If there was one thing you could say to help people better understand Alzheimer’s, what would it be? Take a read and Comment on the blog to Show your support!
I have had so many questions surrounding the Alzheimer’s that I thought I will try and put it down on paper.
Just months before my 41st birthday I decided to go and see my GP, Dr. Du Toit as I am getting worried about having Alzheimer’s.
Let me backtrack a bit here. My father died at the age of 45 of Alzheimer’s. He had a very aggressive strand and it went very quickly. At this time I did a lot of research into understanding Alzheimer’s to be better prepared for him as well as knowing what it all entails, including that it is hereditary.
So when I started noticing the symptoms I had to go and see my doctor about it. I also know that the sooner you can detect it the better you can deal with it or the more chances of a long life you have. So after a few months of struggling with the idea, I eventually told Dr. Du Toit my concerns.
Read more: How to Recognize Dementia
Now you must understand it is not a simple thing like I forgot where I put my keys. It is so much more than that.
It is how it affects you personally and how your circumstances change. I used to run a very big company with a lot on my plate, from dealing with quotes and orders with my own clients to helping other sales staff with their orders, also placing orders with suppliers, invoicing and some booking functions, wages, and salaries. Running a manufacturing factory with 50+ staff, ordering the stock from suppliers and paying the accounts, bills, suppliers and many more.
I have since left that company and do the most boring mundane job as a secretary for a small advertising agency. So I know that the symptoms I am experiencing are not due to stress.
Read more: The Different Levels of Alzheimer’s
I started battling at work with remembering things that I just worked on. For example the company name or client’s name, the numbers especially I found very hard. I would look on the screen at a small number, maybe 4 digits, I have to write this number on a different screen and by then I forgot the number completely or mix up the numbers. Then words became harder of certain items. I am fully bilingual in Afrikaans and English so please understand how frustrating it is when I can’t remember the name of a specific object. I literally feel it swimming around in my head but it just doesn’t want to come out of my mouth.
Read more: Alzheimer’s Took My Diamond
The second thing I noticed is that I started feeling depressed, now again please understand that you should know me as a person before this makes sense. I am the most positive, happy-go-lucky, person you might ever meet. I never let anything get me down. I always see the positive in any situation but recently, I don’t feel like smiling, I don’t feel like talking to people and I often catch myself with tears running out of my eyes for no reason.
I don’t feel like to have guests, and I am very happy to just sit on the couch and watch TV every weekend. Or more importantly, I would love to just go away to a scheduled hut in the middle of a forest all by myself. That coming from a person that used to party every weekend and loved having people over.
So understand that I notice it even if you don’t.
Read more: Alzheimer’s: A Caregiver’s Story
My husband and children say that I am losing my temper and being unreasonable. I am not saying I am a saint and never get cross, but it is very bad. I will snap at them without provocation. I don’t realize I am doing it. I think out of all the symptoms that Alzheimer’s have; this is the scariest for me. I don’t mind losing my memories or even my marbles, but I don’t want to lose or hurt the people around me.
These are some of the other Alzheimer symptoms I am currently experiencing and it feels like it is getting worse by the day:
- Having greater difficulty performing tasks in social or work settings
- Forgetting material that one has just read
- Losing or misplacing a valuable object
- Feeling moody or withdrawn, especially in socially or mentally challenging situations
- Confusion about where I am or what day it is
- Changes in sleep patterns, such as sleeping during the day and becoming restless at night
- Personality and behavioral changes
Read more: Alzheimer’s: The Talk
After experiencing the aforementioned symptoms, as I said, I went to see my GP. He did say that I am very young, but it is scary that my father died so young of Alzheimer’s, as Alzheimer’s is hereditary. The Dr. Then did a memory test and said there is a reason for concern. So he sent me to the pathologist for all kinds of blood tests as there is no definitive test for Alzheimer’s, it basically works through a process of elimination. So they did a test on thyroid, glucose, sugar levels, heart, kidneys, hormones, basically any and everything that could affect your brain, memory loss or mood changes.
Read more: Alzheimer’s: You Are Too Young to Forget
These test results and Dr’s original diagnosis was sent off to the hospital for more detailed tests. This included a very long memory test, MRI Pets can and many more. I also saw a psychologist and was treated for depression.
The doctor prescribed some horrible drug that should help with the effects of Alzheimer’s and should be able to lengthen my lifespan. Now you need to understand that the average lifespan of someone with Alzheimer’s is between 3-7 years. So if we are talking about lengthening my lifespan we can hope for up to ten years. So I still can’t make any long-term plans! Also, keep in mind that there are different strands of Alzheimer’s, but you are most likely to inherit the same strand as your family member. Pretty much like if your mother had breast cancer the chances are that you might get breast cancer not skin cancer.
My father had a very aggressive strand of Alzheimer’s and he died 36 months after diagnosis, Not saying that this is going to happen to me.
There are different circumstances and many factors that need to be taken into account.
Now I will have to go for regular brain scans at the hospital so they can determine the rate at which my brain is dying and then they will give me a more accurate expiry date.
