I never really considered myself a caregiver. Mom had lived alone since I moved out many years ago. She handled herself well, as she had her entire life. As I saw the signs of dementia, I started paying more visits, more frequently. Not that I needed a reason to pop in, but this made me feel better. She was still taking care of herself, but I noticed she wasn’t eating as well. I did most of her shopping for her, so I could tell. This was a sign that she wasn’t “just getting old.” At that point, it was obvious that Mom shouldn’t be driving, so I’d take her to her appointments. Although this was a bit of a change of lifestyle and routine for me, I really didn’t give it a second thought. I never really considered myself as a caregiver, just helping Mom.
Things went bad fast, though. Mom fell at home and had to be taken to the hospital. She had surgery to repair an injured shoulder. This was the turning point. It was as if the injury accelerated all of the symptoms. She was confused, scared, and unsure what was going on. This is when the doctor said she couldn’t go home. I had about 24 hours to figure out what to do. I needed to find a facility that could take her right away because I simply didn’t have the resources to take her into our home. I was fortunate to find a place a few minutes from my home, and they could take her upon her release. I was relieved and scared. This was probably the most heart-wrenching thing I’ve ever had to do. I was putting Mom in a nursing home?! I remember like it was yesterday. I was trying to be so strong. We took her in and got her all settled. It was a good place, for her and for me. When one of the staff took her for a walk, I broke down and cried for the first of many times. I don’t remember ever crying so hard. The staff was great. They reassured me that this was best place and she’d be well cared for. This is when I turned from caregiver (which I don’t believe I really was) to a love giver.
There were so many tough times. I think because I was the most frequent visitor, she remembered me the most, the longest. The day came when I knew she wasn’t sure who I was, at least that I could see. I still believe deep inside she knew. Don’t ever think your loved one has “forgotten you.” You need to hold onto that. You may have to pull your hand from theirs when you go to leave. It hurts so badly. They may yell at you. You have to fake a smile. You just have to remember, they are your mother or father or brother or sister. Someone you love. And they love you as they always have, unconditionally. And they deserve the same thing in return. They are the same person, but a disease is holding them hostage. Tragically, but realistically, someday this disease will take them from you. There just isn’t a cure yet. But give them all you have to give. Haven’t they done the same for you?
In October I was lucky enough to be a part of the ALZ Stars team running in the Chicago marathon. I am fortunate enough to have friends (and strangers!) contribute to the cause. The Illinois group raised over a half a million dollars. As great as that sounds, I’m afraid it’s only a small amount of what is needed to find a cure. I am already starting to plan a few fundraisers in hopes of doing much more next year.
As you look out for and help your loved one, you’ll feel stresses and emotions that may be unfamiliar. Please don’t be afraid to ask for help. A lot of people say this disease is harder on the loved ones that the victim. That’s not my place to say, but you will be tested. Don’t be afraid to ask for help. And you still need to take care of yourself, physically and mentally. Reach out. There are so many of us with shoulders you can cry on.
And don’t be afraid to smile and laugh. You’ll get one back. It’s damn good medicine for everyone.