When you are a caregiver to someone that’s ill, someone you love…how do you feel about it? The emotions can run the gamut from feeling oppressed and depressed to feelings of martyrdom. I’ve seen them all and have at one time or another felt them all. Why? Because they were my feelings and my feelings were legitimate!
I was confused when mom first started showing behavioral changes. I felt hopeless because not only did I not know what was going on but I didn’t know who to turn to. I had others, including family members, brush her mental changes as being part and parcel of being old and that I was just a worry wart. I knew something was wrong I just didn’t know what or what to do about it.
So like many of us who are afraid and confused only the outer symptoms were addressed (keeping clean, food intake, not letting her drive) but what was going on underneath – the heart of the matter, the meat and bones – was left to fester until it was too late. Fear, ignorance, and denial are a deadly trio for anything in life. Please don’t let that gruesome trio take you over in whatever you have to face in life.
Then panic set in as I realized she wasn’t getting any better and her behavior was getting worse. “What are we going to do about mom?” I’d ask my sibling and dad. And everyone had their own opinion but what I now know should’ve/could’ve been done wasn’t because of the evil trio. So then it devolved into frustration and anger. Those two emotions were because I felt I wasn’t getting any or enough help from my siblings or dad for that matter sometimes.
Frustration led to fatigue as I tried to do as much as I could with what I had along with living my own life, raising children, and working. There were so many candle ends burned it was absurd. Then when anger saw that my guard was down it slithered in and I began to get angry at the world and God for what was going on in my life; in my parents lives. I was tired, angry, and many times in tears.
I forgot to mention embarrassed. I didn’t know about dementia support groups at the time and when mom was still able to go out with us I was ashamed of her behavior and her outward appearance. I would either walk ahead of or behind mom and dad when we all went out together because while I wanted to keep an eye on them I didn’t want anyone to connect any dots.
When my parents had to be placed in separate nursing homes I felt like I had failed some how to do better for them. I felt angry that they let themselves get this bad health wise and at times I wanted mom to just die. And do NOT get me started on dealing with legalities for them. I was worn out because I was trying to be all things to and for them. I was desperate because I knew I was slowly losing my parents and I wasn’t even close to being ready to be an adult orphan. In the midst of all of the turmoil I still loved my parents as I am sure you love the one you are caring for.
And I felt all alone because I was learning about how to take care of their needs physically and legally with on the job training. I learned things the hard way at first because I didn’t know where to turn. Eventually I found about the Alzheimer’s Association and found an online support group which saved my sanity and as time went on I learned what battles to fight and how hard to fight them.
So why am I telling you this? It’s because you too may be feeling any number of these feelings right now as a caregiver and I want to say that it is alright to have those feelings. You are human too and the task you are undertaking is an enormous one. You are doing things because you have to, you want to (and sometimes you really don’t want to have to), you need to and sometimes only you understand what you are feeling and going through.
No matter where you are in your job as a caregiver be it all alone or with an entourage of help and support, your feelings are yours and they are very legit. There is no need to apologize for them nor to feel guilt or shame. Keep doing the best you can…