This week has been especially bad for me at work. I battle to remember things, I have developed myself a very good system and I keep a good record of everything on an excel spreadsheet but don’t ask me offhand where the orders are or what they are busy with.
The biggest problem comes in with the carrying over of information. I look up a price on one sheet to fill it in the quote in the other sheet, between switching over I have forgotten the price filled it incorrectly and I am convinced I have it right. I mean I quoted a guy R1200 for a table that actually cost R2800. Not even closely related numbers. What if he ordered 30 tables at that price? Nevermind that I have to double check every price and color the sizes get me most of all. I keep on swapping the dimensions around so you might get a very short long cupboard instead of a tall narrow cupboard. This is so frustrating and scary. I don’t know how long my boss will be able to handle me and my mistakes like this. I am really trying my best here. It feels like someone took my brain out of my head and replaced it with a stupid person’s brain. I cannot afford to lose my job as we need my salary to survive as a family.
And I thought that is what the medication was for? To help me with slowing down the Alzheimer’s and helping me.
Read more: Happy Times with Alzheimer’s
Well, so far it just gives me nausea, constant headaches, and mood swings. I also get hot flushes from time to time and the next minute I am ice cold. There are so many different side effects listed on the medication insert that I suppose I must be grateful I don’t have them all. But I must say the nausea is killing me! I am constantly nauseated, which in turn makes me lose my appetite. And if you think that this is good for weight loss, Don’t think so fast! the only thing I find works for nausea and I am living on at the moment are biscuits like Marie biscuits, so not losing weight!
Most nights I will fall asleep at between 2:00 and 3:00 am. I spent most of the night crying when everyone is sleeping. I cry because I am tired, I cry because I feel like I have done something wrong to deserve this. I feel so lonely but never alone. I would love to spend more time alone and do absolutely nothing but we just always have something to do at home or for work or with the kids. On the other hand, I am thankful that I don’t have to go through this alone, I am so grateful to have Duncan as my rock, My shoulder I can cry on when the day is tough. My kids are helping where they can and I suppose I will ‘abuse’ this lots more in the future but for now, I am trying to put a straight face and be brave for them as much as possible.
Read more: What Alzheimer’s Really Looks Like
It’s been a long time since I have written what I am going through. It is now the 17th of October 2017. I can’t believe it has been a year since I have started going to the hospital for tests. I have since my last writing been booked into Tygerberg Hospital for 3 weeks where they did tests, occupational therapy and monitored my sleep.
I have had days when I just can’t get out of bed. I can’t physically face the day of dealing with the difficulty of getting through the day. I can’t find the energy to get up, shower and get dressed. This has upset Duncan a lot and puts a strain on our marriage as he believes I must just ‘Get over it!’ I have also been put on various kinds of anti-depressants. This seems to have helped in the beginning. I have been crying a lot less and I do go to visit friends or have people over. I even put on make-up some days!! Yeah for me!! But mostly I hate being social as I find it so hard and exhausting to talk. I lose track of conversations and really battle to pretend everything is fine. For the last month I have stopped taking my anti-depressants (mostly because I forgot) but after I realized I forgot to take them I decided to stop!
I have not cried and I think I am doing very well in pretending that I am normal. I go out when Duncan wants to, I spend time with my kids when they need me, I watch TV (and pretend to follow the story) I have even started reading a book again. Don’t ask me the name or what it’s about… I am not really following.
Yesterday I went to see Dr. Joans and Dr. Riaan again. She was very understanding but upset for me for being off the anti-depressants. She says that maybe the first ones weren’t right for me. It is supposed to make me feel good and enjoy things, not just get me through the day. So she prescribed a new anti-depressant. I must still go fetch them at the pharmacy.
Dr. Riaan did a new screening test and he says he is very worried about the rapid decline in memory and concentration. It was such a difficult test. I find words so hard. He shows me pictures of items and I have to name it. I couldn’t remember binoculars, I called them ‘far lookers’ I had a good laugh! But I wish you can deal with how frustrating this is. One part of the test I had to draw a clock with the hands at a certain time, I completely messed that up! The clock face and numbers I couldn’t get right, I knew it looked wrong but couldn’t fix it. I couldn’t remember how the numbers work around the clock. I burst out in tears for the first time in a long time. I tried again this morning. Convinced I got it right. I took the paper into the factory to compare it with the clock on the wall… and I had it wrong again! Why is something so small and so stupid and easy is so hard for me??
Dr. Riaan now wants to medically board me. I really still like working (although it’s very hard) but I like feeling like I have a purpose. I do believe that I am still helping at Flenter Hout and still serving a purpose. So I asked if I can maybe then work half a day.
Dr. Olivier said that the hospital will contact me for further testing and they will redo the extensive memory tests that they have done last year as well as redo an MRI and PET scan to see any change, They can then compare it with last year and see how much has changed, from there we can all make a decision together.
