Lack of Appetite, Loss of Weight and Strength, A Prognosis...And The Week Ending 08/30/2015

Monday came with Mom being roused and encouraged to shower.  She refused.  Many attempts were made, but she fought.  She ate some yogurt, after dressing and stayed in her room and ate lunch.   She complained of intestinal troubles and they helped her with this.   Later, when the masseuse came Mom was eating lunch.  They chatted and finally Mom began to warm to the idea of the massage.  Alli was able to get her on the floor and Mom began to relax as they talked.  This was wonderful.  Alli was attuned to Mom’s discomfort and she worked on the areas where Mom stated she was experiencing the most difficulty.  We spoke about the possibility of her coming twice a week, but we’ll look into that later.

Also, her doctor’s office phoned to check up on her after Friday’s incident.  We had a very nice chat.  

I also arranged for Mom’s Service Plan Meeting on Wednesday where we will meet with the team that will help with her needs and services as she continues to decline.  

She was put on Miralax and after a short time, this actually cured the problem.  Her constipation dissipated and this one problem was solved.

Tuesday, Mom was incontinent after she had dressed.  When Leddy stated she needed to change her clothes, Mom was very upset.  She changed and went straight to bed.   Later that day, while Morina was walking her, Mom had another accident.  This was upsetting to her, and they gave her a sponge bath and Mom went to bed.  She didn’t eat much that day, though.

Wednesday, my brother, his wife, and I went to the service meeting.  It was very helpful.  We talked about Mom having a UTI and how they needed a sample to figure out which bacteria was causing it - it does make a difference, as Mom may have had a different strain and the empathic treatment may have helped, but not cured what she was suffering from.  Also, we began the discussion of hospice and received more information about this.

What we also learned was that Mom had truly gone way away from what I had believed.  While I thought she was doing fine with BINGO and the like, I discovered that she was having troubles with playing at this time.  She also had difficulties with choosing her prize.  This told me she had gone further down the slope than I had hoped.   

We also began the discussion of hospice and received much more information about it, while also making sure we had her DNR and all the pertinent information/forms ready.  They gave me a form I didn’t believe I’d been given before, and I took it home to fill out - something for them to post in her room to alert the medics should they be summoned.  This will inform them of her wishes.

Apparently, Mom has been switching from her bed to her recliner in the night, and this may be a demonstration of her circadian clock being completely out-of-whack.  It may also explain her extreme sleepiness during the day, but who really knows how this dementia truly works.

Mom had wet the bed that morning and had eaten nothing.  She wasn’t drinking anything, either.  This is alarming as she really hasn’t ingested very much in the past 5 days.  So, I was able to feed her some chicken, brussel sprouts, yogurt and some juice, but it didn’t add up to much.  She was in a very good mood, but it was one of semi-reality.  She was joking with us and quite charming, but she remained in bed under a blanket not wanting to get up.  

On Thursday, they were able to get her up, and two of them took her into the shower and scrubbed her down.  Mom was very angry at first, but during and afterward she was glowing and singing praises of how good being clean really felt.  Victory!  Finally!  She had a full shower after a little over a month!

She did go out and eat some breakfast, but then retired to her room and went back to bed.

This same day, her doctor phoned me to check in.  I had received a call the previous day about bringing Mom in for an appointment - they stated they would be willing to meet with us after hours, if necessary.   The doctor told me that from the information I provided, and from what she understood (from Mom’s progression and her knowledge of the disease - which she has dealt with many times) that the UTI was only a small part of the problem.  She stated that Mom was truly slipping downhill and that she would come in and pay Mom a visit sometime in the next two weeks as she didn’t believe it would be good for Mom to travel and walk in.  Now, how many doctors would be this wonderful?   

I told the doctor that from the patterns of Mom’s changes, that I was thinking that we might be looking at Mom losing her battle sometime within the year, or so.  She remarked that I was being too generous, but we could be wrong.  Mom might suddenly spring up and begin eating regularly for four months!  but this was doubtful.  She stated that it was quite common with LBD patients that they simply stop eating and drinking and this was the cause of their demise.  The brain stops triggering the need that tells them to eat and drink while making them believe they have no such needs.  This was a slap of reality.   So, with that I asked that I be alerted when she paid her visit so I could also be present.  

