Notes of a Caregiver

I think one of the biggest things you can learn as a caregiver is to find the little things that help you get through the day. One of the most stresful aspects of dealing day to day, is specifically keeping a positive attitude when life seems to be pressuring you into a corner. It’s an attribute and coping mechanism easily overlooked, but can be one of the biggest weapons in your arsenal with coping.

This can be easily applied to anyone trying to cope with stress and frustrations of living. Learning to keep a smile and hold on to the good that happens in your life is a harder task than it sounds. Often a caregiver is the brunt of blame or accusations for the patients current dilemma. Learning to let go of the simple frustrations, on top of the things that may compound a situation, can root you in the present, and help you through your day.

One day I stopped by my parents place to check in on my father. As soon as I walked through the door, he already looked flustered. He was searching for his eyeglasses. I spent half an hour searching the house for them. I finally found the glasses sitting on the bathroom counter. I gave them to him, and within 5 minutes he had lost them again. These are small inconveniences that can add much more stress and trouble than it’s worth. If I were to take it personally and let the best of the situation take hold, snapping back at him in frustration, it would have brought both of us in worse moods. I smiled my way through it, and looked at my father. He smiled back, and I noticed they were in his shirt pocket. I prompted him to look in his pocket, allowing him to search and find them on his own, and he was pleased to know they were there as well.

Learning to adjust to simple inconveniences with a smile, allows you to manipulate caregiving situations to your advantage. It keeps you positive rather than piling the simple frustrations till you can’t take it anymore.

It’s been seven years since my father was diagnosed with Alzheimer’s. He was diagnosed with early onset Alz when he was 56. This is a very young age to be diagnosed with such a debilitating disease. The disease affects everyone differently. Some people live long lives after first being diagnosed, slowly losing their mental and physical faculties through the years. Others live only a few months, rapidly losing their memory day to day.

My family and I have been fortunate enough (if you can call it that) to relate to the former. It’s given us time to recognize and prepare for what’s to come. This allows us to make the most of the time with my father. Recently I’ve been taping conversations both audio and video, trying to capture as much as we can to remember who he is rather than what’s to come.

I know that the changes affect my father day to day. You can see if he’s having a good day or bad day as soon as you walk through the door. On the good days he instantly responds and smiles to your presence. Cracking jokes or asking about the people he cares about.
On the bad days, his eyes look lost and agitated. You can sense he’s trying to grasp where he is. There are times when you see depression set in, his face and emotion withdrawn in complete disarray. He’s at a state where he clearly understands he has Alzheimers. When his emotions kick in and are confused by his memories, he’ll often have fits and arguments, trying to reconcile his memory with reality. After the episode he realizes what he’s done and falls into a bit of sadness, knowing he’s emotionally hurting my mother when he doesn’t mean to. It’s hard on him, but I know it’s harder on my mother who is the primary caregiver.

She has come a long way to accept what’s going on, but the daily stresses of my dad’s incessant questions, bouts of anger and confusion, and simple tasks of caregiving are taking a toll. My brother, wife and I take turns checking in on him daily, but there are times when my mother is to afraid to burden or ask for our help. It’s frustrating when my dad’s own brothers and sisters live their own lives not caring enough to check in, or watch or even know how he’s doing. It angers me so much that they treat him like he’s already gone. Most of them rarely visit. Only one truly comes around often enough showing compassion. I’ve distanced myself from my father’s relatives because of it. I hate that my mom has to reach out to them. They should take proactive steps to spend time with their brother. Yet they selfishly focus on their own lives. This sounds like another post, and it most likely will be. For now I’m venting.

We take his moments day to day, more so than in the past. We know he has an off day when his face changes. There are also moments now, when we see part of the depression set in. We try to keep him in positive spirits, and for the most part, he tries to keep himself in positive spirits when he forgets things.

It’s inevitable that during your time helping someone with Alzheimers, you’ll look to those you’ve trusted for laughter, friendship and guidance, suddenly disappear from your life. Those people may be friends who grew up with you, family who said they would stand by you, and loved ones who can no longer handle the pressure and stress of it all. So you begin to look for support. Some are to busy with their own lives to help. Siblings and family members stop coming over for visits. And some may even find their own sons or daughters, no longer having the time to check in. What are you left to do as a caregiver when your support network dwindles.

Take another look. The ones who stick around and are there for you, are the ones you want to have around. The ones who simply ask, “Hey, how are you doing?”, are like lifeguards sending you a lifeline. These are the people in your life, you may least expect to be there for you. Who come in the form of a phone call, or a quick visit. These are the people that will help nurture you in different ways. Accept every bit of support that each person brings, and know the type of relationship they are willing to commit. Not everyone will be there to watch over your loved one. But they can be there to make you laugh, remind you what life is like, to take a break and breathe just for a second.

The stress and pressure surrounding the affects of Alzheimer’s socially is far too much to handle alone. Reaching out to those who lend a hand is extremely important. Reaching out to Alzheimer’s support groups or phone lines can help when the pressure seems unbearable. Releasing the tension one feels is important in handling the stress related to the disease. Not everyone feels like they can sit in a group of strangers and share their thoughts and emotions with them. But its those experiences that are commonly shared in a support group that remind the caregiver, “I am not alone”. Most often a problem will come up during a support group. Someone will mention something about a missing wallet for instance. The rest of the group will listen and share tips and tricks that helped them deal with the situation. It’s extremely important that you take the proactive step to find someone who cares.

Grow and nuture your network. Weed out and kick to the curb, those who pay no mind. They were never worth having in your life, if they can’t see past themselves. Reach out for help from anyone who offers
it. But most of all, be proactive and find a means to unload the stress that builds within you. You’ll be saving yourself and building up the strength you need to cope.