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.