Saturday, December 29, 2012

A Big Help.

I'd like to take a minute to talk about a website that I find incredibly information-packed and helpful when I'm helping a new or stressed out caregiver who needs support and resources.

The Family Caregiver Alliance, found at the following link,
is a national organization founded in 1977 to support families providing long-term care at home.  A small group of families and community leaders in San Francisco came together to see if they could create support services for caregivers struggling to provide long-term care for someone who didn't fit into traditional health systems.  Their goal was to address common challenges such as isolation, lack of information and resources, depression and burn out.  Although begun in Californis, the FCA now has programs and information for the entire nation.

One of the special things about their site is that they have a state-specific page that lists not only what resources are available on the city, county, and state level, but also what is available in that state on a national level.  Since caregivers are everywhere, in every state, now, I have found it to be so helpful to either refer them to this site, or to copy and paste entire state pages on emails I send to them.  I have found this to be one of the single most helpful and reassuring information locus for the people I talk to.

I just wanted to give this site a shout-out, and I also wanted to make my readers aware of it, in case they didn't already know.  If you don't happen to need information or support, you may know someone who does, so give them this site; it could be the best help you could give them.

 Don't forget to vote!  I'm on page 1 if you search alphabetically.

Wednesday, December 26, 2012

Blogs, blogs, blogs.
Search alphabetically for 3 Years and 13 Dumpsters - Vote!

I've been looking through some of the other blogs that are competing for Best of 2012 and finding some interesting stuff. Some of the blogs are huge, run by larger organizations perhaps, or have been around long enough to become authorities and money-makers. Some blogs are smaller, like mine, started by someone who just had something to share, or someone who had had enough and wasn't going to take it anymore and wanted to talk about it. It's heartening to see people sending their little voices out into the dark, not knowing if they'll be heard, but trying to make a difference anyway.

There are diet blogs, and blogs about pregnancy and parenting. There are blogs for aging, for exercising, and for mental health... and there are, of course, blogs for various illnesses and syndromes. I've been a little shocked and surprised by how many there are about Rheumatoid Arthritis, which is the chronic pain condition that I struggle with and write about occasionally, especially as it impacts my caregiving. It seems that more and more people, often women, are being diagnosed with this terrible disease, and are fighting back the only way they can, through the written word and over the internet.

I'm glad to see they have a forum, and I'm fascinated by what they have to say and how it compares to what I experience. It strikes me as a little funny, though, that I could actually have TWO different blogs out there for the two big things I have experience in - dementia and dysfunctional joints! Maybe I'll start the second one later; I'm a little occupied with the dementia stuff, as it is now! I'm pretty proud of the information and support I've been able to provide with my blog, and so honored that anyone has found it to be of use.

While it makes me a little sad that so many people have such terrible and long-term challenges that they have to start a whole blog as a way to find and provide information and support, it is encouraging that the days of not being able to find someone who understood what you were going through - whatever that might be - are largely gone. So here's to the bloggers, who get their message out there, because the need for information, compassion, and help only seems to be growing.

And thank you, to everyone who is spending their valuable time voting for me, because I'd really love to win this contest!


Monday, December 24, 2012

Vote for Me!

Happy, happy news! My blog has been nominated by editors for their "Best Health Blog of 2012" contest. I can't tell you how excited I am. I'm facing heavy competition from some big blogs, but I'd love to give it a good try at winning. These are blogs about all kinds of health issues, not just for dementia, so competition is stiff!

Please vote for me, early and often. Go to ,search for my blog alphabetically, 3 Years and 13 Dumpsters, and vote. You can also click on the link embedded on my blog. One vote a day per person is allowed; voting ends February 15. Please spread the word, and vote as often as you can.

Just the thought of being in the contest is amazing, but the thought of winning and getting my blog out there to help more people is even better. Please help me to do this.

