Saturday, June 23, 2012

Catch the Vision

When I was a kid, my mom bought me a bookmark with my name on it. It read: "Cassandra: helper of mankind." I remember her beaming and telling me how perfectly my name definition fit me. I was always my mom's helper. When she had an important job that needed to get done, she knew that she could ask me and I'd be there to help her out. Whether it was grocery shopping with her, baking all the Christmas goodies, running errands (once I had my license) knew she could count on me. I remember her always telling me that I was an "altruistic" person. At the time, I had no idea what that big word meant.
Now that I am older, and somewhat wiser, I know what it means to have altruism. I don't know if I truly fit that description, but I do know that I care deeply about other people. My dad has always been an amazing example of helping and serving others; I try to model myself after him. I love the feeling I have when I help another person. When I see people troubled with different issues, I like to try and be the friend that can help them solve their problems.

Since my mom's diagnosis, I've been racking my brain trying to figure out how I can help to make this situation better. Nothing I can do will make this disease go away; in that sense I am completely helpless. Yet there's been this nagging feeling that there is something for me to do, some role that I can and must play in all of this. There will come a time when she will need round-the-clock care. I want to be there to help with that. Realistically, I have my own home and 5 children to take care of. How can I take on the role of caring for my mom without neglecting my family? I worry about the financial toll all of this will take on my dad. Not that he's a pauper...but in-home care is vey costly. What can a small person like me do to help in such a giant situation?

And then it came to me. I can blog.

Initially, I started this blog as a means of therapy for myself. I then opened up by sharing it with those family members and friends who are closest to me, to keep them up-to-date on mom's condition. Recently, I decided it was time to share it with anyone who was interested in reading; friends from church who have interacted with mom (and wondered about her strange behavior and memory loss), others who are dealing with the same heartache.

More recently, I have expanded my thinking and seen a bigger picture. Something much bigger than myself, much bigger than just posting an update on my mom every few weeks . This vision started with a mere suggestion of a friend (my sister's friend, to be exact). After reading my blog, she told my sister that I am "a brilliant writer" and suggested to her that people are able to get paid for their blogging.

That's when the wheels in my head started turning. I don't know that I'm a "brilliant" writer. But what if I could transform my blog into something more? What if I could make this little blog of mine into a place where people can turn for answers? A place where people can read and learn about the journey of dementia through my experiences. A place where they can turn for support and additional resources to aid them in their own journey. And all the while, as I am able to (hopefully) help others in their journey, I can earn a little money to help fund the cost of my mom's care.

I've seen the vision. I'm excited. I'm nervous. I'm eager. I'm afraid of failure. But I have the chance to do something.

Over the next few weeks, my blog will be under construction as I try to bring this vision to life. Please be patient with me as I work out all the kinks. When the time comes, and I'm ready to move forward with this next step in our journey, I would love it if you all moved forward with me. Follow my blog. Tell your friends, tell your family. Tell others who are struggling with this same hardship. I need a large following to begin the next step of this process. Leave your feedback. I want to hear from you.

There comes a time, in each of our lives, where things become hard. Sometimes the challenges we face become unbearable. We can choose to dwell on the negative, or we can try to make a positive out of the trials we face. Losing my mom is hard. In fact, it is the biggest challenge I've had to face. I feel determined to do something positive. For my mom, I will try to live up to my name.

Monday, June 18, 2012

What the Future Holds

Raising a toddler is a demanding job. Having three small children (my youngest being 14 months old) often leaves me drained, physically and emotionally. Having children means putting their needs ahead of your own, but having a toddler means constant care and attention. From the minute my toddler wakes up in the morning, until the time he goes to bed at night, my day is centered around his routine and his needs. He doesn't yet talk, so he communicates to me with a mixture of babble, cries, whines, laughs and giggles, tantrums, and so on. He can't do much for himself; I spend my days dressing him, changing his diapers, bathing, preparing his food, wiping up messes, entertaining him and keeping him safe. His new favorite thing to do it is climb. I have to keep a watchful eye on him to make sure that he doesn't fall off the kitchen table or the playground outside. He's learning to walk but isn't as steady on his feet, so he gets a lot of bumps and bruises when he's navigating himself to where he wants to go.

My house has been altered for my toddler. Childlocks secure every cupboard because without them he is pulling everything out and breaking dishes on the floor. We have to keep the doors closed-especially the bathroom door as he has a fascination with the toilet. Sharp and dangerous objects must be kept out of his reach. We have to be careful of the things that are left out in his view because anything small will make it into his mouth if he finds it. Sometimes, things go missing (the TV remote being the most popular) and we play a big guessing game trying to figure out what he has done with it. If we try to ask him what he did with the missing object, he might giggle, he might babble or just give us blank looks because he doesn't know what the heck we're talking about.

