No Meaning for Words

Posted on September 6, 2016 by truthfulkindness

The waitress spoke; “Thank you, Ma’am. Do you want french-fries, hash browns, or onion rings to go with your meal?” … But I could not bring up memory concept for any option but onion rings, and that was just round crunchy things that I knew I could not have. The other words had no meaning.

Newest challenge is lack of word recognition when spoken. Words flow over me and around me, but I do not recognize them. In conversation, or giving selection at restaurant, I recognize the word with sensation of deja-vu, knowing that I should have a concept to go with the word, but no picture, flavor, or memory appears to match the word. Need to bring pictures when ordering from menu, for times when I cannot recognize some of the basic food words. I discover that when this happens too much in conversation, I just kind-of check out.

Detail:

Tru here. FINDING words has been a problem for a long time. Lack of reading comprehension has been a problem for a long time. But not having a memory concept for familiar words is a new challenge. Twice this week, husband needed to show me what french-fries were, and the other options to go with meal. He used pictures on the menu.

Prior to this week, Most of my word recognition problems in conversation have been related to speed, accent, and delivery of words spoken. And I don’t think this is a common problem amongst my friends, so it has me stumped. Now I am discovering that even if the word is spoken slowly, with pauses to let my brain catch up, I am still not remembering meaning for familiar words spoken by my friends and family. I think it has been happening for a while, but only realizing it now that it is getting worse. In conversation, words flow over me and around me, but I am unable to find any concept to match the words, lose the train of thought … and drift away.

The words are familiar and I know I should have a concept to go with them, but nothing is coming … and the person just keeps talking and I am left further behind. Hoping they will say something that I can again catch a thread for what we are talking about, I will usually desperately continue to listen for a while. And yes; there is the gathering sensation of desperation. If this is a close friend, and a private conversation, then after short while I will say something like, “I have no idea what we are talking about, can we try again?” If that doesn’t work I will say, “I am not getting this topic, we need to talk about something else.” If there are more than 2 or 3 people involved, then I think desperation gives way to despair … and I just mentally check out.

Choosing a Dementia Service-Assistance Dog

Posted on August 16, 2016 by truthfulkindness

SUMMARY:

TASKS : 1 = Disoriented at home or public place >> Center >> Redirect >> “Find” husband; 2 = Disoriented during daily walk >> “Find” home; 3? = Balance-Assist; 4? = reminder to stop before crossing road while on daily walks; 5? = cardiac-alert for stroke; 6? = prevent convulsions from blood-sugar crash by meal reminder; 7? = smoke-sensor when away from home (vs smell-hallucination).

TRNG: Self-train.

AGE indicator: under 3 years old

SIZE indicators: 25-60 pounds, if decide to go for “balance-assist”, then goal will be 60-80lbs; (Newfies are well over 100lbs, & that is way too much)

PERSONALITY indicators: fit description of “Partner”, promising candidate for Canine Good Citizen certification, focus on human partner;

BREED: Prefer Poodle or Retriever mix.

PROVISIONS for dog safety and care: husband is back-up for feeding and all needed care for my dog;

PROFESSIONALS to consult: Veterinarian; med team (fam Dr, specialists); major places spend time (place of worship & businesses) >> “What is your policy for srv-assistance dogs during training stage?”

… DETAIL:

Tru here. What are my qualifications for this subject? I owned dogs all my life, then trained & was handler for two wheelchair assistance-service dogs over span of 15 years. I gave public presentations on Service Dog issues during those years, and for two years I represented service dog handlers at the County level.

When considering “Service” (or “Assistance”) Dog issues, usually the first topic that needs discussed is tasks. If I truly NEED a service-assistance dog, then what other tasks can/should be done by my dog? By definition, a “Service Dog” must be executing trained tasks that will mitigate my own identified dis-abilities. Places of business do not have the right to ask what my dis-abilities are, but they DO have the right to ask what tasks the dog is trained for that will mitigate those dis-abilities. So what should those tasks be? (What exactly does the dog DO that increases my independence?) My primary task has already been pre-determined, as that was the need which led me to seek another Service Dog.

TASKS (in order of priority):
1! = When I become disoriented at home or public place (not recognizing husband at restaurant or shopping, like happened during June, July, and August – Link #1 below, or disoriented at home like happened in bathroom during May – Link #2 below) >> dog’s task is to: “Center” and Redirect patient (psych task) >> “Find” and lead me to husband or whomever is providing “care”. (This is a “memory” task since I am not recognizing who he is or where I am at);
2! = When I become disoriented during daily walk >> dog’s task is to: “Find” and lead me home. (This is a “memory” task);
3? = IF I decide to go for a larger dog, then third priority would be balance-assist (“mobility” task); including “brace” to assist standing from sitting position, and probably walking harness while walking (instead of current canes or walker).
4? = IF I decide to go for a larger dog, reminder to stop before crossing road while on daily walks would be very important (discovered I no longer think of stopping, so important task in order to retain independence). Solitary walks are also one of my major responses to stress, so want to retain that independence as long as possible.;
5? = cardiac-alert >> Response… for stroke (“medical alert”) see Link #3 below. This task can be tailored if skill exists, but currently no way to “teach” it to dog that does not have the innate ability. We don’t know what caused them, but my first service dog, Hero, could always predict my periods of extreme fatigue 30 minutes ahead of time, even notifying me from the other side of chlorinated pool and getting me out in time to get dressed and get to bus stop before I could not hold on to his lead. ;
6? = prevent convulsions from blood-sugar crash by meal reminders every 2hrs (“memory” task). There are diabetic dogs, (which would come under “medical alert” category) but training that task is said to require high food drive, and that is something I wish to avoid;
7? = smoke-sensor when away from home (I usually assume any smell of smoke is a hallucination, so for me smell is useless as a warning);

