Tuesday, May 29, 2012


I may have mentioned before that I have a chronic illness called Rheumatoid Arthritis. I haven't written much about it but I'm going to start writing about it more and more, not only because I feel it really affects my role as Dad's caregiver and that might be something that others are also experiencing, but also because it has really moved itself to the forefront of my life lately. It has really made me start to feel my own mortality, and that's been difficult, especially when placed next to Dad's increasing mortality.

I had a sort of flare up a few months ago, characterized by even more fatigue than I normally feel, some extra pain and stiffness, and some other, minor symptoms. It's been a long time since I had a flare up and I was in denial about it for a while, until my doctor really noticed and put me on a newer medication. Thankfully, the new meds have started to help, very slowly, but I'm still feeling sluggish and a little depressed, which for me, is strange. I'm dealing with the fact that this could get a lot worse in time and I'm struggling.

Having a chronic illness of this type makes being a caregiver, even a part time one like me, more difficult. I'm sure there are many full time caregivers out there who are struggling through their own disease processes to help a loved one with theirs. Everything takes just a little longer, a little more effort, and it may cause some resentment that precious energy and time are being spent on the health and well-being of someone else. I know it has for me. I watch my Father's long slide into old-age and death with pity and sadness;and with the knowledge that once he goes, I'm on the front lines of Life - there will be no one else between me and the same fate.

To all those who are fighting the good fight for your loved ones, while fighting a health fight of your own; you're not alone. Don't forget to take care of your own health first, as hard as that might seem. And don't be ashamed of negative feelings - you're entitled. This is a tough road to walk for anyone, but it was made a little tougher for you.

Tuesday, May 22, 2012

I'll List You!

I just got a comment from a representative of the Mesothelioma Website, asking me to link to them. Now I know there's some scams and such out there so I have to be careful, but if you've got an organization or site you want me to link to, I'm always happy to do it! I want to get info out there, and if you link to me too, that's a win-win!

Friday, May 18, 2012

This is an amazing article I was able to embed-please read!

Helping Out.

I'm excited - in two weeks I may be doing an online training with the Lewy Body Dementia Organization in order to become one of their phone support people. I've never felt the need to call their help line, but they do have one in case caregivers or family members get overwhelmed while dealing with this terrible disease, or just need some more information. I think it's a great service and I'm excited to potentially be a part of it!

Lord knows caregivers need every little bit of support we can give them, including a shoulder to cry on (through the phone) or the knowledge that it is possible to get through this. I don't have as much direct contact with my Dad as some of these brave people, but I know its a tough road to walk. The organization's website is listed on my blog if you would like some more information or a number to call.

Wednesday, May 16, 2012

A New Hope?

Well, I guess we'll see if this actually helps... personally I'm not sure if the government is capable of doing anything useful to help with this terrible epidemic.

National Plan to Fight Dementia Released

Yesterday Health and Human Services Secretary Kathleen Sebelius released an ambitious national plan to fight Alzheimer's disease. The plan was called for in the National Alzheimer's Project Act (NAPA), which President Obama signed into law in January 2011. NAPA sets forth five goals, including the development of effective prevention and treatment approaches for Alzheimer's disease and related dementias by 2025.

The National Plan to Address Alzheimer's Disease also includes related dementias like Lewy body dementia, frontotemporal degeneration, vascular dementia and mixed dementias. While the media may only mention Alzheimer's, the law and the National Plan is clearly inclusive of these related disorders, and the impact of this new national plan will ultimately benefit all families dealing with dementia through greater public awareness, increased education of healthcare professionals and increased research funding.

Read the National Plan to Address Alzheimer's Disease. http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdf

For more information on the national plan to address Alzheimer's disease, please visit: www.alzheimers.gov.


The LBDA Team

Lewy Body Dementia Association


Sunday, May 13, 2012

Stealing Flowers.

