Thought there was no reason for my tears, but then i realized the tinnitus (ringing in my ears) was so loud i could not hear myself think.
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i grew up near Multnomah Falls, and the Lodge restaurant was my first “real” job. This noise in my head sounds like the roar of a large waterfall; the confusion overwhelms every other awareness.
My strategy tools of speaking out loud, reminding myself what task i am trying to do, or what i am trying to find … don’t work.
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Not all folks with dementia symptoms have tinnitus or other types of auditory hallucinations, but i think it is more prevalent in that population.
Tinnitus has been a problem for me since early in the process of cognitive decline (2004). It has been discussed with my doctor and i have done plenty of research. including a link at bottom of this article.
No; ear plugs do not help since the source of sound is damage inside the brain. Ear plugs just make the sound appear even LOUDER !!!
It is a comfort to remember that some days are just really LOUD, and other days are more manageable. — Gotta keep things in perspective
.Tru here … Extra challenges this month, so only two extra “pages” added on my website this month (in addition to my weekly Blog Entries).
!! Remember, Links are in colored text, not the pictures !!
Right-click on colored text and selecting “open in new tab”, will allow you to return to this tab easily (at top of window) when you finish. Remember, Links are in colored text, NOT the pictures.
Tru here, answering a question regarding care-providers coming in the home of Person Living with Dementia.
If I was the person with caregiver coming to my house, I would like my loved ones to:
*** Make Sure the provider understands my specific type(s) of dementia, and the symptoms commonly shown by those with these types of dementia. Alzheimers is ONE type of dementia, but there are others, and each type has symptoms that are common with that particular type of dementia. Unfortunately in-depth training is not always given on symptoms and strategies, and hallucinations or symptoms related to communication can create big complications in ability to provide care.
*** Make Sure the provider has some background about me personally; do i gain energy by being around other persons, or lose energy from the interactions ?? (everyone has some of both, but most persons have a primary energy reaction one way or the other). Do i enjoy interactions about spiritual beliefs and political standings … or abhor them ?? The more severe my symptoms, the more important personal background is in finding successful strategies for an in-home caregiver to provide care well, so loved ones might want to make sure TOOLS for learning those aspects of personal background are available.
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*** Research if there is something specific that is bothering me ??
Sound: – is care-provider playing music, or wanting the TV on, when it is not my normal procedure ?? ((After all, it is MY home too, and noise can strongly increase our confusion)).
Light: Each person has light preferences; personally my window drapes are almost always open and i require lots of light, … but others may be uncomfortable in their own home because someone else is changing their preferred lighting by MORE light than they are comfortable with … or LESS light than they need.
Temperature: i personally need higher temperature for comfort. But someone else in the home may be challenging that need.
Belongings: moving things around from where i was previously able to find the items ?? ((i must have my things in sight because otherwise cannot find them)).
Invasion of personal space and ones’ personal body: these are intense issues.
Introvert Needs: For me, as a strong introvert; i get energy when i am ALONE, and time with others COSTS energy. The more intimate the contact, then the more it drains my energy. Please consider those needs to be alone, or i will have no energy in the tank for dealing with the frustrations of growing dys-Abilities and frustrations of communication symptoms. This will probably be reflected in failing relationship with my loved ones.
Am I worried about other privacy issues – or cost ??
*** Do not lie to me, but it is okay to SUGGEST then DISTRACT .
I very much want to supply needs for others, so I might suggest that you tell me Emily would like to learn more about dementia (or gardening, crochet, etc), so she will be spending some time here this WEEK (without mentioning any further time than that, unless it is a relief instead of stressor) to help me with meals while she learns.
Let me be a PARTNER in my care, as much as possible, and it would be great if “Emily” really IS interested in learning about dementia ! —
There are times that i have forgotten i have dementia symptoms, in which case she can be interested in learning something else that i have knowledge of.
Then immediately distract me with other in-the-moment type things, instead of letting me focus on future worry of extra people in my home.
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… Photo is Take Care Bear. “This bear really puts the “care” in Care Bear. While she may have a tendency to be over-protective, it’s only because she values her friends so much, and has made it her business to keep everyone healthy and in one piece.
When it comes to Take Care Bear, safety always comes first.” https://carebears.fandom.com/wiki/Take_Care_Bear . Graphic is revised from a KidCore sticker by Jackie at PicsArt .
