Friday, March 30, 2007

The sweet predictability of dementia

One of the things I have learned about dementia, is there is a predictability. Yes, that is a nice of way saying "He does the same things over and over again", but it is more than that. Not only does my Dad ask the same questions over and over again, there is a pattern to when they are triggered.

For instance, if I meet my husband at his work to pick up Dad we drive by the animal shelter. We now go through a routine conversation:
"Look Dad there is the pound. Want to go look at the animals"
"No way" he says emphatically "You'll just bring home another cat"
" I know Dad but the 3 of them are getting along so well we need to mix things up"
He laughs and says "You have 3 cats. No wonder they are everywhere"

We do this every time we go to my husband's work place. This is another opportunity for me to learn how to communicate with my Dad. I could avoid our conversation (because I know how it will come out). But instead, I relish it. I know we will have this wonderful give and take. I will talk, Dad will respond, he can actually follow this conversation! This is huge as his short term memory is so shot it is hard for him to follow his OWN sentences, let alone the give and take of conversation.

My Dad's disease has taught me so much about my Dad, my life and what is important. Again, the conversation itself is not what is important, but the time we had together laughing about my cat collection. Just look at the joy and the wonderful moments I would have missed, had I said, "oh no, don't go by the pound because we will have to talk about cats, AGAIN". Now, I try and find a way to actually drive by the pound.

Monday, March 26, 2007

Check your ego

Caregiving is an enterprise that does not allow us to become smug. A smug caregiver is not an aware caregiver. Come on, admit it, sometimes you just feel good about what you are doing. The sun is shining because you are doing something worthwhile. The birds chirping outside the window are singing (or tweeting) your praises. If there were water on the ground, you might be tempted to try and walk on it. We have all felt it, when everything just goes smoothly and you are on top of your game.

Guess what? It is not going so well because you are the hottest thing out there since sliced bread. Nope. It is going well, because of your loved one! Yep. Think about it for a minute. We put processes and schedules together not for us, but for our loved one. It is not about us, it is about someone else. It is about loving someone else so much you are there for them. They may not be able to tell us, they may not be able to show us in conventional means; but they do you just have to know where to look.

So take the strokes from family and friends. Enjoy your role as a caregiver. You are giving an amazing gift to someone, but you are receiving too. Remember to thank your loved for allowing you this special time with them. Give them a kiss or a hug and tell them what this means to you.

Sunday, March 25, 2007

Long Time No Hear

First of all, sorry I have not been around for awhile. There have been a few developments both on my blog and at home.

Someone hacked into my blog and has made it difficult for me work on it. (pout) I don't know who the person or persons are but let me tell you/them, I do not appreciate your interference. This is not a money making enterprise and there will be no financial reward for you. Any psychic reward you may be after is at the expense of a few folks trying to hold one another up while we go through some unusual life experiences. You would probably get more enjoyment messing with someone with a little more computer knowledge and allot less vulnerable. (It is not fun to kick puppies, much more challenging and rewarding to pick on a big dog.)

Off the soapbox and back to caregiving. I just returned from the National Alzheimer's Public Policy Forum, what an amazing experience. Tons of dynamic people all working towards a common goal, finding a cure and making caregiving easier. I don't like to think of myself as an "Alzheimer Only" caregiver. I like to take a broader view as we are all in the same boat. We have the same stresses, many of us are fighting battles with diseases knowing we are going to lose and we all love those we care for. Same, same, same.

And finally, my dog has liver failure. He has rallied but he has been one pretty sick little guy. We are talking to the pet food companies to see if there is a connection between his liver disease and the recent recalls.

So all in all it has been a busy couple of weeks and I have been negligent, I am sorry for any concern that I may have inadvertently caused. Also, rest assured this blog is not a whim that has lost its appeal or I have moved on. Quite the opposite in fact. I find myself now going about my day and thinking "Oh I should write about that". So hiatus over! I'm baaaaaaack.

Monday, March 12, 2007

Lunch Date with Dad

My husband watches my Dad in the morning and brings Dad to my workplace on his way to work. We have been using respite to avoid taking Dad out in the cold so it has been awhile since we have done the "switcheroo".

