What to do when the caregiver is ill

I am sick, seems Dad gave me his cooties. So while I am writhing in a pool of self pity and noxious germs I figured, might as well share my good fortune with the world.

Yesterday I came home from work early and croaked to our respite lady that I was home. Dad looked and me and said "Hi Stella", when I returned the greeting, he looked alarmed and said "you aren't Stella". I laughed and said no, I am his daughter Debbie. I got a look but the respite lady trumped me with pudding.

I collapsed on the couch in a puddle of misery. Too soon, it was time for the respite lady to leave and I got up to crawl, oops, walk with her to the door. We talked with Dad for a minute and he was shocked that our respite friend was leaving. I think he was afraid to be left alone with someone as obviously incapable as I was. I tried to laugh it off and told my Dad that she was leaving the infirm and feeble to fend for themselves. He thought about it for a minute and asked "Who is infirm". I cheerfully croaked that I was most definitely infirm. He thought for a minute and said "Then I must be feeble". He shrugged and went back to his pudding with a big smile.

Adventures at the Division of Motor Vehicles

I lost my driver's license in my car. Sad isn't it? I have a cup holder and a little slidey door that covers it up. For some bonehead reason I put my license on top of the slidey thing and............ you guessed it. I slid it back and my license dropped into the bowels of my car. Knowing it is illegal to drive without a license I drove directly to my local DMV to replace it.

I am not sure what was going on, but the place was packed. Dad and I found a seat and proceeded to wait. After we had gone through the contents of the diaper bag, snacks consumed, magazines read, boredom set in. Dad began to look around and realized the place was packed with soldiers.

The soldiers were all very nice young men and smiled nicely at my Dad as my Dad stared at them. Soon Dad leaned over to me and whispered, or so he thought, it was more like a dull roar,

"Who are those people?"

I explained that they were soldiers. My Dad replied with "From what country?" I explained they were American soldiers and they were wearing a new uniform for the new war. BIG mistake. Dad became a little agitated and wanted to know what war. I explained that we were at war with Iraq. He looks at me very seriously and says
"Why would we be at war with THEM?"

At this point the soldiers cracked up and started sharing the story with others that had not heard. The whole place is laughing and Dad is oblivious to the riot he is causing. He again asked about the uniforms. I explained that back in 1950s during the Korean war, they had different uniforms (Dad was drafted during the Korean War). He looked at me quite seriously and said
"What do you mean BACK in the 50s?"

I couldn't help myself, I started to giggle and the place went nuts. I gathered my composure as they called our number and reassured my Dad we had not been invaded and all was well.

The nicest part is all the soldiers either spoke to my Dad or patted him on his way out the door. He felt warm and loved and they felt apart of something special. And it was special, because I allowed it to happen. I allowed my Dad to laugh, be loud, be outrageous, let him be who he is NOW, not who I wish he were or who he would be if he did not have dementia.

As promised..................

The diaper bag. Yes, the dreaded bag. Or at least it was for me. There was something about "going back to carrying that bag" that I dreaded and fought. Boy did I fight it. But after one gastrointestinal event at the store where I was forced to buy, disposable underwear, pants, socks and shoes; I got the bag.

Now here is an admission. I am a card carrying handbag junkie. Yep, I am one of "those" women that has a closet full money all in the shape of purses. I have all the boys, Louis Vuitton, Coach, Brahmin, Prada, Cole Haan, all the boys are represented. This is impressive when you hear I live in a town with VERY limited shopping opportunities. My girlfriends and I play "Name that Handbag", you know the old tv show, I can name that Handbag in 4 designers, I can name it 3, etc. Sad but true.

Once I became accustomed to the idea of going back to carrying a diaper bag, I realized a handbag shopping trip was required. Oh goodie, that is me, the eternal optimist always looking for the silver lining. So off I went and I found a lovely bag, unfortunately it was not quite right for a diaper bag, but was beauuuuuuutiful.

I finally settled on a nice backpack style bag. It is comfortable, allows me to hold onto my dad as it is hands free while still carry my fashion statement (or handbag). I love this bag. It is not the most expensive but it is soo practical and fits us perfectly. I have learned through trial and error the perfect "Dementia Bag" will contain:

1. Disposable underwear (at least 3 pairs as sometimes what you think is the main event, is just a warm up.
2. Socks, gravity my dear, gravity.
3. Pants, sometimes the underwear just doesn't hold everything it should.
4. A snack. Very important as you never know when the munchies will strike and I have used candy as entertainment. I was refinancing the house and you know how long that paperwork takes! Dad was with me and I would sign, unwrap a candy, hand it to him, sign, unwrap a candy, repeat.
5. A drink as the snacks can make you thirsty.
6. A shiny toy. Sometimes Dad gets fidgety, if I can give him some sort of one piece puzzle to manipulate it will keep his hands busy.
7. An appropriate magazine to read aloud with lots of pictures. Once I realized that Dad's short term memory is gone, so if I find a magazine issue he likes I buy a few and keep that one around.
8. A pair of glasses. These glasses are for comfort as he wears his glasses, but he likes to know they are there. I pull them out, show them to him and he is happy.
9. They have disposable lens cleaning pre-moistoned cloths. I keep a few in there as the snacks make our glasses dirty.
10. Breath mints, halitosis seems to be an issue these days.
11. Diaper wipes in a ziploc baggie, see number 1.

