Dementia, Alzheimer’s, brain stroke, brain injury: these all directly affect the human brain and often cause serious issues within a family. I have personally known individuals that have suffered brain injury from an auto accident, a hard court basketball injury, motorcycle accident, disease, and now dementia cause by age deterioration of the brain. Any cause of brain injury or significant change affecting the brain’s chemistry may cause dementia or related symptoms and changes.
When my father began his decline in 2010, he never lost his mental faculties. He never forgot a name and face or lost his wit. He was as bold as ever about confronting new people that entered his life as caregivers with the need to know Jesus Christ. It was an interesting time to watch my Dad. In six and a half months he was with his King and Savior.
Mother’s decline has been more gradual with the first signs beginning in about 2014 with repeated UTI’s that were hard to diagnose and hard to treat. Mom is allergic to many of the primary medications used to treat a UTI so it takes time to find an antibiotic that will eliminate the bacteria and that she can tolerate. If you are not aware, in the elderly a UTI may not exhibit many symptoms such as a fever, low grade to severe pain in urinary tract, or other common indications. Because of this, the UTI may be weeks old when discovered. This means that toxins are already widely spread in the blood stream, and this can often affect brain function. We personally know that it exacerbates the dementia and its manifestations. Her UTI is a persistent health problem that cannot be rectified in Mom’s case.
The early signs of dementia were short term memory issues and confusion over schedules. Another sign that we should have caught was Mom’s inability to problem solve. Mother had managed as many as three projects at the same time in the church and community as well as running our household in years past. She has slowly lost this ability to manage and problem solve, but we should have taken note of this. Until the primary care physician said he was seeing signs of dementia we simply did not recognize the indicators.
In my previous blog posts, I wrote about the dark place, the dark times and the bright and pleasant time with Mom. If you are facing something like dementia or traumatic brain injury, it will help you to gain as much knowledge as you can and the PCP may not be the best source. I know when Gini and I faced Cushing’s twice in successive years I was taking a master’s level course that addressed brain responses and malfunctions. I gained much insight that I needed after Gini and I returned home. The recovery was horrendous. Armed with the indispensable knowledge gained from the course, I was able to serve my wife and attempt to meet her needs by understanding to some degree the causes of her responses to me. You likely don’t need to take a course but ask the doctor, friends, nurses (home care can be very helpful), or specialists in geriatrics.
Our Mother’s decline while somewhat steady, there are times when it is not unlike whitewater rafting. At times the rapids are steady and consistent because of the depth of the water and the size of the rocks in the riverbed. At other times the difference between the troughs and the waves are so pronounced that when in a trough you cannot see anything but the wave directly in front of you. Dementia can feel exactly like that. Some days I think, “we are losing Mom.” At other times I wonder how long she will hold on or how long the Lord will wait to call her out of this struggle. Then there are days and times when she is simply delightful even when she is confused about time or location.
I suppose at this point I need to interject a topic I have addressed in the blog and articles–caregiver burnout. I won’t go into as much detail as the posts and article but burnout is the caregiver’s nemesis. It is stealthy, sly, subtle, deceptive, and at times overwhelming. Fortunately, when I first began to think about burnout, I did a search on the net for caregiver fatigue which led me to caregiver burnout. I found several descriptions of it: https://www.webmd.com/women/caregiver-recognizing-burnout#1
Here is a link to my description in a blog post.
Dementia’s Ugly Face
Dementia or traumatic brain injury has many faces. The “thousand mile stare” which is known to those facing or dealing with PTS. It first became known among our soldiers in WWI if memory serves me correctly. However, PTS or any traumatic event–stoke, Alzheimer’s, head injury, general dementia, etc. may cause a person to in some sense to “check out” of reality and shut down cognitively. I suppose I should note that after hurricane Katrina in 2005 I was watching an interview with a female victim and mother. Suddenly I realized that this lady was already experiencing PTS. Anyone that experiences a traumatic or tragic event is a candidate for PTS. Get help, do not think you will simply get better. The sooner help is sought the better, please do not wait.
Another aspect of dementia can be anger. The anger may be overt and expressed loudly with much emotion or more passively with the victim ignoring the caregiver. It may be stating a guilt rendering comment, or other hurtful statements. This is one aspect of the dementia that the caregiver can actually manage. While it is true you cannot prevent the dementia victim from being or acting angrily, you are the one who manages your response to the anger. You must remember that this may be totally foreign to the family member/victim. If this is the case, you must remember that this is not a true expression of your loved ones heart and mind. It is caused not by a conscious choice but by malfunctions in the brain.