Note that I do not believe in depending on a dog to prevent me “wandering” (when I get to that stage) — altho the dog’s behavior might be helpful. See Link #4 below by Joan Froling.

TRAINING: Service dogs for dementia tasks are available to be trained by several organizations, but none are local, and I would prefer to go with my own standards and procedures anyway. I self-trained two wheelchair service dogs in past, and with my dementia symptoms, I cannot afford to wait long for beginning the process, so I will be finding dog (probably as a “rescue” … but possibly as young pup from breeder) and self-training this dog also. My primary training techniques are from the “Top Dog” series called “Teamwork” (for dis-abled persons to train their own Service Dog tasks). Link #5 below. Advantage of breeder would be more knowledge of medical and temperament backgrounds for parents and grandparents.

AGE: Needs to be either a puppy or a young dog (prefer under 2yrs old, but up to 3yrs if ideal candidate in other aspects). With my dementia symptoms house-training will be much more difficult, so prefer past that stage of puppyhood if possible. Trade-off: young puppy easier to train tasks and stronger bond, but if young adult, then trainer is better able to ascertain joint integrity and better able to guess whether their personality will enjoy life as a Service Dog. Hero was rescue at 2.5yrs with ideal temperament for Service Dog, in contrast Blessing was young puppy from reputable breeder … she was extremely smart, but her temperament would have been more suited to an athlete than having a heart for service or partnership.

SIZE: For balance-assist task, I prefer a dog that has half the weight of handler, or more. So IF I go for larger dog, 60-80lbs would be target weight, with height approximately 26″ at shoulder. If I do not request mobility assistance from the dog partner, this allows me to search for a smaller dog, who will easily fit in front of my airplane seat and under the restaurant table. However, walking 10 miles a week in this pet-heavy community, I need a dog who will avoid triggering prey drive in larger dogs. I also need dog who is heavy enough to give momentum when leading me on “Find” command. I think anything larger than 25 lbs and less than 60 lbs would be ideal for “smaller” dog. Dog needs to be light enough weight that husband and I can handle their care during later years of dog’s life, so cannot have another Newfoundland.

PERSONALITY: Looking for a dog who will fit the description of “Partner”. One who is not timid, but more motivated to please human partner than motivated by food or other canine peers. One who will be (of course) interested in canine peers, but MORE interested in what his human partner is doing — unless the human is not doing or saying anything. One who is active and would enjoy walks of 10 miles per week, but by adulthood will be satisfied to sit quietly during my meetings several times a day. We live in semi-rural area where walks will include many different ages and types of animals and people. Like me, many will have mobility issues. Dogs, cats, squirrels, ravens, turkeys, horses and deer are not uncommon, along with possible issues such as skateboards. Deer often bed down in side yard of our house, and I have pet chickens (who will be on other side of fence until or unless dog shows that it will not be a problem). Personally, I need to avoid strong prey drive in my own Service Dog candidate, and would also like to avoid strong food-drive because I want it to be mostly driven by desire to please or (like Hero was) desire to meet a need in the humans around him. Hero was known for discovering the needs in multiple humans around him, and arranging it where he could meet those needs (check out his story at link bottom of page). Generally, for Service Dog candidate selection you want to avoid any “shy-sharp” tendencies, snappiness, anxiety, or over-protective bent. Good question for part of that aspect would be, “How hard do you think it would be to train this dog for “Canine Good Citizen” certificate? Ideally, the dog will ENJOY the gift of giving service, just as some humans enjoy giving service. Some dogs have ability to train as Service-Assistance dog, but do not enjoy the role. Those animals need to be pets instead of put in situation as Service-Assistance dog.

BREED: Poodle was the first breed known to be used as service dog (guide dog for blind in 1600s — see Link #6 below), and Retriever mixes are currently best known for Service-Assistance Dog characteristics, but many breeds can be successful with the right circumstances. Many breeds have been so thoughtlessly poorly-bred, that it can be difficult to find promising Service-Dog candidate. Since I am currently looking at dog from a “Rescue” organization, must keep in mind that the dog’s history is always a possible issue with any rescue dog. Because of that, I do not want a mix with breeds that are known for possible aggression, over-protection, anxiety or dominance issues. Joan Froling has written an article on breed selection for SrvDog, found at Link #7 below. My first copy of the 1980’s book, “The Right Dog for You” by Daniel F. Tortora PhD was used so much that it completely fell apart and is held together with large clamps, so we now have a second copy for loaning to others. Link #8. My Newf Hero was the ideal Service Dog, but I now need a lighter-weight breed, so prefer a larger poodle or somewhat-smaller retriever mix when getting a dog from rescue organization. Link #9. For many folks, length of coat would not be an issue (except for care-maintenance) but for me it is. Since I no longer NEED a large dog, a smaller dog can be groomed locally, and with my personality, it will be much easier for a dog with a “fluffy” coat to get my attention when I am disoriented and confused. In fact, even as a toddler I have been very drawn to poodle breed, so that is probably the breed mix which will be most successful at getting my attention for tasks of “Center” and “Redirect”.

