Greetings from Juneau, Alaska!!!!

I and a team of the most amazing folks have traveled to our capitol to speak with our legislature about senior care. This is quite the accomplishment considering the unique geographic properties of our state. First, there are no roads into our capitol you must fly or come be ferry. Second, this year we had some weather………….challenges. I arrived Friday night just in time for snow, bitter cold, winds gusting to 80 mph, did I mention cold? Shivers To be honest, I was actually concerned that the rest of the team would not make i. But sure enough, Sunday afternoon in trooped my “Battle Buddies”.

To be honest, Sunday afternoon was spent with great food, good friends (new and old) and lively conversation. The energy that flows is almost visible. Each of us is equally passionate about what we do. We have representatives from, adult day care providers, nursing home (we have one), assisted living facilities, caregivers, Alzheimer’s Resource Agency, and so many others. It is so exciting.

I am now one of the veterans, as I have participated all 3 years we have done this. We are hopeful that our requests will be heard, thoughtfully considered and maybe even moved into the budget. As AGENET, we are asking that our Medicaid reimbursement rates be increased as they have not seen an increase in 10 years. The state is actually conducting a survey to review our programs, make suggestions for a one time “catch up increase” and then establish a methodology for reviewing and revising the rates annually. This is exciting stuff for us.

We are also requesting that the language in our Medicaid waiver be broadened to include a stand alone diagnosis of Alzheimer’s and related dementias. Again, huge! The beauty of this piece is we are also very concerned about folks with traumatic brain injuries (TBI). Our current ruling, says if you are not physically unable to perform the activities of daily living (ADLs) you do not qualify for the waiver. This waiver provides free care for our loved one for some of the following services, respite, care coordination, medicines, physicians, hospital care, durable medical equipment, chore services and personal care attendants (PCA). As you can see they is a gap in our current system and those that cant remember how to dress themselves but are physically able to do it; do not qualify for these services. We found by reminding the legislature that our Pioneer Home (only nursing home facility in our state) would benefit from the change.

Oh the Senators and Representatives blustered, once they ran out of steam we reminded them that if we broaden the definition (so to speak) we also be able to recoup monies for those already receiving state funded care. I swear, you could see their ears perk up and I was afraid one might injure himself his neck swiveled around so fast. We explained that by broadening the definition and allowing those folks that fell in the “gap” to enroll, we would be recouping monies from the Federal government. See the feds pay a percentage of the Medicaid bill for the state…..so if we could now add folks already in the home and receiving state funded care, we might actually enroll enough folks to have a surplus in federal money. They have commissioned a study and it looks “promising”. WHOOT

And finally, my favorite FACES. Cute name, hmm? FACES stands for (Family and Community Elder Supports). In our state charter, the state identified that the state did not choose to have build nursing homes but to keep people at home. Under that direction, the state provides grant funds for in home and community programs that assist families (like all of ours) to keep our loved on at home. I am talking about, meals-on-wheels, transportation, adult day care, education for familes, respite, PCA, chore, etc… It goes on and on. These programs have also been flat funded for 10 years. So we are going in with guns blazing and asking for 1.5 million for operating and 2 million fr capital improvements.

So at the time of writing this I am preparing my remarks to testify before the Health and Human Services Committee and then a meeting with the governor’s budget liason (this is the woman that actually writes the governor’s budget). Hopefully, we will be able to move the committee and the governor to find the funding for these increases, we certainly know they are effective and under funded. I will leave you with one number that I will share with everyone I can today. The In-Home-Grants costs about 700/year to support the family caregiver. Our nursing home, 20k a month with a total budget last year in the neighborhood of 60 million. So keep everything crossed and I will let you know what happens………

Retrospection

I miss my dad.  I miss caregiving, somewhat like a parent that misses teaching their kids to walk.  Every day it comes back in waves.  Mostly nice pleasant waves.  Memory and time has made it all seem so rosey.  I am now an hr manager and find it amazing how useful our dementia journey was.  Not a day goes by that I do not meet someone in crisis.  Recently I had a coworker tell me how ill her father is.  We talked about the fear frustration and sense of incoming doom.  We described it as being rooted on the beach watching the tide roll in.  You see it.  You know it is coming.  Nothing you can do but wait, bargain with the wave, deny the wave, be angry with the wave and the accept the wave.  Sound familiar?    In case you missed it those are the stages of grief.  But they are not just about grief they are about faith and change.  Faith and change?  Yes.  We as caregivers have to accept that change is inevitable and have faith the wave is coming and it will not destroy us.  The wave comes in and rocks us, the water boils around us, creeps up our body and we are mired in the sand.  We have no escape but most importantly we saw the wave coming and held our ground and when we stared it down it did not consume us.

