Sometimes I write to encourage or entertain. Today I write to educate and inform. Most of what I have learned is by reading and asking more questions than professionals care to answer. My desire is that by sharing our story, we might help others in similar situations and explain what my husband is facing. I have learned a whole lot from the school of hard knocks.
We are at 4 years 2 months since the time of diagnosis: Frontal Temporal Dementia: Semantic Type or Behavioral Type (they aren’t quite sure), most likely exacerbated by Traumatic Brain Injury. This diagnosis came after blood work, MRI’s, CT Scan, office mental exams, and 2 lengthy cognitive exams interpreted by a Geriatric Psychologist and Neurologist. If I had a quarter for every time someone has said, “But he LOOKS good…”
Actually, he is doing really well at the moment. We had a little glitch in early April and he ended up in the Emergency Room for the 3rd time since school started in the fall. The good news is that it wasn’t for blood pressure this time. The bad news is that he wasn’t urinating much at all. What he did pass was very dark and I was scared. I lost my cool at the doctor’s office, swinging a sample, crying, convinced his kidneys were shutting down. The hospital was thorough, found no real change and wrote it off to “a dementia thing”.
What I am noticing is that his body systems are shutting down slowly. It makes sense. If the brain is the conductor (like an orchestra), and the systems are all at the mercy of the leader, why wouldn’t they all be affected? This is what I notice:
Digestive System: My loved one suffers from acid reflux and is lactose intolerant. This can be tricky, since he craves milk, cheese, and ice cream. It is common to develop an impaired sense of smell, which interferes with the sense of taste. However, at this time, my husband is enjoying food, especially sweets and coffee. This makes me smile, because he has traditionally been drawn to salty and could walk away from sweet. Bowel control is also adversely affected with dementia and some incontinence has occurred on and off over the past year- both at night and during the day. Loss of bladder control occurs with the disease and is very common.
Neuromuscular System: People with dementia exhibit a subtle, gradual loss of neuromuscular function — such as declining dexterity and balance. My husband is often unsteady, sometimes losing his balance and needs to lock arms or hold my hand. The stroke a year ago has made him even wobblier and dizzy, so we have to keep a watchful eye. In unfamiliar places, he walks behind me and follows my lead. He also suffers from chronic migraines, which are treated every 3 months with Botox. He jokes that when he dies he will be wrinkle free!
Circulatory System: Reduced circulatory system response to changes in body position can create dips in blood pressure upon sitting up or standing and has resulted in a condition called orthostatic hypotension. He has been diagnosed with this, but my sweetheart generally suffers from blood pressure that is too high and is currently taking 5 different medications to control both his Bp and cholesterol, and is also taking baby aspirin each day.
Nervous System: Depression often accompanies dementia, and sleep disturbances are common. The early diagnosis was depression, which led to a mid-life crisis where my favorite man was self-destructing. At this time, a low dose of depression medication does the trick. However, another part of the nervous system is the eyes. Affected by the dementia- my husband has lost his peripheral vision and his eyesight is deteriorating. Huge gatherings and noise, especially in unfamiliar surroundings are terrifying. He often shivers or stares. He has to work hard to process, and as a result, often recognizes only close family during those times.
Excretory System: The most basic part of this system is the lungs, kidneys and skin. An accessory organ includes the gall bladder. My loved one’s kidneys are compromised, most likely caused by long standing hypertension. During our last ER visit, we also found out that he has gallstones. As long as they don’t bother, we won’t mess with them.
Respiratory System: Snoring is a form of sleep apnea, in which, people stop breathing for a few seconds or several minutes dozens of times in an hour. Any disruption of breathing during sleep can affect the brain. Researchers have found that people with sleep apnea tend to develop memory problems and other signs of mild cognitive impairment. My husband now sleeps with a CPAP machine. However, he struggles with either sleeping all the time or not sleeping at all. He wakes often and just stares out the window, or he gives up and goes into the living room to watch TV or play on his IPad. We have tried essential oils and melatonin, but neither seem to make much difference. In the past, he has had respiratory testing and received nebulizer treatments. He often breathes erratically or has difficulty catching his breath when exerted.