PROVISIONS for dog safety and care: husband is back-up for feeding and all needed care for my dog; Despite 15yrs with cognitive impairment, my dementia symptoms are definitely progressing, but still progressing very slowly with my IQ still “above normal”, so expect another 10yrs productivity before I hit severe symptoms when my dog will be solely under care of my husband. Currently most of the training and care will be by me. I trained two newfoundland service dogs for wheelchair assistance, and represented service dog handlers at County level for two years, so this is not an insurmountable obstacle. The problem is that, just like my hunger impulse no longer works properly, back-ups need to be in place for feeding and other aspects of care. Since I do not remember whether animals have been fed, watered, and where they are (unless I can see them) back-up for their care is crucially important !!

PROFESSIONALS: Have now discussed above options and factors with local Veterinarian and medical team (family doctor & specialists). When traveling in air, may need letter from doctor saying you require service dog assistance, and stating what assistance tasks will mitigate your dis-ability. Then, since by Federal ADA law every public area must admit fully trained Service Dogs, but each place of business can decide whether trainees are admissible, I need to visit the major places where I spend time (place of worship & businesses), asking “What is your policy for admittance of service-assistance dogs during training stage?” See Link #10 for ADA Business Brief on Service Animals

LINKS:
1. Disorientation to person (husband) at https://truthfulkindness.com/2016/08/09/are-you-my-husband/ ;
2. Disorientation to place (home bathroom) at https://truthfulkindness.com/2016/05/08/first-time-of-where-am-i/ ;
3. Example of Cardiac-Alert at http://www.anythingpawsable.com/cardiac-alert-dog-saves-handler-from-stroke/#.V7Jk2p9TFaQ ;
4. SrvDogs and dementia “wandering” article by Joan Froling at http://www.sterlingservicedogs.org/Articles/WhatCaregiversNeedtoKnow/tabid/82/Default.aspx ;
5. Teamwork “Top Dog” series for training at http://www.activedogs.com/product/89/teamwork-service-dog-training-dvd/ ;
6. Poodle SrvDog Hist at http://www.poodlehistory.org/PGUIDE1.HTM ;
7. Preliminary thoughts for Service Dog Breed (again by Joan Froling) at http://www.iaadp.org/breed.html ;
8. Book “Right Dog for You” by Daniel F. Tortora PhD at https://www.amazon.com/Right-Dog-You-Personality-Life-style/dp/B000Q938AY/ref=sr_1_1?s=books&ie=UTF8&qid=1471328639&sr=1-1 ;
9. Memorial for Hero the Service Dog at http://tribute.perfectmemorials.com/hero-service-dog ; 10.
ADA Business Brief re SrvDogs at https://www.ada.gov/svcanimb.htm ;

Good suggestions and Links for picking service dog prospects are at http://www.psychdogpartners.org/resources/getting-a-dog

My 3-part series in March of 2015: https://truthfulkindness.com/2015/03/03/animals-dementia-symptoms-1/; https://truthfulkindness.com/2015/03/10/animals-and-dementia-symptoms-part2/ ; & https://truthfulkindness.com/2015/03/15/animals-and-dementia-symptoms-part3/ ;
* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2016-08/16. Search terms: dementia, disorientation, memory, assistance dog, service dog.

?Are YOU My Husband?

Posted on August 9, 2016 by truthfulkindness

Tru here.

This happened during our month-long vacation to spend time with my mother and maternal extended family in June-July. On the surface, primary purpose for trip was distributing “Independence” folders with stories of ancestors involved in US independence efforts in some way, but on a deeper level it was culmination of 6 months intense preparation for building family interest in order to find some younger family member to take over my 13 years of labor in Family History efforts. So there was a lot going on, emotionally and physically.

Had been traveling 5 days so far, spending time at various places along the way. Woke 4:30am on June 22 with nausea, vertigo, and disorientation. I woke husband at 6:30am, explaining what was going on. Since these have been my standard symptoms for what we theorize are the minor strokes showing on my MRI, my husband gave me an additional baby aspirin. Thankfully, symptoms eased over the next hour. We decided to change vacation plans, foregoing some of the travel activities in order to get closer to the hospital near my mother, in case I needed hospital care.

A few days later, when returning from restroom at small restaurant, I found the dining room was scattered with men, all sitting alone at separate tables. I did not recognize any of them. Recognizing my husband has been a morning problem for about two years now, but usually resolves as soon as he speaks to me.