So go to your personal beach.  Take stock of the wave and prepare to stare it down. And when you are safe and dry and warm and you meet the future survivor struggling to their beach stop and share their load.  Sit on their blanket share a meal a drink or a moment.  Lighten their load if even for a moment.  You will both benefit.

Alzheimer's Legislation

I wanted to take a minute and let folks know about 3 pieces of legislation we have pending in the United States. Even if you are not in the United States you may have similar programs. I would actually love to hear what you think about them or similar programs.

We have the Alzheimer's Breakthrough Act. This will allocate 2 billion dollars to the National Institutes of Health for research on Alzheimer's. What I love best about this bill is caregiving is included. It is not just prevention and treatment but....gasp...caring. *cheers*

The second is ADD CAP (Alzheimers Detection Diagnosis Care and Planning). This bill would bundle Medicare services to provide the gamut of services to increase diagnosis and assist with the care and care planning for your loved ones. As caregivers we know it is not magic, the caregiver fairy does not magically sprinkle caregiving fairy dust. It is thought, care and planning and sometimes elbow grease and hard work. We love it but we know it ain't for the feint hearted.

National Alzheimers Project Act. This would create an inter-agency office that would coordinate the federal government's efforts in the campaign to end alzheimers and assist caregivers. What a concept a plan.

I just attended the Alzheimer's Action Summit and am excited and ready to work for all of us. I may not be actively caregiving at the moment, but every day I think about my experiences and your experiences. You are doing an amazing thing. Your loved one appreciates it and you, even if they can't express it. I know my mother had such guilt about her impending death, she felt awful leaving me to care for my dad. Mom's always worry. She was so busy worrying about what I was going to have to do in the future, she could not say thank you for being with her while she was coming to the end of her journey. But you know what, I know she was glad I was there. Those last hours when we held hands and she would not let me go, I know she needed me there and I needed to be there. There is no greater way to say I love you and thank you.

Not his choice

My Dad may have passed away over a year ago, but it is still all so fresh in my mind. I can picture him, the sounds, even the smells (good and bad ones lol) still. I love my Dad as much as ever and I am grateful for the experiences I had.

I have said this before and will again as it bears repeating, caregivers are everywhere. I cannot go anywhere without running into one. We talk. We share war stories. We share successes. We help one another deal with the 1001 questions and feelings caregivers have about caregiving.

My mantra at times was not his choice. I saved this for the special moments. Those times when I was tired, frustrated, lonely and sometimes angry. Because of the lessons I learned from caring for my mom, I could catch myself headed down the path of anger and frustration as it only led to a dark hole. Sometimes I would take myself by the hand and say not going to go there today. Right now we will go over here and rest.

Over here was not his choice. Did my Dad choose to be sick? No. Did he want to be sick? No. Was he frustrated with it? When he was lucid he was. Was he scared? God yes. Was this place in our lives going to last forever? No. Was I willing to let a stupid disease steal what was left of my Dad? Hell no. Then I would get feisty and often would see my Dad and I as 2 punch drunk boxers back to back fighting off the enemies. Sometimes the enemies were physical but most often they were emotional.

Feb 2008??

Wow, have I lost track of time or what? I have been so busy with everything, this kind of fell through the clocks. Once again, I can suck it up and say I am sorry and move ahead or I can wallow in guilt and flog myself on a regular basis.....choices.......choices

Last winter it was my health that seemed to dominate the health front but that has been resolved and back to Dad.

So much to tell. First is the spot story. While helping Dad dress I noticed traces of blood in his underwear and became concerned, a urinary track infection could really muck up the works. I gave him some cranberry juice and continued to examine and find trace blood. I noticed it was on the edge and not the middle and realized what I had to do. I had to look. Examining my Dad's genitalia is always a tricky thing for he and I. Sometimes he thinks I am my mom and thinks I am feeling amorous, ewww ewww ewww. So I snap on the gloves and get very medical hoping he goes with the "professionalism".

