When there is a rock in our path, we can stumble over it or use it as a stepping stone.

Sunday, August 28, 2011

on the lighter side

Since some of the posts in this blog will be less than cheerful, I am just taking a moment to post the url of my Live Journal for anyone who wants to see my lighter side.    http://angel-has-fun.livejournal.com/ is my happiness/gratitude journal.  It is where I post the the things that make me smile, laugh or chuckle or inspire me.

My Side of The Fence

Years ago, when I was first diagnosed, I had a blog called "My Side of the Fence," about life in the early stages of early onset dementia.    I just read a heartbreaking blog post from Mary at "Down The Rabbit Hole," called "Another piece of my husband is now gone forever."

It made me think of the title of my old blog because as the extensive comment I left on that post shows, this is one more example of the differences between those with dementia and those without.    As I wrote in part of my comment on that post:

"I can understand completely how your husband felt with the types of games you described as I would struggle with that type too. I would not rule out all board games for him (he might be ok with ones that only requiring rolling the dice and moving the marker a certain number of squares) but I would not remotely suggest subjecting any dementia patient to the type of games you were describing as they would be sheer torture. I know that was not remotely your intent, that you were trying to get him to share the "fun," but even just reading what you were writing made me recoil thinking of how much I would struggle with something like that myself and I am still considered "high functioning" for a dementia patient."

I know those without dementia can consider something like that fun and enjoyable just as I remember the days when I used to enjoy things such as going to live theatre or an occasional movie or live concert or an amusement park or a fair but now just the thought of such things makes me recoil as I know how badly messed up I would be by that much stimulation.   Yet these are things that millions of folks without dementia do regularly for enjoyment.

For those caretakers who read me, please remember when planning things for your loved one, the view from our side of the fence is very different.   Even if we used to love it, if it is more than our brain can handle now, what you planned for us as fun will be a very different (and very non enjoyable experience for us).    Let the patient take the lead in showing you what they can handle (and enjoy) whenever possible please.   Both of you will find much more pleasure in life that way.

Tuesday, August 23, 2011

Better late than never

I had an "ah ha" moment this morning.   A few days ago in "ok, so I'm messy now," I wrote about my roommate watching me spill my morning coffee as I was making it and indicated that that is something that I have come to take for granted.

This morning, I suddenly realized why I have been making a mess every morning when I make my coffee.   I knew enough to not put in enough soy milk to have the liquid go over the rim of the cup.   I knew that there was a decent sized chip out of the side of the cup. (Yes, I could use a different cup but this has been my favorite for years.   It is comforting for me to start my mornings with.)

The part that had not connected for me was that what I need to now do (the chip is only a few months old) is only fill the cup up to below the bottom of where the chip is as what was happening each morning is that I was trying to keep the level of liquid below the rim of the cup and it was spilling out the side through the opening where the chip is.     This morning, it finally hit me what was going on.    

Ok, so I'm no longer the brightest bulb in the pack (yes, there was a time that my IQ literally tested in the genius range) but thought I would post this to give caretakers who read it a peek into how dementia impacts a brain - things that would be obvious to a "normal" brain just don't necessarily click with a brain that is full of holes (literally) because of dementia destroying pieces of it.     

Always a silver lining - I did get a good chuckle out of it when I finally figured out what is happening.   As I have said before, as long as I can continue to laugh at the things I do because of the dementia, I will be fine.

Monday, August 22, 2011

Finding Laughter in unexpected Places

I have always loved the way Norman Cousins used laughter as a natural form of pain relief.    As my pain from various things is increasing, I am turning more to funny videos, etc. for regular doses of laughter.

As my balance problems have been increasing, I have been getting much more leery about going out for walks alone so have been getting most of my exercise instead from doing a lot of "swalking" (swim walking) in the pool instead.

Today I got a good belly laugh while out in the pool.    A bird started very clearly saying "uh uh."   That made me chuckle and I couldn't resist saying it back to the bird.   The bird replied to my "uh uh" with "ahhhh."   After a few times back and forth with exchanging alternating "uh uh"'s and "ahhhh"'s and "oh"'s with the bird, I sang "ting tang walla walla bing bang" in a "so there" tone of voice to the bird.     I cracked up when the bird when silent after that as if to tell me that he (or she) couldn't top that one.

