"Ain't she the prettiest corpse you ever seen?" asks Arden Peters at his wife's funeral. Before she passed away, Maxine's last words to Arden were, "I love you."

Images (and words) of the Aging of America.

Also, take a look at the wonderful multi-media presentation (slideshow and audio commentary) presented on this same work, here...

The Forgetting is a documentary that will be broadcast on PBS on January 21, 2004 (9pm ET). It's a timely subject with adults living longer but not necessarily living better. We're at a crossroads where quality of life is intersecting with longevity. Science is racing to find solutions to battle diseases such as Alzheimer's, but in the meantime, people are left to cope with the results of our minds not keeping up with our bodies...

So many people are out there, caring for loved ones that can no longer care for themselves. They're called caregivers, a lovely term, but it is describing one of the hardest jobs there are. Nothing new, mind you, since people have been doing it for centuries, of course. I'm bringing it up, however, in the modern sense in our culture. Caregivers are one of those invisible groups that most of us either don't know about, think about, and sometimes even when we do, don't acknowledge. Especially when it comes to acknowledging this challenging and physically/financially/emotionally-draining job by offering support. Kind words are nice, but offering a caregiver a day off is better.

Below is a 'caregiving note' recently published in a newsletter I subscribe to, from a fellow caregiver asking for feedback by other subscribers on a situation facing her. Subscribers are asked to offer their ideas to the person writing in. Under her note is my response to her...

It isn't easy for anyone to be around my husband, including my brother and sisters . MY husband suffered a traumatic brain injury in March of 1999, while skiing. I have chosen to care for him at home.

My husband and I loved to travel before accident. We have sometime shares, so I called my brother and asked if he and his new wife might like to join us next summer at a date that would be convenient for them. My brother called me the next day apologizing he said he's sorry, but since My husband's accident, they aren't comfortable around him, and they wouldn't be able to relax. They would rather not make plans with them. My sister who is a CNA, has not been interested in a trip to "help" out even if I paid her way.

I don't receive any help from my family, but my 5 girls are all supportive to a certain extent. They say it would be embarrassing to help change Daddy. I could understand these feelings in the beginning, but after 4 1/2 years I wish there was an attitude adjustment. The general feeling is that there are skilled care facilities to take care of people like my husband. I know that he wouldn't do well or live long there.

Thanks for reading,

Betty

My answer...

Betty:

It is unfortunate that your daughters are not willing to try to overcome their discomfort to help you. I am a daughter who helped my father with personal care, and while it was strange at the beginning, I felt more compassion than anything because my Dad was probably very embarrassed. His situation was physical only, mentally he was fine, he knew what was going on. My point is, you need help. You needed it 4 1/2 years ago and you definitely need it now! If your daughters or relatives cannot or will not provide you necessary respite, then is respite care through your county, state or local private companies an option for you? If not, you may have to compromise and seriously consider skilled care. If you research available local skilled care facilities, talking and working with the staffs, I have a feeling you can find a good fit for your husband and yourself. Many such facilities not only allow but welcome family involvement. You can continue to participate in the care of your husband, but at the same time continue living life as your husband would surely want. It's NOT selfish to think this way, trust me, Betty. My own mother is now in a wonderful assisted living facility that is more like a cross between assisted living and skilled care. It's private, run by a family, and only has 30 residents. I've gotten to know them all, and while Mom was nervous about it, she has come to greatly appreciate the facility and its staff. I hope this helps you...

I'm reading an amazing book right now titled, "Dancing with Mister D". Based on real-life experience as a physician working in a nursing home, the author writes about what it's like facing death with those at the end of their lives.

Since we are all mortal, we're all of us doomed to be destroyed. This destruction is often preceded by years of torture in all kinds of institutes for the aging, where Time, like the cruel child with the fly, slowly pulls off our wings and legs...

The author, Bert Keizer, works in the Netherlands where euthanasia is legal for those that request it. He discusses, in first person narrative, many such situations in the book. It's illuminating to learn the reasons individuals ask for this, how families react, etc. The subject matter is dealth with with compassion, intelligence, and yes, with humor. It's not a 'feel good' book, but it still leaves me feeling very good about life in a profound way...

