A pill a day keeps the doctor away

I received another positive report from my sister-in-law Kathy that when she spent some   time with my Mom a week ago that  it went really well and she also felt that Mom wasn’t showing as many symptoms and she seemed to have less memory loss episodes. Two positive reports in a row from family members….sounds more than positive.

Needless to say, since I have been so busy with work and haven’t actually seen my Mom in three weeks, I was rather excited to spend some time with her yesterday for breakfast and again today for her follow up doctor’s appointment. I was really looking forward to spending time with my Mom and having the same experience of having my “old mom” back.

So yesterday Ray and I went out to breakfast with Mom and Dad. It was a nice quiet time and we got to spend an hour together just laughing and talking. I wish I could say that Mom didn’t show memory loss episodes but she did. Not as many as before but then again not as great of a difference as I was hoping.  *sigh*

But an hour is only an hour and a day is only a day so I waited to see how the next day would go. Mom and Dad picked me up and we headed to the Doctor’s office. I was a bit disappointed that I have asked my parents multiple times if Mom was experiencing any side effects from being on the medication and they told me no but when the doctor asked they said she had been experiencing nausea in the mornings. (Geez! Could they not have just told me that? It isn’t like its an admission of something horrific.)

Anyway, the doctor said that is a common side effect but since it dissipates within a short time of her getting up and getting on with her day the doctor said it was a minor reaction. They had mom on a half dose so they have increased her to the full dose now. We are supposed to watch for an increase in nausea or any other side effects. If she doesn’t exhibit any then she can continue to watch her blood pressure and maintain a carb free, sugar free diet with daily exercise and we will go back in for another check up in January.

But I digress….I mentioned something to my parents when they first picked me up and 20 minutes later my Dad asked me a question about what I had been discussing. When I responded to Dad my Mom was upset because she thought she was hearing the news for the first time even though she had just heard it 20 minutes earlier. This was only 1 of the memory lapses during the time we were together.

I don’t know if Mom was tired both days (that is a stress-er) or if she was nervous being at the doctor’s office or if it was just my luck of the draw to get two of the “new normal” days. Regardless, I am so glad that other family members are experiencing good days – feeling like their prayers are being answered and hopeful for the future.

As for me, well I feel a bit jealous that others get that experience but it doesn’t change my enjoyment of being with my mom. As you can see from the picture on the left. Mom and I were goofing around with my photo booth app on my cell phone while we waited for the doctor. I guess that just goes to show you….it’s far more important to take joy in each moment than to live life regretting what isn’t.

And the survey says…….

Trina & Amy at the Silvas Family Reunion – Sunday, September 2, 2012

So, today was the rescheduled follow-up appointment with the Doctor regarding Mom’s test results. An hour before the appointment I couldn’t decide how I was feeling. I was relieved that the appointment was finally here and I didn’t have to wait for the results any longer but I was also anxious and feeling this nervous twitter in my stomach. After all, the information we were about to be given is life changing….there’s no going back from this point forward, for any of us.

Have I mentioned lately how much I love that my Mom faces everything with a sense of humor? If there weren’t moments of laughter through this process I’m not sure I would be able to handle it. (Thanks Mom for the gift of humor and laughter) A perfect case in point was when the Doctor’s nurse came into the room and did the basic weight and blood pressure check. She took Mom’s blood pressure and as she was putting it in the computer she mentioned that is was a little higher than last time. Mom asked her if it was really higher and the nurse asked, “Do you remember what your last blood pressure reading was?” Without batting an eye my mom said, “uh, no….that’s why I’m here.” We all laughed as the nurse winked at my mom and said, “oh yeah, that’s why you are here to get the results of the CAT scan!” It was just one of many little moments of laughter during the appointment.

Okay…back to the test results…..and the survey says….(insert dramatic drum roll here)

Good News – The CAT scan shows that it is not the mini myocardial infarctions they were testing for. What does that mean? Mom has not been having mini-strokes in the brain causing the memory loss.

Bad News – That means it is definitely Alzheimers.  This is the most common form of dementia.

Good News – Mom’s Alzheimers in classified as mild. This means we caught it in the early stages. This also means the medication the Doctor has put her on will work better.