I think I have the most understanding and supportive boss. He doesn’t fight with me (too much) when I forget things or make mistakes. He allows me the time off needed for testing and doctor appointments, etc. I think I am much harder on myself than what he is. Some days I cannot work on the computer at all and find myself staring at the screen or spreadsheets not knowing what to do with it. Sometimes it takes me three days to do job cards for a customer order as it is just too hard and difficult to get all the numbers and colors right. Most of all I am so scared to make mistakes that will affect money. The last thing I want to do is to affect the business negatively, this has happened where I have changed a measurement on a job card and the order was then wrong for the customer.
This caused Braam to drive up and down to get it fixed, and the customer threw a tantrum and broke things, (that we had to fix again) and the customer then refused to pay. After a lengthy e-mail, we did get the money from him, but there were so many extra costs. I know it is my entire fault as I have changed the measurement, but most of all what scares me as that I cannot remember why I have changed it all. I can try and compare it to reading a book…when you are not sure where this character fits in you can page back and look it up… well, that page has been torn out of the book for me! That memory is just completely gone. I have no idea why I have changed it!! So every day I am in constant fear that it will happen again. I double and triple check every transaction, every order, and every number. The fear of screwing up is killing me!!
Read more: Open Discussion on Dementia
I also find it very hard to talk to a customer on the phone because Murphy’s Law at that exact moment I will forget a word and just sound stupid!! I prefer to send emails as I have more time and can get the missing word later. So I have developed systems and ways to try and cope better so no one will know how much I am struggling.
I have gone to work a few times with my shoes not tied… as I cannot remember the steps in tying a shoelace. Or I will forget to put on underwear (yup…something I have been doing for 40 years and now it is not automatic anymore but takes thinking and planning, etc.)
I used to enjoy cooking so much… now it is so tiring. I can’t remember if I put salt in or not, I forget to put the stove plate on (or off) and don’t even start on baking! I cried a few weeks ago because I left out the baking powder. It’s not the fact that the cupcakes are now these tiny little ‘doodgooi’ instead of beautiful big fluffy cupcakes but the fact that I cannot follow a simple recipe that frustrated me more than anything!!
This is most of all that causes me to be exhausted all the time! I feel like I constantly have to think so hard to do the simplest tasks and ordinary things. I feel like I am fighting a war in my head with myself. I am constantly fighting to get back what I have lost. I am fighting to hold on to some part of who I once was and what I was capable of!!
Every day is dictated by my illness. Some days I feel fine and function like a normal person but other days the Alzheimer’s takes control…
But even the bad days are very different; the one constant can only be described as like a blackness in my mind. Like my mind and my reality is running a few seconds behind what is really happening. That is the best way to describe the confusion. I think that is what makes me feel uncomfortable and unable to follow conversations.
My swallow has also gone broken. I really battle to swallow food or even drinks and my pills are near impossible. It is not that I forgot how it just seems to not be working. That is really frightening as I am constantly afraid of choking.
I also sleep a lot especially on bad days; sometimes the sleep is deliberate so I am not aware of the suffering.
I seem to get anxiety attacks more frequently, like at the supermarkets and when there is a lot of info to take in, my vision becomes terrible it is like I am trying to focus on everything at once. I feel like I’m going to pass out if I don’t get out of there. Almost like sensory overload.
Some days my balance can be shocking it’s like a feeling of being drunk. There are days when I have conversations with people I know very well but I have no idea who I am talking to, but I do know that I am supposed to know them so I just try to wing it so to speak.
There are also days when I look at money and don’t understand it, I know what it is but still don’t understand it, kind of hard to explain.
I still have constant headaches from trying to think so hard.
There are also occasions when I go somewhere and it is like a fog that falls over the mind and the eyes and I have no idea where I am, how I got there, why I am there or if I came with anyone.
There are also days when I am unable to make food as I have no idea what to do.
Aggression is a different story altogether. The only way I can describe the aggression it is like there are 2 different people inside me both fighting to control my personality, one guy is a nice guy and the other is a right horrible angry bastard. Sometimes the nice guy wins and then sometimes the other wins.
Read more: Emotional Support for Dementia Patients
Most bad days I feel lethargic and unable to do much like the bunnies on the Duracell advert.
Some days the confusion can be so bad that it is like I enter waking dreams, it is really bad when I am trying to sleep.
Hallucinations have also become evident. I know I am hallucinating when I see things, but they are not real. Sometimes it is just a shadow moving past, sometimes it is people I see that is not there. This is all I can manage for now as the darkness is coming back in my mind.
I don’t know if I will be able to maintain this blog for much longer or keep on updating, but I hope it helped even one person, then I have achieved my goal.
I am just so damn tired of waiting right now… Waiting to get better, Waiting to get worse. Waiting to get fired. Waiting to live, waiting to die!! I feel like I am in Limbo!! Just WAITING!!
But all in all, I am doing great!! I am doing very well in pretending that everything is normal and I am sure that most days I almost pass as a normal person
Please know that I am not sharing this with you to look for attention, nor do I need your sympathy –but what I do need is your understanding and patience with me. It is a tiring time and we will need your love and support.
If there was one thing you could say to help people better understand Alzheimer’s, what would it be? Take a read and Comment on the blog to Show your support!