Thursday, December 20, 2012


Every year I swear I'm not going to get caught up in holiday stress, and, for the most part, I succeed. I try to buy gifts throughout the year, package and ship gifts, write up and send cards, buy and decorate the tree, and make cookies reasonably early in December, and this year I managed it. With every thing else I've had on my plate, though, I feel a little tired and put through the wringer; and I haven't set foot in a mall since late November! We don't even have any parties to go to, either. Is it that life is generally busy enough that adding the extra duties of the holidays overloads the system? Maybe. No matter how hard I try, I always end up feeling a little overwhelmed.

I think part of it is an underlying sadness that comes with knowing that no matter how lovely your holidays can be, they will still be without people special to you. It's not something I think about consciously or notice on a daily basis, but it still wears on me a little bit. Combined with the manic capitalism and the message that if you're not loved and don't have family, you're not part of the magic, it all gets a bit tough. With this melancholy and everything else holiday and non-holiday that I've been racing to finish, there've been a few difficult moments.

I made Dad's favorite cookies and took part of a day last week to bring them over to him. I also had some gift cards for his caregivers to thank them for all their hard work and care of Dad, which they really appreciated. The visit and gifts were something to check off on my to-do list, but surprisingly, I spent a peaceful and calm half-hour with Dad as he alternately snoozed and looked at me. It was actually really nice to sit there quietly, with no Christmas carols blaring, no pile of things needing finishing at home, and nowhere to be just then but sitting with my Dad. It was quite lovely and just what I needed.

I guess we just have to be as aware as possible when this time of year rolls around, and get through it the best we can. I don't really have any conclusions or advice, but I appreciate being able to write it all down and send it out there. Thank you.

I do have one thing to say, and that is, if there was ever a time to thank you're loved one's caregivers, this is it. Show them how much you appreciate the love and care they provide every day. Gift cards or tips are a great idea, just make sure you check the tipping policy of the facility where your loved one lives; caregivers might be restricted from accepting gifts. What better way to show your appreciation, though, than a thoughtful thank you at this time of year!

Tuesday, December 11, 2012

Joy for the Holidays.

Well, it's that time of year again - the holidays. I'm always a little melancholy and nostalgic around this time about my parents and the ways we used to celebrate, but every year takes away more of the sadness and regret and I enjoy the ways my husband and I and our friends now observe the holidays. I look around, however, and I can see how grief and society and expectations can make it so hard to feel any kind of joy when you're dealing with illness or death.

Facilitating for the Bereavement group this year really made me aware how difficult this time of year can be for people who have recently lost a loved one or who are caring for one. Everything that people once enjoyed and counted on and looked forward to every year changes, and the pressure to be happy and enjoying the holidays while dealing with fatigue, grief, and stress can be crushing.

I remember what that was like just after my mom died, and again when my Father's illness became really bad, but over time my nostalgia has become gentle and faded and easier to bear and I can feel a little joy again as this time of year approaches. I just want to say to everyone feeling grief this month, that it will get a little better, although it might not seem like it now. Give it time, and the holidays will come to mean something else just as special, if not exactly the same.

I can't have my dad back for the holidays, but I can enjoy making the special cookies he likes, bringing them over to his home, and watching him take a bite of one. I can see him enjoy the taste of peanut butter and Hershey's kisses, even though he may not remember my mom making them, or the fact that they were his favorite. I won't be with him for Christmas day, but we'll go see him the day before or the day after and sit with him for a while, and I will feel grateful that he's still around, and that I found a place he likes where the people love him and care for him. And on Christmas day, my husband and I will take it easy and relax and eat and watch tv and make our own special holiday, that isn't the same as the ones I used to have, but which are just as good.

If there's anyone reading who has not gone through grief or the burdens of caregiving this year, but know someone who has, I urge you to reach out to that person. You don't have to do anything special, just let them know you're there to listen or help in any way you can. Bring over some cookies or one night's worth of dinner, and then eat it with your friend. If you have some time, offer to look after their caree for a few hours so they can have a break, or you could also offer to pay for a half day of adult day care. There are so many ways you could bring joy to someone in pain, and they don't have to cost a thing, nor do you have to brave the mall.