Good News– Mom starts taking her medication tonight. The Doctor has her on Aricept. Although the Doctor says there haven’t been a lot of reported side effects in most patients, she did warn us that patients have complained of dizziness the first couple of hours after taking it. Because of that the Doctor is having Mom take it right before bed so she will sleep through that. She is supposed to take it every night (without fail) and Dad is on task to make sure she remembers to take it. Another thing about the medication – it will help stabilize her and hopefully prevent further memory loss. It won’t stop it all together but it may help her stay at this mild level for a long period of time. *Side note – to family and friends – if you see or hear of mom complaining about nausea, vomiting, diarrhea, loss of appetite, muscle cramps, tired feeling or sleep problems (insomnia) they could be side effects of the Aricept and please let me know.

Follow Up – so Mom starts on the medication tonight and in 6 weeks on October 19th, we go back to the Doctor’s office to see how she is dealing with the low dose. If she is doing well, she will get an increase to a higher dosage and most likely another check up 6 weeks later to make sure she is doing well on the higher dosage. From there we just return to the Doctor’s office every 6 months for check ups.

How am I doing in all of this? Well, I actually feel really good about this at the moment. I’m so grateful that we are in the mild stages (even though that is so hard to fathom. It feels so much bigger than that.) I’m so grateful we have a Doctor that can laugh with us through this process. I feel like I can breathe a little bit more….there is a direction and we are moving in it. I’m also grateful for the lessons I am learning about myself through this process and I am grateful for the people in my life that I consider a support system – without them – without you, I would be a mess.

 

In the beginning

First off, let me introduce myself, my name is Trina and I am 43 years old. I am happily married, mother of three amazing young men and one sweet step-daughter, Nona to two grandchildren, sister to one older brother and one younger brother (plus spouses), and daughter to two wonderful, loving parents. I decided to start this blog as a place where I can vent, rage, cry, laugh and in general have an outlet to deal with my emotions regarding my mother’s ever increasing memory loss.

Now let me introduce my mother…her name is Amy and she is 67 (sorry to divulge that to the world mom). Quite simply she is my best friend, my sounding board, my anchor in a crazy world and suddenly that anchor is being pulled away bit by slow bit and I find myself adrift in a world of rioting emotions as I face the reality of my mother entering the world of dementia.

Let me start by saying that we are at the beginning of this journey together. My mother is the same amazing woman she has always been with the exception that more and more she can’t remember things. A couple things to note: I come from a large extended family and we are very close knit. So over the course of this blog, I will be introducing many family members, our interactions, their words and most likely my interpretation of how they are processing this journey we all find ourselves on with mom. *Side note – I don’t claim to “know” what is going on personally for everyone else in my family – so again everything disclosed in this blog is my personal observations, thoughts, feelings and perceptions. Second thing to note: I am a deeply spiritual person and some things I may discuss in this blog are going to have a spiritual perspective and some things I say or believe may seem “out there” to other people but, quite frankly I don’t really give a damn. If you don’t like it or believe like I do – don’t read it.

So, since this is the beginning I figure it is best to begin at how this journey got started.

2010 – early summer: My Aunt Sharon (my mom’s older sister) had called me discuss the fact that my mom was starting to forget things, often enough, that is was beginning to concern her. She wanted me to talk to my mom about going to see the doctor and getting checked out.

2010 – late summer: It took my almost two months to work up the courage to actually talk to my mom. I took her out and spent the day with her and toward the end of the day I broached the subject with her. She was in mid-process of changing doctors and I asked her to speak to her new doctor about the occasional memory lapses. She agreed she would.

2010 – early fall: After several times of checking to see if mom had gone to her new doctor appointment only to be told she hadn’t scheduled it yet she finally tells me she went. (Thank God! I think to myself.) “Did you talk to the doctor about your memory?” “No, why would I do that?” (Insert total disappointment here as I realize she has completely forgotten our conversation and that she promised she would talk to the doctor). I remind her and she plays it off as if I have nothing to be concerned about.

