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!