Monday, February 21, 2011

When illness hurts, what would you do for love?

Unconditional love: to love someone regardless of the loved one's qualities or actions.

Selfless Love: an essential stage in the evolution of love is being able to love others regardless of their behavior.

These are the wikipedia definitions for these two words, and I think the most common and easiest to understand. Sometimes we find it difficult to love someone unconditionally, or to give our love selflessly to someone who is difficult. But love is the most powerful, and gratifying gift you can give to someone as well as yourself. If you're curious as to what other euphoric gift you can give to yourself would would be forgiveness. But that's another entry for another time.

If you live with or have  someone you love who is a victim of the illness dementia, you know how difficult it can be. Not only is the person who has fallen victim to this horrid disease suffering as their mind plays tricks on them, with disorientation, and memory loss but those who love the person has to suffer as they watch the ill loved person deal with the fear, frustration and emotional outbursts. I would not wish dementia on anyone, not even my worst enemy. It is not an illness to poke fun at or to take lightly. There are different causes which can cause dementia, and not to give false hope but if the disease is detected early enough and the cause diagnosed, it can be slowed or even stopped if treated.

Sadly, I live with a wonderful woman who suffers from dementia. My aunt. who is like a second mother to me has been diagnosed with the disease. My aunt used to socialize with our friends and loved to do crafts. She loved to travel and had a sharp sense of humor. when I was a kid, she made me awesome Halloween costumes, and took me to my very first concert, which happened to be Bon Jovi. She also threatened to bop the guys on the head with her camera if they thought to pass me the joint they were smoking or even offer me a bump of snow. That's how my aunt rolled. And then in her sixties, she started slipping away from us. Maybe it was sooner, but we just didn't notice or didn't want to accept the fact that she was becoming more difficult or forgetful. Denial sometimes seems better than to accept the fact that the one you love isn't the same as they had been. There have been days where my aunt has been completely herself, then slips in to someone argumentative and difficult to please. There have been moments where a physically handicapped woman literally flipped pieces of our sectional sofa because she was convinced we were going to hurt her physically. She can be completely lucid and then ask me the same question eight times in one day. It is emotionally and mentally draining to try to keep myself patient and accommodating to her. It is depressing to see someone who made beautiful crocheted blankets not even be able to put her shoes on her correct feet. Anyone who is an hostage to this uninvited illness, regardless of having it or being adjacent to it knows all too well of what I live with and have very briefly described.

When you are the caregiver for someone who suffers from dementia, you don't really have many avenues of support. Sure there are support groups to attend. However those who are in them can only give you the lukewarm comfort that the person who lashes out at you isn't themselves but the illness speaking. They can only swap 'war stories' with you....not give you a solution. The facilitator reminds you to be patient when answering the same question for the 10th time that day. If you have family nearby or friends, they often tune you out when you rehash the latest episode of what transpired...because let's be honest. People don't like to hear depressing news. Again, ignorance can be bliss. And more often than not, you will not find that family member to come and relieve you from your world for a few hours. So you just repeat to yourself for the umpteenth time that you love this person, and know that they are scared, and confused, and wonderful. And you try to find something to comfort yourself...a fictional book, or stroking a pet, or relying on your faith to get you through the rougher moments.

My aunt is my world...the second mother in my life. She has kissed my boo-boos, and attended my dance recitals. She has gone on vacations with me, and done some pretty wild stuff with me. She has encouraged me to follow my heart, and accepted my faults. So I can make sacrifices for her and her well-being without thinking twice. I currently work part-time, at night due to being fired two years ago and lack of jobs with the economy the way it is. But I need more of an income...because things are very tight. However due to  my aunt's physical handicaps and health issues, she can not be left alone by herself. She gets confused,and falls easily. She just fell this past Saturday when both my mom and I were at work. Thankfully my mom came home straight from work and found her. But who knows how long she had been on the floor. My aunt's insurance will not cover for a home aide to visit, and my aunt wouldn't feel comfortable with that anyway. We can't afford to pay for an aide to visit out of our pockets.

So I am making the conscious decision to care for my aunt as long as I possibly can. Instead of looking for a full-time job with all the bells & whistles I'm going to take a second part-time job. Something close to my house which will afford me the luxury of working only a few days a week, or several hours in the day. That way my aunt won't be left alone for too long in the day, and will give me the extra income which I need. I'll keep my evening, part-time job which will give me a break as my mom will be home to be with my aunt. When you love someone unconditionally, you put their needs first without a thought to yourself. When you love some one selflessly, you do what is best without resentment or throwing it in their face. When you love someone unconditionally you put their needs first and do so because you know it's best for them. When you love someone selflessly and unconditionally, you love them in good times and bad, and weather the storm out together.


  1. So much love to you, my Rose. You have so much strength and a great heart and you are doing the best you can. <3 <3 <3 <3

  2. Thank you my Michelle. Sometimes I feel like I've run out of strength...but then I think of my wonderful sister in Arizona and all th wonderful people in my life who I can count on to give me a strength boost. <3 <3 <3