Chelsea, thank you for sharing your experience. I am sure your insights will help many people dealing with caring for someone with dementia. I am a nurse and have vast experience caring for people with various forms of dementia or confusion, both in hospital and home environments. I have worked with caregivers on accepting what their loved ones say and not trying (uselessly) to correct them or re-orient them. But now that the person not remembering things or unable to learn new things is my husband, it is much harder.
My husband is 47 years old. I noticed cognitive problems several years ago, but it took quite a while to make our way to a diagnosis. His dementia is of the frontotemporal variety, with physical charicteristics of Parkinson’s Disease. His cognitive degeneration is far in advance of the physical symptoms and he has not been able to work for 6 years. His speech is often labored and it can be hard to follow his non-sequitirs in conversation. I struggle with allowing him the time to complete a sentence, not getting impatient with his repetitive stories or jumping to unrelated topics, and most of all with him not remembering things we talked about a day or two ago. It’s frustrating when he notices I am tired and offers to drive the car because we decided a few months ago that it isn’t safe for him to drive except very limited trips in very familiar places. Fortunately we found an excellent neurologist last year who has been a great support.
Even though my husband is still able to care for himself and can be left alone, he suffers a lot of anxiety when left to his own devices. He needs help to structure his day, a lot like a preschooler. Last time I took a trip out of town without him, he had a major breakdown after I got back. The stress was too much for him. The difficulties of caring for him led to health problems for me and my decision to stop working and take disability. He has done much better since I have been at home with him most of the time, leading to a great reduction in mysterious injuries and maladies that caused him to seek frequent emergency room care. One major key to my sanity has been finding a good psychiatric provider to manage his psych meds. Between her keeping his moods managed and the neurologist managing the overall disease, life has become much easier.
Best wishes to you and your family.