Mother's Day is almost over, and I remembered that exactly twice today. Once was on a walk around Green Lake, a popular park in Seattle which boasts a very pedestrian-friendly 3 mile path circling the lake, and a lot of really lovely landscaping and places to hang out. It's a perfect place to people-watch, and Paul and I spend a great deal of time there, exercising our legs and our capacity for sarcastic comments. I realized today that I was seeing a lot of multi-generational family groups out walking and I thought, "Oh, right, Mother's Day", which accounted for the lovely grandmothers and mothers and children together.

May is also the month in which my Mother was born; May 1st to be exact. Her absolute favorite flower was the lilac, which usually bloom around the beginning to middle of May in Seattle. Since every year I strove to surprise her on her birthday with a bouquet of lilacs, I would wait anxiously as May approached, watching the lilac bushes to see if they would bloom in time. The only flaw in the plan was that we had no lilac bushes of our OWN. Every year I had to essentially commit a felony for my Mother, and steal lilacs from a neighbor's trees. I figured it was a victim-less crime, and no one seemed to mind, plus, Mom was thrilled every year to receive the fragrant flowers. (Stealing plants seems to be something I'm genetically inclined to do as I have a distinct memory as a very small child stripping the leaves from a neighbor's bush because they reminded me of cheese. My mother made me take them back and present them to the neighbor.) If they didn't bloom in time for her birthday due to a cold Spring, I would gather her a bunch for Mother's Day. Since childhood, the smell of lilacs remind me of Spring and of my Mother.

My mother has been dead now for over twenty years; the grief has faded and, as I've said, celebrating her birthday and Mother's Day is no longer a big deal. But I can't help but look for the lilacs every year. I have yet to live in a home in my adulthood that boasts a lilac tree, so every year I have continued to steal lilacs blooms from wherever I can find them - although I do try to stay out of people's actual yards, instead clipping a few that overhang the sidewalk, or looking for a bush in a park. Every year I have at least one small sprig in my home to remind me of my Mother, breathing in the sweet, wonderful fragrance. I have a sprig right now on my dressing table that has wilted, and outside, the lilacs are turning brown as Spring turns to Summer. The second time today that I remembered it was Mother's Day was this evening as I walked through our room and caught a last whiff of lilac. It doesn't cause me pain anymore, but it does give me a good memory.

To all of you out there who are lacking a parent during these special times like holidays and birthdays, even if your parent is still alive but lost in dementia - this post is for you. Take a moment to remember something special about you and your parent.

Wednesday, May 9, 2012


Mother's Day is coming up and anytime one of these family-oriented holidays comes up it makes me think. My Mother has been dead for twenty-two years now, so its been that long since I've had to think about a nice event or good gift or pretty card for her. I've had other lovely women who have semi-filled that role for me so over the years I've sent things or called or done something to acknowledge them - but its different not to be able to do it for your own Mother. And I miss that around this time of year, but how I feel and respond is pretty straightforward - she's gone, there's nothing to celebrate anymore.

My Father, of course, has no idea when these holidays come around or what they mean anymore. When we were growing up, we made something my Mother called a 'Daddy's Day Book', basically a scrapbook with pictures and all of our accomplishments throughout the year. I found them all tucked away when I cleaned out the house, and it was both good and hard to look through them and remember my Mom's creativity and our delight in making something for Dad. I think about those books every time June and Father's Day rolls around.

It's gotten so I don't really even bother to do acknowledge it with him. Maybe I should, I don't know. In many ways it feels like he's as gone as my Mom, so there's really no point. But it still makes me think, it still makes me remember. I look at all the people I know or follow on Facebook who have a loved one with dementia and I see their day to day struggles. I wonder how they feel each time a 'Parent' day comes on the calendar and whether they bother to still acknowledge it. I guess its a personal choice but one that people who have never experienced this disease in their family have any concept of. I hope they never have to.

Thursday, May 3, 2012

Check it out!

Here's a link to a very important story done by NPR. You can listen to it or just read, either way its all about the cost of caregiving and ways the government needs to step in to help all the families doing it on their own!