The Plan

So now you have read everything out there and feel pretty confident that you understand what you are facing and have begun to think about how you are going to handle it. Now the hard part is coming. You have to create a plan of care for your loved one. These are those big decisions that normally you could put off a bit until you get used to your new normal. Unfortunately, these decisions need to be made so you can create your new normal. Start small and build. This plan can evolve and change over time, but the skeleton if you will, remains intact. The plan should include:

1. Legal documents that must be completed (living will, advanced directives, will, power of attorney, trusts, Medicaid etc). For this one you really need a good lawyer. An Elder Law Attorney worked for me, as we had no money to deal with thanks to World Comm, Enron, Lucent Technologies and the boys at MCI Cap.
2. Decide how to tell friends and family. This is a quiet conversation between you and your loved one. Good food, quiet music and loving words help.
3. Evaluate your home. As the illness progresses will there need to be renovations to your home? Would it be best to move somewhere else?
4. If you or your loved one is working, how long will you want to work?
5. Grieve.

I know the last one sounds funny, but to me it is the most important. If the illness is not going to be cured, you especially have to get a handle on your grief. I found it was much easier for me if I embraced the disease, said goodbye and made a conscious decision that I was going to sleep, eat and walk this disease for as long as my loved one was with me. When I got my heart and head around that concept, the pain lessened. And when the pain lessened I was able to breathe normally again.

That act of working through your grief allows you to embrace your loved one. In my case, my Dad has Alzheimer’s. I know he will no longer be able to interact with me at some point in the future, until I came to terms with that reality I was in agony, focusing on my Daddy is dying. That kind of pain is paralyzing and does not help anyone. There is no contest that provides a prize to the one with the most pain. (Actually, there is but it is called a nervous breakdown and the prize is a handful of pills.) Once I stopped focusing on his death I was able to focus on his life and the quality of life that still existed.

Don’t Make any Rash Decisions

Whenever someone has a life changing event, a death, a kid goes off to college, a new job, moving etc; the one piece of consistent advice they are given is:

“Don’t make any big decisions. Get used to the new normal.”

Ironically, the one thing you have to do when faced with a serious illness, is immediately make big decisions. You have to develop a plan and get that plan in place. So here you are faced with what could be (and many times is) a devastating diagnosis and at the same time you are given a to-do list. Are you not under enough pressure without being given chores? Most of us at this moment, want to pick up our toys and go home. We don’t want to play any more. But life being what it is; we have to keep going.

The first step is information finding. Use every resource you have to get all the information you can handle, and then get more. Talk to your doctors, talk to organizations, find support groups, surf the net, talk to friends and neighbors, let the world know you are looking for information. Once you have all the information, you have to read and absorb it. Don’t panic yet. Some of that information is written by doomsayers and should be discounted. Find the middle of the road and positive information and then go back to the source and ask for more if you need it.

Remember, the folks producing the information have an interest and knowledge base in that area and are generally willing to share what they have. Web sites are invaluable resources as they are easily updated and usually have contact information so you can go right to the horse’s mouth so to speak. Be warned though, as websites are not regulated there is not a quality assurance program so the information on the web can easily be outdated and less than accurate. That is why you need several sources and to pull it all together. Facts will be repeated and inaccuracies will become obvious spotted.

More to come.

Funerals

This has been a busy week, graduation and 2 funerals. I guess I am hitting that point of life where we celebrate the birth of our children's children and the life of our friends and family that have passed on. I used to dread funerals, so sad, so much pain; but not any more. It may sound trite but I truly see funerals as a celebration of the life that was lived.

The first funeral was for a friend's mother. The mother had Alzheimer's and had not been able to speak for some time. But this daughter loves her mother and even if she could not speak they were so able to communicate. They truly did not need words. The daughter's anguish at losing her mother was obvious to all, but she could not see how her relationship and devotion to her mother enriched all our lives.