When it comes to outings, they revolve around his nap schedule. He takes a morning nap and a later afternoon nap. Grocery shopping, errands, trips to the library, etc are worked around his sleeping schedule. Staying out late isn't an option because he has an early bedtime. When he doesn't get his sleep, he is cranky, whiney and has many meltdowns. He sleeps in a crib; if he weren't confined he would wake up and wander around the house and cause all kinds of trouble! Of course if my husband and I want a night out, we must hire a babysitter to take care of him while we are gone. Toddlers can't be left alone.

Last week at support group, a book was recommended to me to read on behaviors of people with dementia. As I was researching that book (on Amazon), I stumbled upon another book called "Dementia: The Journey Ahead". It is a guide for caregivers of dementia patients, written by a woman who cared for her husband (who had Semantic Dementia). I ordered both books, opting for the 2 day shipping. I was anxious to read. The book arrived Friday afternoon and I had finished reading it by Saturday night. The conclusion I drew after reading the book is that my mom is becoming an adult sized toddler.

It was hard to read about what is to come; necessary, but hard. I have had so many questions about what this disease will look like as it progresses. As it is now, my mom has very childlike behaviors. As the disease progresses, it will become more and more childlike. It is almost as if she is growing backwards and will eventually become like an infant again. The only difference is that unlike a child (or a baby), her body is forgetting how to function, rather than learning.

Susan, the author of the book, prepared caregivers for what is to come by sharing experiences of her husband as well as by giving recommendations of where to turn for help on each given situation. In a nutshell, here are some major changes that we can expect in the future with mom:

We can expect her to lose memory of everyone around her. I was holding onto the hope that she'd remember those who were closest to her. And it's still a possibility. But we have to prepare for the worst.

We can expect that mom may become incontinent. This means that she will be in diapers. Again, I've heard that most dementia patients become this way but I was hoping there was a chance to skip that. It looks very unlikely that we will escape the inevitable.

We can expect to childproof the house. Many dementia patients put small things in their mouths and eat whatever is in sight. It's hard to believe that this could happen to my dear mom, but it's something I hear over and over from other caregivers.

Dementia patients become wanderers. We will have to keep tabs on her and make sure that doors are secured so she can't wander outside.

We can expect temper tantrums, whining and crying and even take some beatings. Imagine a toddler tantrum but in an adult body. This is typical in dementia.

Eventually, but not necessarily, she could become bed ridden. Each case is individual, so there's no telling one way or the other. But many become this way and end up in hospital beds. They sleep for many hours of the day, like newborn babies.

Like I said, each person is different and no two cases are exact. However, this is the "norm" in dementia. From my reading, each case of dementia starts out different (depending on the form of dementia they have), but in the end most cases look alike. Bottom line: mom is going to need round the clock care in the near future.

At the end of the book, there was a rating scale to determine which phase your loved one is in. There were several categories of behaviors and cognitive abilities to rate and the ratings were as follows:

0: none
.5: questionable
1: mild
2: moderate
3: severe

In most categories, she scored a 1 or 2 (mild or moderate) which I interpret to mean that she fits the moderate category (or is at least transitioning into it). Now is the time to prepare for the next phase: severe.

I don't know how we are going to get through this. I know we will, but I don't know how. Susan was fortunate enough to be able to quit her job to care for her husband full-time. And even then she had another part-time caregiver come in to assist her. There are facilities that house people (my dad would never send family to a home), there are daycare and in-home care options; all are very expensive. With my dad being self-employed, he doesn't have a steady income. It isn't feasible for him to quit work to take care of her full-time, as the bills still need to be paid. They are too young for retirement or Medi-care. Our best option is waiting to see what Social Security will offer her to financially relieve them of some of this burden. The current wait time on their case is 12-18 months.

My dad would say this isn't for me to stress about. Yet the past few nights I have laid awake in bed feeling stressed about the future. I am stressed for my dad and what he is going through, and especially for what is to come. He can't do this alone. I have 5 kids ranging from 1 year to 16 years old; it is impossible for me to care for my mom everyday and manage my family and household at the same time. But I do know that I need to do something to help my dad (and my mom) get through this. I want to be there to help. Once again, I find myself trying to figure out my role in this difficult journey.

Wednesday, June 13, 2012

Finding Support

A couple of months ago, my best friend (of 23 years) and I reconnected on the phone. Although we had been keeping in touch through email and facebook, it had been quite a while since we had talked on the phone. We arranged a time beforehand to make sure that we wouldn't have interruptions and could "catch up" with one another. We both anticipated the call and thought about everything we would fill each other in on, which was quite a bit! It was a bit overwhelming to think of where to begin and cram in all the bits of informaion we wanted to share in a limited space of time. In a period of four hours, we tried to catch one another up to speed on the happenings of our current lives. Four hours sounds like a long time to talk on the phone, but when it was time to say good-bye, we both felt like we still had so much more to say! I suppose that's what happens when you don't communicate for a long time. Before we hung up, we promised each other to have phone calls weekly; that way we are better able to keep up on everything we want to share with one another.

