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.

Holidaze.

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.

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!


http://www.npr.org/2012/05/01/151472617/discovering-the-true-cost-of-at-home-caregiving

What's Really Going On In There?

A big WELCOME to all my new followers-please feel free to comment on anything or tell me your story!

We went over to visit Dad yesterday just to see how he was doing and I wanted Paul to meet the couple that were recently hired on as caregivers, just to see what he thought of them. We came in to the kitchen and did all of the introductions. They both seem very nice and competent-apparently they came here from Las Vegas in hopes of living somewhere with a somewhat functioning economy, Las Vegas having yet to recover from the recession. Since we'd had such good weather over the weekend, I asked if Dad had been outside at all, and they were very effusive, telling me that, yes, he'd been for several walks around the property and had sat outside for a bit.

The last time I was there visiting Dad, I could tell that the woman caregiver thought it was odd that I was just sitting quietly with Dad instead of trying to engage him. I explained that neither of us were big talkers, even when he had been more lucid, and that I just enjoyed sitting with him. She seemed to understand this, exclaiming that he seemed to listen very intently in group situations, even though he didn't say much. Talking to her yesterday, she recounted how she had gotten a response from Dad after telling him I was such a gorgeous daughter, and it was obvious I had gotten my good looks from him. Apparently, he laughed at this.

Which just adds to my wondering, exactly how much does he understand? I maintain that there's more going on in that head then he lets on or that other people realize. When he does respond verbally, he tends to say the appropriate word response to what's been said. Maybe some part of his brain recognizes a question as a question, regardless of content, and has a few stock, memorized responses ready to go. I just don't know; I don't even know if he really recognizes me any more, which is hard. I imagine his mental landscape is pretty foggy and dark-I certainly hope its not unpleasant, and I don't think he realizes anymore the horrible thing that's happened to him. No one can really know what goes on in the mind of our loved ones with dementia. I guess all we can do is just keep holding on to the little bit of them that we still see.

Tax Time.

It's that time of year again. Tax time! A season that strikes fear and irritation into the hearts of many. I don't mind tax season so much for myself; I've got a fairly basic set-up, with no deductions and nothing fancy to report. I also do my Father's taxes however, and that's what has gotten me thinking about him today. By 'do' I mean organize, not prepare. I'm not crazy! I organize everything as it comes in the mail, spend time noting medical charges and anything else that might be deductible, and look through his financial records and statements to make sure I have every possible scrap of paper that the accountant might need. Then I take my enormous folder of statements and pension reports, and medical bills, and I take it in to our long-suffering accountant, who then puts everything together and makes up Dad's return. It just makes me think about Dad and all the ways I'm now totally in charge of someone else's life. It's a little odd to be signing your name to someone else's tax return. It's also a little odd to sign your name to someone else's financial documents, or to be the named Social Security Payee, responsible for money sent from the government that they're going to want to know has been spent properly! It really makes you think about being responsible, and how sad it is that you have to do it at all. It reminds me of something that happened while I was still living with Dad-one of our many adventures. Dad was still somewhat lucid and knew that an election was coming up. He wanted to go vote, so I took him up to the elementary school where he was registered(this was before everyone was sending in their ballots), and helped sign him in. As we waited for an open booth, I pondered a few things: whether it was even legal for me to send a man to vote who had dementia; how long the prison sentence was for voter fraud; and also, did he even know who to vote for? I nudged him and asked, soto voce, if he had an idea of which way to vote. He showed me one of his little notebooks, in which he had jotted down some names and issues. I figured that was good enough but suggested he try to keep someone else, like a voting official, from seeing it. Off he went to vote, taking a little extra time, but doing just fine. He only needed my help to figure out in which box to drop the ballot. I realize we're just talking about voting here, but it made me happy to be able to do this for him, probably for the last time. For all the government's intents and purposes, Dad still exists as a tax-paying, social-security-drawing, voting member of society. It doesn't really realize that someone else is actually doing all of that on Dad's behalf. I guess it doesn't really matter to them as long as it happens. But it's just one more thing that makes our lives different from other people's, and I can't help but think about it.