It occurred to me that I felt like “Little Chicken” in the book, and maybe should walk up to each table asking, “Are you my husband?” It was a very scary, ALONE feeling.

The first time a new symptom occurs it is usually extra scary and disorienting. I have decided to get and self-train another Service Dog; this time a MEMORY Service Dog, to whom I can simply state, “Find Guy” or “Find Home”.

We returned from vacation mid-July, but I have had computer problems, then went tent camping with little grandsons and returned end of last week, so this is first chance I have had to write.

Newest struggle is similar to what some would call apathy (but I think I disagree). Hope to write about it soon.
* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2016-08/09 with 2hrs on txt + 0.5hrs on graphic. Search terms: dementia, disorientation, recognizing family, stroke, service dog

Introvert PWD Need for Social Activity

Posted on May 31, 2016 by truthfulkindness

♪ silence is golden ♪ … ♪ the sound of silence ♪

Summary: EACH PERSON’S NEEDS ARE DIFFERENT.
Yes; we all need social interaction. However, As an introvert I have always had NEED to have some amount of my day that is alone-time away from others but not feeling cooped-up. As an introvert person with dementia symptoms and complicated by audio-scramble of every sound, the majority of my day now NEEDS to be without sound. Any interaction (especially any sound-interaction) needs to be sandwiched by a larger time period that I am alone in the silence.

Tru here. Have written on need to minimize background noise, but this is a little different. Have been seeing many care-partner comments lately about need of social activity for persons with dementia, and I agree that social interaction is a need — for ALL persons in all stages of life — and with dementia symptoms most of us back away from social activity due to many factors. But I think it is important to remember the PERSON in this issue; each person has differing needs for social interaction. Especially in energy source.

So what is “extraversion” or “introversion”, and why does it make a difference in my dementia symptoms or how they need to be handled? Extraverted persons mostly gather energy in social activity … but introverted persons mostly SPEND energy in social activity. Big huge difference in how much and type of social interraction is needed.

Enjoyed learning about Myers-Briggs typology many years ago and it was easy to spot my introversion characteristic. ((Excerpt below describing introversion characteristic is from http://www.myersbriggs.org/my-mbti-personality-type/mbti-basics/extraversion-or-introversion.htm but bold font added by me))

Extraversion and Introversion as terms used by C. G. Jung explain different attitudes people use to direct their energy. These words have a meaning in psychology that is different from the way they are used in everyday language. Everyone spends some time extraverting and some time introverting. Don’t confuse Introversion with shyness or reclusiveness. They are not related. ((If INTROVERTED like me, then …)) … I like getting my energy from dealing with the ideas, pictures, memories, and reactions that are inside my head, in my inner world. I often prefer doing things alone or with one or two people I feel comfortable with. I take time to reflect so that I have a clear idea of what I’ll be doing when I decide to act. Ideas are almost solid things for me. Sometimes I like the idea of something better than the real thing.

LOL: so that’s why I keep finding blueprints I created and fabric patterns I created … without the finished product. I truly do enjoy making the plans, reviewing the plans, and gathering supplies. Began creating architectural blueprints during high school and never quit. Never was a home created until I was almost 50 years old — but that home was built from all MY blueprints for plumbing, foundation, etc, and I received a phone call from County engineer with compliments for job well done (( smile )).

I can be a social butterfly when forced into large social context; I sat with a different “group” of students almost every day of the week during high school because I just truly didn’t fit-in entirely with any one of them and yet got along with almost all students — but it was high-cost to my energy level. I host Dementia Mentors’ video chats almost every day of the week because those relationships are crucial to my own well-being, but chit-chat definitely is high cost to my energy tank, so many times it is more draining than reviving (depending on subject and content on that particular day). On ANY day tho, it provides a feeling that what I am going thru — what I am experiencing, is “normal” — normal for a person with dementia symptoms.

Instead of gaining energy from active involvement in events and being energized with other people, interactions instead generally drain my energy. I consider Relationships to be what makes life worth living, so these interactions are crucial to my well-being … but they have a high energy cost so must be monitored. This has been a challenge at different times of my life but now seems to create extra problems.

Background Info:

Some folks consider Extraversion / Introversion as a bit of quackery but … In the article, “Are the Brains of Introverts and Extraverts actually Different”, Discover magazine put the distinction as

When Carl Jung coined the terms “extrovert” and “introvert” in the early twentieth century, he emphasized that introverts aren’t necessarily shy or insecure—nor are extroverts necessarily empathic or loving. The distinction between the two, Jung wrote, lies mainly in the fact that introverts get exhausted by social interaction, while extroverts get anxious when left alone. Introverts need solitude in order to recharge, while extroverts draw energy from socializing. …

… A 2012 study by Harvard psychologist Randy Buckner found that people who identify as introverts tend to have larger and thicker gray matter in certain areas of the prefrontal cortex, a highly complex brain region associated with abstract thought and decision-making. People who identify as strongly extroverted, on the other hand, tend to have thinner gray matter in those same prefrontal areas—which hints that introverts tend to devote more neural resources to abstract pondering, while extroverts tend to live in the moment. …

… (Using Ritalin and films, a 2013 study at Cornell University researched …) … crucial difference between the ways introverts and extroverts process feelings of excitement. Extroverts, the researchers believe, tend to associate feelings of reward with their immediate environment, whereas introverts tend to associate them with their inner thoughts—or perhaps interpret them as anxiety rather than excitement.

