Sunday, April 29, 2007

Best Manners

I realized something about my Dad today. I have often wondered why he is so calm and peaceful, I know drugs but besides that, his whole demeanor is calm and peaceful. Last week I had an epiphany, my Dad is using his company manners.

My respite angel and I were talking about Dad and some of his recent losses of comprehension. She remarked how sad it was because you could see him trying to piece it all together. She then went on to comment on what a gentleman he is, how polite and considerate. Now to be honest, it is NOT my Dad's nature to be that way, so I laughed to myself. But I started thinking, and trust me no good comes from me thinking!

I realized he acts just as he has when I was little and we would go visit relatives. He was polite, he waited to be asked or would request refreshments. He would visit until he was done and then he would leave. His leaving was with very little ceremony and sometimes folks were lucky to have him say goodbye.

This is EXACTLY his current behavior! I used to get a little frustrated and think, the juice is on the counter for once could you pour yourself a glass? Well guess what folks, no he can't. Not because he doesn't have the CAPACITY anymore, but because it would be IMPOLITE! What a revelation for me. He may have owned this house at one time, he may have lived here for 12 years, but he is a guest in his mind. So when I begin to feel the tugs of caregiving and little nagging voice starts up, I shut her up and remind her I have to put on my hostess manners to match Dad's company manners.

Monday, April 23, 2007

It takes a village to be a caregiver

What a beautiful phrase and so versatile. It takes a village (fill in the blank). You can say anything, even nonsensical stuff and someone somewhere will sagely wise their head in agreement. So it takes a village to be a caregiver (all nod now). A caregiver interfaces (I love tech speak) with all types of people in a variety of situations. The secret is bonding them to you and your cause (your loved one) and getting everyone on the same page. Here are some tips:

Medical personnel
  1. Just because you read a reader's digest article on an ailment does not mean you or your loved one has it, nor are an expert on it.
  2. Take a moment to say Hi to the staff. Believe it or not, the person in the next room may have just yelled at them, puked on them, spit on them, peed on them or all of the above. You take that moment to set the tone and it will give you some control over the interaction.
  3. If your loved one is in the hospital, see if you can stay with them. If not, enjoy the break and leave a set of instructions. Those little notes are worth their weight in gold.
  4. Don't assume anything, write notes, ask questions, but become a partner with the medical team.
  5. And remember like all relationships it takes work. My Dad's poor doctor was screamed at in a hospital and called all kinds of vile names. The reason, his patient had enough and was ready to go, his daughter's were not ready and blamed the doctor.
Emergency Workers
  1. Firemen and policemen can be our best friends.
  2. At the end of my mom's life they were calling them so often they volunteered to change the light bulbs so my parent's wouldn't try and climb a ladder, fall down and call them. Proactive these guys are.
Grocery Store
  1. I don't know about you, but the grocery store seems to be the one place I take my Dad frequently. They all know us and work with us.
  2. I spent a little time with one of the cashiers and explained my Dad and our situation. Now, they open up lines for us so Dad doesn't have to wait. They also understand if I leave in the middle of the shopping (or checking out). They just hold it until Dad is changed and then load it in the car.
I take every opportunity to talk about this wonderful journey we are on and do my best to involve those we interact with. Everyone I come into contact knows that my Dad is with us and takes a moment to talk to my Dad and have an interaction. This alone enriches my Dad's life and those that interact with him. If my Dad has a conversation I can see how virtual strangers light up and feel that they have done something special. Which they have.

Friday, April 20, 2007

As a trained economist

Which means, I went to school studied economics but never really found a job. But, as a trained economist one of the tricks you learn is cost/benefit analysis. For every decision that is made in life, in the marketplace, in school, in the workforce, whatever each of us does a cost/benefit analysis is in our decision making. If I do X, Y will happen and is X then worth doing? Well, caregiving has its own cost/benefit analysis. Mine goes like this:

