depression. Finally, she lost her car in a shopping mall parking garage and it really hit her hard. She went into a major depression then she stopped driving , stopped cooking and eventually took to bed most of the time.
Frank on the other hand was very friendly and gregarious and very good at hiding his condition. Acquaintances at church would never believe he was having problems.
This was when Elizabeth started paying his bills. She also had to have a lock put on his utilities because he kept canceling the electric service and water. He said they cost too much and he didn’t need them.
- Stage 4 – Late Confusional stage – Mild Alzheimer’s. Problems handling finances result from mathematical challenges. Recent events and conversations are increasingly forgotten, although most people in this stage still know themselves and their family. They experience problems carrying out sequential tasks, including cooking, driving, ordering food at restaurants, and shopping. They often withdraw from social situations, become defensive, and deny problems. Accurate diagnosis of Alzheimer’s disease is possible at this stage. – Lasts roughly 2 years.
This is the stage where we moved Elizabeth’s brother in to live with Frank. Fortunately, Ella had made sure that she took care of all of Franks paperwork before she died. She made sure that Frank signed a Power of Attorney for Elizabeth to take care of him. His diabetes was also a problem at this point. He couldn’t remember if he had eaten or not so he just kept eating.
- Stage 5 – Early Dementia/Moderate Alzheimer’s disease. The decline is more severe and requires assistance. They are no longer able to manage independently or are unable to recall personal history details and contact information. They are frequently disoriented regarding place and or time. People in this stage experience a severe decline in numerical abilities and judgment skills, which can leave them vulnerable to scams and at risk from safety issues. Basic daily living tasks like feeding and dressing require increased supervision. This stage lasts an average of 1.5 years.
At this stage my mom was wandering off. Dad would find her in the middle of the night in the woods. She wandered off down the highway another time. She lost 50 lbs, partly because of Dad’s cooking, but mostly because the Benedryl had her so agitated she was walking in the neighborhood with a friendly neighbor 4 – 6 hours a day.
We went to see them for a visit. When we returned from the restaurant we witnessed a full blown psychotic break. She was wondering through the house talking nonsense and rattling the doors trying to get out. Due to our time in the Homeshare program, we’d seen it before so we knew what we were seeing. I ask dad, “Does this happen often.” He answered, “Only in the evening.”
This is known as Sundowners. It seems to often happen that around Sundown, dementia patients have a sudden onset of increased symptoms. Other times, or other people, will have increased lucidity around sundown.
They moved in with us around late stage 5 and stage 6. We knew dad couldn’t care for her any longer.
- Stage 6 – Middle Dementia/Moderately Severe Alzheimer’s disease. Total lack of awareness of present events and inability to accurately remember the past. People in this stage progressively lose the ability to take care of daily living activities like dressing, toileting, and eating but are still able to respond to nonverbal stimuli, and communicate pleasure and pain via behavior. Agitation and hallucinations often show up in the late afternoon or evening. Dramatic personality changes such as wandering or suspicion of family members are common. Many can’t remember close family members, but know they are familiar. Lasts approximately 2.5 years.
- Stage 7 – Late or Severe Dementia and Failure to Thrive. In this final stage, speech becomes severely limited, as well as the ability to walk or sit. Total support around the clock is needed for all functions of daily living and care. Duration is impacted by quality of care and average length is 1 to 2.5 years.
Strangely, Mother’s verbal ability was one of the first things to go. She lost the ability to call up the correct word for “chair” for example, very early on. By stage five she was stuttering and muttering a lot. By stage six all she could, or would say was “yeah” or “no”. The really distressing thing about this was that we had no way of knowing if she was responding correctly. If all she could say was yeah and no, did her no mean no? We just couldn’t tell. But she continued to hum and sing to the very end. For mom this stage lasted about 5 years.
Frank, on the other hand, could cuss a blue streak right up to the end. He could get violent and very angry when he was hurting, which was often. But he was so weak it really wasn’t a problem for the care givers.
The rate of progression for Alzheimer’s disease varies widely. On average, people with Alzheimer’s disease live eight to 10 years after diagnosis, but some survive as long as 25 years. We suspect that mother had Alzheimer’s maybe 10 years before we were aware of it. So she probably had it for 17 – 20 years. We have to wonder if early intervention might have made her final decades much more comfortable.
Mom and Frank were music lovers. Mom sang in the choir and Frank loved to dance. We were able to influence their moods pretty well with music. If they were agitated some smooth mellow music could calm them down. If they were having trouble waking up, some lively jazz would do the trick.
We learned very quickly that it was very important to keep our house as calm and quiet as possible. This wasn’t easy with all the nurses, aids, social workers, and the chaplain coming daily. Not to mention Fr. John’s regular visits. Our elderly neighbor across the street couldn’t believe we had all this activity just for our parents. He was sure we were running a nursing home.
Well, we were. It had only three patients and they were all our parents.
We also found out pretty quickly that we wouldn’t be able to have family gatherings at the house, at least not inside.
Remember, dementia causes confusion. Imagine sitting in a wheel chair with a bunch of people you don’t know (your children and grandchildren, but still you don’t know them) all moving around and talking. It’s extremely confusing and sensory overload. I remember one Christmas, Frank yelling at everyone to get out.
It was just too much for him. So, birthdays and holidays were held outside with the aides watching the parents inside, or at another house.
Toward the end Pneumonia is a common cause of death. Impaired swallowing allows food or beverages to enter the lungs, where an infection can begin. I can remember when they used to say that pneumonia was the old person’s friend. Other common causes of death include complications from urinary tract infections and falls.
We noticed that every time they had a urinary tract infection, and they are common, it would really knock them down a notch. It was a stair step progression downward. They never fully recovered from a Urinary Tract infection.
We learned another thing fairly quickly. When you are seriously dealing with people who you know are definitely in or heading toward the end stages of life, you have some pretty strange conversations. It’s natural, it’s gonna happen. We had several conversations revolving around “what ifs”, all around end of life issues.
Without going into detail of how, I’ll say that the Lord made us very aware, quite definitely aware, that “Those things are not our concern.”
Our only job for these three people was to keep them safe and comfortable in every way. He would take care of everything else regarding the end of their life, and that’s exactly how it all worked out.
So I encourage you, if you take this on; keep them safe, keep them comfortable, and let the Lord take care of everything else. The rest is not our job anyway.
Next time we’ll talk about Care Giving for the Sick and Suffering in General, with or without Dementia. We’ll talk more about assessing your own abilities and motivations, when it might be time to consider putting your loved one in a facility, how to evaluate a facility, what to expect and how to deal with them. Then we’ll start dealing with Palliative care and other end-of-life issues you’re going to want to know about if you decide to take this on.
Please remember to send your questions and comments to us at AChristianEnding.com
This is Deacon Mark
May God grant you many, many years.