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.

The Plan

So now you have read everything out there and feel pretty confident that you understand what you are facing and have begun to think about how you are going to handle it. Now the hard part is coming. You have to create a plan of care for your loved one. These are those big decisions that normally you could put off a bit until you get used to your new normal. Unfortunately, these decisions need to be made so you can create your new normal. Start small and build. This plan can evolve and change over time, but the skeleton if you will, remains intact. The plan should include:

1. Legal documents that must be completed (living will, advanced directives, will, power of attorney, trusts, Medicaid etc). For this one you really need a good lawyer. An Elder Law Attorney worked for me, as we had no money to deal with thanks to World Comm, Enron, Lucent Technologies and the boys at MCI Cap.
2. Decide how to tell friends and family. This is a quiet conversation between you and your loved one. Good food, quiet music and loving words help.
3. Evaluate your home. As the illness progresses will there need to be renovations to your home? Would it be best to move somewhere else?
4. If you or your loved one is working, how long will you want to work?
5. Grieve.

I know the last one sounds funny, but to me it is the most important. If the illness is not going to be cured, you especially have to get a handle on your grief. I found it was much easier for me if I embraced the disease, said goodbye and made a conscious decision that I was going to sleep, eat and walk this disease for as long as my loved one was with me. When I got my heart and head around that concept, the pain lessened. And when the pain lessened I was able to breathe normally again.

That act of working through your grief allows you to embrace your loved one. In my case, my Dad has Alzheimer’s. I know he will no longer be able to interact with me at some point in the future, until I came to terms with that reality I was in agony, focusing on my Daddy is dying. That kind of pain is paralyzing and does not help anyone. There is no contest that provides a prize to the one with the most pain. (Actually, there is but it is called a nervous breakdown and the prize is a handful of pills.) Once I stopped focusing on his death I was able to focus on his life and the quality of life that still existed.

Don’t Make any Rash Decisions

Whenever someone has a life changing event, a death, a kid goes off to college, a new job, moving etc; the one piece of consistent advice they are given is:

“Don’t make any big decisions. Get used to the new normal.”

Ironically, the one thing you have to do when faced with a serious illness, is immediately make big decisions. You have to develop a plan and get that plan in place. So here you are faced with what could be (and many times is) a devastating diagnosis and at the same time you are given a to-do list. Are you not under enough pressure without being given chores? Most of us at this moment, want to pick up our toys and go home. We don’t want to play any more. But life being what it is; we have to keep going.

The first step is information finding. Use every resource you have to get all the information you can handle, and then get more. Talk to your doctors, talk to organizations, find support groups, surf the net, talk to friends and neighbors, let the world know you are looking for information. Once you have all the information, you have to read and absorb it. Don’t panic yet. Some of that information is written by doomsayers and should be discounted. Find the middle of the road and positive information and then go back to the source and ask for more if you need it.

Remember, the folks producing the information have an interest and knowledge base in that area and are generally willing to share what they have. Web sites are invaluable resources as they are easily updated and usually have contact information so you can go right to the horse’s mouth so to speak. Be warned though, as websites are not regulated there is not a quality assurance program so the information on the web can easily be outdated and less than accurate. That is why you need several sources and to pull it all together. Facts will be repeated and inaccuracies will become obvious spotted.

More to come.