. Photo is Take Care Bear. “This bear really puts the “care” in Care Bear. While she may have a tendency to be over-protective, it’s only because she values her friends so much, and has made it her business to keep everyone healthy and in one piece. When it comes to Take Care Bear, safety always comes first.” https://carebears.fandom.com/wiki/Take_Care_Bear . Graphic is revised from a KidCore sticker by Jackie at PicsArt .
It has been an extra-rough week for me, and lately it feels like almost everything i try to do almost super-naturally goes wrong. … which means that i must avoid despair and encourage myself by celebrating when i attempt a “normal” basic task, and SUCCEED; avoiding an extra hour or two of work from messing things up.
With recent minor toe surgery and ANOTHER subsequent infection, my routines have been a bit disrupted; distraction of pain and need to avoid swinging my foot around by walking (and knocking toe into everything from table legs to walls and doors); no going outside with my chickens; Husband says i am not drinking enough liquids (which is an extreme change from my usual challenge of drinking too much and flushing nutrients out of my body), etc.
My usual strategies are not working so well right now, in so many categories.
… and i am needing to take a pain pill every day (before flushing of toe), so that intensifies my thinking problems even more extreme.
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no matter what i try to DO, whether physical or just laying on the couch — i create problems. When i finally do something without creating extra problems (successfully washed my mug as preparation for morning) i CELEBRATE !!!
As a strategy to avoid despair and depression, when i remember something, … i celebrate. i reach over with my right hand and pat my left shoulder with a PHYSICAL “atta-girl” touch, and my ears will HEAR the words “good job”. … and my husband smiles and will often join in with “Yes, that was good remembering” … or good something-else of whatever i did right.
In the prevailing “negative” moments of dys-Abilities, Recognizing these “positive” moments of ABILITY are crucial to my well-being.
For most people, Best concentration happens when there are no distractions.
i am trying to remember to make FREQUENT trips to the bathroom, because Pressure in bladder or bowels can distract from concentration needed in other everyday processes.
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Until dementia symptoms i did not need to think about swallow process, or walking, reply to casual comment, etc. … but now that is changing. Discovered that each of those processes requires concentration, and i need to have full concentration on my priorities, so i need to avoid trying to work on something while my brain is distracted by holding in body fluids or solids.
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Now, whether i feel the NEED or not … i make a trip to the bathroom BEFORE eating or drinking (so that all my concentration can be devoted to swallowing). i make a trip to the bathroom BEFORE taking time to sit and talk with my husband (so that all my concentration can be devoted to communication). i make a trip to the bathroom BEFORE sitting down to work on a blog entry, and before going outside to walk around while doing chores, (less likely to fall) etc. … This allows maximum focus for whatever task is at hand.
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i am trying to establish the frequent bathroom trips as a ROUTINE now, while i still have this ability to establish routine on my own. i probably make a bathroom trip most every hour. This avoids the pressing need of a bathroom trip as distraction.
When i forget, My care-Partner might remind me to wash my hands before we sit down to eat, and while we are there i should stop at the toilet before washing my hands.
i recognize that change is inevitable. In later stages, of course, my care-Partner will be joining me on the trip to wash my hands and stop at the toilet.
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Side-notes:
i have also noticed the benefit of side “grab bars” on each side of our ADA toilet; Along with facilitating body movement to sit or stand, these bars can be useful to help empty bladder and bowels. We THINK we are done on the toilet, but if i grab the bars and bear down with pressure pushing or pulling … i discover that i was not done after all. This may feel like “too much information” but has been very helpful for me. Running water in the sink can sometimes be helpful for emptying bladder.
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Maybe if i go to the bathroom and empty my distractions then i will think of a clever close for this article, LOL .
BUT stop the presses for a moment; each type of dementia ‘stages’ differently. You might check out this graphic on dementia progression with three of the major types of dementia
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With the more complex staging scales, Most of us living with dementia are in several “stages” of dementia simultaneously, because our swiss-cheese “holes” in the brain create many inconsistencies.
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INCONSISTENCIES:
i speak haltingly, but i can still speak quicker than what i can understand someone else speaking. i think recently my words flow better typing with a keyboard than they do flowing out of my mouth verbally
My ability to write is much better than my ability to understand what i read. i started typing before age 10, and by 12 years old i was typing forms and letters for our family business. so i still write/type a blog entry almost every week, but when i am interrupted while writing a paragraph, that paragraph often makes no sense to me when i read it back to myself to refresh my memory in order to finish the paragraph. … So my ability to write is much better than my ability to understand what i read.