Also, the doctor remarked that we may be looking at commencing with hospice services at that time.  This is actually a relief, as it means she would be receiving more attention and services and it will also be a support for us, as well.  

I phoned later and discovered that Mom was still in her room, in bed, and had eaten nothing but a tiny bit of breakfast.   She was in bed and wasn’t willing to come out.  This is becoming more and more the norm.

Friday morning, Mom was still in bed wearing the same clothes from the previous day.  She had not eaten since breakfast, Thursday.  She complained of back pain, and she was unwilling to go for a walk or do much of anything else.  She was given her pain medication, but that didn’t seem to help much.  

Later that morning, Jean came for a visit.  Mom still wouldn’t arise, despite Jean’s attempts to encourage her.  Jean was told that Mom isn’t reading her paper, anymore, but just scans it.  The only times Mom got up was to use the loo.  

She hadn’t had any accidents staff knew about, but when Jean went to use the facilities, she found a very wet pair of undergarments in the wastebasket.  She snuck them out and told the staff they were in Mom’s room in the basket near the door.  This reinforces my hunch that Mom tosses them out to avoid embarrassment.  

At one point, Morina joined Mom while she was in the loo.  Mom was shocked and said, “Morina!  What are you doing here?!”  

“I’ve come to help you change your clothes, Norma.”

Apparently, as she reported to Jean, this was the only way they could get her to change her clothes.

Soon, they served Mom lunch, and with Jean’s egging her on, she did consume the shrimp salad and an ice cream cup.  That was all her nourishment for the day.  When Jean left, she was a little upset that Mom had declined so far so fast.  It is rather depressing.  

On Saturday, Mom was still abed and wearing the same clothes from Friday.  She didn’t want to eat any breakfast and complained that her body was aching all over, which made it difficult to sit up.  She did consume water and some juice, though, which is good.  However, they were not able to get her to roust herself and change her clothes.    She did eat about 80% of her lunch, then went back to bed, and didn’t show signs of getting up until the next morning.

Earlier, it was her beige pants she demanded to wear for days/weeks at a time.  Now, it’s her light blue pants.   However, we do know Mom looks fresh and clean (as does her garb) when we come to see her.  

Her attitude has been light and breezy, and she seems quite chipper, aside from the pain.  She does slither, rather, on the bed to move about, and I have a hunch she takes pleasure in the moves.  

Sunday came, and Mom was in a good mood.  Leddy came in and helped her dress.  Then, while Leddy stepped out, Mom took off her shoes and refused to put them back on.  She sat down in her recliner and refused to budge.  She also refused breakfast.  

When I arrived, Mom had her shoes on (much to Leddy’s surprise) but was resting in bed.  She was rather groggy.  It took some doing, but I managed to get her to rise up and come out for lunch.  At first, she stated she needed to remove her shoes, first, but I convinced her it would be improper and unsafe.  After nearly 30 minutes of cajoling and thinking of new ways to prop her up, she rolled over to go to the bathroom.

Once she was up and out of the loo, I escorted her to her seat in the dining room.  They brought her lunch (baked ham, yams with marshmallow sauce - ugh!, and zucchini something, finally some spice cake with whipped cream).  She took her pill with juice (which she drank about half of by the end of lunch) and began to eat slowly and deliberately.  I noticed that either the knife wasn’t very good, or her strength was lagging, as she cut the meat.  I offered to do it for her but she politely declined.  She ate a little over half her lunch, no dessert, and was ready for bed.

I noticed then, as she stood, that her balance wasn’t quite right.  I took her by the hand and led her to her room.  She once again visited the facilities.  Once out, she bent over the bed, stuck.  She hadn’t the strength to get in easily.  I helped her, once she managed to sit on the bed, by lifting her legs up and over.  She was lying in a “V” shape, but stated she was very comfortable and wasn’t about to move.  

Her voice is softer and she isn't always on point with her comments.  When I asked how her lunch was, she began to tell me about the charges for travel which segued to many other topics.  The best I could do was to nod and agree.  

I've also learned that instead of asking if anyone visited, to ask specific questions about visits, or trips; this triggers her memory, although not always.  Otherwise, she simply states it never occured or goes off into Lalaland about something unrelated.  