No idea what type of bird it was but I loved the fact that I got to combine getting exercise, fresh air and a good healthy dose of laughter.

Saturday, August 20, 2011

ok, so I'm messy now

On August 9th, I wrote "ok, so I need a bib now."     I guess this is part two of that post.

A few mornings ago, my roommate watched me make my morning coffee.   She commented on the mess I made on the counter from the coffee spilling.   I remember thinking "yeah, so?" To me, wearing my food (on my clothes or my face) or spilling it when preparing it just doesn't phase me at all anymore.   I take it as much for granted as I take suddenly losing my balance when standing or walking (in fact, I rather suspect there is a connect between the fact that both are happening more often).

The way I see it, as long as I clean up my own messes (and I do) then there is nothing to get stressed about.   It just is what it is.  I know this is one of the things that causes caretakers to despair, but from a patient point of view it is actually rather nice to not feel the need to get constantly bent out of shape over every little thing.

I figure as long as I care about the important things (like making sure I pay close attention when I have something on the stove) where actual harm to someone could result then I am still doing fine.

Monday, August 15, 2011

Bucket List for a dementia patient

I have to confess at the start of this post that I am not now and have never been much of a movie watcher.   Thus I only just learned now (from Wikepedia) what a Bucket List is.    That got me to thinking as technically anyone with dementia has a terminal diagnosis but we are also in a position where our ability to do most of the types of things folks seem to put on bucket lists will be severely limited long before we reach the ends of our lives.

So question for others with dementia:   do you have a bucket list and if so, what types of things are on it?

For myself, the answer is very simple:    Go through all of my possessions and get rid of everything I no longer need and organize the rest so that I can easily find the things I do need and when I can  no longer do my own self care, my roommate / caretaker will know exactly what I have and where it is.

That may not sound very exciting to those whose list includes sky diving and mountain climbing and bungee jumping, etc. but at this point in my life, I am finding the most important thing to me is to simplify my life as much as possible.   I used to thrive on being busy, but now I feel more and more of a need to have my life as simple and calm as possible

Friday, August 12, 2011

Caretaker Patient Symbiosis

In "Serendipity and Synchronicity," I wrote about two of my favorite words.   Today, I have a third "S" word to add to the list:  .

Most of the blogs I read are dementia related but on my travels, I have stumbled across a few blogs where the personality of the author of the blog keeps me reading, even though the topic would not normally be on my reading list.     Exorphin Junkie falls into that category.    Yesterday's EJ post on "Mouse Bread"  made me realize that Symbiotic has to be added to my list of favorite words.

Even though the common view would be that the caretaker gives and the patient receives, I think the relationship is symbiotic as there have been a number of studies now that show that helping others benefits the helper in a variety of physical (including stimulating the immune system) and psychological ways.     I would add that I believe the caretaker also receives many opportunities for spiritual growth when caring for someone with a progressive, degenerative, incurable, terminal prognosis.

Thursday, August 11, 2011

Exelon vs. rivestagamine?

I switched from Exelon to rivestagamine around the end of last year because by getting 90 days of the latter via Humana's mail order instead of the former monthly from the pharmacy, I have no monthly cost for it (until I hit the donut hole).   However, I have noticed more of a decline in various areas over the last six months or so and I am wondering if it was time for me to take another downturn anyway or might it have to do with the switch to the generic.

Anyone have any experience going from Exelon to rivestagamine?


Wednesday, August 10, 2011

I choose stepping stone

In a comment on my post  "Blogs That Inspire"    where I asked readers for suggestions for blogs that inspire them, Karen suggested that I read CoffeeandChemo  .   I started to read it today.    The blog goes back to 2007.   For now at least I am starting with January 2009 to get a feel for the last two years of the author's life prior to her death from cancer.    I am glad Karen recommended the blog (and would still love to get more recommendations for blogs that inspire).