I noticed a black very funny looking mole thing right next to his scrotum. One of the concerns we have since Dad was nuked during the Korean War, is skin cancer. So I called the VA for guidance and an appointment. Somehow, I ended up with their phone triage nurse. I explained the situation and was met with silence. Getting frustrated I asked if she was there. She said yes and then nothing again. I then ask if she had advice for me. She said not at the moment, she had questions, like why was I looking at my Dad's groin.

Engaging my brain before my mouth, and out comes "Oh my god, she has no clue." Not the most tactful way to start a conversation. She became insulted and wanted to talk to my Dad, I briefly caught her up to speed and told her to read some of the notes in his file on her computer. It was decided that I would bring him in the next day. It all seemed so backwards to me, why was she more concerned with our relationship than his health? I was stumped and then I realized, although she is a nurse she has not been a caregiver. She functions from a professional side while we function from and with our hearts.

Lost in the shuffle

With the holidays, a daughter in college and making myself sick with worry it has been a busy few months.

The holidays were lovely, Dad especially enjoyed Thanksgiving. He could smell the turkey cooking and see pies and knew something reallllly good was in the works. I remember the rules at thanksgiving when I was growing up. The table was set with the "good china and silverware". Celery stuffed with cream cheese, pickles and olives came on the table first. With dire threats to our health if we should eat ANYTHING. Dad and I would circle the table filching something with every pass. I am sure my mom knew what we were doing, just choose to ignore it. lol

This thanksgiving was a little different. We ate earlier, the rules were disbanded and we ate well and often. Dad enjoyed every moment.

Christmas was wonderful. My collegiate daughter came home and the family was whole. My Dad was so glad to see her. He kept looking at her and asking who she was. not the normal welcome home for the prodigal daughter! My daughter, a savvy caregiver in her own right recognized that he was glad to see her and was trying to place her in the family dynamic. She would explain and tell him about college. They agreed that both of them being home for the holidays was terrific.

Then we had dad's birthday. We had a lovely party at a restaurant that makes a fuss over the birthday boy. An icecream sundae and a song were his. He stood and waved to his adoring fans and laughed. Could not have been a better response. We called his sister and she and dad had a lovely chat. Stella (his sister) filled him in on who had died, how old everyone was and did an amazing thing for me....told him he was to stay with me and that I was taking good care of him. Boy, did I need that stroke.

With the hustle and bustle of the holidays, I had lost sight and my conviction. This created stress in our home, which increased Dad's agitation and sundowning reared its ugly head. So a little self talk, a trip to the doctor (for me) and a little time off for good behavior has helped.

I am using my time off wisely. I am in Juneau, to talk to our legislature and request additional funding for grants that support in home care for our seniors. The idea is, caregiving is tough and requires sacrifices (duh) and the caregiver needs help, be it chore, respite, pca.......... If the caregiver has this support they can care for their loved one at home for a longer period of time. And that is my goal. So here I am in Juneau, Alaska waiting for my appointments to start in 2 days. In the meantime I will eat, sleep, write my testimony, sleep some more, read a book, watch a movie and go for a walk. And to be honest, the weather has turned bad, cold and strong winds. muahahahah. So walking may be out. I may just have to sleep, eat, read, write and watch movies............Oh my goodness I am a decadent girl!

Caregiving is Universal

I had the most amazing conversation the other day. I play a silly online game, not going to share the name as you will all fall off your chairs laughing and sue me. Not really, but just to be safe, fasten your seatbelts.

First you have to understand something about me. I am a pacifist. I hate guns and violence. Intellectually, I know they are necessary….but ya know….intellectualism is not all it is cracked up to be. So I shudder and wave at the nice policeman and think to myself, thank god that is not me. Then the war started and no matter what I think about how or why, I know I love those soldiers and wish them the best. I also know they are someone’s baby and the people we are fighting are also someone’s baby.

So while merrily going along and playing my game I made a friend. At first you don’t share much, just play the game together. Then as you run into one another more and more, you begin to talk. I learned he is a soldier and in Iraq. I cried. I could not deal. I ran away. And he let me.

Soon, we ran into one another again and we chatted again. And he told me about being in the army and being in Iraq. We started to share and I realized we had the same story to tell. Okay, not identical, his is much more dramatic; but so many similarities.

Soldiers on the front lines have problems sleeping, like caregivers they are waiting for the “bad thing” to happen. None of us know what it is and cannot prepare for it, but we know it is out there.

Soldiers form attachments to one another. They share a bond, a common experience, that others can appreciate, but never truly understand. Caregivers are similar, we immediately feel that connection with one another and understand.