Above excerpts are from http://blogs.discovermagazine.com/crux/2013/08/27/are-the-brains-of-introverts-and-extroverts-actually-different/#.V0uaJ5_2ZaQ

Psychology Today, at https://www.psychologytoday.com/blog/thrive/201205/are-extroverts-happier-introverts says (bold font added by me):

… The brains of introverts and extroverts are wired differently! The front part of introvert’s brains are most active and stimulated by solitary activities while the back part of extrovert’s brains are most active. This part of the brain is stimulated by sensory events coming in from the external world! In addition, a chemical called “dopamine” is released by our brains whenever we experience something positive. It’s an automatic reward center and makes us feel good! Extroverts need more dopamine to feel an effect, whereas introverts have a low dopamine threshold. They don’t require a lot of stimulation to feel rewarded. …

It is said that USA gives preference to those with extraversion tendencies, and that was even shown by a “reading test” while I was in younger elementary grades; my multiple choice preferences to spending time alone in thought instead of with groups of children were marked as “wrong” answers ! This triggered one of my first “journal” entries as a child. I had to do something with the anger generated so I wrote about how I didn’t seem to have the right to FEEL differently than the teacher thought I should feel. LOL) … but some results show that human population is instinctually (before pressure from culture or circumstance) generally somewhat close to 50-50 between extraversion and introversion tendencies. Those of us with introversion needs should be considered as part of the population by care-partners and care facilities. It is important that our needs are not over-run by the generalization of “need for social interaction”.

So when care-partners discuss need for social interaction these are some of my concerns:

INTROVERSION: What were the social interaction needs of this person BEFORE they developed dementia symptoms? How much were those introversion / extraversion characteristics pressured by culture or circumstance (ie job) that are now no longer pressuring? Personally, I am an introvert and have always needed minimum 2 hours silence or at least 2 hours by myself every day in order to refill my ME tank (and as a working mother that was difficult to maneuver — needed to include extended bathroom breaks LOL). With dementia symptoms, this has become much stronger, so that now my best balance is only about 2 hours per day in interaction with others. For me, those two hours are filled with family interactions and Dementia Mentors’ chats. Both of those interactions are supremely important to my well-being, but in order to do them I NEED to have silence and few sound interactions with most of the rest of my day. Music or movie (which is double-dose with music and words) are wonderful but they cannot be in addition to Dementia Mentors’ chat — they must be instead of my Dementia Mentors’ chat or family interaction. Yes — for me, music is an interaction. If mealtimes are with others (and I encourage that) — then it needs to be considered as “interaction” time. In fact, if multiple conversations are going at the dinner table it becomes totally unfeasible for me. One asset is that our house is tremendously well-insulated — then has wrap-around enclosed porch further insulating, so that even tho we live short distance from highway, even siren is un-heard inside the downstairs. Upstairs is a different matter, but then also gives the wonderful sounds of fog-horn, bell-bouy, local seals and seagulls making noise.
EXTRAVERSION: It could be that if a person was very social before they developed dementia symptoms, these social needs may become even stronger after they develop symptoms, as a need to re-fill their own ME tank, but each person is an individual and has different needs. (Again excerpt is from http://www.myersbriggs.org/my-mbti-personality-type/mbti-basics/extraversion-or-introversion.htm)) IF I were an extravert then this quote might be true (but it is NOT true for me). “I like getting my energy from active involvement in events and having a lot of different activities. I’m excited when I’m around people and I like to energize other people. I like moving into action and making things happen. I generally feel at home in the world. I often understand a problem better when I can talk out loud about it and hear what others have to say.” Obviously, these things are NOT true of me. It is important not to super-impose or over-generalize social needs to where those of us who are strong introverts must go “wandering” in order to find the individual quiet time in a few stolen moments which we actually need to have as majority of our day.
ACTIVITY: My own silent time is mostly filled with activity — there are always things I want to be making, doing, or writing. (And I have boxes of supplies for selection of activities that are lower on priorities because I am postponing them until my cognitive symptoms or other symptoms like tremors have advanced to point I can no longer do the things I am currently doing.) I rarely remember being bored in my entire life. I don’t know whether it shows outwardly, because I mostly prefer subtle music, subtle colors, subtle flavors, slow pace, ((LOL; I wear purple because of dementia advocacy — my instinctive preference is the subtle rose color which fills my home)) … but for me relationships are the pinnacle of life. Relationships are what makes life worth living. So actually I am an intense person in almost all interactions that I allow in my life. Whatever I am doing, be it interaction with others in song, in words vocally, with words on paper, with graphics or pictures of some type, with animals, with the unseen forces, or with my husband, — it is a relationship interaction and thus requires my single-minded complete focus and attention. If I am interacting with you then I am looking into your eyes and separating my thoughts from any thing and any one else in life but YOU. I am not thinking about my future words, or even my own past or future. I am thinking only about you and our relationship. Maybe due to that intensity, there must be a part of each day that am non-active and non-interactive — alone with just my own thoughts. No DOing-ness but just BEing-ness. … and I think that need may be increasing.

