Let me start by saying that I am not an optimist. I’m not a pessimist either. I consider myself to be a realist. There’s no point in sugar coating things or living in denial, but there’s also no fun in being a Debbie Downer. I try to see things for what they really are so that I will be prepared for the most likely outcome. I think that life is all about the way you look at things. It’s all about perspective. You don’t have to have a glass-half-full perspective to be able to put yourself in other people’s shoes and realize that your life doesn’t suck as much as theirs does. You also aren’t necessarily a Negative Nancy just because you look at someone else’s life and realize that you pretty much got screwed. I think it’s best to be somewhere in the middle. Some people have more. Some people have less. But, what you consider to be more or less is all about your perspective.
Having a mother with Alzheimer’s disease is certainly no walk in the park. There are days when I think my life really sucks…a lot. I quit my job three and a half years ago because I truly hated everything about it. I started helping out with my mom, planning to do so only until I figured out what I wanted to do with my life. I never intended on being a caregiver long term. But, as time went on, I sort of got sucked into this role of part-time caregiver and felt obligated to continue doing so. Every time I start thinking about what I might want to do with my life, I have to stop myself. If I were to go back to working full time, who would be there to help out with my mom? When would I find time to spend with her? I feel bad that I’m not doing more with my life, but I would feel worse if I was unable to spend time with my mom because I was too busy working. When I did work full time, I hardly ever saw or even talked to my mom. She was much earlier on in the disease back then and didn’t need nearly as much help with things as she does now. Knowing that, I can’t even begin to picture what life would look like now if I went back to working full time. I know that I would feel incredibly guilty for not being able to spend more time with my mom and I would feel even worse for not being there to help my dad. Still, it’s hard not to feel like a lazy, unemployed, 31-year-old loser with no life.
That’s when I have to put things into perspective for myself. Instead of feeling like a loser for not having a job, I should concentrate on the fact that I was lucky enough to be able to walk away from the job I hated. I know plenty of people who hate their jobs, but will probably never be able to just walk away. Although what I’m doing now is not really a job, it is definitely work. I know that I am contributing in some way and that what I’m doing is meaningful. Most people can’t say that about their jobs. I’m also lucky enough to have a husband who supported me in quitting my job and continues to support me in taking care of my mom. He also supports me financially by working two jobs (although, I don’t think flying Blackhawks is as much work as it is fun!). I’m sure that not all husbands would be willing or able to do so. He also picks up my slack around the house by cleaning, doing laundry, or taking care of our dogs so that I am able to do things for my parents. He gets my food for me at family parties so that I am able to get food for my mom and help her eat it. The best part is that he does all of these things without me ever having to ask. I’m sure that not all wives can say that about their husbands either. So, instead of feeling sorry for myself for not having a job, I should feel fortunate that I am able to not work so that I can take care of my parents and that I have such an amazing, supportive husband to help me out.
Aside from not having a real job or doing more with my life, it just fucking sucks to have a mom who has Alzheimer’s. Often times, I think about all of the things that we will never be able to do as mother and daughter. I think of all of the things that we are missing out on. I look at other women my age and the relationship that they have with their moms and I am flat out jealous. I will never be able to go away on a vacation with my mom or run a 5k with her. I can’t even go shopping or to the movies with my mom anymore. It is a struggle just to take her out to lunch or to the hairdresser. Pretty soon, we probably won’t be able to leave her house at all. My mom can’t make me a gourmet meal for dinner. She can’t make me anything at all. I have to make her a sandwich for lunch, cut it into four pieces, and make sure she eats it all. I have to put her drinks in a cup with a lid and a straw. I have to hold her hand to walk her to the bathroom, tell her step-by-step exactly what to do, and make sure that she throws away her used toilet paper instead of putting it in her pocket like she usually does. I have to try to explain to her how to stand up, walk, go up and down steps, sit down, get into the car, etc. So, when I see pictures on Facebook or Instagram of women my age doing all of these fabulous things with their moms, I want to throat punch all of them.
Again, I am forced to put things into perspective for myself. Now, I will never tell myself, “At least your mom is still alive.” So, please don’t ever fucking say that shit to me. (If I have to explain why, then you obviously just don’t get it.) But, I can say to myself that I’m lucky to have had so many memories with my mom before she got sick. There are many women my age whose moms died when they were much younger than I was at the time my mom was diagnosed with Alzheimer’s. I had 25 uninterrupted years of memories with my mom before I started to lose her. I bet women whose moms died when they were kids or teenagers would have killed for 25 years with their mom. My mom was at my wedding, even though she has absolutely no recollection of it. I’m also lucky that my mom was very involved in my life for those 25 years before she got sick. There are women who grow up with moms that are alcoholics, drug addicts, narcissists, or workaholics. My mom was none of those things. There are women whose moms walk away from them when they are young and choose not to be a part of their lives. My mom would have never done that. I am lucky to have had the life and relationship with my mom that I did, even if it was cut a bit short by Alzheimer’s. I’m also lucky that my mom is still able to walk, talk, laugh, and enjoy spending time with me, for now anyway. I know that I will eventually lose all of these things, but some women have moms who have already lost them. I am always grateful for what I have now because I know that it could always be worse. And, some day it will be.
The final thing that I will say about perspective is this. How can I sit around feeling sorry for myself that my mom has Alzheimer’s when my mom is the one who actually has it? How can I feel sorry for myself that she can no longer do so many things? She is the one who is forgetting how to walk, talk, eat, drink, use the bathroom, and think. I know that she knows what is happening to her. And I know that it upsets her. She will often say that she is sorry that she can’t think of something to talk about or that her brain isn’t working. More and more she thanks me for helping her and tells me that she loves me. So, if I think my life sucks so much, what must she think about her life? She probably wishes she was taking care of someone with Alzheimer’s rather than having the disease herself. And that is probably the most powerful thing that I can say about keeping things in perspective.
Always remember that your life is only as bad or as good as your perspective allows it to be. Someone out there would probably kill to have your life, even on your worst day. A bad day for you may very well be a dream for someone else. It’s not about being optimistic. It’s about being realistic and being grateful for what you have. Life is all about perspective. So, when you start losing your perspective, you better check yourself before you wreck yourself. It could always be worse.