Soldiers have survivor guilt. Need I say more? Caregiving is fraught with guilt, we don’t do enough for anyone, but we do all we can. We set ourselves up for failure.

As I talked to my friend about his experiences and my experiences, the differences melted away; and I realized we were taking care of another. It was more than a support group meeting. This was someone isolated, alone and under pressure reaching out for someone to love them and say “Good Job”. And then I realized, that person was me. So there we were, a 40 year old woman who is afraid of guns in Alaska and a 25 year old professional soldier in Iraq. Reaching one another, healing one another and we never even met. Who knew?

Been too long

I have been away for so long. Not physically, just mentally and emotionally. Just seems that end of the summer took me away.

We have hit on a new complication to dementia. Relationships within the family. How do you keep them alive while dementia is ripping the fabric of your life. Sounds ominous....... But it is where my head has been.

Kids
My daughter has gone to college. I took time, flew across the country and helped get her established. Walking away that last day was one of the hardest things I will ever do. Cried all the way off campus. Faculty would nod and smile and whisper "There goes another freshman parent." I know I left her in a good place with great people......but my role as her caregiver/parent has just been greatly reduced. Now my role is ATM/cook/laundry goddess.

Dad
His dementia is increasing. But his health is strong and we can look forward to more years together. All that is good stuff. But he has started choking. Of all the gifts dementia has given me, choking is the one I appreciate the least. Choking leads to pneumonia which leads to hospital stays which leads to............ We just won't go there.

Spouse
I am just tired. Very tired. Which makes it hard to be a caregiver for my spouse. I see his list of wants/needs and find it hard not to shriek... How do I say do your own laundry for a change, can't you see I am ______________. But no, I do it and I smile and I add it to the list of grievances.

So, who has been there? Haven't we all felt that way one or more moments. Well, feel the pain, acknowledge it and move on. We cannot wish caregiving away. We have accepted this role. Remember we do it out of love and a sense of duty. But we CHOOSE to do it. This is where the buck stops.

So take your moment. Have your pity party (with icecream even) but move on. If you don't push through it, you will be stuck with it. And I choose to push through and get to the good stuff.

Novel Long Term Care

I heard a debate on the merits of long-term care. We all need to have a plan but the growing epidemic of those needing care has clearly shown that plans of the past are inadequate. They either were not inflation proofed or didn't cover in home care. So feeling little sad I began to ponder various plans hoping for inspiration. Well it hit....

Long Term Care the Carnival Way
This plan has so many upsides that the downsides seem negligible. You get on a cruise ship, who cares where it is going and just don't get off. You cruise through various designations. You will have maid service, meal service, an on-physician, companionship and on-board clergy should you perish. What more can you ask for? You don't have to put up with your children or neighbors. You have a staff at your beck and call 24/7. Nice, huh?

Prison
This option is not for the feint of heart. First you would need to do a little research and find the nicest prison, don't want to go to a yucky one. You know, the millionaire beach club jails. Commit a little crime and wait for the police to show up. Don't resist arrest, you might get hurt. And allow yourself to be taken to prison. Meals, exercise, companionship, medical care and educational opportunities. The trick is finding the RIGHT prison.

Federal Witness Protection Program
This is the toughest of the programs as it requires some real planning and excellent timing. First become friendly with the local mafia don. In NJ, this is fairly easy, for those in the midwest you might need to do an internet search or relocate. Make friends, hear a secret or two and then call the Justice Department. Volunteer your services (and if you don't have the real goods fake it) and suggest your placement in the program. Voila!

Caregivers are tough cookies

We are mortal and frail just like everyone else. No you say? Heresy? I think not.

Because of the nature of our the lifestyle we have chosen, most of us develop Superhuman Tendencies. We expect ourselves to be on call 24/7, keep an immaculate house, cook gourmet meals, our outfits match, our make-up perfectly applied and our loved ones happy and healthy. In our spare time we should garden, run errands and by the way have a personal appointment or two. Does any of this sound familiar??? I thought so.

Guess, what? You cannot do it all. I recently had an eye opener at the dentist. I had a tooth that was bothering me and I realized that it had been awhile since I had been to the dentist. While in the chair, did I mention I hate the dentist?, they discovered I still had my wisdom teeth, did I mention I hate the dentist and a big old cavity. Long story short I found out I need to have my wisdom teeth extracted and the other tooth as well.

