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Doing Everything I Can To Help Myself
Posted: Saturday, October 24, 2015 9:48 AM
Joined: 7/24/2015
Posts: 3020

My name is [Sun], I am 47, and I was recently diagnosed with Alz/dementia stage 5. I also have been caring for my mom for the last 10 years, and now also care for my daughter, granddaughter, and the house and dog. Although I have lost many skills, and much of my function, I continue to function very well in tasks that matter a great deal to this picture...which many cannot seem to understand (for reasons I do not understand).

I am also type-A (probably excessively so), and highly motivated to do all I can to retain my function and get my life back. This likely plays into why I approach my diagnosis the way in which I do. I have also had a life where I have needed to overcome, and did overcome, many things that others told me that I would have to just live with. Like when I was losing my ability to walk, and my left leg just dragged and I had a horrible scissor gait, and although I used (gratefully) a walker, I really needed a wheelchair. But I couldn't accept that for myself. It might be that I lose my ability to walk...but it wouldn't be because I didn't try everything in my power to prevent that. Now, many years later...after years of physical therapy and self work (dry brushed my leg, therapeutic massages, acupuncture, you name it), I walk well enough that an outsider would not have any clue how far I have come. So I am no stranger to hard work and I am no stranger to finding ways when others think it is impossible. But always I am surprised by the negativity some people have when you try to do something they think you can not or should not be able to do.

Many are so willing to sell us short, and no where is that more true than after you get diagnosed with dementia. Doctors suddenly want to hear from your caregivers (even if you don't have one), rather than you. You are suddenly not seen as being human, or as in control of your life as you were just a minute ago. But I am still me, and I am still very much the driver of my own life. And I still want to do all I can to save my brain. My brain will likely ultimately fail me...but it will not fail me for lack of my efforts to save it.

So I am stage 5 now, and I have been struggling against the slow and steady, progressive decline for the last 6 years. Back then I did not know what it was, nor was it on any of my doctors or medical providers radar. All I knew was that I was struggling with certain tasks.

With each successive brain loss (as I think of it), it would start with certain things becoming harder and harder to do. Like I had to struggle to bring it into my mind's focus, but still could with effort. Then it would require more and more effort, but was still doable. I knew what I was losing, because it was what I was struggling with. At some point I would need help with the tasks. And despite having workers that are there to help me, despite my being very articulate about what I needed, no one seemed to either understand how to help or be willing to pick up the ball. So eventually I would create some sort of work-around to help me complete the task. Whether it was a sign, or a set of instructions. The challenge for me, is that it takes my brain a very long while to sort out a work-a-round. The work-a-rounds support me like a paid worker would, so in essence I have become my own caregiver.

I eat well, mostly salmon, fruit, nut butters, avocados...and my one indulgent pleasure, green tea. I don't eat much, I don't digest much. I can no longer figure out how to sort out my digestive issues...and have forgiven myself for that, as well as forgiven my doctors for not knowing either. I take probiotics and digestive enzymes, but they do not help much. I take a taurine supplement once a week, because I no longer make it well. I have made peace with my diet...and with my inability to understand what else to do about it.

I exercise regularly. I do a daily routine that is a mixture of yoga poses and physical therapy exercises and strengthening exercises. As well, I walk the dog an average of 4x a week (now that I have a diagnosis of Myasthenia Gravis and a medication that really helps improve my strength and ability to walk). When I can, I go to the Courage Center to continue my work in their gym and heated pool.

I meditate daily, often more than once a day. As well as do some semi-Buddhist practices, like Thich Nhat Hanh's "smile" practice, that I do in the morning to help me start my day in the right frame of mind. Or being "mindful" of various tasks, like walking or breathing.

I socialize as much as I can. I found two great organizations that offer weekly online video support groups by and for people with dementia that has really helped me understand that what I am experiencing is normal, and given me people to care about and follow their stories and progression. As well, I do a bi-weekly holistic support group with people with chronic illness, which is the only place that I am considered still me even after diagnosis and has been really great for me.

I am also starting to participate in advocacy work which is something I have done throughout my life, and is so needed...and there is just something about being part of the cog in something that is needed that "pulls" you forward in a way that I no longer have words for. As I started this work, I noticed that the other people doing it were achieving great benefits cognitively from this work, and I am excited to see if I experience the same. What a nice side-effect, in my opinion.

I see my doctors regularly, and I have a small team of people who help me meet my needs. They, of course, always push for me to go into assisted living...and while some days I think that would be very nice, I am not ready to throw in the towel on my life just yet, and (thankfully) they support me in staying in my home. In some ways, I consider myself (gratefully) well supported, in other ways I feel very much on my own and that they look to me to guide them.

I have signs, notebooks, and charts that get me through my most important tasks...and I find a comfort in my words, and my loving support of myself that carry me through my days.

I still drive (safely and without incident), I still pay the bills and manage the house, I still manage my meds (with great struggle), I still grocery shop, and I am still able to care for my mom...which others tell me is amazing. But, to me, these are the most vital tasks. All other tasks, I am largely unable to do. For some of them, like daily cares, I have supports for the most vital of the tasks, and just don't do the rest. I can still cook, but other than salmon, I don't tend to cook.

I wish everyone well.