The Greenhouse Project is a movement of people who envision a more positive environment for not only caring for but nuturing our elders. I think it's exciting! I intend to follow this idea and those like it. For now, it is limited where this kind of thinking is actually practiced, and will probably be too late for our Mom. While we do what we can now, I think about MY senior years and what I would like...

A message from our mother, to her daughters (Sharon, Betty, and Patricia)...

I love you still even though you sometimes treat me like dirt. Dad & I went through hell to bring you back from California and away from Tom the devil's cohort. It really tore your Dad apart to see you in the condition you were living in. Estelle gives me a pain in the ass. She should have stayed at home and raised her kids properly. She thinks she is so smart. She sits and puffs away on her cigarette and thinks everything will be okay if she dishes the money out to those no good boys of her's. I've got news for her. She is just helping them to get into Lucifer's hands deeper and deeper.

I thank God we got you away from there but don't know for sure if you are glad we did or not.

I pray that Daniel tries to walk the right path. Eva is sort of off the right path but pray she turns back before it's too late!

I'm sure glad my mother is not alive to see all this as it would break her heart. I'm so thankful that I did all the right things for her even though she and I always had our arguments. We loved each other immensely! She was not just my mother, she was the best friend I ever had on earth! When I needed to talk to someone she was always ready to listen and to encourage me to go on!!

She did not have it easy as a child. Her father was a drunkard! I don't know where he would end up after death. He did long before I was born so never knew him. My other grandpa, Grandpa Fitzpatrick, was wonderful and loved all the grandchildren. He always had a pocketful of pink peppermints. I was 4 1/2 when he died so can't really remember him too well.

I remember his big white beard. I do believe I'll see him and my grandma in heaven! What a wonderful reunion that will be!!!

When the Lord calls me I hope I don't struggle to live as I want to drift into the arms of Jesus nice and easy. Betty, I'd love to talk with you someday. Trish, too, if she wants to listen to me.

I was so delighted to have three little girls, and it was so fun to sew all of your clothes. I sure spent hours at that machine. Dad was so pleased that he would sneak up behind me, give me a peck on the cheek. He loved me so tenderly! Sure we had our arguments but they never came to blows.

Grandpa Short was so cruel to Grandma Short. I don't know why she stayed with him as she was a teacher. But of course the wages were so low I supposed she couldn't make it. So she just stayed and kept having kids. Can you imagine - he blamed HER for that, too, as if he didn't have any part in it, the miserable bastard!

I wouldn't take anything from him. He said, 'You think you're so smart.' I said, 'You're damned right, and a lot smarter than you.' I bet your Dad could have told you things that would make your blood curdle of how his Dad treated your Grandma Short.

There are lots of men around today that take part, but women can get a lot better help if they aren't afraid to ask.

Some days I wish I'd never been born. Happiness is an illusive visitor to me. I've struggled with that all my life. The happiest time was with you three girls and your Dad!!! Your Dad was a prince!!!

No man has a right to treat a wife like a child! A wife is a grown intelligent adult and should be treated as such.

My hand is getting tried so better quit and finish this later...

I found these notes while tidying up her room recently...

My sister Betty asked the director of our Mother's assisted living facility how she sees our Mother now, and over the next few months...

Your mom is really pretty much the same as before. She has really good moments and days and then not so good ones. She has made friends with Kay and really enjoys being with her at coffee and card time. Kay can typically get her up and moving quite a bit. There really is no predicting what are the good days. I do think that she is eating a lot of junk food and is then not very hungry for the main meal. I don't believe that she has had any major weight loss or gain, I will double check this. Over the next year I can't honestly say. Is she doing worse than before- not really-she's still up and down, good and bad etc. Is she doing any better. No, pretty much the same. We will just have to continue to try and motivate her as much as possible and keep her safe. We will also monitor the memory loss and see if that is affecting her in any major way. Is she safe right now, I believe so. But the other possibility is that at some point she may decline, have a fall, or begin to wander. These are the things that we watch for. Sometimes they are predictable and sometimes they are not. I am sorry that I can't give you more of a definitive answer. For now I say just continue to love her up the way you all do and enjoy the good moments. Thanks Susan

I recently contacted Denise from Caregivers.com requesting that this blog be added to her links section. Denise responded by asking my sisters and I to participate in an interview of sorts via email about our blog. I gladly accepted and below are my set of answers...

1. How did your blog start? Had any of you had previous experience with a blog? Is there one person who is the IT department, so to speak, of your blog?