On our way home Dad said he was hungry and had to go to the bathroom so I decided to make a stop. We went to a small local Mexican restaurant to eat and potty. Dad and I sat and had a lovely conversation while waiting for our food. He thought we were in Mexico and was amazed at the wonderful English everyone in the restaurant spoke. He was also amazed that they all looked so.....American. I expressed my amazement as well.

I realized Dad was really enjoying being out and that it had been a while since he and I went out alone. He said over and over again how nice it all was. (See another upside of Alzheimer, not only do the questions repeat but so do the compliments!) Realizing I have been remiss on his outings I suggested going to the Senior Center on Wednesday. He looked at me and very indignantly told me "he was NOT ready for that'. I said "OK" (just as emphatically).

Trying to convince him it would be a good idea, I suggested he could go and meet a woman. He explained he was not interested in any "old broads" (I guess feminism has not happened in his timeline). I suggested finding a "Sugar Momma". He told me any woman he was interested in would be moving too fast for him. I said then she could easily "catch him". He looked at me and very seriously explained that she would "whizz by him" and he had no hope.

Well, the whole conversation just struck me as funny. There were are having this lovely lunch. Half the time he thinks I am his sister and the rest of the time he thinks I am his wife. The WHOLE time I am trying to talk him into a little feminine companionship. I was so clearly reminded of one of the biggests lessons I have learned from caregiving. The actual content of our interaction doesn't matter, the facts/the figures are irrelevant, what does matter is how my Dad feels about it. If we had fun and laughed he goes away at peace and happy inside. If I spend the time correcting him on facts/figures/manners he goes away edgy and unhappy. So what was the goal of our lunch? (besides eating some yummy food) To enrich my Dad's life or another opportunity for me to lecture? I choose enrichment.

Thursday, March 8, 2007

Can I take it pass/fail

When I was in college (a gazillion years ago or 20 give or take a few) we had this lovely option of taking one class pass/fail a semester. I did not discover the joys of this experience until my Junior year (I think I might be slow). But once I did I liberally partook of the experience. My dreaded Geology (science requirment) PASS. Russian - PASS.

Now that I am no longer in school, grades and pass fail no longer seemed to be a part of my life. But then a fellow caregiver mentioned that sometimes he feels that taking his beloved wife to the doctor feels like a Caregiving Final Exam (I am a little liberal here with the wording, but I have the spirit I hope). We take our loved ones in and there are blood TESTS, physical EXAMinations, eye TESTS, etc. You get the gist.

I always knew I felt a little anxious about the doctor's visit. Am I going to measure up? How am I doing as a caregiver? The results of those tests on our loved ones become milemarkers and ways that we measure or success, or lact of success as a caregiver. What stress we put on ourselves! I did not even realized that I looked at these visits so critically, as a measure of my performance until I heard someone else verbalize it. And wham! It hit me between the eyes.

But now I have thought about it and realized life is about little tests and not just for us caregivers. Here are some examples:
  • I have a job, (failing there is called getting fired).
  • I cook for my family (failing there is called food posioning)
  • I have friends (failing there and you become a social pariah)
  • I knit (failing there is called adding a desing element)
  • I love cats (failing there is becoming the weird cat lady with 30 cats)

So yes, as caregivers we can strive for straight As on our report card (lab tests, etc) but ultimately our success is measured by our loved one. Are they as happy as we can hope for, as healthy as we can reasonably expect and as safe as we can make them? If so, then celebrate that success. Celebrate this time with your loved one. Celebrate the "us" that has been newly carved in your life and their life.

Tuesday, March 6, 2007

It is lonely at the top

Here is a big one for those of us privileged to care for our loved ones.........loneliness. Yep, I said it, L-O-N-E-L-I-N-E-S-S. We all feel it. And we all learn how to deal with it. But that path to learning how to deal with it, is uphill both ways (just like when your parents walked to school) with big ole boulders that have to be climbed in order to continue on the path of acceptance. Some of those boulders are:
  • Acceptance
  • Fear
  • Isolation
  • Shame
  • Is it really worth it to go anywhere, do anything?

Yes it is. Making the effort, getting out there allows me to feel connected with my peers. I feel less isolated and the loneliness begins to fade.

