The Twists and Turns of the LBD Roller Coaster ... OR The Week Ending 09/06/2015

What a week!  What a wild ride!  With Lewy Body Dementia, you never know what is going to be slapping you next.  There are highs and lows, and ups and downs, twists and turns.  There are days you find yourself at Disneyland, others you’re in Dismaland (a real place in Weston-super-Mare, UK), and others you’re in a maze from … well, whatever.  So it has been this week.

On Monday, Mom still wasn’t doing very well.   She ate a little lunch but not much of anything else.  She refused to do much.  She complained about back pain, and made several trips to the loo, but insofar as we could tell she hadn’t any accidents.

Tuesday, Mom still wasn’t doing very well.  She was showered and accepted the help.  She then ate breakfast and only a nibble for lunch.  She did eat some pudding, but that was with great encouragement.  She spent her time between the  bed and the recliner.  She had no inclination to go anywhere.   But, Morina was able to shower her.  Mom was thrilled once the water hit her and Morina began washing her.  She said she felt wonderful!

Wednesday was a very busy day for Mom.  Morina got her up, changed her, washed her, and after she had dressed her, Mom took off her shoes and pants and refused to budge from her chair.   She was angry with the pants Morina had given her, as her others were put into the laundry.   Luckily, she had taken care of that problem by the time the RLC (Connie & Jean) showed up to visit.  

While visiting, Mom got up a few times to use the facilities.  At one point, according to Jean, she opened the bathroom door wondering what it led to.   She was assured it was the bathroom, and that no one would be in there, nor would anyone else enter, as it was hers, and hers alone.  So, Mom decided to take a shower on her own.   She poked her head out the door when she was done, finding Connie and Jean sitting there.  She had thought them workers, as she didn’t recognize them.  She then dressed and they resumed their chat.  

Jean stated that Mom was also suffering from crampings at that time but was still able to manage her lunch.    The ladies left after a couple of hours, and I arrived.  They told me she was not wearing her shoes, and no matter how they tried, she would not put them on.  So, I walked in to help but Mom had put her shoes on, already.  

She was tired, fading in and out.  She complained of a terrible pain in her pelvic area (I hadn’t spoken with Jean yet).  Finally, her doctor arrived, as we were going to determine whether Mom was ready for hospice or not.  Mom refused an examination as the doctor wanted to see what the pelvic pain was all about.  Suddenly, we found out the cause of the pain.  

Mom now wears Depends.  She had thrown out all her panties and they could find only one pair, which was soiled, and they threw these in the wash.  The pain was now gone.  Mom still refused an exam.  

The doctor and I conferred, and tried to figure out what to do - without the exam, and with Mom not giving much information, we had to think hard about making the hospice determination.  Finally, we realized we hadn’t looked at her weight.  

In July, Mom had lost 10 pounds from lack of eating.  From August 1 and September 2, Mom had lost another 16-17 pounds.  This was enough to signal the referral.  Bravo!  So, the doctor left with the promise of a phone call the next day to begin the process.  Amen!  We’ve been so worried about her, especially when she won’t eat.  

It seems as though Mom’s brain isn’t giving her the signals to eat/drink as it does with the rest of us.  This is typical, I discovered, of dementia patients, and it signals their path downward toward the final steps.

I ran out to the store to buy her some Depends, and when I returned I discovered that my frail, semi-somnolent mother had eaten dinner! I wasn’t sure how much - I later discovered she took a couple of small bites and then went back to her room - so, not very much.

Thursday, Mom got up, was washed and changed (I’d have never suspected that Mom would allow anyone to put diapers on her, let alone wash her) and out for breakfast.   She was quite happy, as you can see in the photo below

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She also ate lunch, and it seemed she had a bit more energy.  

Friday, Mom was washed and changed (she is having accidents rather regularly now - thank God for Depends!).  She ate breakfast and actually joined some of the other residents for “Play Ball”.  This is re-assuring.  

She ate a little lunch, but no dinner, which is becoming more typical.  

Saturday, Mom got up, dressed, and then allowed the aide to change her and wash her (she’s having accidents, now, but it isn’t stressing her - she likes the Depends, and she likes them washing her.  She went out and joined the others for breakfast.  She ate quite heartily I’m told.

A bit later, my brother from Vashon came in to visit.  Mom was standing near her door, not wanting to go in - she wasn’t sure whose room it was.  He helped her go in and then they visited for quite some time.  They walked about the facility, but not outside - she didn’t seem all that excited about that prospect.  He was quite surprised and shocked at her state, as the last time he’d seen her she was having a few difficulties, but now she spoke brokenly, not in full sentences, and wasn’t making much sense - but he went with it.  I came in and we chatted with Mom and then left for lunch.   

At lunchtime, my brother in Portland came by for his weekly visit.  Mom was sitting at the table with her lunch, asking where I was (She still seems to believe  I sleep in the bed with her each night, so I guess that’s continuity). She nibbled a bit at the salad, but didn’t touch the meat or much of anything else - so she ingested some calories, he stated.  

She also glanced over the paper without digesting or spending much time on anything.  Finally, she said that she’d like to go outside with him, but she needed to use the loo first.  So, he left the room.  About 15 minutes later he went to check on her and she was in bed.  She wasn’t about to budge.  So, that’s how that ended.  