I had bought her some skin creams last Christmas, and I took out a tube and began to put the cream on her one arm that was easily available.  She liked it.  Then I did the same to the other hand, as I couldn’t manage to get her arm below her body.  

I then put on some Brahms on her cd player, and allowed her to drift off.

She has lost weight, as well as strength.  Another resident just passed who did the same thing.  I’m not sure how long she will be able to manage at this rate, but the best we can do is to humor her and let her know we love her.  

Book Review: You Oghta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer's Disease by Sandra Ross

If there is one thing that those dealing with a loved one’s dementia can understand, it’s helpful empathy.   While those around us who sympathize and want to be of assistance mean their best, we find ourselves wondering how they could help and then thank them and walk away, without actually taking advantage.  The reason we don’t is because we’re playing it by ear and the small amount of stress can easily break our stride.  It doesn’t mean we aren’t grateful, it means we’re actually in the dark, still, and needing to help someone else may be too much at that particular time.     

With Helpful Empathy, there is a light and understanding that there is a hand held out with answers and possible solutions to our needs; solutions we may have never even considered having a problem for, but then those problems do arise and we look for answers or remember them from something we read.  This is a book of Helpful Empathy.

A couple of weeks ago, I wrote about another book, Sundown Dementia, Vascular Dementia and Lewy Body Dementia...by Lindsay Leatherdale, which gave great information and resources.  Other books, such as Living with Lewy Body Dementia: the caregiver's personal, in-depth experience by Judy Towne Jennings PT, MA.,and  A Caregiver's Guide to Lewy Body Dementia by Helen Buell Whitworth and James Whitworth., gave us information we could use, along with anecdotes and very good information.  However, You Oughta Know, by Sandra Ross (author of the previously reviewed Going Gentle Into That Good Night) gives us not only more information but strategies and ideas as to how to implement them.

Because Ms. Ross has already gone down the road of Lewy Body Dementia with her mother, she kept notes and speaks to the reader about different stages and platforms of dementia, and what might be required in handling those effectively for the patient.  She talks about balance, walkers, bathing, sundowning, and most avenues those who are caring or dealing with patients would need or may need to walk at some point.  

But it’s not just the information she provides that makes this Helpful Empathy - it’s that she does it while putting in the relevance of her experience - she’s not overly chatty, but she lends the experiences she’s had to the strategy or issue and how she was best able to deal with it, along with some other ideas.  There is a relevance to her ideas, and I find this reassuring and it is also calming, spiritually.

While not all the ideas in this book will work with my mother or some others, but there are ideas herein that lend themselves to helping figure out ways to get her to bathe, to help her move, and learning more about what something she is having troubles with means.  

She begins the text with what dementia is, and further she discusses how it must feel for the patient.  This is a wonderful methodology that takes it away from what is typically clinical and dry.  While the books reviewed earlier are not necessarily dry, this is a book in which I found comfort and solace while soaking in the information.  

This is a book to keep nearby, along with the others mentioned, as resource and a go-to guide/manual.  

I am grateful to find something that I can call Helpful Empathy; I’m holding it in my hands and it is a keeper.

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.  

Feeling Tired, Moving Around, then a trip to the ER...OR The Week Ending 08/23/2015

This week found me calling and checking on Mom daily.  I began by shopping for underwear and mattress pads (waterproof).   Mom had been, apparently, throwing her panties out (no one can find any) - embarrassed by them as they were evidence of something gone wrong.  The mattress pads were in preparation for what I believe is coming in the near future - incontinence and the inability to make it to the loo during the night/day while she sleeps/rests.

On Monday, Mom ate lunch and dinner.  They were able to get her up and dressed in fresh, clean clothes.  Morina took her for a walk around the church and gardens outside of the facility.  Mom walked slowly as her balance is steadily declining, and she is shuffling much more.  She was very tired, still, as I mentioned on the weekend.  

Mom with Leddy

On Tuesday, Mom arose for breakfast and ate.  When I came to see her she looked quite fatigued, but we had a nice conversation.  I had been there to drop off the packages mentioned above.  She was wearing a different outfit from the day before, and in time she was willing to eat lunch, which she did, but complained of it being too salty (it was quite bland).  I wasn’t surprised, though, as it was pork, and she isn’t a fan, unless it’s bacon (so, it’s not all bad).    Her hands showed the wonderful manicure from the week before, but her hair was still not cut (she refused to go).