Overt physical behaviors such as tremors that favor those of Parkinson’s disease. An uncontrolled tremor whether accompanied by an emotional reaction or not can happen with dementia, brain injury, or disease. At times, Mother’s hands simply shake, most of the time mildly but in the last week, an almost full body tremor happened. She was sitting in her lifting recliner and twice in the space of twenty minutes she shook uncontrollably. Her arms shook most significantly and her face contorted beyond anything my sister and I had ever seen. I did not notice her legs so much because I was so surprised by the expression on her face. I feel certain that her legs were shaking as well. She did not even know that it happened and since it interrupted a sentence she was speaking; afterwards, she continued the sentence as if nothing had happened.
Memory loss can be very traumatic for family members and is most often seen with Alzheimer’s disease. However, it can be a symptom for any brain malady. Mother’s memory is in tact with the exception of her short term memory. Yesterday she talked as though she was back in the hospital and awaiting a doctor’s permission to get out of bed. She also commented at one point yesterday that she had been in the bed for six months, in reality it has been no more than three months. Along with this memory loss is confusion of events, time, and space. I have explained it this way. If you are a fan or familiar with Star Trek or some other science fiction series, you have likely seen an episode when someone would be jumping from one time frame and place to another. Memory loss can be like that for the victim.
Finally, we have observed general confusion. Sometimes Mother states that she is confused but is usually unable to state the what or why of this confusion. A few times she has felt that her family has abandon her but responds to my reassurance that this idea is false. Details are often confused as well as the time frame and setting. Her vision is failing and now sees people and things that do not exist. Unless these things cause fear, we just go with her conversation. Since we have moved home to care for her, in the last week or two she asked me each time I walk by her bed, now in a common area to facilitate care, if I am leaving.
I realize that I am talking from a single experience with a parent that is living with dementia. When Gini was in her second recovery from Cushing’s surgery, she manifested some of these symptoms so I am not entirely without previous experience.
Firstly, we are to love our parents. There are difficult days and moments. I am grateful to be aware that most of the time, God’s grace is enabling me to love and serve my Mother. A couple of times I have had to walk away and fortunately, Gini was able to step in and take the reigns of care. At times in the evening when I sit and listen or just hold Mother’s hand, I will look at her and be overcome with compassion. I know this is again God at work in my heart and mind. If your loved one is exhibiting extreme symptoms, anger and the like, then loving them will be an incredible challenge but necessary and attainable through the grace of God the Father.
Secondly, we are to care for them. This can be incredibly challenging at times in some cases all the time. A couple of examples might serve well here. One night Gini came to the room in which I was sitting. I asked her how things were going. She responded, “I tired of dealing with your mother.” Mom had simply resisted everything Gini tried to do to assist Mother. I went to Mom’s bedside and took care of the medication and other needs Mother had at the time. A few weeks later, I was attempting to feed Mother something that we felt she would enjoy, but she would have none of it. Her attitude was “there is no way you can make me eat that.” After several attempts, I set the food down and walked away and left her to be hungry. Gini stepped in to make sure Mother’s needs were met. It will happen the only question is when. However, if we are addressing burnout rightly so that we manage our stress as caregiver; we can count on God’s grace being abundant. Care ranges from assistance as was with my Mother since 2014 or serving someone who is basically an invalid. We are now at the latter stage with Mother.
Thirdly, they will need much compassion from you. Compassion is more than just sympathy, however, sympathy is certainly included. I suppose compassion is as much as possible to feel the burden of suffering of the individual for whom we care. I have sat with Mom at times and simply looked into her eyes just looking. We might be tempted to try and imagine what our loved one is thinking or what is happening in their brain. I am not sure compassion actually needs to move in that direction. There are times we have those questions but when we a showing compassion, we don’t need to go there. We need to extend love and be there for our family member or friend. When Job of the Bible faced unspeakable tragedy his three friends did something that is nothing short of godly. When they first showed up, they merely sat with Job and wept with him sharing their friend’s sadness and burden. This is compassion.
Dementia and its related conditions are wicked thieves and cruel taskmasters. However, as with every condition or human disability, the God who is the ruler of the universe is ready and available to walk with you through your darkest hour.
“Teaching them to observe all that I have commanded you. And behold, I am with you always, to the end of the age.” Matt. 28:20