I have, over a long period of time, been able to find a certain joy in the holidays, despite the hard things that have tried to interfere. Whether you are grieving a loved one, or tired from giving 24-hour care, or sad that your spouse or parent is suffering from illness or dementia...take care of yourself, and take some time for yourself, and don't worry about crappy, unrealistic holiday expectations. But do try to find a little bit of joy, something about which you can be grateful or happy or that brings you just a moment's worth of pleasure.

Thursday, December 6, 2012

Bereavement Support Group

If you live in the Seattle area and have recently lost a loved one, I encourage you to come down to the Swedish Hospital/Providence Hospice Newly Bereaved Support Group on Saturday, December 8th. You don't have to have been involved with Providence or Swedish; anyone is welcome and it's a really great group. The facilitators and fellow attendees are all really supportive. I've seen some great comfort in the group.

This can be a tough time if you've lost someone in the last six months to a year. It can be overwhelming and full of grief; all the feelings can come welling up again no matter how long its been. Traditions must change, expectations are rampant, and sometimes there's just not enough help. Well, there is at this group and we will welcome you.

We meet on the 2nd Saturday of each month from 10-11:30 a.m. at Providence Hospice of Seattle which is located at 425 Pontius Avenue North, third floor, Seattle, WA 98109. (Jointly sponsored by Swedish, Group Health Hospice, and Providence Hospice of Seattle.)

Second Saturday of each month from 10-11:30 a.m.

Providence Hospice of Seattle, 425 Pontius Avenue North, Third Floor, Seattle, WA 98109. For further details, please call 206-320-4000.

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Monday, December 3, 2012

The Real Young Caregivers!

I often make the point that I was relatively young when I entered the world of dementia and caregiving, due to the fact that my father was fairly young when his disease manifested. I was around 33 or 34 when I was faced with the realities of taking over the running of someone else's life as well as providing physical and emotional care. I found it to be quite a burden, not least because it was not something I was expecting to have to do for many more years, during which I would have hopefully learned how to do some of the stuff I was being asked to do. Generally, we are not prepared to have to care for a loved one or parent until later in life; it was a challenge and a steep learning curve to have to do so early and I knew nobody else in my peer group who was going through the same thing.

What many of us don't know is that there is a growing group of even younger caregivers in this country. There is a vulnerable and hidden population of young people, conservatively estimated to exceed 1.4 million children, who provide care for family members who are unable to manage life independently. These include children under 18 who balance school and their home lives while providing the only care their family member will receive due to poverty, lack of medical coverage, and lack of other assistance. I thought I had it bad at 33, trying to balance my responsibilities, but my heart breaks at the thought of these very young, very brave people having to be grown up before their time.

There is an organization based in Florida whose mission has become to spread the word about this hidden population through their website, outreach, and donations.

"The AACY® mission is to increase awareness about the effects on children who provide care for family members who are ill, injured, elderly and/or disabled while fostering the replication of the Caregiving Youth Project model within Florida and the US; to provide direct and indirect support services for caregiving youth and their families; and, to establish the Institute on Youth Caregiving.

AACY® addresses the needs of pre-teens, teens, families, and professionals through education and awareness, research, and direct services. It collaboratively utilizes existing resources locally, regionally, and nationally to effectively recognize and support the vulnerable and valuable role a caregiving youth has within the family, in the health delivery system and in an aging and diverse society. AACY® is expanding its reach through an affiliate network, partnerships and the future establishment of the Caregiving Youth Institute."

I urge you to go to their website during this season of giving and taking care of others at:, and donate what you can. You'll be helping a courageous young person who is having to perform above and beyond the call of duty. Spread the word; these kids need our support!