We discussed her having a massage, again, and she seemed amenable to the idea, so I contacted Alli, the massage therapist from before, who agreed to try with Mom, again, on Monday after lunch.  This may be a good thing!  After all, Mom complains of her back pain, and I have a suspicion she is also suffering in her intestines - this may help move things about and allow her to relax and feel better.  

She had also been with Linda, the gardening lady, who comes by once a week to have a “garden club”.  Two years ago, Mom had the star planter!  Since then, Mom has had no interest in participating due to her declines.

Later that day, Mom went to the music program in the main facility, then for another walk with Morina.  She was very tired, but attentive and willing.  A good sign.  She ate her dinner that evening before turning in.   

Wednesday, Mom was still tired, but arose for breakfast and went to Mass, which they hold in the great room of her cottage.  Connie and Jean arrived just as it finished (they came before lunch to escape the impending heat of the day).  This is a snippet of Jean’s account:

Dear Tony,

Connie and I got to St. Anthony's just before 11am.  Norma's room was not locked, so we went in, then thought better of that. So we met Norma as she and others were being escorted back from Mass in the dining room.

She seemed glad to see us; we all made ourselves comfortable in her room.  Connie did not notice what Norma was wearing, but said she looked nice.  I agree with that; did not see anything amiss such as food stains or other spots.

We did not ask about Mass, who was there, any questions...why not?

We chatted easily, and Norma offered us a Pepsi. I did not take one, but the other ladies did. Three cans left in the refrig.(NB It has been over a month since I put in a half case of the soda, and Mom isn’t drinking it as much as she used to).

Norma mentioned that the chair where I sat had been her great-grandmother's. I said I knew that,and that it is beautiful,and must be treated well.

Norma's speech seemed better than it's been lately. She had at least two complete sentences; mostly partial sentences, but always with expression and meaning, even if that was not clear to us.

I mentioned that the garden lady had been there the day before.  Could not tell if  that was in Norma's memory bank, but she did say Linda, the garden lady (yes, she named her) seemed to seek her out for the garden time.  I offered it was probably because Linda knows Norma likes to learn. (Why didn't I say it's because Norma loves to garden, or enjoys flowers?)

Connie told us she and a friend in ACCW were going to write a story about the coming ACCW convention.They send their stories to the Sentinel; sometimes the stories are used.

Something Connie said prompted Norma to ask,"Was it Pat Carr?"  I asked if she knew him;she said they were in the same class at St.Rose. I said that my brother Jim had worked with/for Pat in an insurance company. No more on that.

It was comfortable in Norma's room; temp was 72.  When she went to the loo, I turned it to 68 for a few minutes. Then I noticed both windows were open, so turned off the A/C.

Lunch was being put on tables, so we said our goodbyes.  Norma seemed sleepy then.

Mom ate her lunch, and went walking with Morina, then rested.  She doesn’t eat with the others, preferring to rest before and then come out when it’s quieter (I believe she is avoiding contact with most of the other residents, as it is soooo quiet during meal times).  

Thursday, Mom refused to go with the attendants to have her hair done, so Morina took her down.  Mom had her perm, then returned.  She will have a pedicure next week.   She also went for a walk with Morina and was still complaining of pain and fatigue.  

Friday, I phoned and Mom was still in bed, but they were unable to wake her - she was breathing, but she demonstrated very little response when they attempted to get her to open her eyes.   

When the aide came in to get her ready for breakfast, I later discovered, Mom was fully dressed and shooed her out of the room as she went back to bed.  The aide came back later and Mom had done the same.  It was probably 5-10 minutes later that I was on the phone and they began trying to get her to respond.

Mom rests in the ER

I was phoned a short time later by the attending nurse who stated they were calling the ambulance, with my permission, to get her into observation and run some tests to see what might be the problem.  She was also suspecting a TIA (Transient Ischemic Attack - a small stroke) as Mom’s face looked rather sagged on one side.   We agreed she’d go to Providence in NE Portland.  

I drove to the ER where I found Mom sitting up in bed.  Her voice was nearly normal and she didn’t seem very tired - quite the opposite of how she’s been in the past weeks.   She spoke of something with her grandfather, and that my dad was up to something, but I can’t recall what.  