My Dad is not an arts and crafts kind of guy

He has never been a "joiner". He has always balked and ridiculed group activities. This had presented a dilema to me as a caregiver. How was I going to get this guy to participate in group activities, keep him interested, keep his mind functioning. Well, I wish I had the answer! I am laughing at my own ineptitude on this one! I have searched for the perfect activity, the silver bullet so to speak and I am still searching. But I will share what we have tried and the outcomes:

• We went to an adult day center for a hour together. We had a lovely tour and my Dad just kept asking "Are we done?" "Can we go home now?" This was maybe a month after my mom died and I was trying to figure out how to go back to work. I said okay and took him home and he took a nap. When he got up from his nap he looked at me and said "You will never believe where your mother took me today." Scratch the day center.
• We went to the Senior Citizen Center. Lovely activities, really mobile, bright, interesting seniors all over the place. I was having a grand time. Dad decided it was time to go. On the way out he remarked "I would lose my mind if I had to go to a place like that." Scratch the Senior Center.
• We would go to church together. Dad would introduce himself and me as his bride, which didn't bother me, but caused some concern amongst some of the parishoners. As his dementia increased, a nice quiet church service was no longer appropriate as Dad would get loud, fall asleep or get up and leave in the middle. Scratch church as a social activity.

What I discovered is Dad likes to be read to and watch risque comedies. The trick is NOT to park him in front of the tv, but talk about the show, use it to spark conversation. One of the advantages of DVDs are I know which parts of which shows he finds the funniest and can ensure he catches that part. He sees my 16 year old son as a peer and will make comments about the girls and have a real man to man conversation. The 16 year old enjoys being treated like a "man" and they laugh.

Reading out loud is a little tricky in public places. You never know what you will get into. For instance we were waiting in a doctor's office and I picked up Scientific American (my Dad used to subscribe). I found a lovely article on Abraham Lincoln and we began to read it. Pretty soon we were discussing slavery and soon my Dad thought we were in the middle of the Civil War. So now I ensure I always have a nice suitable magazine in my diaper bag. Tomorrow I will talk more about the contents of our diaper bag.

Dad has a cold

Like any of us, when someone does not feel well, they are cranky, tired, cranky, in a fog, did I mention cranky? Yep, Dad is cranky. The wonderful thing about Dad being cranky is I see a real growth in my response as a caregiver. In the beginning Dad would get sick and I would panic. My thoughts would range between call the paramedics, I need help immediately, to well he might be really sick, what should I do. Basically I was either paralyzed by indecision or in frantic motion.

Tonight I realized, Dad has a cold. We all get colds, I am going to sit back and see if he can beat this. I am actually pretty proud of this decision. I know, sounds silly, but this is really a huge step. In the beginning of his dementia he was violent and angry, well duh his world was collapsing and we didn't understand it. He was paranoid, hallucinating, it was horrible. If he were cranky, it was time to hide until it blew over. This time we are so in control of his meds, sleep schedule, entertainment, activities, etc. that his cold is not the end of the world. We don't have to be afraid. I don't have to sit by his bed. I will watch and see if he gets better.

What a blessing it is to find myself able to provide, tea, honey, vitamin C, extra rest, extra TLC and without fear. I look at all of us and find myself smiling to realize how far we have come over these last few years. So to new caregivers, I say hang in there. To the old hands out there, I say I am proud of you and how far you have come on your journey. Sit back and take a minute to see your progress and celebrate it. Well Done!

Dad needs to help

I had another revelation today. Drumroll, please. My Dad needs to parent me. Again, duh of course. My Dad has been a caregiver for our family all my life. My cousins would go to our house when they had been drinking and hide out from their parents. Mom would make up the couch while Dad called their Mom and said they were spending the night with us, not to worry. Whenever kids would show up at the house, out would come food and games and all would be welcome. Why would I think this need to give would end just because Dad is a little confused?

Just today we were talking and Dad wanted to go home, go back to school, get a job, etc. It dawned on me, that what he was really saying is

• I need to contribute.
• I need a function.
• I need somewhere to go.
• I need to care for you.

