Lewy Body Dementia is a roller coaster - and everyone's process is different. There is no real way to delineate the stages as there really aren't any. One day things seem lost, and the next all is back to how it was. No one really knows what to expect next.
This is a bit disconcerting. One would prefer having something more definitive to be able to prepare for anything upcoming in the process. I like to think of myself as one of those.
We have the symptoms. We have the knowledge of forms of progression. But as it is a peculiar disease that affects the patients differently, it's a tough nut to pin down as far as steps.
So, I'm going to attempt to pin down the progression for Mom as it has come along.
1. Confusion and the Inability to perform Daily Tasks.
Mom was forgetting how to operate her television and the cable. So many times she'd phone and tell me I needed to phone the cable company to fix it. She'd forgotten how to switch between the video mode and the broadcast (cable) mode.
Mom forgot how to email. This was very odd as she was one who would forward copious emails from others to everyone else, daily. She would correspond with most people this way, as well. Then, she forgot.
She forgot how to get on the internet, even though it had been so easy for her in the past. I even wrote instructions for her - which she threw away (she stated she didn't realize she was doing this).
She would turn the ringer off on her landline and then believed I needed to drive up and take her phone shopping. After fixing it over the phone (which wasn't a quick call - believe me) she went and did it again, only to phone again to learn how to fix it (this occurred many times).
She didn't understand how to turn her cellphone on. She'd phone me and tell me it was broken (yes, she'd call me on the broken landline). I'd have her push the button, and voila! This was a common occurrence.
She would forget paying bills, or would simply not pay them. Her record keeping went out the window! She was always so good about this. I recall her telling me something was wrong as all her bills were all over the table - her friend confirmed this, and helped her out.
She'd put used dishes back in the cupboard - maybe rinsing them and maybe not - a real crap shoot if you were visiting!
She'd forget to clean. One Christmas, instead of exchanging gifts, she cleaned for 3 hours. Then was unable to wrap anything.
These are just some of the progressions of confusion. I won't talk about her driving....'nuff said.
2. Hallucinations - Mom's perceptions were becoming rather questionable. She would talk about incidents that never happened, and told many people about them, which painted other people in a terrible light - they couldn't have been further from the truth; and yet, she demanded they did take place.
She called at one point after being kidnapped and taken to Alaska - and then she escaped. Next day she was being held hostage in a house that wasn't hers (it was hers). Another time she believed her mother was walking with her and wandered off.
These are a taste.
3. Sundowning - In the evenings, Mom would begin asking about her mother and where she'd gone. She'd also ask about Dad. She was under the belief they'd just been present.
4. Falling & Movement Problems - I recall Mom slipping on some ice on her driveway and having a very swollen and bruised hip, which caused her great pain for a period of time. I bought her some yaktraks, which she never used (she had others but never could find them - they were in the front closet).
Another time, she went walking and less than a block later was stricken with chest pains and the inability to breathe. This subsided within hours, but it meant I took her to the ER to find out the cause - they couldn't find one (the doctor told me she was demonstrating normal dementia and cognitive decline for a person her age...arrrrrg!0
Her stamina and ability to do things with others began to decline. Her energy level was growing less. We also noted that her appetite for all things ice cream grew! Hmmmm.
She began to feel pains in her shoulders and sides.
She began to shuffle - not completely, but enough for the brothers to all take note.
She has begun to do less and less to help herself and others in, say, putting on her compression stockings - it's almost like putting them on a doll with slight resistance and a very loud "Owee!' button.
5. Memory Loss - What seemed to be one of her strong suits insofar as recalling incidents pertaining to herself, has vanished. She doesn't remember doctors' visits, her cataract surgeries (she vaguely remembers the doctors, but for the most part they are lost in the fog), the dentist, etc. What is not on her plate day-to-day doesn't stick. This is growing worse on a weekly basis.
6. Apathy and Loss of Emotion (especially facial expressions). Mom has always had a face with character. But gradually this seems to be losing its grip, as well. Of course, when out with others and faced with wit she catches, she does smile, laugh, and even grimace at times, depending on the mood and time. However, for the most part she has grown quieter in her eyes and expressions.
7. Paranoia - Mom was furious the other day when we returned to her room and she discovered they'd laundered, folded, and hung her clothes (I had given them orders to search high and low for anything with any dirt on it, as she was oblivious to having any degree of filth on her clothing). She keeps stating she's being robbed and the thievery is rampant (this applies to the memory part, as well). All her things are present - she just hides them in somewhat interesting places, to keep anyone from taking them - including herself.
Mother is becoming a shell of what she once was. She's still a somewhat interesting conversationalist, as you aren't really sure what she's going to tell you - about family history, places and events. It's difficult to discuss anything truly relevant, as she's fading more into a different reality which can be fascinating (for instance her stories surrounding Shirley Temple movies, and her memories spurred by the viewing of one).
What to expect at this point is more decline both physical and mental. Frustrating? Yes. But going along with her reality helps. All the research demonstrates that nothing will 'snap' her back. Music or some sensorial event may trigger memories, but will not bring her back; when people try to explain the faultiness of her memories or reality, it creates frustration and resentment on her part - and within minutes it is again lost. A battle that need not be fought.
It's quite a somber dilemma, but a vital learning experience for those trying to understand and work with her.
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