Being in the same room with these two was an experience not to be missed. The congregation at their church may not have not their names, but everyone knew the "beautiful woman in a wheelchair and her daughter". And her mother was a beautiful woman who's smile lit up a room, even in photographs. Their relationship was a reminder to each caregiver there, how important our contributions are. It is not in vain. So read and heed. You are doing something amazing and one day you will have the distance and perspective to see what a wonderful loving gift you gave not only your loved one, but the world. Every time you are with your loved one in public, every support group meeting, every appointment is a living testimony to your love and devotion.

The second funeral was for a young man (young becomes relative as you age, he is younger than I am so he is young because I am NOT old). What was sad about his death was the number of people that loved and respected him and his inability to see that. So my heart goes out to his family as they were never given the opportunity to caregive. At the same time I am grateful that my father has given me the chance to care for him and hopefully your loved ones have given you the same opportunity.

So onward and upward caregivers everywhere. Take pride in what you do. Be grateful for the time you have. And remember, you are setting an example and giving others the confidence to care for their own. You are part of a circle or a web (hate spiders but can use the web analogy without cringing too much) that is dependent on one another for success. So thank you.

Graduation

My daughter graduated from high school this week. What a lovely moment. I had a wonderful time and amazingly so did my Dad. I was a little worried, concrete stairs, confusion, crowds.... I really thought it might be a little much for him. But he sailed through the ceremony like a champ.

On the way home, we were talking about the ceremony and he turned to me and asked:
"Did you enjoy the movie?"
Hmmmm, Dad thought it was a movie, okay. I can go with that. "Yes Dad I enjoyed it very much.:
He then asked if I understood the ending.
It occurred to me that the flow of the ceremony, really did not make sense. All formal pomp and circumstance and then once the graduate had their diploma, mamas and papas were hugging and kissing their babies and friends were hooting and hollering.
"Yes Dad, I did get the ending, everyone lived happily ever after."

He really didn't care about the ceremony per se What mattered to my Dad, was the spirit of the event and thinking about it, I could say there is a happily ever after for those kids. Maybe not the life they envision now, but the possibility of "happily ever after" is there for each of us.

But once again Dad surprised me,he was not done with his lessons for the night. He looked at me and asked "Where is our baby?" I knew in that moment my daughter and I were tangled in his brain and he needed to know there was a happy safe ending for us. I told him not to worry his baby was peacefully sleeping and happy. He nodded and said "Good".

So I believe and my Dad reaffirmed that "happily ever after" does exist and is there for each of us. We just have to recognize it and not get caught up in a preconceived notion of what it will look like, sometimes "happily ever after" is not the size, shape, color or financial status we once envisioned.

Most Powerful Woman in the Nation

Who would that be? The power to leap tall buildings? The power to control the fate of the nation with just one phone call? Well that would be me. Yep, I am feeling pretty proud of myself right now. Who knew?

Dad and I were sitting in the living room mulling over life while we waited for the roofer to show up for our estimate. Soon Dad starts to make distressed noises. And our conversation goes something like this:
"Oh dear" Dad says
"What's up?" I ask
"I don't want to go back" he answers.

As this is out of the blue I am trying to figure out where we are, back to college, the army, his mother's, etc. And you can't just ask as I would look silly to Dad.

So, I matter of factly say "Then don't go."
"Oh I have to go" he replies.
"No, you don't, you are special, you don't have to do anything you don't want to do."

Just as I feared Dad looks at me like I have lost my mind. At this point I figure the jig is up.

Dad very seriously explains that he has to go back to the Army. His pass has ended and if he does not go back, he will go to jail. Now this is new territory to me as I have never faked a war before. (Dad attended atomic blasts in Nevada during the Korean War.) I don't have any spare atomic weapons laying around so I am going to have to do some fast thinking.

"Well Dad" I say. "We will just call them and quit."
"You can't do that" Dad says scandalized.
"I can." I reply matter of factly.

So I pick up the phone, press some numbers and begin the following monologue.

"This is George Jackson's daughter. (pause) Yes, his social is xxx-xx-xxxx. (pause) He is a Corporal (pause). Well, he doesn't want to be in the Army anymore. (pause) Yes that is right. (pause) Well, thank you very much. Please send all final paperwork or his belongings to our address. (pause) Thank you.