Having others around is a distraction in my cognitive process. Even if they are not trying to talk with me, they are IMPORTANT to me and I am not able to focus exclusively on whatever my project is. The more other people are around (even quietly and trying not to interrupt my train of thought) then it is more likely I will need to actually go walking to a separate ALONE location for longer period of time to feel alone without feeling cooped-up.

My online group recommendations are listed at Dementia Symptom Perspectives’ FaceBook page >> https://www.facebook.com/dementia.symptom.perspectives/posts/1269744196375187

Here is a great article. It does not even discuss dementia symptoms but merely neurological science of brain. Sharing on my personal page because it is a crucial concept in my PERSONAL world. http://www.lifehack.org/377243/science-says-silence-much-more-important-our-brains-than-thought?ref=fbp&n=1

No Such Thing as BACKGROUND Noise at >> https://truthfulkindness.com/2015/12/22/drt-background-noise-2015-12/
* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2016-05/30 with 7.75hrs on txt + 5.25hrs on graphic. Search terms: person-centered, dementia, introverted, symptoms, social activity;

First Time of Where am I

Posted on May 8, 2016 by truthfulkindness

Tru here.

First times for new symptoms are always difficult – the realization that you just slipped a notch.

Yes, it is late; I was starting preparations for bed. Husband and I had enjoyed two hours of time together watching the show, “John Adams”. Fifteen minutes ago I walked in the bathroom, turned on the light … and had no idea where I was. For a moment nothing looked familiar, and I was extremely confused. Where am I? I forgot where I was and why I was there … just standing in the room in shock because I did not recognize where I was.

It only took a moment and reality clicked back again. I returned to the living room and hugged my husband … and then I cried.

It is scary to realize I am losing … everything.

(photo by Christine)

Loss & Grief CHOICES at https://truthfulkindness.com/2015/08/18/loss-grief-choices-dementia-advocacy/

Misty Stenslie

Posted on May 6, 2016 by truthfulkindness

Tru here. Another friend is gone; Misty Stenslie Claassen was 43 years old. She made the above zendoodle for me in December 2015.

When you have many friends with terminal disease, it creates several side-issues of grief, and that is a subject that needs addressed … but that is not my topic today.

Recently discovered my friend Misty was no longer with us. She and I shared background of tickborne diseases, dementia symptoms, love of art, and current tool of zen-doodles. We both spent years in antibiotic treatment for various tick-borne diseases. Myself, I spent 5 years with the best doctors money could buy and large expenditures of out-of-pocket expenses. My memory is shot so I do not remember exactly how long Misty spent with antibiotics (for Lyme Disease) and anti-malarials (for tick-borne babesia), but her obituary at http://minnesota.obituaries.funeral.com/2016/05/04/misty-claassen/ says, “… After a painful six year battle with tick-borne diseases and early-onset Alzheimer’s disease, Misty Stenslie Claassen died peacefully at her home on Saturday, April 30, 2016. ”

Like many friends, she had what I call an “end plan”, and put it into service; “I wanted to leave this world before the march of Alzheimer’s took away all of my joy. It was not “suicide” but rather a choice to die with some dignity.” She did not fear what comes next, but was looking forward to being free of the pain, confusion, terror, and other symptoms of her disease. There had already been times when she looked in the mirror and didn’t recognize the person looking back at herself. There had been times that, when waking, she didn’t know who the man in her bedroom was and felt terror. She needed assistance for grooming, adult diapers, and felt lost or afraid if her care-providers were out of sight, even in her own home. … So, she left this world in peace.
In lieu of flowers, her request is that we all do something to make the world better. “Some of the causes I cared the most about were people in and from foster care, animal welfare, sexual/reproductive health, and equal rights for all people. Donations in my name can be sent to the Foster Care Alumni of America. Thank you. I love you all.”

As Deputy Director for Foster Care Alumni of America (which she founded in 2004), Misty wrote this at Fostering Perspectives; http://www.fosteringperspectives.org/fpv15n2/Stenslie.htm .

May her memory be a blessing. ❤

Links:

Obituary at http://minnesota.obituaries.funeral.com/2016/05/04/misty-claassen/;
“I Just Didn’t Have Anybody” May 2011 at http://www.fosteringperspectives.org/fpv15n2/Stenslie.htm ;
http://fixcas.com/scholar/Stenslie.pdf for Public Hearing on Prescription Psychotropic Drug Use Among Children in Foster Care May 8, 2008;
and half-hour tele-conference recording at http://www.nrcpfc.org/teleconferences/02-10-10.html for “National Resource Center for Permanency and Family Connections;
then, Foster Care Alumni of America is the the organization she founded and where she requested donations be made http://www.fostercarealumni.org/product/honor-misty-stenslie/ .

Wont Be Around Much

Posted on April 3, 2016 by truthfulkindness

Tru here. I won’t be around much for a while.