I remember and count my blessings, I had 30 plus years with loving supportive parents and this is my opportunity to care for my Dad. The loneliness is replaced with a feeling of peace.

I interact with my Dad on his level. We play cards. We start out playing poker and mid hand it becomes gin and then we finish up with poker again. No big deal, it is not about the game it is the moment. I etch that memory and the process of capturing the moment chases the loneliness away.

I sing with my Dad. Silly songs from my childhood. And every once in awhile, it will spark a memory and we can share a memory. That shared memory, that moment erodes some of the loneliness.

I am not perfect. I am truly far from perfect. But I have actively chosen to fight the gloom and doom of caregiving with positive thoughts and actions, with fun, love and laughter. I hope you can too.

Monday, March 5, 2007

Morning Routine

This morning I had a flash of wisdom or something similar. This morning while I was getting ready for work and getting the kids ready for school Dad woke up. This seems like a simple everyday occurence, which it was, but I started thinking and I realized every morning my Dad and I follow the same routine.

After a night's sleep most of us wake up a little groggy, need a few minutes to get our act together, have our coffee, whatever your personal poison, but it is that morning routine that gets us moving. Without that routine, the day seems, flat, unhinged, possibly even stressful, sound at all familiar? Well I finally realized every morning is like that for my Dad. He wakes up and doesn not know where he is or how he got there. How terrrifying! Can you imagine waking up in the Twilight Zone EVERY morning.

Unconsciously my Dad and I had established a routine. He wakes up and finds me, wherever I am (bedroom, bathroom, kitchen...). When he sees me he asks who I am and where he is. I would explain that I am his daughter Debbie. Now I understand that doesn't mean anything to him and he doesn't remember being married, let alone haivng a child, but I still say it. I usually tell him a story from when I was growing up or he was growing up as proof of our relationship. If I can get him to see that we have some common memories (my reminiscences are not memories but memories of stories) he begins to feel safe. He knows he is with someone that knows him and I have proved it with details of his life.

The second hurdle is where he is. I explain that this is my house and he lives with me. I explain that he has an illness that causes him to forget things and get confused and that is why we live together. At that point I usually tell another story, again reassuring him that we have ties and I know WHO HE IS. I also reassure him that he is loved and safe.

Thinking about these questions and answers I realized, he really doesn't care where he is or who he is with. He is asking am I safe? Am I with people who will care for me? Should I be anxious? I have learned that storytelling answers these questions that he doesn't even know he is asking. So tomorrow, I will tell more stories and I will remind myself that those stories create a safe place for Dad.

Friday, March 2, 2007

To pee or not to pee

I have not been feeling well. Seems like everyone I know is sick. But I was getting Dad changed today and he was a little fractious and I had to insist that it was better to be clean and dry and started quoting the Bard to amuse him. Here is what I started:

To pee, or not to pee: that is the question:
Whether 'tis nobler in the pants to suffer
The moist and cold of damp underwear,
Or to take arms against a sea of pea,
And by opposing change them? To change: to clean;
No more; and by a change to say we end
The diaper-rash and the thousand natural shocks
That flesh is heir to, when wet
Devoutly to be wish'd. To change, to clean;
To clean: perchance to dry: ay, there's the rub;
For in that cleansing what dreams may come
When we have shuffled off this wet clothing,
Must give us pause: there's the respect
That makes pleasure of dry and warm;
For who would bear the cold and moist of pee,
The caregiver's right, the dry man's happyy,
The pangs of damp garments, the chill of wetness,
The insolence of the wet and the odor
That patient denies a need of driness,
When he himself might his urine make
With a bare bum? who would object,
To grunt and sweat in a bathroom,
But those that change the wet,
The undiscover'd dampness from within
No caregiver shuns, it puzzles the will
And makes us rather bear those ills we have
Not seen as yet
Thus squeamishness does make cowards of us all;
And thus the native feelings of revulsoion
Is chased o'er with the vivid cast of love,
And changes of great volume and mass
With this regard our senses are awry,
And lose the smellof lysol - it cannot hide
The scent of urine, in thy pants
Be all my changes remember'd.

It is silly I know and a bit over the top, but it kept us amused!