While trying to schedule the next appointment I realized I would have to wait 2 weeks, because my slots were filled with kid stuff and dad stuff. Then I realized that I may be medicated and start asking the questions. How much medication will I need? How long to recuperate? How soon can I talk? And then I explained that I could not be out of commission. The dentist looked at me in shock. I don't think many patients say, the earliest opening I have is at 2 pm, 2 weeks in the future. I then said, if it takes longer than a day, I am not going to have the procedure done.

The dentist talked me down and I realized I was being a little unrealistic. But what if I were sick? What if something happened to me? This thought is scary, because it is no longer just about me. Yes when you are a couple or a parent, it is not about just you. But when you are a caregiver, just you no longer exists. And in light of that many of us err in the favor of our loved one. Our appointments wait, our time for ourself waits, everyone else comes first.

But, I have come to realize this is not the best method. That is the path to guaranteed burn out. We HAVE to take care of ourselves and sometimes put us first, in order TO care for our loved one. By taking time to care for our needs, our appointments, our health we are prolonging the time we will be able to care for our loved one. Isn't a few extra months with our loved one worth a check up, a wisdom tooth extraction?

On the way to bed the most interesting things happen

Funny how it works that way. I don't know what it is, but when Dad is tired it all goes haywire. The past, the present, hallucinations and dreams all mix together in one fuzzy landscape. I guess you could say dementia is where the line between reality and fantasy blurs.

This morning Dad woke up in full sundowner mode. The whole deal anxiety, disorientation, fear determination to complete the mission all at the same time. This morning it was my Grandmother. Dad thought he "abandoned" her in the car. (She has been dead for years and her cremains are in his bedroom waiting to go to NJ). I tried everything but nothing was working. I realized I was going to be late for work. I guess I forgot to mention that I was in the shower getting ready for work when this all began. My first priority was to deal with it dry and clothed.

Finally, Dad suggested that she might be home. I seized the opportunity, grabbed the phone and called my boss. I explained that it was me and I was so glad she (my grandmother/boss) was okay and answering the phone. I asked Dad if he wanted to talk to her and he said no. I then said I would be leaving for work soon. This ploy killed 2 birds with 2 stone. 1 calming Dad down and 2 telling everyone I will late.

I sat in Dad's room and waited for him to go to sleep. I sat quietly watching him fight sleep. Finally he looks at me and asks where everyone is. Reassuringly, I explain this is my house and we are all here. He looks around with astonishment and says, this is YOUR house, why did you buy a factory? You own the whole thing? He was amazed at my good fortune and bad taste simultaneously.

I explained the workers were in the factory part, but we lived in the dorm. Satisfied he drifted off to sleep and I went to work as fast as my little car would take me. So many times going to work is less than.............the glorified existence we dreamed of as youngsters, but today it sure beat the running herd on the factory workers and the domestic front. I guess you could say work is my respite. How often do we get to say that?

It is not about me

I think one of the toughest challenges of a caregiving is having to care about things you really are not interested in. How is that for a little honesty?

Think for a minute, our loved one led a life that was separate from ours prior to needing help. We each had our own circle of friends, activities and interests. For instance my husband loves chess, if he were to need my care it would be important that I play chess with him, take him to chess activities, keep him involved in chess for as long as possible. And let me tell you, that would be a life sucking endeavor (for me) (sorry chess-aholics). Now if I were the one to need care, my husband would need to take me knitting. I would want to go to the yarn store and suck up the atmosphere, feel the yarn, talk about knitting, hang out with the knitters; which in turn would be grueling for my hubby.

But once our loved one passes into our care, their passions and past times must become a part of our life. It is this connection with their former self that helps keep their spirit alive. I have said it before and I will say it again, anyone/anywhere can keep our loved one's shell alive (the body) but it is our unique connection with our loved one that keeps THEM alive.

A Unique Twist

Now this has happened in the past but it is happening more and more frequently. Dad is lonely and I am struggling with finding new ways to combat his loneliness. This is kinda tough when your short term memory is shot to hell. Not to mention Dad is confusing me with his sisters, his mother and his wife. Now being his sister or mother is relatively easy, but being my Mom has its challenges.