These are basic functions each of us completes daily. I felt so silly. Here I am thinking "Lucky Dad you are on a permanent holiday" and he is saying "I am bored, I need to be needed".

How to fix this? I explained that he is paying his way. I told him we use his social security to pay the mortgage and if did not have it we could not meet the mortgage. You could see his chest swell with pride. In one fell swoop he became responsible for this house. He also helped me clean. Of course, he would get bored and side tracked and wander away, but that is okay. This is NOT goal oriented cleaning. The idea is to give him a sense of purpose not to pass a white glove test.

Witness Love in Action

As a caregiver I rarely get to sit back, coast and watch someone care for their loved one. I am usually in the middle, getting meds, cooking, checking underwear for packages, listening for obstructed breathing, is that a cough/gasp/choke/gasp..... Always on alert. Always ready to spring into action. Sometimes I think all I missing is a red cape and a big C "Caregiver" on my chest.

I had the pleasure of working with a fabulous group of men and women this weekend. This group all went to our capitol to speak with our state legislature to request financial aid for in home supports. This is one of the most dynamic, fun-loving, compassionate, intelligent groups I have ever had the pleasure to work with. One of the attendees, a caregiver for her mom, brought her mother with her.

Watching the loving care this woman lavished on her mother was so moving. The gentleness, the humor, the compassion made my heart swell with pride to be a part of it. What I found most fascinating, was how humble the daughter was. She would express the self doubts, the frustrations we all feel as she lovingly zippered her mom's jacket. The unknowing care, caresses were so reassuring to everyone around us.

What I learned from this woman was the love that is there between a caregiver and their loved one. Oh, we all get frustrated, we all get tired of being together, but even at those moments, it is love that comes through. I only hope I can live up to the model that I witnessed first hand this weekend.

Happy Valentines Day

To all the spouses that are celebrating Valentines with their loved one, Happy
Valentines. Even if your loved one is unclear on the day, confused your name with a relative, cherish the way they light up when you enter the room and know they love you.

Happy Valentines Day

Pay it forward, backward, sideward,

Just do it. What mix of slogans, huh?

To be honest I hated the movie Pay it Forward, but loved the message. If you do what you can, when you can, you are in a sense building a karmic credit balance. Just imagine the power of everyone doing something for another person, without regard to who, what, where or when; just take the opportunity and do it! Sometimes we will be the recipient and some times we have the opportunity to give to others and possibly even folks we do not know.

What does this have to do with care giving? Everything and not in the way you think. It is not the act of care giving that is the gift, I am talking about care givers taking care of one another. Now hang on, and just read on.

I can give a simple example. I had my dog at the vet. My dog is not really a dog, but more like a money pit on four legs. While I was waiting for my bill to be totaled. I know there were accountants being called in for overtime, financial analysts were ticking away, logarithms were being plotted, but that is another story. Suffice it to say, I was waiting and waiting and waiting. Now be honest, when sitting in the waiting room we all hear each others stories and pretend we don't.

A woman rushes in to pick up her cat. She is obviously distraught and has explained 3 times that her Dad is in Intensive Care and may not wake up, she has to go on a business trip and needs someone to watch the cat she is picking up at the vet. Usually a tech at the Vet's office does the sitting and expressed concern that she may not be able to sit for the cat at such short notice. The woman is on the brink, this comes from one that is frequently on that brink and can recognize the symptoms. I walk over and explain that my daughter and I will watch her cat. At first she is (quite naturally) alarmed/confused and settles on desperate. I explain that I am a care giver, I know her stress, we have animals and we will do it for her. She has enough on her plate and does not need to worry about the pet. She cries.

I have been there twice. Once when my cat had first developed a terminal illness and my mom was in the hospital, grandma in the nursing home, Dad was with me and the vet suggested I come back at 3:00 to pick up the cat. I lost it. I mean L-O-S-T I-T. The poor vet's eyes became huge and she reached over, patted me on the shoulder and told me to pick up the cat the next morning there would be no charge to board him.

I guess what I am saying is, I have the lovely opportunity to pay back the vet's kindness, by watching a cat for a few days. And if the same situation were to occur again, I would volunteer again. I don't see that I "owe the universe a kindness" or something like that. I see that I have been given the wonderful opportunity to help another caregiver. We give so much of ourselves as caregivers and so often fail to care for ourselves. Just imagine if every caregiver out there, gave other caregivers a simple gift or gesture (like watching a cat eat) how our burdens as caregivers would be lifted.

How much simpler would your day be as a care giver if, a neighbor offered to carry in your groceries, a coworker brushed the snow off your car, you brought cookies to your care giver support group, you called a caregiver for their birthday/valentines day, sent a caregiver a valentine... These random acts of kindness are wonderful when given to the world at large, but I am suggesting that if we as care givers focused on providing that support to one another (care giver to care giver), our loads would be lessened and our ability to care that much richer.