Skeletal System: Although dementia doesn’t appear to affect the skeletal system, lack of judgment does. Dementia patients have a difficult time thinking about the big picture, and sorting through cause and effect, and he is accident-prone. As a result of many accidents and near death experiences, my guy suffers from arthritis, which is an inflammatory disease that damages joints. In his case, it affects his neck, shoulders, hips, and knees as a result of injury and operations. He is a great weather reporter.
Muscular System: The 650 muscles in the body control walking, talking, sitting, standing, and eating. They also help to maintain posture and circulate blood, as well as produce more subtle movements, such as facial expressions, eye movements and respiration. Since my husband’s stroke 1 year ago, we have learned a great deal about how dementia can impact muscles, and how difficult it is to retrain your brain to talk to your muscles. However, I am happy to report that he is out of the wheelchair and walking with an AFO brace.
Endocrine System: The endocrine system consists of hormone secreting endocrine glands such as the pituitary, thyroid, adrenal, pancreatic and adrenal glands. This year, my husband has been diagnosed with multiple adrenal tumors. These can affect blood pressure spikes. In our case, the adrenal specialist doesn’t think they were related or that the tumors need to be removed.
Immune System: There is some indication that there may be a correlation between the immune system and dementia. Some research suggests that people with a certain form of immune disorder can have symptoms of frontal and temporal lobe dysfunction, which include “impulsivity, behavioral disinhibition, poor memory, attention, and planning.” In the case of my favorite guy- all I know is that he catches everything that comes anywhere near him and it is always much worse than the rest of us experience.
Integumentary System (Skin): “The integumentary system has a variety of functions. It may serve to waterproof, cushion and protect the deeper tissues, excrete wastes, regulate temperature and is the attachment site for sensory receptors to detect pain, sensation, pressure and temperature.” A number of years ago, my husband was diagnosed with oral cancer, which is thankfully now dormant. There doesn’t seem to be a link between the skin and dementia. However, I wonder about the link between the cancer and his immune system?
Lymphatic System: “The lymphatic system is part of the circulatory system and a vital part of the immune system, comprising a network of lymphatic vessels that carry a clear fluid called lymph directionally towards the heart.” The everything is connected to the everything. “Primary Central Nervous System Lymphoma (PCNL) may cause dementia. PCNL is a type of non-Hodgkin’s lymphoma that typically occurs in the central nervous system. This type of lymph node cancer may originate in the brain, the spinal cord, or even the eye.” Thankfully, this doesn’t appear to relate to my favorite man. However, it is recommended that individuals seek regular physical and neurological examinations to detect symptoms of lymphoma.
Reproductive System: There is a correlation between between both acute (i.e., one time, one occasion) and chronic (i.e., long-term) alcohol consumption and low testosterone. Although, it appears that this issue is not specifically dementia related, the results of the disease created self-destructive behavior that in part, may have been a contributor to the Low T.
What caused my husband’s dementia? After a great deal of reading, I have a few theories. It is theorized that exposure to toxic substances in the environment could be causing the disease. He and his siblings lived down the road from a dump that burned EVERYTHING. As a result, they all suffer from varying ailments. Individuals with a previous head injury seem to have a higher likeliness of developing the disease and he has hit his head 4 significant times since 2002. I believe that chronic uncontrolled high blood pressure has played a role, as well as alcohol abuse, and the high amount of prescribed medications over time- especially for depression.
At this time, he is still highly functional. He remains independent, needing subtle assistance and modifications. He is verbal and involved, although he tires quickly and needs frequent breaks. There is so much that he can do and help me with, and it is important that he feel needed, appreciated, and valued. I spend much of my time building him up, reminding him why I love him and acknowledging how cared for and protected I feel. He is still my 51 year-old husband of 30 years, my partner, and the father of my 3 beautiful babies. I am thankful that the disease is moving slowly and subtly, thus allowing us a great deal of time to make memories that we will hold on to for our life times.