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

but 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?