Then I turned to Dad and said, you are out of the Army. Dad looked at me and said "Well I guess I will take a nap then." And off to bed he toddled.

Mother's Day

With Mother's Day approaching I have naturally been thinking about my Mom and how the torch of caregiving was passed on to me. My Mother and I always put my Dad first, if a choice had to be made, Dad won. All my life. This is not necessarily a bad thing, just something I have come to see.

One of the most salient examples is caregiving itself. My Dad had a heart attack and was in the hospital and he was very ill. Unfortunately, at the same time I became ill and had to be hospitalized. My poor Mother didn't know where to go. She knew she was going to be at the hospital, but which room? Bet you are dying to know how it resolved itself..........

Okay. After a day or so I began to feel a little better and explained the situation to my nurses. I asked to have my IV removed or at least heplocked. (You know, when they disconnect you from fluids but the IV is still in place, just in case.) The nurse agreed and I moved in with my Dad! Yep, I went down to the unit where he was (it was an in between unit, not ICU but not regular) and took up residence in his chair. The resolution seemed so clear to me. Mom cannot be in 2 places at once and Dad could not move, so I did. I left the room number with the nurse and if the doc or the nurse needed me, they came to me in my Dad's room.

A week or two later my Dad was still very ill and I had to have an operation in a different state. It never occurred to me that my Mom would come with me. I made the flight arrangements, hotel for a day prior to the surgery and a few days after to recuperate before flying home. Little did I know my Mom was beating herself up for not being in 2 places at once. Silly caregiver.

Believe it or not, a couple of years later we were in the same place. Dad could not stay alone and Mom had to go to another state to investigate a liver transplant. I knew I couldn't leave my Dad alone, but my Mom was supposed to go to the appointments with her "support person". Now it was my turn to beat myself up for not being in 2 places at once. What was I going to do?

Well, people in your life amaze you. I may not have blood sisters but I do have heart sisters. One of these beautiful women stepped up and took my place with my Mom. Neither my Mom nor I could ever express our gratitude to Ca'Trena, but I believe she knows. I also believe she knows how important she has been in both of our lives. My Mom came back with funny stories of the hospital with Trena. There are times when only family are allowed, but no one has ever questioned that Trena is family. She may be a beautiful, tall, black woman and we may be small white women, but we were solidly family.

And yes, Trena, you did remind me that I have grossly under-represented your contributions, so Happy Birthday and I love you, unconditionally. You stepped up when I was lost. You supported me during the crazy times and helped me to get my act together to take care of my Dad.

But what I want to say, is caregivers are so good at punishing themselves with:

• If only I had......
• I should have........
• I wish I had........
• What if I had............
• I could have done _________ better.

Those thoughts can drive you nuts. Not only drive you nuts but eat at the strength you use to "get through the day". Not every moment of caregiving is glorious, sometimes it stinks, and if you punish yourself with those thoughts you are ultimately cheating your loved one. Forgive yourself, move on and remember none of us are alone.

Caregiver's Anthem

To the tune of "I Will Survive"

At first I was afraid
I was petrified
Kept thinking I could never live
Without you by my side
But then I spent so many nights
Helping you to hold on
And I grew strong
And I learned how to care
And so you're here
Not somewhere else
I care for you with all the love
I have to share
I am so glad you are with me
And I don’t have any worries because you’ve shown me how
If I had known in the beginning
What joy this would bring

Know your life still has meaning
Just look around here now
'Cause you're so very loved
I thought I would hurt helping you say goodbye
I thought I’d crumble
I thought I'd lay down and die
Oh no, not I
I will survive
As long as I know how to love
I know I'll stay alive
I've got all my life to live
I've got all my love to give
And I'll survive
I will survive

It took all the strength I had
Not to fall apart
Kept trying hard to care for you
While sharing joys in my heart
And I spent oh so many nights
Just feeling sorry for myself
I used to cry
But now I hold my head up high
And you see me
Somebody new
I'm caring for you because
I’m still in love with you
And you are not a burden to me
And you love has set me free
But now I'm using my caring
For someone who's been loving me