From the LewyBody Organization...

Most people with dementia undergo behavioral changes during the course of the disease. They may become anxious or repeat the same question or activity over and over. The unpredictability of these changes can be stressful for caregivers. As the disease progresses, your loved one's behavior may seem inappropriate, childlike or impulsive. Anticipating behavioral changes and understanding the causes can help you deal with them more effectively.

What is the behavior telling you?
Persons with dementia often lose their ability to express themselves before they lose their ability to understand. Behavior becomes a means of communication. Ask yourself why your loved one is behaving this way. Then you can take steps to manage the behavior.

Tips for managing behavioral changes
When your loved one exhibits an undesirable behavior, your reaction may be to try to stop or change the behavior. But remember, you can't reason with or teach new skills to a person with dementia. Instead, try to decrease the intensity or frequency of the behavior. Consider these approaches:

Remember that your loved one isn't acting this way on purpose. Try not to get angry or upset or take it personally.
Speak calmly and softly to the person.
If the behavior is aggressive, back away. Give your loved one space. Then calmly approach him or her. Don't argue.
Consider the potential cause of the behavior. Is your loved one tired, hungry, in pain, frustrated, lonely, bored? Could it be a side effect of medication?
Respond to the emotion, not the behavior. If your loved one keeps asking about a certain family member, he or she may need reassurance that this person is healthy and safe. Avoid trying to reason with the patient, this may often lead to frustration for both of you, because he or she may be unable to follow lengthy explanations.

If a behavior continues, keep a journal to identify patterns (time of day and possible triggering events), and this may provide clues regarding ways to intervene.

Validate, Join and Distract
One effective method for managing a difficult or annoying behavior is to validate, join and distract. For example, if your loved one constantly heads to the door asking to go home, efforts to try to distract him may not work. By simply interrupting the behavior, you don't gain an understanding of why the behavior is occurring.

A more effective approach is to try to validate the emotion that you think is underlying the behavior. For example, say something like, "I know you miss your family." Then sit down and look through family photo albums. This way, you haven't just distracted the person but you've first joined in and validated the person's emotions. Validating, joining and then using distraction may be most effective with people who are in the early to middle stages of the disease.

You know your loved one best
Let your knowledge of your loved one who has dementia guide your choices for distractions. For example, if she was a homemaker, stirring cookie dough or folding laundry may be meaningful activities. Responding to challenging behaviors takes creative solutions, patience and a willingness to be flexible.

Continental Divide.

There is a line in Tolstoy's Anna Karenina, that says, "Happy families are all alike..." I believe the next line is something about how they are alike, and then how goes on to talk about unhappy families. I don't care what your family looks like, whether you have one sibling or six, step-parents or not, lots of Aunts and Uncles, or not; in my experience, ALL families are alike in at least one peculiar way-how each member acts and reacts within the family group.

Compare a hundred families who are having a crisis - in each there will be similarities in member's behaviors. There is usually one member who jumps in responsibly and takes care of as much as possible, even to exhaustion. There is one member who does as little as possible, who is just too busy, or tired, or whatever. There will be one member in denial about the crisis, another who is angry and trying to find someone to blame. It goes on and on. Granted, a smaller family will have fewer people to take on these roles, but even in one of only two siblings, there's usually at least a doer, and a non-doer.

This is a wildly subjective study, of course, but I've had a lot of time and chances to observe how families react to a crisis like illness or dementia. I've been spending some time on Facebook, observing a group I belong to for people with dementia in their lives. Its a place to complain, get comfort or info, etc. The stories on there would break your heart, and they're all real! Reading these posts, noting as people talk about their families and how each member has reacted to the crisis, just adds weight to my observation. There's a caretaker, giving their life to care for the family member; then, there's the sibling who can't be bothered, or who just checks out altogether; and often, there's a sibling who's in denial, making the caregiver's life more difficult through their words and actions.

I really wish this weren't the case-I wish families were not alike in this regard. But it seems family patterns are common and ingrained in us all. My wish for all families suffering through the horrors of dementia is to talk about it, face up to it, help each other out. A burden shared is a burden halved.