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Expert Blog

Square Peg Doesn't Fit a Round Hole

February 20, 2015

Like most people, I have learned the quickest way to be put into a particular situation is to judge someone else in that predicament.

Before I was a stay-at-home mom, I thought stay-at-home moms had it pretty easy.

Boy, was I wrong.

Before I was an adult, I thought adults had it pretty easy.

We all know how wrong that assumption is.

Before I was a caregiver to my husband with Younger Onset Alzheimer’s Disease, I thought a lot of things - especially right after he was diagnosed- and I started to actually pay attention and put some thought into the whole mess.

Alzheimer’s and other dementias are so much more encompassing than simply forgetting names and dates and directions. If it were as simple as dealing with someone losing their keys or asking the same thing over and over, I think it would be bearable. Those things are just the tips of the enormous iceberg lurking, hidden and quiet underneath the waves.

One of my misconceptions had to do with caregiving—specifically about hiring someone to help at home or taking Jim to respite care. I secretly thought I was a bad caregiver and a bad person for wanting this help, and I thought I wasn’t being strong enough. In spite of that feeling, I recently began taking him to a daycare run in a lovely church about 45 minutes from our house. There are no other programs available closer to our home that are affordable for our family. I wanted him to be able to interact with others and do some activities while he is still able.

What I have learned instead is that Jim enjoys going. He asks almost every day, “Am I going to that place today?” He remembers and starts to get things ready, including his lunch. Yes, he still packs his own lunch. He can’t figure out if he has brushed his teeth or taken a shower, but he puts his meal together for this one event.

I have also realized that as a caregiver, I have to recognize this place takes better care of him; it offers less chaos, activities he can do, and plenty of attention and calmness. I have no ego when it comes to his care or letting him enjoy being somewhere else. It doesn’t bother me. I am glad that we are able to do this for him. I can see how good it is for his demeanor and his health.

I had never thought before that it was actually preferable for the patient to go somewhere else for care or have someone else come in to help. But now I see it firsthand.

Throughout my life, I have learned to do a lot of things. I have had several different careers. I have thought long and hard about various things I would want to do. Being a doctor or a nurse or a caregiver was NEVER on my list. It isn’t me. I don’t do blood or throw up or feces. There are some people (thankfully) who are happy taking care of others. That isn’t me. I own up to this.

Does this make me a bad person? I don’t think so. But I can tell you, just because I am married to someone who now needs care doesn’t mean I will magically switch to being a different person who can become something I’m not. I can’t. It isn’t me. It isn’t who I am, whether I want to be or not.

There are other ways I can help Jim.

I can advocate and share our story. That makes him happy because he wants a cure and he wants a change with assistance for families dealing with dementia. I can help better in that arena than I can watching him wander aimlessly around our home. I can fight for him and keep track of his care, but it doesn’t mean I can actually take care of him. I can be a single mom. Jim knows I can take care of our children, and that knowledge allows him comfort in losing his ability to do so.

I am not excited about saying this, but I think I have to accept my limitations and I have to understand my personality and my abilities. I have not trained to take care of a grown man. Others have.

Me trying to be a stay-at-home, full-time caregiver for him would be the same as trying to put a square peg into a round hole. You can try and try and at times think it is going to work, but eventually you realize you are beating yourself over the head for no reason. I am who I am. Just because my spouse is sick does not change who I am.

Thoughts and stories from others

  1. March 7, 2015 at 11:03 am
    Posted by Rita

    Great testimonial which gave me food for thought. My dad and stepmother just moved to assisted living an hour away from me. She is beginning dementia at 87 and he is brilliant but legally blind at 93. My biggest challenge is finding activities to keep his brain stimulated and helping him survive her repetitions and forgetfulness. Assisted living facilities provide activities, but not any that he is able to do or cares to do. So far, he has been comfortable allowing her to go to group shopping activities, so he does get some time to himself.
  2. March 7, 2015 at 07:39 am
    Posted by Anita wilgers

    Love your story!!! You are an amazing lady, and I pray my husband can be as good of a care giver too me.I have early dementia and brain tumors. I am hoping I will be here too see my last son who in 6 grade get his diploma.y husband works for a rail road so I am bbyyself most of the time. I just want too say I love your story, and may god give you strength, and the love of family be your guide !!
  3. March 7, 2015 at 03:19 am
    Posted by Mark Babbitt

    I commend you for being able to realize your limitations and know that getting help to deal with your husband's deteriorating condition. That is the one thing that many people will not submit to, the fact that it will only get worse for the one who has the disease and for those charged with their care. It is heart-wrenching enough to see this happening to the person you love, tobprovide nursing care and hygienic care can be very taxing, emotionally and physically. Thrown in the guilt of marriage vows and then you're judged by others. Do the best you can.

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