And Time Keeps Marching On....

I am regularly asked, by people that know of Pam's condition, "How are things going?"  And I almost always answer that things are going well.  That she is having more good days than bad and that I feel fortunate because I have not (yet) been subjected to some of the significant behavioral changes that are associated with the various forms of dementia.  I know that it is my pragmatic self that is answering that way.  I can't help it.  That is my non-thinking response.

The reality is that the state of things is very dependent on the time of day.   For example, it is 1:30 am and I am on the computer writing this and Pam is asleep in bed.  She went to bed at about 8 pm.  I joined her at about 10 pm when I heard rustling in the bedroom and found her putting on shoes and socks so that she could "go help the girls in the living room".  But a little coaxing got her back in bed.  I can't figure out whether her sleep habits or mine are the worse. 

But it’s clear that the disease is progressing.  The REM sleep disorder has been present for at least a decade.  The concern that drove me to have her see a doctor when we returned from Florida was the cognitive loss for things like the TV remote and using the microwave.  The decline in cognitive abilities continues. When presented with a verbal list of what is available for breakfast or lunch, she just can't process it.  So I have created a paper menu and she is able to take the items one at a time and decide what she wants to eat. At times she doesn't understand that the wall switch must be On for the item to work.  While there is some memory loss, it is really the cognitive loss that is predominant.

Most Lewy Body dementia sufferers develop symptoms similar to Parkinson's disease and that is the part of this that is most visible to others.  Pam has had a shuffling gait for months.  This is partly an issue of lifting the feet and partly one of balance.  And her balance has certainly degraded in the last few months.  I regularly walk her down the hall to the bedroom and when we go out in the car she needs help getting into and out of the front seat.  We have been using the transport chair quite a lot lately.   The other symptom I have noticed is her right arm.  She has had the Parkinson's tremor in her arm for a month or two.  And when she walks, that arm is typically just hanging at her side.

Last Sunday afternoon we attended an outdoor concert at Stark Park in Manchester with Courtney and her family.  An Eagles tribute band was playing.  Another Tequila Sunrise is well known on the east coast and the lead vocalist is an old friend of mine.  We had a wonderful time.  The music was great and so was being out in the summer weather.  She enjoyed singing along with the music and chatting with her grandson.  On the way home from the concert, Pam mentioned that she has lost her sense of smell.  That is a common symptom of most forms of dementia.  I am one that loves to eat and I could not imaging what eating (tasting) would be like without the sense of smell. 

So time marches on and so do the symptoms.   The hallucinations have subsided significantly.  Recently there have been a couple of instances of delusions... usually a spider or something dripping from the ceiling.  I have learned to acknowledge what her brain tells her that she is seeing or hearing and then reassure her that it is OK now.  More recently I have noticed "sundowning" in the late afternoon or evening.  She can have a good morning and early afternoon, watching TV and being conversational.  But as the afternoon wears on she becomes much more withdrawn and sometimes even has a hostile attitude.  Loud noises or scenes on TV that she disagrees with trigger her and her remarks become snappy and often accompanied by a scowl.  

All of these symptoms have appeared in the last eighteen months (except the REM sleep disorder).  Obviously, some have probably been there under my nose and I didn't get it.  But it has been the rapid onset of symptoms that has caught me by surprise.  And it fortifies my view that getting more educated about the disease is absolutely vital for the future.  As a caregiver, I must know what to expect and to have some strategies thought out on how to be supportive.  Denying the reality of what her brain is telling her is counter-productive.   The other future issue that I struggle with is balance.  Right now, Pam is pretty self-sufficient and I know how important that is to her.  So I feel like the stress of being the caregiver is not significant.  I do have some "me time".  But as things progress, the demands will increase.  Just what is the balance that I can manage?  When do we need to start bringing someone in for additional support?  I don't currently have answers, but they are not really questions for another day.  They are questions for now in order to be prepared.

Enjoy every precious moment with your family.  We have little control over when those opportunities will no longer be.