I have been talking alot lately about me, and my Alzheimer’s. I looked at Missy, my daughter and caregiver, this morning so tired, and exhausted. She is 58 and has MS. I asked her to answer a question today honestly for me and my Facebook buddies. I asked, “Missy, tell me about being a caregiver.” Here is what she said:
“First of all I hate the term caregiver. When mom fell 3 years ago and fractured her pelvis and knee she went to rehab for about 2 weeks and then it was up to us to decide whether to put her in a nursing home or bring her home. They told us she would need assistance walking short distances and be in a wheelchair for longer trips. She cannot get up out of chair, needs help dressing and bathing, help to the restroom, wiping her rear, and making meals. Bascially, they said, it is like caring for a 2 year old.
Well, I talked to Mike [my partner] and there was never a question whether she was coming home. After the first week of getting up every 2 hours all night long to take her to the restroom and no sleep I had my first MS flare up…but we made it. When she was then diagnosed with Alzheimer’s last year, I thought, “OK, how much worse can it get?” Well, it got so so much worse.
My biggest fear with MS is having someone take care of me, wearing adult diapers and bathing me. Caring for mom, I am living my worst nightmare. This is the hardest thing I have ever done. This is my mother, my idol, the strongest woman I know. I watch her everyday lose a part of herself.
The first time she didnt recognize me I thought she was kidding. The second time I felt a heartbreak that I can not explain. Only others that go through this can understand the deep pain. That day when she didn’t know it was me, her eyes looked at me, but there was no light in them for me, like I have alwas seen before. Whe was not looking at her daughter–her sunshine. I was just someone. It broke me heart.
Sometimes now when I am helping her after she has fallen, or changing a dirty adult diaper because she had an accident, I will catch Mike looking at me. Our eyes will meet, and I will wonder if he is thinking, this is going to be his future with me in a few years. Him caring for me and my MS. I think I know he loves me, but why would I put anyone through this? Why would I want him to have to spend his life doing this?
Being a caregiver is different for each person, each case, there is history, there are different circumstances. I never thought about all of them. There is not only the care, but the financial, and emotional that goes along with it. The loss of friends, the loss of family.
So to answer your question Mommy, being a caregiver is hard for me, it is stressful. It is also the most fulfilling thing I have ever done for another person that I loved in my life. After a good day, which there are many, I say, “Wow, this was a good day.” On the bad days, which there also are many, I say, “Well, day by day.”
So, for as long as I can, as long as Mike is with me making me laugh when I am crying and screaming, as long as it is right for you to be here, as long as I can care for you with dignity, I will be your caregiver. Because you asked me to, and it is the only thing I can ever in my life remember you asking me to do for you. On the days that I cry to you and say, “Mommy I just can’t do this any longer”, and you pat my hand and hug me, or I am so tired and sick; on days that I am a little grumpy, forgive me. For I am just your caregiver. You are the one that has the disease. I love you Mommy.”
[Editor's note: If you are a caregiver, there are a number of resources to help you. You are not alone. Get connected! Here's one: http://facebook.com/the.parent.care.giver.experience]