Some probably know that my MRI shows “mild to moderate cerebro-vascular disease”. Probably had another slight stroke Thursday. Suspect this is at least my fourth. Sleeping a lot this week and will be avoiding any pressure in the near future. Mostly avoiding my “work” of advocacy because I know (despite best efforts) I get wound up in all I “need” to do (long line of workaholics). LOL

Will still be sending reminders for the four weekly Dementia Mentors’ chats that are during my own daylight hrs and attending chats whenever awake — as before, not the one that is like 1am my time (specifically for those living overseas).

Will probably still periodically participate in recorded Dementia Chats (Lori LaBey project) and in the advisory team for DAA in USA, but will be on limited basis for a while. Will NOT try to keep track of new projects posted by Persons With Dementia symptoms. Will NOT be on FaceBook hardly at all for a while so NO Private Messages will be picked up quickly … but I WILL be available email and text messages.

Will wait to resume exercise … but I am suddenly able to sleep again. For past few months my average night sleep was back down to two or three hours per night despite best practices. Now slept 18hrs Friday and 12 hrs Saturday. We will see what today brings but I am going back to bed now. Good night (again).

Stigma or Respect

Posted on March 29, 2016 by truthfulkindness

Tru here. I was recently asked my opinion on how to stop stigmatizing behaviors and attitudes.

After thinking about this question I guess I’d like to change the perspective.

When someone is singing out of tune it hurts, so it is easy for us to put them down – without recognizing in a positive way; Hey! They are SINGING !

I believe that, for the well-being of all concerned to stay in the realm of reality, it actually IS important to recognize the negative aspects of life with dementia and deal with them – but also to (like the 40’s song) accentuate the positives wherever possible; the CAN do of life.

So often we address issues with “don’t!”, “can’t”, and “shouldn’t” … often creating more relationship problems than we solve. For the stigma issue I would rather avoid that result.

One of our daughters is a very very basic teacher – a pre-school teacher. She regularly reminds us that it may be a slower process but it is almost always better to give alternatives, redirect, or to … turn the behavior upside-down and request the OPPOSITE behavior.

In this case, I suggest we change the conversation from how can we “avoid” stigma for Persons With Dementia … into how can we ENCOURAGE respect for Persons With Dementia?

For me personally, that is why I spend a good part of each day gathering, categorizing, and sharing projects from Persons With Dementia; the products from those with diminishing cognitive abilities may not be Earth-shattering, but a Person With Dementia can be held up as a Mentor, as a Resource, as an Author, as an Artist, even as an ENCOURAGER when they smile. Last year my friends and I created a “Success Stories” booklet, and it reflects the fact; we each have an appropriate level of “success” and the point is … Each human is worthy of respect.

Personally, I would rather not see respect DEMANDED because that, in itself, to me feels demeaning.

I would like to see the conversation change from a more politically-controlling conversation into a more positive context. It is really simple and true of all humanity; we ALL need to receive respect … and Persons With Dementia are no different. You know the song; R-E-S-P-E-C-T.

Appropriate Links (in the order I found them when searching thru my records):

Richard Taylor at https://www.youtube.com/watch?v=nyp8rgH4MtU & https://www.youtube.com/watch?v=-1iEbm44S70 ;
Harry Urban at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/advocacy-pt-prspectv-2015-nov-dec/ ;
Christine Bryden at http://slideplayer.com/slide/4469695/ ;
George Huba PhD at http://hubaisms.com/2015/09/07/do-not-assume-that-a-person-with-dementia-a-mindmap/ ;
Linda Pendergrass at https://truthfulkindness.com/index-persons-with-dementia-pwd/linda-pendergrass/july-2015/ ;
Michael Ellenbogen at https://truthfulkindness.com/index-persons-with-dementia-pwd/michael-ellenbogen/july-2015/ ;
Cecil Ristow at https://truthfulkindness.com/index-persons-with-dementia-pwd/cecil-ristow/prejudice-toward-pwd/ ;
Faith Riverstone at https://stilllifewithdementia.wordpress.com/2015/07/15/stigma-welcome-to-dementia/ ;
Kate Swaffer at http://kateswaffer.com/tag/stigma/ ;
Ken Clasper at http://ken2clasper.blogspot.com/2015/07/dementia-and-advertising.html?spref=fb ;
Agnes Houston at https://vimeo.com/122528299 ;
Amy Shives at https://www.youtube.com/watch?v=cJ0xojJYsHc&feature=youtu.be ;
Kathy Ryan at http://www.irishexaminer.com/ireland/pain-of-stigma-a-reality-for-people-with-dementia-334525.html ;
Mary Beth Wighton at https://uwaterloo.ca/murray-alzheimer-research-and-education-program/blog/post/why-do-you-not-believe-me
Cindy Stolz-Odell at http://www.ftdnoflowers.blogspot.com/2015/08/why-can-no-one-hear-me.html ;
Brian LeBlanc at https://vimeo.com/136100073 ;
Jarem Sawatsky at http://www.jaremsawatsky.com/letting-go/ ;
Norman McNamara at https://www.youtube.com/watch?feature=youtu.be&v=WC4INldUvWc&app=desktop ;
Tammy Bellamy at http://www.northernlife.ca/news/localNews/2016/01/10-dementia-campaign-sudbury.aspx ;
Greorge Rook at https://georgerook51.wordpress.com/2016/01/14/downstairs-at-downton-hospital/ ;
Cynthia Guzman at https://www.facebook.com/dementia.symptom.perspectives/posts/1132227446793530 ;
Helga Rohra at http://my-klug-dumm.blogspot.com/2015/06/standup-speak-up-ein-leben-mit-demenz.html?spref=fb (written in German but option to read in English if you open with Google Chrome browser) ;

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text for this page took 2.5 hrs. +1hr finding links; (graphic not included in time); Copyright 2016-03/26.