Academic Credit for Dementia

My 17 yr old son. Boy doesn't that make me sound OLD!!!!!!! Either way, he came home from school and my Dad met him at the door. My Dad wanted to know why he was coming here. My son explained he lived here. My Dad began responding in rapid fire:

Why do you live here?
Did you get thrown out?
How long ago did you get thrown out?
What did you do to get thrown out?
Oh so you aren't getting along at home"
So you live here? Why?
When did you get thrown out?
What did you do?

I finally went out to rescue Buster. I brought him into the kitchen and poor Buster had this shell shocked expression on his face. I told Buster next time tell his Grandpa he got a girl pregnant. Pretty soon Buster and I are giggling and each story is worse than the next one. Finally, we fall upon a way for him to get credit. His school has a creative writing requirement. I told Buster to write down some of his "cover stories" we give Dad and submit them for credit. What a hoot, who would have thought he might get high school credit for care giving!!!!

Superbowl Sunday

My dad does not like football. At all. Ever.

My mother loved football. With a passion. I don't know if it was she loved football players or the game, but she enjoyed both. Every year she would have her very own Superbowl Party. No one would be invited. She would go into her room, load her bed with chips, dip, soda, the remote and the phone. She would watch the game and indulge herself all day long. This was a ritual.

When I provided her with grandchildren, they would be invited to her party. They would spend the day with grandma and enjoy the goodies and the kinship. Once their tummies were full they would move on to grandpa for amusement.

This year, grandma is gone and grandpa doesn't understand the Superbowl. But for some reason I was compelled to have a Superbowl Party. I bought junk food, sodas, all of it. I laid out the spread, made sure Dad's pants were dry and had him watching TV with me. I told him we were going to watch the game and he actually seemed interested.

Twelve minutes before game time the neighbors came over and wanted to know if they could watch the game at our house as they don't have cable. So now, out of the blew, with 12 minutes notice, I am hosting the neighborhood super bowl.

You don't know this but we live in my parent's house. All the goodies I bought for our family of 6 will now feed 12 as game snacks and the sodas I had stockpiled will quench the throats of the partiers. And the house that has seen 12 solitary Super bowl parties, will be hosting a super bowl party for the neighborhood. Our world that seemed so small and sad and consumed with death, dying, grief and illness, has been replaced with a living room full of boys yelling at the TV and celebrating life and football. Life and football are truly gifts.

The Greater Good

Caregiving has created a new appreciation for spirituality for me. I have spent hours pondering some of the most difficult questions there are, the existence of a greater power, is there life after death, why does bad things happen to good people, why don't bad things happen to bad people, why does the nice grandma die first, does it really matter what church you attend, how can something as wonderful as chocolate do such bad things to my thighs, you know the burning questions of our times. And I have come to realize:

1. There has to be more to life than this, there has to be a greater understanding of life and its mysteries, than I have.
2. I hope there is some type of existence after death because I miss my mommy and I want to share everything she has missed.
3. I think devoting time to a devotional life be it formally in a church or gazing in wonder at the perfection of a flower in a field is important, not the who, what, where, why and when.
4. Bad things happen to good people, hence number 1.
5. Nice grandma's dying first, see number 1.
6. Chocolate teaches moderation.

By simplifying my life through coming to grips with a "greater good" or "higher power" or "divinity", giving control of my life to that being and accepting that it is not my place to judge others I have been able to make peace with myself and the twists and turns that life is taking.

I got in trouble today

Dad had gone down for a nap. I hate to admit it, but a piece of me was kind of excited. I had got a latte on the way home, the kids were at school, hubby is at work and Dad was going to sleep. I drank my coffee, watched the birds through the kitchen window. Peace. Luxury. Quiet. Rest. Talk about recharging your batteries.

Before I was halfway done with the coffee, you knew something had to be coming, Dad comes down the hall.
"Hello. Who's home!"
"Just me Dad"

He comes around the corner and sits down next to me. I smile, looking forward to a wonderful father/daughter moment...........

And he says
"I really don't like it when someone craps in my toilet."

I just about spit out the coffee. My eyes are huge and I say "WHAT!"

He explains (with full self righteous indignation) that he does NOT appreciate someone using his bathroom and leaving it full of crap (his word here) and not flushing it. It is disrespectful, and on and on, and on. Knowing that he and I are the ONLY ones home (and frankly you could not pay the kids to step foot in his bathroom, ick factor and all that) I KNOW who did it, but cannot say.

"Ah, excuse me Dad, but the mannerless wonder, would be YOU."

So I apologized for my bad manners, my disrespect and my lack of breeding. I explained that obviously my parents did not raise me well and I would try harder in the future. He actually "harrumphed" me and stalked out muttering to himself.