  • Having Dad at home with me means I cannot work full time anymore.
  • Having Dad means less quality time with my husband.
  • I lose my peer group.
  • I have to manage my Dad's medicines.
  • I have to monitor Dad's health.
  • I don't get to travel.
  • I miss my friends.
  • I became an orphan with a living parent.
  • I feel sad.
  • Do I really want to work full time? NOT
  • Frankly, quality time with the hubby can be over rated. Not so much honey, love ya!
  • Peer group, schmeer group. The silver set is a hoot and frankly I like some of the outrageous remarks and freedom that dementia provides.
  • With my AARP benefits I can get prescription coverage, wonder if they cover birth control pills............
  • But he has some great pills (2 for him, 1 for me.....). My personal favorite is the orange football shaped one.
  • How much fun is it to tell a new nurse that your Dad has a funny looking mole in his groin area. She begins with shock and horror in her voice "Why are you looking there?"
  • Every day is an adventure with Dad.
  • I get to make and maintain new relationships over the internet or within my various caregiving groups.
  • I gained a friend in my Dad. Never would he have shared with me the stories I have heard in our previous father/daughter roles.
  • I don't have time for a pity party.
So what this means, is when I add the psychic costs and the benefits of being a caregiver, it still makes sense to keep Dad with me. Knowing full well and embracing the concept of yes there are losses and there is toll on my life, I still come out ahead. And that is without even considering the benefits for Dad.

Wednesday, April 18, 2007

Survival of the fitest

Funny title, huh? But you know that Darwin guy, just might have been on to something.

I was talking to our respite angel. This woman is so many things to my family. Quasi Grand Mother (notice all in caps as it is such a special title) to my children, Mother in Deed for me and Friend for my Dad. She steps in and helps in more ways than I can count and I would truly be lost without her love, guidance and support. (That Hallmark moment was brought to you through support of your local Alzheimer's Agency.)

But we were talking today after I got home from work (my favorite part of the day). She mentioned how she worries if her clients are out of her sight too long. She then shared that the family member confided that he was fine in the bathroom and they would hear if he fell. I laughed at the irony of the situation and will explain why.

I have always seen our respite angel as the be all and end all of caregiving. If I had a question, she had an answer as she has been doing this for years and nothing surprises her. And even with all her years of experience, I realized that she goes home at the end of the day. I as the primary caregiving, live it 24 hours a day, 7 days a week, with no time off for good behavior. So while my respite angel is still my role model, I saw a difference in our experiences that had never occurred to me. She could walk away (she never would, but could) while we are family caregivers are in it for the long haul.

And I think what happens (with caregiving) is the cream rises to the top. Those that make it as caregivers adapt to their new environment (aka Darwin) and become a new and improved human being. The stress, the sleepless nights, the anxiety, the worry, the pressure and the fun, the laughter, the unbelievable situations we find ourselves in; lead us to become a better version of who we are. And this goes for all caregivers, whether you are caring for your loved one at home or in another setting. So caregivers, I salute you.

Thursday, April 12, 2007

Exciting news

Okay I think it is exciting! I have been asked to contribute to a web site for caregivers. The web site is associated with a magazine for/about/by caregivers and former caregivers, but really does a "former" caregiver exist? I don't think so. As usual, I digress. The magazine is called Caring Today and I will figure out how to put a link on my blog for them.

This magazine and web site is incredible. Who would have thought such a thing would exist? Not me. If you get the chance I strongly recommend checking them out. No matter who you are caring for, there is something there that will strike a chord or bring a smile.

Wednesday, April 11, 2007

Paternity Test

My Dad has developed his personal paternity test. There are times I go in to check on him and he is laying in the same bedroom he has had for 12 years and is scared to death. I look into his eyes and they are "deer in the headlight". You know that look, eyes wide, fixed and then darting around looking for something, anything.

I have a recliner chair next to his bed. The idea is that I can sleep there when necessary and he can see me if he wakes up. We do this if he is not feeling well and I am scared or if he is scared. At this point I usually go in and say:

"Hi Daddy"
(This is where my continued naivete shows up. I fully expect that my using the title Daddy and he responding to the title, means he understands our relationship. HA! Rookie move, but I fall for it every time.)
"Who are you?"
(This is when I go "Oh shoot" and remind myself that no the title doesn't give him a clue.)
"I am Debbie, your daughter"
(Once again, holding onto that titile thing.)
"You are not"
(Well that was blunt)
"Yes I am Debbie"
(If I just keep repeating myself he'll get it. It was like I had never been around someone with dementia before!)
"No, Debbie is a baby"
(Okay I may be a babe (she says smugly) but I am not a baby.)
"I am Debbie but I am grown up"
(Once again I resort to logic (like that will work, duh))
"Who's your mother?"
(This is the paternity test.)
(Thank God I know the answer.)
"Well then I guess you are Debbie"

I always feel this sense of relief (like I would not know my mother's name). But going through this process with him, reassures him that I am who I say I am. It also sets the tone for the day, from that moment I become the Oracle, the Delphi, the fount of all information and she who must be obeyed. Now, all that has its perks (I will admit), but it can be a little heady. It can also be exhausting. But you know what is more exhausting? Having dementia.

