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.

Memory is a tricky thing

Last night Dad remembered that he had been married and his wife died. Up to this point I eagerly looked for those lucid moments, those moments where he was there. Yesterday he came through for me, but with a sad memory.

I told him about my mother's death and how he came to say goodbye to her at the hospital. I explained how his dementia caused him to roll with one of life's biggest punches, the loss of your spouse. He asked me if he grieved. I was stumped. What I finally went with is, explaining that his dementia caused him to be very matter of fact. I explained that he went in and held her hand. He stroked her arm. Felt her hair. Then he looked at me and said "Hmph, she is already cold". I explained that his dementia allowed him to fast forward (so to speak) through the grief process.

Was I right? Has he really gone through the grieving process or is it just beginning? I don't know. What I do know, is he is lonely and in a way that I cannot fix. I cannot find someone to share his bed at night. I cannot recreate a partner and a relationship that spanned 40 years. So what do I do now? How do we move through this new road block?

Well, we are going to talk about it. I am going to keep explaining his dementia. I explained that I had newspaper articles about everything that has happened, and he told me not to show him the articles, it was too much. So I know tempering what I share is the right path, but how much is too much and how much is not enough?

There is no right answer and there is no quick fix. When my Mom died, Dad lost his partner in crime, his life partner, his business partner, his...........partner. The trick is going to be reconciling this loss with someone who has no short term memory left. He cannot turn events, thoughts and words into long term memories. Like all else this will run its course, I know that. But this is where the caregiving begins. This is the "Big One" or as presidents might say "The Mother of Caregiving Dilemmas". This is where I will earn my caregiving stripes. The question is am I up to it?

A group of 2 is all that is needed

Support groups come in many forms, the formal ones we join, lunch with friends, dinner with families and even..............at the grocery store. Maybe it is just that I am more aware of the numbers of caregivers because I tell you they are everywhere. There is no prototype or stereotype, they come in all shapes, sizes, colors, genders, ages......every possible combination has a caregiver and someone needing care. It is one of those gentle miracles that we can miss.

How many times do you go to the grocery store and not talk to any of the employees? How often do we mechanically greet the kid at the counter with the nose ring? As you shop for that new pair of pants do you avoid eye contact with the employees? I know I am very guilty of it. Just get me in and get me done. Well once again I had the karma kick me in the rear.

June 5 is the anniversary of my mom's death. This is still a hard day for me. I doubt I will ever not associate the date with her, but it is getting easier. I almost didn't cry this year. To celebrate her life I bring ice cream to our local firemen as they took her for her last ride. So in the early afternoon, I go to the grocery store to buy supplies. My order was hilarious to an outsider but caught up in my woes I couldn't see it (you know the whole forest for the trees thing). My order consisted of

• 2 half gallons of vanilla ice cream
• 1 half gallon of coffee ice cream
• 3 half gallons of chocolate ice cream
• 1 half gallon of strawberry ice cream
• 1 jar of chocolate sauce
• 1 jar of hot fudge
• 1 jar of caramel
• 1 jar of cherries
• 1 Diet Pepsi

Can you imagine what it looked like? Well the lady in front of me at the register found it very funny indeed. She kept watching as I unloaded on box after another of ice cream. Finally, she cracked. She told me it looked like I was having some party. I thought for a minute and proudly said "Yes I am". I explained who the ice cream was for and why.

This unbelievably put together woman, I mean she had it going on. Shoes, hair, nails, clothes all of it, loses it right there in line. She chokes up and shares that she lost her mother in February (4 months ago at the time of this writing). Immediately, we had a bond. We knew we had been in the same place and were both coming out of it. What a blessing. We talked, we hugged and we both left the grocery store with a little more than we planned.