The January 26, 2009 entry states:

"Though I am religious, and I believe in God (most of the time), I am not one of these super religious types who believes that everything that happens is for the best. I don't believe that God did me any favors by giving me cancer."

That reminded me of something that I have been wanting to write about on here.    You will never see me call myself a victim (of dementia or anything else) or a dementia sufferer.      I absolutely believe that all of life's challenges including loss of loved ones, loss of home, job, terminal diseases, etc. are gifts to us as it during life's hardest times that we achieve our greatest periods of spiritual growth.  

I see these types of things as a pat on the back, a "you are stronger than you think you are, you have handled a lot already and I know you can handle this too.   You will be even stronger for having done so, and better able to empathize with others in the same position and thus help them too" message.     Sure we might feel like the pat on the back is so hard that it knocks us to our knees but that is the best position for prayer anyway.

If we keep our spiritual perspective, then good has to come out of anything that happens to us.     If we focus only on what we have lost or are losing and become guest of honor at our own "oh woe, is me, this is so unfair" pity party, we will lose precious opportunities for our own spiritual growth including the opportunity to be able to reach out to offer inspiration and strength to others.   

We cannot always control what happens to us but we can choose how we will respond to what happens!     We can choose our words and our thoughts.  Since our emotions are controlled by our words and thoughts, we can choose to continually return to a place of  internal happiness no matter what our external circumstances are.     At the top of this blog is one of my favorite sayings:

When there is a rock in our path, we can stumble over it or use it as a stepping stone.

I choose stepping stone!

Tuesday, August 9, 2011

ok, so I need a bib ...

About a week or so ago, I was in my room eating and my roommate/caretaker called out to me to tell me something.   Without a second thought, I got up and opened the door to see what she wanted.    She looked up at me and seemed to be rather shocked that there was a lot of food on my face around my mouth and chin.    My reaction to that was basically "yes, so?" as that has now become the norm for me.   Yes, I know my eating is much messier now and have even gone looking for the bibs I once had before my Exelon as I do need them again but it was still a surprise to me when she mentioned it as I take it so much for granted now.

Since she so rarely ever sees me actually eating (I make my food in the kitchen and then take it into my room (where I spend about 90 - 95% of my time alone most days) to eat) she did not realize how much food seems to end up on me rather than in me now.   (I also do my own laundry.)    Her surprise was yet another wake up call for me that I am slipping further.

That is one of the benefits of not living alone, having even intermittent contact with another human being as I go about my daily life does provide a mirror for me to better gauge the progression of my dementia as someone else notices things I have started to take for granted.

Sunday, August 7, 2011

Fear of the dementia label

Yesterday I wrote about the fact that most of my social life occurs on Second Life.   This is because since I am primarily homebound, 98% of the time my only in person contact with other humans is with my roommate/caretaker and since she is having a rough time with a variety of diagnosis herself including fibromyalgia and migraines, there are days when I have little to no contact at all with her as she is very sensitive to light and to sounds including the human voice and the sound of my typing.   Thus she often escapes to her quiet, darkened room for large periods of time to seek relief from the pain that sound and light exacerbate for her.

Thankfully, I have always easily made friends and have developed a wide social network on Second Life since 2005.   Now comes the hard part.     Only a fraction of those who know me on Second Life are aware of my dementia diagnosis as online it is much easier to disguise.    It is not that I want to deceive people but that I am all too aware of how people react to the word "dementia."   I want them to get to know me first before I have that label attached to me.

The hard part?   I am reaching the point where it is becoming harder to "appear normal" even online.     When I write a blog post, I have time to proofread it and catch at least most of my errors.   When you are in an ongoing conversation on Second Life things are moving much faster (especially when in a chat with multiple others) and there is far less time for proofreading and editing what you type.   Some errrors can be written off as normal typos that everyone makes but things like using the wrong word for something are more noticeable indicators that something is not as it should be.