Monday, April 9, 2007

Washington DC

Recently I went to Washington DC to attend the Alzheimer Public Policy Forum. What an amazing trip! I went with a care provider from Anchorage and we were the "Alaskans". Everyone was so excited to meet "real live Alaskans" and we were thrilled to see what the other states are doing and the opportunities for advocacy. And my are there opportunities!

I am going to talk about each of these issues as they are so important.

Safe Return
This is a program that reunites family members when a loved one wanders or in the event of a disaster, like Hurricane Katrina.
  • 4.5 million Americans suffer from Alzheimer's and 60% will likely wander from home.
  • In 2006, 1,425 incidents were reported to Safe Return.
  • Studies show that if not found in 24 hours up to 50% of those who wander will die.
  • More than 148,000 participants have been registered.
  • Sine the inception 12,000 wanderers have been reunited with their families.
  • 88% of the Safe Return registrants are found within the first 4 hours.
  • Caregivers are also given an identity bracelet.

Guess how much the program costs a year? One million. Chicken feed in federal funding terms. Guess what program is not part of the president's proposed budget for 2008? Safe Return.

Imagine as a caregiver, being in an auto accident with your loved one. You are gravely injured and they wander off. No one would know to look for them. Having the identity bracelet informs emergency responders that there could be another victim.

Personally, I am horrified. My Dad has wandered twice, luckily I live in a small town and our neighbors know us. I have actually given our local police station a picture of my Dad and information similar to "If found please return to...." My Dad was returned within minutes once by the police and once by a neighbor. I agree that vigilance is the first line of defense, but come on while we are on duty 24/7, we do have things to do and it only takes a minute.

So please think about this and if you feel in your heart that this program should be funded, send an email, write a note, tell your representatives in Washington, DC how you feel.

Friday, April 6, 2007


My Dad's sister died today. She was his oldest sibling and he loved her dearly. I have decided not to tell him.

Shocking, yes. But let me explain my thought process. Dad has dementia and his short term memory is pretty much shot. If I tell him his sister has died, he will of course be sad and begin to grieve. Unfortunately, his grief and pain will last longer than the memory of why he is sad. He will then "fill in the blanks". I have no idea what he will come up with or how he will reconcile his negative feelings. I have decided to spare him this.

I do know my mother felt exactly the opposite. When my Dad's brother died, she decided to tell him. I counseled her against that move but she felt she needed to "orient" him. I thought it was going to be a disaster and it wasn't. My Dad took the news in stride and currently frequently asks for his brother and believes he is still alive. I guess you could say that when my Mom died, his brother's death went with her.

Some of you may feel that I should tell him and some may feel that I have done the right thing. I don't know. What I do know, is I am comfortable with the decision and know that I made it with only my Dad's best interests at heart. I think that is the ultimate litmus test for all of us. We do the best we can, we may not always make the best choice, but when the choice comes from our heart and our loved one's best interest is at heart, we can be comfortable with our choice.

I wish to all of you, comfort with your choices and know that whatever you do with love, is the right choice.

Tuesday, April 3, 2007

Event plus reaction equals outcome

I was reading a book on relationships, (I admit it I totally love these things!) and they were talking about a little formula:

(Event plus reaction equals outcome)

We as care givers live this little formula and most of the time we don’t even think about it. And we live it in so many ways.

  • We know that if our loved one has a bad moment and gets cranky (come on who doesn’t get cranky), if we engage it will escalate. If we deflect, it will dissipate.
  • We know if our loved one gets their clothes soiled, if we make a big deal about it, they feel shy and self conscious. If we just move them into clean clothing they accept our loving care.
  • We know that when our loved one gets confused and scared and starts asking questions, if we patiently answer the emotion not just the question, they quiet and become unafraid.
  • When our loved one calls us by the wrong name and looks for family that is long dead, if we insist on orienting them to the time and place our loved one becomes fretful, scared and sometimes hostile. By answering their call for attention we have met their need.
  • When we allow our need to “be right” to be second to their need “to recognized and acknowledged as having value” we all benefit from the interaction.
  • When we let go of the baggage from our past relationship with our loved one and forge a new relationship based on the present, we are given a wonderful gift of forgiveness.