Sleep Problems Again

Posted on March 23, 2016 by truthfulkindness

Had not intended in writing for this blog this week, since I started my “family history” AND “spiritual Journey” blog and wrote in both of them this week. … But cannot sleep anyway, so might just as well write.

5am and another night without sleep; 0.00 minutes sleep. Actually I think that is still better than yesterday morning tho;

Suspect doubling my Aricept has been helpful for avoiding hallucinations and bizarre dreams but this night they slipped thru. Night of repeated icky horrid stuff and finally woke about 6am and stood in bedroom with my eyes open. To my surprise I was looking at two environments; one superimposed over the other. My horrid alternate reality was superimposed over the normal bedroom environment of husband, big dog, stuffed animals arranged on drawers of huge antique wardrobe, etc. (… or maybe normal was superimposed over alternate reality — don’t remember for sure.) It was my first experience of two realities at once. I walked about a bit, still in both realities, then got back in bed and cuddled up. Slept another 90 minutes and when I woke everything was normal — along with being late for my “normal” tasks.

Then last night and this morning, I just couldn’t sleep. It is not that I am worried about anything. I think, again, doubling the Aricept MAY be a factor in the intensification of insomnia this month, tho. My mind feels more active all the time … and there still is no “off” switch so it is more active at night along with more active during the day.

I am still doing all the “best practices” of:
routine before bedtime,
exercise no MORE than 3-4 hours from bedtime,
… and no CLOSER than 2-3 hours from bedtime (nothing like a schedule hmm?)
healthful eating patterns (when I remember)
drink plenty of fluids (I drink between half and three-quarters gallon because discovered few years ago I was drinking TOO much!)
less than 1cup (decaf) coffee,
but do not drink very much of anything in the later evening hours.
Checked again recently to make sure that some of the nutrients like potassium, calcium, magnesium, etc are in good balance. In fact, right now am taking extra powdered cal-mag to mix in drinks because I think Aricept consumes more and that seems to help the EXTRA cramps I get from the Aricept (but doesn’t seem to modify my “normal” amount of one to three nightly wake-ups with the horrid foot and leg cramps).

So I do all the right things … then I lay there for an hour or two, get up and do something relaxing (not looking at any kind of computer-type screen) for an hour or so, then go back to bed and try again. … and repeat. This morning, after 4hrs I went ahead and addressed a few issues on computer then tried again. Then just prayed, then meditated, then prayed some more, then got up to write this.

Nothing terrifically new and no real tips but it only took an hour and Who knows … it may HELP someone.

Links:

New blog (spiritual issues) intro at https://tlk4spiritual.wordpress.com/intro/;

Partnership With Time at https://truthfulkindness.com/2016/03/15/partnership-time/ ;

Impact or Terrors & Dreams at https://truthfulkindness.com/2016/01/19/impact-terrors-dreams/ ;

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text for this page took 1 hrs. ; Copyright 2016-03/23.

Partnership With Time

Posted on March 15, 2016 by truthfulkindness

Thank you for consistency; being there this morning when I didn’t know what to do.

Tru here. I think doubling my dementia medicine has been successful, allowing me additional reasoning abilities to have fantastic success on family history project during the weekend. But yesterday was a disaster, with our argument then multiple foot cramps during the night.

By this morning I was thoroughly exhausted and not thinking clearly at all!

I knew it was currently 7am and I had only managed to get about 2hours sleep from walking the floor with pain from foot cramps. I understood need to try for a little teeny bit more sleep before my 9:15 dental appointment but could not think clearly enough to know what to do about it.

So, despite the fact I knew he had been working on carpentry long into the night — I woke up my PARTNER. Yes; we are “partners” in the care for me.

No recriminations. There might have been some frustration for waking him from a sound sleep, but if so it didn’t show. I couldn’t even put together the words to ask what I needed, but just reminded him that he needed to drive me to an appointment at 9:15 but I had not been able to sleep. He asked what time it was. When I told him 7am he calmly replied “set your alarm for 8am”.

That was what I needed. Math story problems have been a huge problem for me lately and I simply could not figure out what the math problem was that I needed to do, then subtract the numbers in order to manage the time — I could do the rest and he did not try to do it for me. I set the alarm and slept an hour. Three hours sleep is a lot better than two (( smile )).

Applicable Links:

https://truthfulkindness.com/2015/10/27/symptom-math-problems/

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text for this page took 1.5 hrs. ; Copyright 2016-03/15.

Patient with Dementia Symptoms

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