Additionally, as my math abilities continue to deteriorate, I have had more often to reach out to others for assistance with basic things (such as yesterday having to ask someone to help me convert the time difference between Hawaii and Florida so that I could understand when an event in Hawaii would occur in my local time).     "Normal" people don't need to ask for that type of assistance.    "Normal" people also can do things like understand how to solve the puzzles in some of the Second Life games such as Tiny Empires.    When others realize that I cannot do so and try to explain to me how the puzzle works, they hit up against my inability to comprehend what they are saying and realize that no matter how functional I may seem to be otherwise, I am not "normal."

So I have reached the point of deciding it is time for me to come fully "out of the closet" with my dementia diagnosis.   Instead of continuing to try to appear "normal," which is becoming more and more of a struggle for me now, I am blogging freely about my diagnosis and sharing my blog with many who have known me online for years without knowing I am a dementia patient.    I am hoping that who I am, who they have known for years, will count for more than the dementia label and friendships will continue as they were for as long as I am able to remain online.

Saturday, August 6, 2011

What do you miss?

As I have written previously, having my days structured is very important to me.   That includes even such things as spending little to no time on Second Life (my primary social outlet) until later in the day usually as SL takes a lot out of me so I like to get everything else for the day done first.   This morning I logged into SL for what I had thought would be five minutes to check some things in inventory and ended up being on for several hours.    Thus I am feeling very drained right now and not up to writing much.

On my last post, NewKidOntheBlogg (I love that name) invited me to visit her blog at Plant City Lady and Friends (her blog about her husband who has been diagnosed with mixed dementia).   I have spent some time there and will definitely spend more time there.   One of the topics I have been discussing with her there is that her husband can still drive now but she is not sure when he will have to stop driving.    I had to stop driving over a decade ago but don't miss that as much as I miss no longer being able to clown.  (Yes, I was a real life full grease paint clown.)

For those with dementia, what do you miss the most?     Or for caretakers whose loved ones are no longer online, what activity has the dementia taken from them that they said they miss the most?   I don't mean to be rude but I am really interested in hearing the reply from the dementia patient side, not what it is the caretaker misses the most that their loved one used to do but what does the patient his or herself miss the most as I strongly suspect that they are not one in the same in many instances.

Friday, August 5, 2011

Blogs that inspire

Yesterday, I wrote about the using the web as a form of virtual hobbies that require no physical possessions.     Another thing I use it for is inspiration.   I love to read blogs by others whose life is not ideal but whose approach to life (consciously or subconsciously) is

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

I am a DNR  because having already spent 2 1/2 years in a nursing home, I do not want to go through that again and certainly do not want to end my life in one.   Thus if something comes along that will end my life, I don't want anyone bringing me back so that I have to go through the end stages of dementia.      However, while I am am alive, I want my focus to be on my quality of life.

As Silverfox so perfectly put it, "  I remember what I remember. "   I am not going to beat myself up over what the disease has taken from me but will instead be grateful for what it has not (yet) taken.    As the Cancer Curmudgeon indicated in " Can your blog save your life? ," blogging can be a very healthy outlet for one with a terminal diagnosis.

I love to read inspiring blogs by others who instead of seeing themselves as a victim of their diseases acknowledge that while they cannot always control what happens to them, they can control how they respond  and strive to live the best life they can.    

Do you know of blogs like that?   Ones that personally inspire you?   Would you share them with me?    Thank you.

Thursday, August 4, 2011

Internet Benefits for a Dementia Patient

After giving me a Pick's Disease diagnosis, my first neurologist basically wrote me off.   He held up no hope that I would do anything other than deteriorate from that point on and did not mention that there were medications like Exelon that could help me regain some of what I had lost.      Long story short, I spent 2 1/2 years in a nursing home until a doctor there said "lets try some things and see if we can improve your quality of life."     Thanks to Exelon, I was able to leave the nursing home.

I got rid of  98% of my belongings prior to admission in the nursing home.  Since leaving the nursing home in 2006, my home has been a rented bedroom in a few different places - i.e, not a lot of storage space.
Thus for someone like me, who has had to reduce possessions, has very little room to own a lot of extra things, very little money for them anyway (my roommate/caretaker has fibromyalgia and has not been able to work for several years so household finances are tight), but who still has interest in both old hobbies and learning about new ones, the internet is a lifesaver.

