“Damn it. My mind is mush. What was I saying? My brain just keeps going blank.” This, blurted out for the umpteenth time today by my own father.
It starts with a date, a word, then pin numbers, passwords, simple instructions, family member names, and then, “no Dad, George Bush is no longer President”.
Then he looks at me and we laugh. We both know he will look at the News to figure it out again before the doctor comes back in the hospital room.
Dementia is a group of symptoms that are common to several different underlying diseases. It could be temporary, or it could be progressive. Could it be high blood sugar? That pesky little tumor on the pituitary? Sleep disorder? Bradycardia? Alzheimer’s? Maybe a little of each or none.
Dementia is tricky as it comes and goes depending on the phase and underlying cause.
In a vain effort to keep our loved ones independent, we make lists and write notes. We help write the checks for the bills. We call and remind about tasks and appointments and re-explain why the doctor appointments are necessary.
Then comes the frustration and anger. Not just my Dad’s.. mine.
Our lives are changing. I don’t want to do this.
Sometimes he just looks lost. I want him to stay just the way he is. A little mischievous, a little crazy and a lot of strong.
Then without a reason, he snaps out of it, that is, until he can’t figure out who keeps messing up his computer. This is a telling sign of dementia but he refuses to listen to the doctors and follow up with specialists who can help him seek out causes and begin treatment. I don’t argue with him on this point any longer, and there is nothing I can do but encourage him and support his decisions.
I see this is just the beginning and lives are going to change. My family role is morphing to include taking a more active role in the well being of my father. Assisting without taking over. My father is fighter. Always has been, always will be, but he has to do it his way. Always has, always will. That will never change.
Already, I have learned a lot.
- Keep lists and instructions SIMPLE.
- Organize medical history, medication lists, allergy lists, living will and emergency contact information into a binder with tabs – remind him to take to appointments.
- Agree a lot. “Yes Dad, you can get a houseboat.”
- My kids are great when it comes to pulling together in a crisis one day, and not so much the next, be patient.
- Ask the hard questions.
- Make every moment as enjoyable as possible. We have a rocky history, but I prefer to hang on to the highs and not all the garbage in the crevices.
We have another family member that just placed both her parents in “memory care.” They are all having a tough time. She is doing her best to navigate un-chartered waters. So far there is not an abundance of guide books for how to handle the affairs of your parents.
This is a new journey for my family. The mighty man from yesterday may be a lost boy from time to time but he is not alone and we are going to face the road ahead together, with courage.
From out family to yours,
By the way – www.familycaregiversonline.net out of Texas has the BEST help I can find so far.
Some other resources that might be helpful to families starting down the caregiver path-