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.