Sharing Is So Incredibly Hard

Unless you have experienced what happens as your love slowly disappears before your eyes. I am not sure you will understand nor, am I sure that I can put into words what it is like. I wake some mornings with my wife wanting to know who I am and wanting to know what I am doing in her house.  That may be followed by moments later with her wondering where she is, and why she is here. While it is sad and disturbing for me, it has to be incredibly frighting for her. She will retreat to the bathroom and have a conversation with herself in the mirror. This is where she feels safe.

As I attempt to soothe her anxiety by making sure she is hydrated, fed and no other discomforts. There are times that she does not want me in the room or anywhere near. So I will leave a plastic sippy cup of sweet tea and a breakfast bar where she will find it. I’ll check back in, I am never more than an earshot away because she has fallen multiple times, I’ll replenish her tea and breakfast bar as needed. This ritual will last from several minutes to most of the day. Sometimes the only thing that will change the situation is what I call a ‘reset’.  A change, for us now a reset is our friend and caregiver Kim coming in. I think she can better relate to another woman now, but I am unsure. It is, however, a change, something new, a distraction from the previous battle. Does the trick most of the time.

As I sit here watching her pace the floor.

I’ll have to finish the story later, it is just too hard.


My Days Are Randomized

2I just finished updating the header photos on the website. These pictures will randomly load when someone visits the website. I chose pictures that may help explain what my wife is experiencing today. The day started off good better than most days have started off here lately.


That was followed by her wanting to go somewhere. The where was not important, she just wanted to go see some ‘peeples’. She starves for social interaction so she will ask statue-417262_1280several times a day where are the ‘peeples’. However, she was not dressed. I attempted to explain that she needed to get dressed first then we would go out somewhere. Like I said the where is not important.

She had shown very little interest in eating so she had not eaten very much. Her agitation level is somewhat proportional to her hunger level. She has never been one who could go long without eating breakfast. Or going very long without eating. After eating a couple of breakfast bars and drinking some ice tea. Her anxiety started to ease. We always keep plates and bowls of food out for her to eat. Fresh fruit, cheese, vegetables cut up into bite-size pieces, small bites of some form of protein.

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For those who have followed me on Facebook, you should know I employ music therapy, as an emotional regulator. Soon after she had got up this morning. I put on some music that she finds soothing. About 30 – 45 minutes after eating she was dancing to the music. Her anxiety and agitation levels were now as calm as a glassy lake.

This calm lasted a couple of hours before restlessness returned, but we are still not fully dressed. This time the anxiety was brought on by the need for a bowel movement. She is not able to fully communicate what it is that is bothering her. So we a left to guess and make educated decisions. We only get so many attempts before anger sets in. And she will pop off with a remark like ‘whats wrong with you are you stupid’. Rule number 1 never argue. A typical reply at least for me is. Maybe, can you help me?

word-cloud-679919_1280Failure to determine what is causing agitation will lead to all kinds of other issues that will have to be resolved. These issues will wreak havoc on everyone involved.

What has not happened so far today is we have not hit a wall. However, the day is not over and sometimes those walls come at night when she refuses to lay down.


Thanks for visiting


What is dementia? Part 4 – Understanding Aphasia

Again this is not one of our original but a repost from She has done a far better job of explaining than I could have. To read the entire article click on the link at the bottom.

In my continuing series on What is dementia?, Part 4 I promised to review aphasia. It suddenly seems more relevant to me as well just now too; I was diagnosed with PPA when first diagnosed with a front temporal dementia, although had seemed to stave off the progression with speech pathology techniques. However in this last few weeks, it is getting noticeably worse, and my ability to read, handwrite, understand others, comprehend what I read and speak is becoming much more difficult.

Many types or causes of dementia also have similar symptoms such as memory loss and can include varying types of aphasia. The National Aphasia Association in the USA defines aphasia like this:

Please click on the link to read the rest of the article

Source: What is dementia? Part 4 – Understanding Aphasia


beautiful beauty blue bright
Photo by Pixabay on

Thanks for visiting our page of original memes.  You are free to share these in their original unaltered state.

FYI if you are here you probably know what a meme is. It is pronounced meem it rhymes with ‘team’ or in our case ‘queen’. “The word is a shortened form of memetics the study of information and culture based on an analogy with Darwinian evolution. Proponents describe memetics as an approach to evolutionary models of cultural information transfer.” They have often been used to spread false information because it requires additional effort to search the accuracy of the statement. However, now they take various forms of inspirational, religious, motivational, or cultural awareness. We make every effort to make sure our memes are accurate and factional.

Kim is the ‘Meme Queen’ if you have a meme that you would like to share with us, please email and put ‘meme’ in the subject line.

What is dementia? Part 3

Again this is not an original post but a repost from It is necessary to follow the link at the bottom of this post to read the rest of the article

In my continuing series on What is dementia?, for part 3, I am explaining in more detail, the two infographics published earlier this month. Please do let me know if I have any information incorrect! I am doing my best to ensure it is both accurate and easily understood by those of us living with or supporting someone with dementia. They are not meant to be necessary for medical or nursing students, although they may be helpful to them.

Many people ask is Alzheimer’s Disease dementia.

Many who have been diagnosed with dementia are told their dementia is FTD or PPA.

I often hear clinical experts and researchers say, ‘Alzheimer’s or dementia’, also implying that Alzheimer’s is not dementia.


Please click on the link to read the rest of ‘What is Dementia Part 3’ Source: What is dementia? Part 3

What is dementia? Part 2

Again this is not one of our original post but a reprint from

There is no time today to write a blog, or for anything other than adding this graphic, which is also from our book, Diagnosed with Alzheimer’s or another dementia released last week. Like the umbrella graphic from a couple of days ago, this does not outline every single symptom but is an overview of what to expect from damage in the different areas of the brain. Again this was produced by my BUB, but the information within the boxes comes from Lee-Fay and myself; we felt a simple graphic like this would be helpful as an overview of the disabilities caused by the various symptoms of dementia, specific to which area of the brain is affected.

Source: What is dementia? Part 2

“What is dementia?” Part 1

One of the Questions that I am asked most is what is the difference between Alzheimer’s and dementia. Often the initial diagnosis is the catch-all phrase dementia. Then later after the disease progresses and further testing you may get a more specific diagnosis. For us, it was approximately 2 and a half years. We had the second MIR another round of test mostly memory tests, but also blood and urine tests and an extensive interview with a second neurologist. She confirmed that it was Alzheimer’s.

I have chosen to share another site’s in-depth explanation she has done a far better job of explaining than I ever could.

Currently I am working on a piece titled “What is dementia?” which I have decided to turn into a short series of blogs. So often, I am asked questions that I had imagined health practitioners would (and should) actually know the answers to if they are working in the field of dementia, but even some of the educated ones are operating under a lot of myths and misperceptions. Only last week, yet another registered nurse who has been working in a dementia specific unit for more than 20 year, asked me is Alzheimer’s disease dementia.

What this means, I think, is although I realise there is a lot of upskilling of medical and nursing staff going on in many countries, it cannot come quickly enough! Imagine if I worked in ICU, and didn’t know how to insert a cannula or resuscitate someone, a very simple procedure in an area like that. We would all, quite rightly, be outraged…


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