What the Future Holds

Raising a toddler is a demanding job. Having three small children (my youngest being 14 months old) often leaves me drained, physically and emotionally. Having children means putting their needs ahead of your own, but having a toddler means constant care and attention. From the minute my toddler wakes up in the morning, until the time he goes to bed at night, my day is centered around his routine and his needs. He doesn't yet talk, so he communicates to me with a mixture of babble, cries, whines, laughs and giggles, tantrums, and so on. He can't do much for himself; I spend my days dressing him, changing his diapers, bathing, preparing his food, wiping up messes, entertaining him and keeping him safe. His new favorite thing to do it is climb. I have to keep a watchful eye on him to make sure that he doesn't fall off the kitchen table or the playground outside. He's learning to walk but isn't as steady on his feet, so he gets a lot of bumps and bruises when he's navigating himself to where he wants to go.

My house has been altered for my toddler. Childlocks secure every cupboard because without them he is pulling everything out and breaking dishes on the floor. We have to keep the doors closed-especially the bathroom door as he has a fascination with the toilet. Sharp and dangerous objects must be kept out of his reach. We have to be careful of the things that are left out in his view because anything small will make it into his mouth if he finds it. Sometimes, things go missing (the TV remote being the most popular) and we play a big guessing game trying to figure out what he has done with it. If we try to ask him what he did with the missing object, he might giggle, he might babble or just give us blank looks because he doesn't know what the heck we're talking about.

When it comes to outings, they revolve around his nap schedule. He takes a morning nap and a later afternoon nap. Grocery shopping, errands, trips to the library, etc are worked around his sleeping schedule. Staying out late isn't an option because he has an early bedtime. When he doesn't get his sleep, he is cranky, whiney and has many meltdowns. He sleeps in a crib; if he weren't confined he would wake up and wander around the house and cause all kinds of trouble! Of course if my husband and I want a night out, we must hire a babysitter to take care of him while we are gone. Toddlers can't be left alone.

Last week at support group, a book was recommended to me to read on behaviors of people with dementia. As I was researching that book (on Amazon), I stumbled upon another book called "Dementia: The Journey Ahead". It is a guide for caregivers of dementia patients, written by a woman who cared for her husband (who had Semantic Dementia). I ordered both books, opting for the 2 day shipping. I was anxious to read. The book arrived Friday afternoon and I had finished reading it by Saturday night. The conclusion I drew after reading the book is that my mom is becoming an adult sized toddler.

It was hard to read about what is to come; necessary, but hard. I have had so many questions about what this disease will look like as it progresses. As it is now, my mom has very childlike behaviors. As the disease progresses, it will become more and more childlike. It is almost as if she is growing backwards and will eventually become like an infant again. The only difference is that unlike a child (or a baby), her body is forgetting how to function, rather than learning.

Susan, the author of the book, prepared caregivers for what is to come by sharing experiences of her husband as well as by giving recommendations of where to turn for help on each given situation. In a nutshell, here are some major changes that we can expect in the future with mom:

We can expect her to lose memory of everyone around her. I was holding onto the hope that she'd remember those who were closest to her. And it's still a possibility. But we have to prepare for the worst.

We can expect that mom may become incontinent. This means that she will be in diapers. Again, I've heard that most dementia patients become this way but I was hoping there was a chance to skip that. It looks very unlikely that we will escape the inevitable.

We can expect to childproof the house. Many dementia patients put small things in their mouths and eat whatever is in sight. It's hard to believe that this could happen to my dear mom, but it's something I hear over and over from other caregivers.

Dementia patients become wanderers. We will have to keep tabs on her and make sure that doors are secured so she can't wander outside.

We can expect temper tantrums, whining and crying and even take some beatings. Imagine a toddler tantrum but in an adult body. This is typical in dementia.

Eventually, but not necessarily, she could become bed ridden. Each case is individual, so there's no telling one way or the other. But many become this way and end up in hospital beds. They sleep for many hours of the day, like newborn babies.

Like I said, each person is different and no two cases are exact. However, this is the "norm" in dementia. From my reading, each case of dementia starts out different (depending on the form of dementia they have), but in the end most cases look alike. Bottom line: mom is going to need round the clock care in the near future.

At the end of the book, there was a rating scale to determine which phase your loved one is in. There were several categories of behaviors and cognitive abilities to rate and the ratings were as follows:

0: none
.5: questionable
1: mild
2: moderate
3: severe

In most categories, she scored a 1 or 2 (mild or moderate) which I interpret to mean that she fits the moderate category (or is at least transitioning into it). Now is the time to prepare for the next phase: severe.

I don't know how we are going to get through this. I know we will, but I don't know how. Susan was fortunate enough to be able to quit her job to care for her husband full-time. And even then she had another part-time caregiver come in to assist her. There are facilities that house people (my dad would never send family to a home), there are daycare and in-home care options; all are very expensive. With my dad being self-employed, he doesn't have a steady income. It isn't feasible for him to quit work to take care of her full-time, as the bills still need to be paid. They are too young for retirement or Medi-care. Our best option is waiting to see what Social Security will offer her to financially relieve them of some of this burden. The current wait time on their case is 12-18 months.

My dad would say this isn't for me to stress about. Yet the past few nights I have laid awake in bed feeling stressed about the future. I am stressed for my dad and what he is going through, and especially for what is to come. He can't do this alone. I have 5 kids ranging from 1 year to 16 years old; it is impossible for me to care for my mom everyday and manage my family and household at the same time. But I do know that I need to do something to help my dad (and my mom) get through this. I want to be there to help. Once again, I find myself trying to figure out my role in this difficult journey.