Every person had things they did very well, and sometimes those abilities carry over to better functionality in those particular areas, which can distort guesses of dementia “stage”. (Altho i was in accounting, and number-ability is one of the first things i lost.)
Personally i have Loads and Loads of dys-Abilities, but my ability to figure out a graph or pictorial representation is still above average. So i cannot understand the WORDS when husband tries to tell me something, but if he can make it into a picture then i can understand. My ability to understand visual concepts is much better than my ability to understand spoken (audio) concepts.
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There are huge “stage” inconsistencies in dementia abilities, and also, some types of dementia carry the characteristic of tremendous variation of abilities throughout the day, that are not consistently shown on any particular day (thinking Lewy Body here but there may be others). LBD can hit many ability levels during any given day, with strong abilities at unpredictable times.
On the 7-stage GDS scale, lack of remembering grandchildren’s names and last names of married daughters, along with not recognizing my husband would have put me in stage 5 for past 5 years or so, and my other abilities probably fit more in stage 4. But i have very good coping strategies and my last testing about 3 years ago still indicated Mild Cognitive Impairment (stage 3 on GDS scale). of course my Grandmother tested well enough that she did not get a dementia diagnosis until her Activities of Daily Living were quite impaired and my mother had been caring for her a couple years (probably about 2000).
Personally, i think the 7-stage versions of dementia progression cause much more confusion than they help. So i think of dementia in 3 stages instead; there is “early-stage” with few symptoms, and strategies for any particular symptom have only needed revised a few times. Many folks can still drive in early stages (but i suggest frequent evaluations to make sure they are still safe). Middle stages cover lots of ground, … then end-stage (also known as late-stage).
Tru here. Been a HARD month of change and loss. In addition to my weekly Blog Entries, these “pages” were added on my website during May 2021.
!! Remember, Links are in colored text, not the pictures !!
Right-click on colored text and selecting “open in new tab”, will allow you to return to this tab easily (at top of window) when you finish. Remember, Links are in colored text, NOT the pictures.
UPDATE: i could still fully taste fruit when i began preparing this blog entry last week, but during the past week am losing the taste for fruit also … i just get brief tantalizing tastes of a moment of two … then another moment. But all the in-between is lost. … and instead of the complex realm of a specific taste (like strawberry) i am getting the acid but some of the other tastes are gone, which totally changes the way a strawberry tastes. Tremendously discouraging … altho not too surprising. ***
Tru here.
i have always been VERY oriented to smell. As a child, my nose was used for sniffing out ants and several other things in the household. as i got older it was my privilege to create personalized fragrances for family members. Then came dementia symptoms, and after years some changes in my ability to smell.
i noticed a few scents that no longer had ANY smell for me. First was spoiled meat of the venison-type about 6 years ago (~57 years old) then i lost the smell for 3 of the essential oils used in my personal fragrance about 4 years ago. … then this, that, and any-other-thing (including body odor and ants, LOL).
Now (in 2021) there are few smells that i can actually discern. i realize those particular smells are also probably on short-term borrowed list, so those smells are highly valued.
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… and the same is true with tastes. About 3 years ago i noticed that i no longer appreciated that wonderful yeast-y taste — the smell and taste were just GONE. Then about a year ago i lost the taste of CHOCOLATE. Noted no smell or taste for chicken beginning the first week of March, and hamburger shortly afterward, Now … MOST tastes are gone. i cannot smell or taste the standard varieties of meat, or eggs, or cheese, or gluten-free bread, etc — but i can still smell and taste raisins, mandarin oranges, and strawberries.
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So the main thing i still have is TEXTURE, and sensations of Sweet and Salty, along with dwindling taste for fruits. i still enjoy the rough specific-ness of thick-cut oats (even though i no longer taste the oats) — so i add a few more raisins. i no longer TASTE the soup, but i still enjoy the wonderful combination of textures when my thick cauliflower soup is combined with hamburger crumbles., etc. i cannot taste the chocolate or the coffee in my coffee-chocolate protein drink, but we still add the coffee because i get a brief after-taste of the cold-brew (not bitter) and we still add the chocolate because i like the creamy smoothness of TEXTURE.
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This is a huge change of focus in eating, but it is also time to decide..
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Continue as before … OR make changes.