For instance Dad is lonely and wants someone to sleep with. I bet you know where I am headed and it is a slippery slope. When Dad gets sleepy he wants to know where he sleeps and when I will be coming to bed with him. He is not being inappropriate as he really thinks I am my mother and it is perfectly appropriate for us to sleep together. But I know I am not his wife and my reaction is

1. Ewwwwwwwww
2. I am a dirty girl.
3. Ewwwwwwwww.
4. Distract him Debbie, distract him.
5. Ewwwwwwww.
6. We have now entered the ice cream emergency zone. Get the ice cream STAT.
7. Ewwwwwwwwww.
8. Did I say ewwwwwwwww?

I have learned how to handle it though. I casually say "I am Debbie your daughter and that would be icky." Note the technical term there, icky. The key is I cannot react. If I react (the way I want to, which is to run screaming in the other direction and finding a psychologist) he will become upset and realize something is off. If I calmly say no and reinforce who I am, all goes well. And once Dad is in bed, I hit the ice cream HARD.

Memory is a tricky thing

Last night Dad remembered that he had been married and his wife died. Up to this point I eagerly looked for those lucid moments, those moments where he was there. Yesterday he came through for me, but with a sad memory.

I told him about my mother's death and how he came to say goodbye to her at the hospital. I explained how his dementia caused him to roll with one of life's biggest punches, the loss of your spouse. He asked me if he grieved. I was stumped. What I finally went with is, explaining that his dementia caused him to be very matter of fact. I explained that he went in and held her hand. He stroked her arm. Felt her hair. Then he looked at me and said "Hmph, she is already cold". I explained that his dementia allowed him to fast forward (so to speak) through the grief process.

Was I right? Has he really gone through the grieving process or is it just beginning? I don't know. What I do know, is he is lonely and in a way that I cannot fix. I cannot find someone to share his bed at night. I cannot recreate a partner and a relationship that spanned 40 years. So what do I do now? How do we move through this new road block?

Well, we are going to talk about it. I am going to keep explaining his dementia. I explained that I had newspaper articles about everything that has happened, and he told me not to show him the articles, it was too much. So I know tempering what I share is the right path, but how much is too much and how much is not enough?

There is no right answer and there is no quick fix. When my Mom died, Dad lost his partner in crime, his life partner, his business partner, his...........partner. The trick is going to be reconciling this loss with someone who has no short term memory left. He cannot turn events, thoughts and words into long term memories. Like all else this will run its course, I know that. But this is where the caregiving begins. This is the "Big One" or as presidents might say "The Mother of Caregiving Dilemmas". This is where I will earn my caregiving stripes. The question is am I up to it?

A group of 2 is all that is needed

Support groups come in many forms, the formal ones we join, lunch with friends, dinner with families and even..............at the grocery store. Maybe it is just that I am more aware of the numbers of caregivers because I tell you they are everywhere. There is no prototype or stereotype, they come in all shapes, sizes, colors, genders, ages......every possible combination has a caregiver and someone needing care. It is one of those gentle miracles that we can miss.

How many times do you go to the grocery store and not talk to any of the employees? How often do we mechanically greet the kid at the counter with the nose ring? As you shop for that new pair of pants do you avoid eye contact with the employees? I know I am very guilty of it. Just get me in and get me done. Well once again I had the karma kick me in the rear.

June 5 is the anniversary of my mom's death. This is still a hard day for me. I doubt I will ever not associate the date with her, but it is getting easier. I almost didn't cry this year. To celebrate her life I bring ice cream to our local firemen as they took her for her last ride. So in the early afternoon, I go to the grocery store to buy supplies. My order was hilarious to an outsider but caught up in my woes I couldn't see it (you know the whole forest for the trees thing). My order consisted of

• 2 half gallons of vanilla ice cream
• 1 half gallon of coffee ice cream
• 3 half gallons of chocolate ice cream
• 1 half gallon of strawberry ice cream
• 1 jar of chocolate sauce
• 1 jar of hot fudge
• 1 jar of caramel
• 1 jar of cherries
• 1 Diet Pepsi

Can you imagine what it looked like? Well the lady in front of me at the register found it very funny indeed. She kept watching as I unloaded on box after another of ice cream. Finally, she cracked. She told me it looked like I was having some party. I thought for a minute and proudly said "Yes I am". I explained who the ice cream was for and why.

This unbelievably put together woman, I mean she had it going on. Shoes, hair, nails, clothes all of it, loses it right there in line. She chokes up and shares that she lost her mother in February (4 months ago at the time of this writing). Immediately, we had a bond. We knew we had been in the same place and were both coming out of it. What a blessing. We talked, we hugged and we both left the grocery store with a little more than we planned.

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.