Monday, June 18, 2012

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.


  1. Cassandra, thank you for keeping us all up-to-date on your mom's condition. When grandpa was sick, I felt powerless living so far away, and I find myself feeling that way with your mom being sick. I do hope you will take my mom up on her offer to help out. I know she will step up to the plate as she always does. I am sure other family members have offered to help, too. I know eventually she will need 24 hour care as you mentioned. If she is totally disabled, she will eventually qualify for Medicare, and can hopefully utilize those benefits. That might be something to look into. As always, thank you so much for taking such good care of your mom. She is blessed to have such a loving daughter as you. I know it may not seem like it now, but you are being blessed for all you are doing. Love you, Cassandra! Keep your chin up, ok?


    1. I am learning a lot from an online support group that I have joined. Thank you for following my blog and please pass it on to others. I have some bigger plans in the making for his blog and hope to help others going through the same thing :)

  2. Cassandra, my niece, Nicole Morrisey, asked me to visit your site. I am so very sorry that your family is dealing with this. It is very very difficult (at best), both physically and emotionally and often financially.

    I helped care for my dad (with Alzheimer's) for 2.5 years until he died. He was in an assisted living center, but I was there almost daily to help enrich his life, and help with daily care, and learned many things about him, the disease, his manifestations, reactions to his surroundings, and things to help. And I learned a LOT about myself, my capability for patience and empathy, and my abilitiy to do/be more than I had ever thought of. I know the disease was progressing for 4-5 years prior to the death of my mother, and none of us knew how much it *had* progressed, until she died and the kids had to take over dad's care.

    All of what you explained above is true. How old is your mom and your dad? Is dad her primary caregiver now? I know it is *very* difficult for the main caregiver, and great care must be taken that they get respite and support. I would recommend a support group for your dad that will help him understand the condition, how to deal with every day and special issues, how to care for himself, and what other resources are out there to help him. There may be a number of community-based resources that are either free, on a sliding scale, or possibly covered by insurance that may ease his load.

    I would be more than happy to speak one-on-one with you via email or other if you feel like I could be of help in any way.



    1. Jamee,
      Thanks for reading and for your kind words. My mom is young, she is 51 and my dad is 52. I have joined an online support group which has been awesome for me. I am hoping to draw more attention to this blog, in an effort to help others going through the same thing. Feel free to pass it along and continue reading :)

  3. I never imagined this happening to anyone in our family, especially to our mom, who has always been healthy and taken care of herself...never drank alcohol, smoked or done drugs, stayed out late "living it up"...she was always responsible. I would like to read the book but am still so consumed by grief that I do not know if I can handle it. When I was a child, I used to tell myself that Mom and Dad and Grandma and Grandpa would live forever and I would never have to live without them. Losing Grandma and Grandpa was hard enough; I do not know where to even begin coping with losing my mommy.