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.

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