On special times (like breakfasts with Dad, after spending the night with him on the train engine) i would eat rich french toast made with thick-cut slices of bread or fluffy waffles. Either were topped with hot fresh apple sauce and cold ice cream. i have denied myself foods like this for about 10 years – because i have celiac disease and also going for the Keto LifeStyle (which better fits with my high needs for protein). … But now i am quickly losing the receptors for tastes.
if i had known that i was this close to losing all taste sensations in the dementia process, i think i would have splurged more often in the past two or three years.
if i had it to do over again, after losing 2 or 3 tastes, i would probably get glutened (on purpose) and start ENJOYING those tastes while i still had the ability to enjoy them (even at the cost of substantial gluten discomfort). i realize the gluten TEMPORARILY intensifies cognitive symptoms for those with celiac disease … but this way i totally missed out on those tastes.
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So i have decided to get glutened AND splurge with blood sugar (within certain boundaries). it is time for evaluation of which tastes i am still able to enjoy – including those tastes from foods with gluten. Then i can better decide how often i will balance Best Practices … with taste desires.
i have been dealing with slowly progressing dementia symptoms for over 20 years now. New symptoms are always traumatic.
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… in past week have noticed unpredictable problems swallowing. Not at any specific time of day, etc. First it was SOMETIMES when swallowing pills, then sometimes when swallowing just a hot or cold drink with nothing added. In my case, the drink is not “stuck” in the throat, instead, i am unable to trigger the muscles to begin a “swallow” routine.
For ME right NOW, swallow problems happen when i am trying to do something else at the same time.
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A few moments ago i got up from sitting position and realized urgent need to go to the bathroom, but i was also trying to swallow the drink that was already in my mouth. Trying to hold the pee in … while swallowing … did not work so well.
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So my husband told me that i am functioning better than 80% of the population; he said “Dont be so hard on yourself. You are trying to do 3 things at one time. 1) Walk to bathroom 2) Hold in the pee 3) swallow the drink in my mouth.
— He thinks i am doing exceptionally well, because most people cannot walk to the bathroom and hold the pee in, let alone do something else at the same time. ((LOL))
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*** in the future, i will try to make sure i am not trying to do anything else (at the same time) BEFORE i put the drink in my mouth.
VeryWellHealth mentions on DysphaGia and DysphaSia (impaired Language) ; “Both of these conditions are caused by neurological damage to the brain that comes from an injury or a stroke. Both dysphagia and dysphasia are treated by speech therapists and both have to do with a person’s ability to control muscles in the mouth and throat. >> https://www.verywellhealth.com/first-aid-phraseology-dysphagia-vs-dysphasia-1298200 . i realize that may be a bit too generalized, but here is a Link with much more detail >> https://gi.org/topics/dysphagia/ .
Tru here. In answer to a question about bathrooms.
Those of us living with dementia have big problems with both guessing distance/range and seeing color on same color.
THANK you for trying to find out the WHY of what is happening. ! As Persons Living with Dementia (PLwD) our brain is dying. We are in the various phases of brain-failure, and the brain processes visual data as well as every other sense.
What our eyes see is interpreted by the brain, and this is probably a brain-failure issue.
Your Loved One NEEDS to have the bathroom door a different color than walls; possible problem of distance perception. It is surprising how many of us have nightmares of not being able to find the bathroom door.
He needs to have toilet and toilet seat a different color than the floor and walls; again a distance perception issue. Otherwise eventually he will not even be able to FIND the toilet, let alone lose his marksmanship.
Same is true of plates on the table; very beneficial to have plate different color than the table (or tablecloth). And it helps to have trash bins a different color too. Several folks have insisted that their loved one throws trash on the floor out of anger, and that is POSSIBLE, but unless the care-PARTNER is actively researching why we (as PLwD) do things, it is very easy to blame .
Personally i still have a bit of distance perception remaining, but it is going fast; i dont realize i am setting my mug on the very edges of table (because placement of the “edge” is all wonky). My “estimator” for everything from where the corner of the wall/door is, to time needed to dress for an event is broken (probably because requires CONTEXT of past experiences, and that is all going haywire).
Important to remember that your Loved One’s abilities are changing, and it feels like as soon as we get some strategies in place to help a specific symptom, then our brain deteriorates more and that strategy becomes less effective, and needs adjustment.
Husband says “New strategies need to be developed constantly; keep your strategies current, for which specific issues you are dealing with.” Symptoms change, and those constant changes feel like walking a tightrope every single minute of every single day. i know it is exhausting for care partner, but it is also extremely exhausting for Person Living with Dementia (PLwD).
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