It's been almost two months since I've last blogged. As with the anticipated phone call with my friend, I feel overwhelmed on where to start. So many thoughts and events have transpired in the past couple of months. I could sit here for hours and recount everything that has taken place: her trip to Montana to visit her brother, our family camping trip in the mountains, the updates on her driving and the progression of her disease. Mother's Day. Her birthday. But where do I begin? How can I possibly convey all the happenings and all of the emotions that have taken place over the course of the past couple of months in just one simple entry?

Rather than try and eat a whole elephant, I will simply have to snack on small pieces. Perhaps over time I can go back and try to finish the whole thing, but for now I will just take small bites and share what is in the forefront of my mind.

One of the most significant things that has occured since my last entry is that I have joined a caregivers support group. I found a group that meets a mile down the road, at a facility that houses people with dementia. It meets the 2nd and 4th Mondays of the month. The first meeting I went to (last month) was very intimidating. I tried to get my dad and my sister to go with me; both were unable to attend. I hestitantly walked into the room, butterflies in my stomach, not quite sure what to expect. I knew it was a longshot, but deep down I was hoping to find someone there who had a loved one with the same form of dementia as my mom, someone who could relate to what I was saying and share some of their experiences with me. There is still so much that is unknown, and I suppose I fear the unknown. I want to know what to expect in the future. It has been hard to find much on Semantic Dementia when I research it (every place refers back to the same few links). Meeting someone with Semantic Dementia would be almost a relief for me, to know we're not alone and to prep for what's to come.

Well, it was a long shot. There were three other caregivers who came to the group that morning, along with the director. When I said the words "semantic dementia" I was questioned on exactly what that is. Even the director, whose mother had Alzheimer's and who has been involved in support groups for years (and whose husband is a neuropsychologist), was unfamiliar with the term (once I told her the nickname was "Picks Disease", however, she began to recall what she knew about the disease). I came to the group hoping for some sort of answers; instead, I was educating everyone else on this rare form of dementia.

I will be honest, I felt a little discouraged in that moment. The director's unfamiliarity with it just affirmed to me exactly how uncommon this is. I realized that I had gone there searching for answers on her disease, and answers is not what I would be receiving from this group. But as we talked, what I began to realize was that I had found a group of people who understand the hardship my family is facing. Though the form of dementia is different, there are many similarities in every person who has some form of it. I could relate to the things that they were sharing about their loved one, as they could with me. I felt an empathy from them that I haven't found with other people who I talk with about my mom. They understand exactly what I am feeling: the frustrations, the heartache, the loss. Because they are feeling it too. That morning, I found four other allies who could relate to everything I have am going through. I am not alone; my family is not alone.

Another thing I found with this support group was resources to help us in this process. They were able to give me good advice on obtaining Power of Attorney (and cautioned me to avoid Conservatorship at all costs-which was the route we had been thinking of taking). They told me exactly what my dad needed to do to obtain the Power of Attorney. We talked about daycare options versus homecare options versus assisted living care option. They gave me some additional resources and phone numbers to call for more information on the topic. Although I didn't receive answers on the disease itself, I found solutions to other care questions that I have been thinking about in the back of my mind. Some aren't relevant at the present moment, but I feel a little more sure about the future knowing that I now have a network of experienced people who can point me in the right direction when I need help on a particular situation.

This week, I attended my second support group meeting. This time, both my dad and my sister came with me. Our take-aways are different: my sister and I find it helpful to talk with others who are going through similar struggles. My dad, however, does not see the purpose or feel the need to talk about it with people. He has never been one to "wear his feelings on his sleeve". He grew up in a home where men were men-they don't cry and they don't show emotion. They don't express what they are feeling either. So for him, it is probably uncomfortable to put himself out there and talk about something so deep and personal (in a more emotional setting). While he particpated and vented his frustrations with the disease and with the doctors and all that we've been through over the past few years, he walked away questioning what he had gained from going. He was given the extra push to get the Power of Attorney done "today" (which was a great take-away in and of itself!) and was encouraged to find some thing and some time for himself. I do think there was some positive feedback and helpful advice for him, but I think he figures they are only telling him things that he already knows. I hope that he will give it another chance in the future and see what he can gain from going. I suppose, at the end of the day, we each deal with our grief in different ways.

I am taking each day step-by-step, as I try to figure out my role in all of this. I know that I need to be a support for my dad, as well as my mom. I've come to the mind that I need to find the light in the darkness I face. Nothing will ever make this (mom's disease) a good thing. But I am determined to make some goodness out of the adversity. Whether it is building my patience or learning to serve or love unconditionally, or becoming a support for someone else, there is something that I can learn from all of this. I try each day to focus on what I can learn and how I can grow, rather than focus on what I have lost. My mom spent her life teaching me valuable life lessons on how to be the best person I can possibly be. She always told me that when we are faced with obstacles, we need to learn from them and "rise above it". Sometimes it is hard. There are days where I feel frustrated and where I feel downright depressed. But I can't let her down. Now is the time to learn and rise above the obstacle, and hopefully come out a stronger, better person in the end.