My Dad passed away on August 8, 2001. It was because of the stressful months leading up to his death, and those after, that led me to writing down my thoughts. I define myself as a Writer. I can't remember a time when the written word, either as literature I read, or writing I did as some form of expression, wasn't a big part of my life. [The very subject I'm writing about - my mother - was a huge influence on my awakening, exposing me to stories back as far as I can remember. My father made up bedtime stories and took me out of myself. He played roleplaying games with me where he was Hawkeye and I was Chingascook in the woods by our home...] It was very natural to extend what I already do with other parts of my life and express my feelings and thoughts about this part of my life. That sounds strange to me, because I think of it as sharing more about my MOTHER'S life, not mine, but of course, it's all intertwined.
Yes, I have other blogs, several others (The Journey and Writer's Block are examples...)

I am the IT department; I do IT as a living and set up all the writers as part of my blog team, etc.

2. Did you worry about sharing personal information in such a public format? The honesty of your blog is just wonderful, but did you worry about any repercussions from your families?

No. I'm an open book to anyone. I see nothing to be ashamed of, of being human. Sharing is healthy for me, for my family, and for others that read it. No, I have not worried about repercussions from family. But then, our family is very open and honest and I can't imagine anyone being bothered (there are other family members that read it but don't write for it...)

3. How has writing the blog affected you? And, affected your relationships with your mothers?

Writing for the blog helps me to see events in a broader perspective. It allows me to vent when there are emotional periods, and then come back to them and see them in a more realistic light. Sometimes that does NOT happen. Sometimes things are just tough, and there is no getting around that. In the end, I think I can speak here not only for myself but for my sisters and our cousin, we all realize things are just as they are and we get on with life. I personally think that's the Irish in us. We're all very strong, independent, intelligent, IRISH women.

4. Have you been surprised by any events or incidents that have occurred because of your blog? Any unexpected surprises--good or bad?

I can't say I've been surprised by any of it. When I started it, I started it for myself because I needed to. Then I started thinking, my sisters may benefit from this also, and the dynamics of multiple voices vs. a single voice got me excited. I invited them first, then later my cousin after my Mom's sister began having similar problems. It's been as good as I hoped - i.e., I hoped it would provide a place to unburden, a place to enlighten, a place to share with each other and with perfect strangers, and to be positive in our lives generally. It has been all that. My sisters and I, and especially our cousin, are talking more than ever. We now have weekly 'family chats' on my Family website I created .

5. Have you committed to a writing schedule in your blog? Do you write as often as you need? Or at certain times during a day or week?

No writing schedule. We all write when the spirit moves us.

6. What suggestions can you offer to other family caregivers considering creating their own blog? Any pointers you can share so they get off to a good start?

Have a central point of contact/IT person like we did. It makes administering the blog much easier!

Use one of the blogging services at least at the beginning. They offer editing utilities and page templates that make setting up and using your blog MUCH easier than starting your own from scratch. Of course, if you have a VERY handy IT person around, go for it!

Anyone contemplating doing a caregiving blog should probably think about what they want out of it before they jump into the creative side of it - e.g., I wanted a blog that was both memoir and journal; I designed my page to show who my mother WAS, and who she IS, as well as showing how I felt about her. I included the trigger that caused the page, my father's death, and how it had devastated my mother. You can keep it simple, or you can be more expressive as we were. It's all up to you...

And, can you include a brief bio of yourself (age, marital status, children, careers)?

Age: 44
Marital Status: Divorced, currently in a Long-Term relationship
Children: Two - Daughter Eva 24 and Son Daniel 21. To find out more about Eva, see her blog - she is literally leaving tonight with my 3 grandsons for Iraq...
Career: I am Systems Administrator for the Office of Hearings & Appeals, Social Security Administration in Fargo, ND

For more about me, see my personal website

I've been reading discharge horror stories. Anyone who has had a smattering of experience with the modern medical establishment will recognize these stories or have experienced personally some of the same things. It's like the one person writes, that the '...left hand doesn't know what the right hand is doing.' You can't assume anything. You have to follow up everything. It's exhausting mentally to remember what you've done, who you've called, etc.

An article about a new film named "Assisted Living" intrigues me. Anything that can touch hearts and make laughter out of a situation that too often produces anger and depression is worth seeing...