For example, I gave away my collection of old postcards and cake decorating supplies plus almost all of my clowning materials including my magic, face painting, puppetry supplies,  etc. but I still can vicariously enjoy my interests on web sites such as  The Best Hearts are Crunchy  (old postcards) and Larry Crews (magic) and vicariously travel along with others  via blogs like Zellerbok even though I am primarily homebound now in real life.

I very strongly credit the internet for helping me keep my cognitive reserve strong as it allows me to continue to participate to some degree in things that can no longer be a part of my "real life."

I would love to learn if you are living with dementia yourself or have a loved one who is, how does the internet improve your quality of life (for the patient) or that of your loved one?

Wednesday, August 3, 2011

Planner works only if

My daily planners helps me so much but it works only if I remember to write things down on it.   I don't need to write down my usual daily activities as I do a pretty good job at my normal daily routine but if I don't write down anything that is not a daily activity, there is a very good chance that all thoughts of it will drift away from me and float off through a hole in the ozone.

So where can I buy a daily planner that will remind me of what I need to write in it so that I don't forget?   (Given that my roommate/caretaker has memory problems that are as signficant as mine because of her fibromyalgia, this is a serious issue as it means medical things like tests, etc. can slip through the cracks.)

I have written in other posts on here about some of my word issues (such as often typing homonymns) but lately something new is occurring.   For example, yesterday I said that I was having "a fit of snerzes," instead of a sneezing fit.    Both odd wording and non word in one sentence.    It is not the first time lately that I have realized that I used a non word.    No idea why my brain has decided it is time to start creating its own language but I guess I'll go along for the ride. 

It does keep life interesting when you never know what will come out of your mouth (or your pen or your keyboard).

Tuesday, August 2, 2011

Serendipity and Synchronicity

Serendipity and Synchronicity - these are two of my favorite words and something I put on the plus side of life with dementia.  Yes, you read me right, I definitely believe there are pluses to life with dementia.   That does not mean that I would not have preferred to have these pluses some other way.   You will never hear me say that dementia is something one should want to have.     However, if one does have it, then I think it is important to not get caught up in a "oh woe is me" mindset.

I used to be super-achiever woman.   Back in my pre-dementia days it was not uncommon for me to hear things like "you do more in one day, then I do in three days."      Now I accomplish less in three days than many folks do in one day.    And that's ok.     Now my focus is on quality and not quantity in all parts of my life.

That is where serendipity and synchronicity come into play.   Now that my life is much more laid back, I often stumble upon things that I would have missed before in my rush to fit as much as possible into every minute of every day.

Yes, things like losing my math skills, having to depend on someone else anytime I need to be taken somewhere, etc. are frustrating and yet, I have to say that in some ways I am enjoying life now more than I ever did both because I no longer feel so driven (if I get through the 3 or 4 things on my "to do" list each day (versus the 40 to 50 things I used to have on it), I am content now) and because knowing that as time progresses I will continue to lose more of my independence - thus making everything I can do now (feed myself, dress myself, walk, talk, even take an eyelash out of my eye) far more precious to me than it was before my diagnosis when I took such things so much for granted. 

Monday, August 1, 2011

Balancing how much I can do in one day

Not going to write much today as I had to balance checking account and do some work figuring out where we are on household finances for the month.

My roommate/caretaker and I divide household responsibilities.   She is not in very good shape herself, but she can drive and I cannot so she takes responsibility for going out to get the groceries and driving me someplace when it is important that I be present myself (mainly just the doctor's office and medical tests).     She also takes care of me while I am recovering after a fall.  (My blood pressure drops, causing me to pass out and fall several times a year on average.)

My responsibilities are to manage our finances and pay the bills (yes, I have trouble with math but I can still balance my checking account by using a calculator to do the math and then making sure it balances back to the bank figure) and do things like the dishes and take out the garbage.

Things like paying the checkbook and bills seem to use the same part of my brain that doing things like writing blog entries does so I'm not up for writing much else today.