A Little Socializing on Valentine's Day...

 It has not been a very happy St. Valentine's Day in our house.  Pam woke up about 1:30 am and was brushing her teeth.  I explained that she should really go back to bed because it is very early in the morning and we were not going out until 6 pm.   So we both went back to bed.  At about 3:30 am she turned on the light in the den, waking me up and said that I need to start getting ready.  Again, I tried to explain that it is only 3:30 am and we are not going out until PM.  I even grabbed the analog clock in the kitchen to illustrate going around the clock.  The conversation did not go well.

 She lost her ability to understand time planning a long time ago.  But she could still relate to am vs pm and daylight vs darkness.  Apparently, that too is now gone.  She just did not understand.  Not only that, but it was my fault.  I was confusing her by manipulating time.  I would love to have that ability.  And she has been angry with me since then.  It is now almost 4 pm and she is still not talking and even refused our daily hug.  I was devastated.  

 Our evening event was the condo Valentine's Day gathering at the clubhouse. Everyone brings an appetizer and the Activities Committee supplies beer, wine, and coffee.  Pam was still kind of foggy, but we went anyway.  As she was getting ready, she seemed to have forgotten about how I manipulated time and she was back to her pleasant self.  It is amazing how caring and accommodating people are when they understand that she has dementia.  Several residents, which don't really know her, stop by our spot and engaged her in conversation.  I didn't do much socializing, just attended to her, making sure that she had some food and drink.

Yesterday was Thursday.  I was sitting on the couch watching some YouTube and Pam came out all dressed and ready to go out.  I asked where she was going.  "I was going to try to talk you into going to the mall" was her reply.  She wanted to engage in her number one activity... shopping!  She retired from JC Penney after eighteen years of service, but she just can't get shopping there out of her system.  Pushing her around in the transport chair is not that difficult, but often times, frustrating.  She knows the layout of the store like the back of her hand, but I can't read her mind about where to go next.  I know that I project my attitude, which is "Are we done yet?"  A new watch (four at home), a new purse, a couple of pairs of jeans (that are too small), and finally some boxer briefs for one of the grandsons and we are ready to leave.

We have an appointment with the neurologist at the end of March.  It has been a little over a year since our last visit and the she has not witnessed the advance of the Parkinsonian symptoms.  We focused our visits on the geriatric psychiatrist to deal with the hallucinations, and memory issues.  But now the physical issues are predominate.  Besides, we just feel more comfortable with the psychiatrist.  I am armed with the Lewy Body Checklist and hope to have the official diagnosis recognize this as probable Lewy Body Dementia.  I also have some concerns about her body temperature regulation (her skins sometimes feels ice cold) and her living off of acetaminophen for her back pain.  

On the cognitive side, I have not heard anything about the other Bruce in quite a while.  Maybe he has left town.  😊  But I hear more about the "upstairs" and "downstairs".  Our house at Shaving Hill Farm in Maine was two floors, with the bedrooms upstairs.  But our condo is all on one floor.  She often says "I need to go downstairs to...." while located in the bedroom or "I need to go upstairs to the bedroom" when in the living room.  I don't really understand how her mind can make her feel like she is climbing stairs when she walks down the hall.  But that is what is happening.  Her leg strength continues its decline.  I often have to help her take her shoes and pants off and swing her legs up into the bed.  For someone that was always so independent, I have been surprised that she has accepted the assistance so easily.  

All in all, I still feel very fortunate that I have not had to experience the aggressive behavior or anger issues that I hear about from other caregivers.  It never gets easier to deal with the pain of seeing your loved one go through this or the disappointment of all all of the unfulfilled plans that you had together.   I continue to try and learn as much as I can, and especially how to best deal with it.  I often think about how my grandmother must have felt after my grandfather died.  She never drove and never worked outside the home that he had built.  Her entire existence was  her family and my grandfather.  She lived another five years, thinking about him every day.  She definitely had the strength.  Do I?