Despite Mom’s morning surges of energy and her being more willing to come out to enjoy things, rather than stay in her room at that time, she is going downhill.  Sure, there are victories, small as they may seem, but they are not ones that signal improvement and change for the better - rather they are blips that demonstrate what’s left.  

Today, Sunday, Mom arose, allowed Leddy to change and wash her, then came out and ate a hearty breakfast.  She stayed at the table nearly all morning, reading her paper - except she doesn’t truly read it any longer - she looks at the pictures and fiddles about with the pages.  Next, she ate most of her lunch and then requested some help to her room - about 10 feet away.  She was extremely tired.  She then went to her recliner and continued to read, until she began to fall asleep and went from chair to bed.

It’s true, this disease is a roller coaster.  There are ups, downs, and twists you might never expect.  Soon, you become accustomed to how life is, but then you find yourself faced with another inversion that sneaks up on you.  While Mom is better and the constipation is gone (so is the back pain, sciatica, and nausea), she is slowly weakening as the disease progresses.  

Tomorrow we meet with the hospice team.  Perhaps they can help answer more questions.

This is a picture of Mom from a little over a year ago.  Can you see the differences?

Pondering

Pondering.  Mulling.  Recalling.  Trying to understand what we missed in the early stages of Mom’s LBD is always tugging at the bells of my mind (that’s an interesting image, I must say - but I’ll keep it!).  The more I read, the more I muse and think.  

As I was reading earlier in the day, I came across something that made me stop.  It had to do with dizziness, nausea, constipation and dementia.  For a few years before Mom was well underway with overt symptoms of LBD there were other indicators that we had no idea existed, nor would they be anything to which we would pay much attention.  

I can recall around the summer of 2007, give or take when Mom was at the beach house and her cousins, Marion, and Janet, came for a visit.  Her other cousin, Alice, lived up the road in Astoria and they be-bopped between her house and the beach house for variety.  I know Mom really enjoyed the visits, and when Alice came hopping into the house with her tennis racquet Mom was at the ready.   They walked down to the courts and played, but Mom tired quickly and they headed back to the house where she went down for a nap.  

There were some other things that seemed odd to both Janet and Marion on that visit, as well.  They phoned me and asked if Mom was doing alright.  I had not noticed anything that was amiss with her, just her aging, and told them.  Had we known then what we know now I may have paid closer attention and tried to figure it out.  

Yes, Mom was becoming more tired and easily nauseated more frequently.  It seemed every visit we had she would state this but figured it had more to do with manipulation (to get me to do more than I already was) and hypochondria, which she seemed to own.  And Alice (who now suffers the same as Mom with LBD) showed no signs of slowing down, other than age - and she was just an eager jackrabbit when it came to playing sports and being involved in activities, although she, too, had slowed down her participation as time progressed.  

In 2009, Janet again phoned me, and said they felt something was really wrong with Mom.  She was very concerned, but we really hadn’t noticed anything at that time, either.  It wasn’t until 2012 when Janet and Marion were, again, down at the beach, that I began to notice something was strangely amiss with Mom.  

During that visit, Janet and Marion, along with Mom, were bouncing between Alice’s house and the beach house.  Mom was truly weary.  She would phone me in the afternoon and tell me she was coming to Portland the next morning and staying until that Sunday or Monday.  Then, she would phone again the following morning and tell me she was staying.  That afternoon she would be  calling again and the pattern kept going until Saturday, (when she was originally supposed to be arriving) when she actually appeared.  

Now, I live on a “mountain” in the suburbs, and it’s about a 250-foot elevation climb in one mile from the nearest grocery store.  Mom had, in the past, gone down and picked up a newspaper and then walked back up.  She really did hate the hills, but while she would be tired and a little dizzy, she would recuperate in a reasonable amount of time.   By 2009 she was unwilling to walk back up as she would be quite dizzy from a leisurely walk down, and I’d also noticed that she wasn’t willing to go for very long walks at her house in Port Angeles, either.  I wasn’t sure the cause, but I put this to her age, as well.  

In 2012, I came home from work one day and found her collapsed on the bed in her room in my house.  She’d been there most of the day, and was exhausted from walking down the street to the store for a paper to find there wasn’t one that day.  The hike, she said, nearly killed her.  

I began to notice that she was becoming more easily tired and always seemed nauseated, as well as dizzy.  I wasn’t sure what that meant.

Today, I realize that she was suffering as the Lewy bodies began to amass on her brain.  Her blood pressure began to peak and digestive issues also began to manifest themselves inside her.  

The blood pressure was odd, I thought, as I recalled one or two times when it had crashed on her in the ‘90’s and she was rushed to the ER.  Surely, it couldn’t have reversed itself; yet this would explain the tiredness and the dizziness she was experiencing.  And, high blood pressure is also a side effect of dementia - why?  I’m not sure I can say with any reasonable fact at this time.

Her nausea, I’m discovering, has to do with another side effect of dementia - it can be caused by constipation; another side effect.   Mom has been on laxatives prescribed for this, but it’s an ongoing issue.  It could also be why she’s not very hungry lately.  She would never tell anyone as she believes it to be a private thing, as well as nothing you would discuss openly. There are those who would say they are a side effect of the medications, but she had these problems before she ever took them. And, from my readings, these would have subsided by this point; in other words, it's caused by dementia somehow.  

Had we known then what we know now would matters be handled differently?  I’m not sure.  But what I do know is that posting this might help someone who has questions that need answering.  

Just pondering.