2010 – late fall: big family get together for the women in our family takes place and everyone realizes that something is definitely going on with mom. This is the day I call the pressure point. This is the day that everyone in my family from aunts, uncles, cousins, siblings, nieces, nephews and children start talking to me and looking to me to “talk to mom” about this issue. Now, don’t get me wrong…I love and adore my family but that was a huge burden to bear, knowing everyone was looking to me to do something about the situation. Perhaps they weren’t but actually expecting it of me but it sure felt that way.

2011 – early part of the year: We are all just kind of floating in a status quo position and no one is really talking about what is going on with mom but the memory lapses are starting to get a little more noticeable.

2011 – midsummer: My older brother Kevin and his wife Kathy and my husband Ray and I manage to get away from the kids and head over to mom and dad’s place for adult conversation. My plan, bring up mom’s memory issues when I have support there and Kathy who is a nurse and has been asking around to her colleagues about options for healthcare relating to memory loss. Long story short – we basically get told that mom is taking some homeopathic pills that are helping tremendously and that essentially they are grown adults and they can take care of themselves. It was a nice way of telling us to butt out of their business but it was a definite shut down of communication.

2011 – early summer 2012: It seemed for awhile that mom got better and was improving. My theory now is that mom and dad got better at hiding what was going on. Not that I think they were hiding it consciously but I think they were trying to deal with it privately and not concern the rest of the family. Episodes of mom’s memory loss start to come to the forefront again and they are much worse now. In the meantime, all the family is talking among ourselves about mom and how someone needs to talk with Dad but no one is quite willing to face my Dad when is angry.

2012 – July: So…the fourth of July is a big family gathering and as it ended up this year….a terrible day for my mom with her memory. It was apparent to everyone that mom was not remembering things within 15 minutes of them happening. I went home and sobbed. I spoke with my Cousin Kim (Aunt Sharon’s daughter) and she told me that my Aunt was getting ready to say something to Dad, even if it meant he was pissed off at her forever. My cousin also said that she was in the same frame of mind. Something had to be done. Something had to be said. (My internal voice here says, “That means be the responsible daughter and do what needs to be done”). So, of course, I spent almost three weeks crying over the injustice of it all and the absolute fear of talking to my Dad and having him angry at me.  What is my course of action? I went into meditation every night for a week before our next big family get together on July 21st and set the intention of going to talk to my Dad as spirit when I slept. My Dad and I journey when we sleep so I knew it was possible and I chose the “easy way” hoping it would somehow open the door of opportunity to talk to Dad when I got back from my work trip at the end of the month. Instead, an opportunity opened up at the family get together and when spirit told me to go talk to Dad I did. It was the easiest conversation I have had in this entire process so far. (Daddy, some day I will tell you how much that conversation meant to me) The bottom line…we all wanted mom to get help and Dad was on board with us insisting she go to the doctor.

2012 – August: I got back from my work trip, expecting to make a doctor appointment and having to force an angry mom to go only to find out that Dad had talked to Mom and they had set a doctor appointment. I went with them to the doctor appointment. I will say that it was hard to watch mom struggle to answer simple questions from the doctor. It was even harder to hear Dad asking if he had somehow caused this by taking over the major responsibilities of the household once he had retired. So….the doctor talked to us about what was going on. She ordered a series of tests and now we wait for the results. We should know the results on August 28th. In the meantime I have talked to family members and family friends, explained what is going on and where we are in the process. I have spoken with my brothers and we have set up a family meeting a few days after the final results of the tests are in to discuss the future and how we proceed….and, I have been grieving for two weeks over the realities of the journey we all find ourselves suddenly on and what it means to me to know I am slowly going to lose my mother.

My final words for this blog post: I think it can all be summed up in my mother’s words to me as we left the Doctor’s office after the first appointment. She reached her hand out to me and as we clasped hands she smiled at me and asked me if I was ready for this journey with her. I smiled at her and said, “I’m as ready as you are.” Together we walked hand in hand out into the sunshine. I plan to walk hand in hand with both my parents through this emotional roller coaster of a ride called life and this new journey we are on together called dementia. I love you mommy and wherever this road takes us we will go there together.

Amy/Trina, Mother/Daughter, Best friends