Later, I took her back to St. A’s, as all the tests came out normal, so they discharged her.  She walked slowly, but it wasn’t a shuffle today.  Was this a rally before another decline? I wondered.

She began scratching at the nail polish on her fingers, because she said it didn't look natural enough, and scratching it made it look better. <sigh>

Also, there is concern as while they did their best to rouse her, she did open her eyes briefly then went back into sleep - was she truly unconscious at this time?  What was really happening?  This is the underlying question.  

Back at St. A’s, she went to use the loo (she used it at least 3 times at the ER), and came out for lunch which she ate about 75% of, but she dug right in to the dessert!  She then went to reading the paper when I left after speaking with the Nurse in Charge.  

Saturday, Mom was up and vital.  She was dressed and eating breakfast when I phoned, and seemed rather agreeable.  

Later that day, in the early afternoon, my brother went over for a visit and Mom decided she needed to nap - so she crawled into bed and fell fast asleep within moments.  He stated she seemed tired when he had arrived, and after a brief conversation she stated she was quite tired.  

So, with her comatose, he left as there was nothing else to do.  

Sunday (today),

Mom was up early, but she had slept in her clothes (again).  Leddy (one of Mom’s favorite workers) tried to get her to take a shower, but Mom fought back and grew angry with her.  Finally, Leddy was able to get her to change her clothes so she could toss them in the laundry, and Mom changed into clean clothes Leddy had picked out for her.  

After lunch, Mom read her paper for a bit, then decided she was too tired and went back to bed - she was fast asleep by 230 pm.

Mom is still tired and growing more so.  One observation may be that Mom may be going to the bathroom up and down all night, which may explain her exhaustion.  They are also wondering if she sleeps, sometimes, in her recliner, as they, many times, find her there sleeping in the morning.  It’s all so confounding, and Mom tells them what she thinks she did, but that isn’t reliable, as we all know now.  

Mom still won’t bathe - and this is a major issue at this point.  It’s now been a month and everyone is at a loss as to what to do next.  So, this week we will be having a meeting to try to solve some of these issues and put together a service plan for her.  

So, that’s the scoop!

Book Review: Living with Lewy Body Dementia: the caregiver's personal, in-depth experience by Judy Towne Jennings PT, MA

Not long after Mom had been diagnosed, I became hungry for more knowledge.  I decided to read up on as much as possible, looking to the Kindlestore for anything that might even hold more clues for me.  At that time there were only a few books that dealt with LBD so I bought them.   Now, there are approximately 60 titles related to the term, and the number is growing.  

Luckily for me, there wasn’t a great deal of browsing or shopping to be done.  I found the 7-8 titles that were affordable (seriously, there were some in the $80-$700 range - I didn’t need to be that technical, as I could probably find them at the library!) and I bought them.  I read them, cover-to-cover, and eventually I forgot about them until I decided to write these reviews, and I was so glad I was able to re-read them!  Especially this one.  

Judy Towne Jennings PT, MA, has written from her own experiences with her husband, Dean, who was diagnosed in 2008, although they had been attempting to figure out what was wrong since 2005.  Through her experiences with her husband and her knowledge as a physical therapist Mrs. Jennings has written a resource book that I would suggest every family member, caregiver, and anyone associated with Lewy Body Dementia read and keep handy.  

While reading, I was able to understand (better now with the passage of nearly 2 years) Mom’s decline and what this means in her progression.  While LBD doesn’t always follow the same series of progressions that others, say Alzheimer’s, might, it does have characteristics that fall into a pattern during the regression of the patient.  

What Mrs. Jennings has brought out are not only the symptoms and progressions of the disease, but also pointers for those who are caring for the patient - be it in the home or in a facility.  What are the Do’s and Don’t’s of the situation? What are steps to take to help in case? What does this symptom mean? How do you handle XYZ?  And, to top it off, she offers an appendix of resources in the back.   She states, very clearly, in the introduction that this book is a result and “compilation of the trial and error strategies” that she and her husband used.  To be honest, it all makes sense.  

Her husband and she first learnt of the diagnosis and what the ramifications were, so he decided to fight back for as long as possible by playing as much tennis as he could.  He stayed active until he was no longer able to be effective and his abilities began to suffer the consequences of the diagnosis.   They began to plan, work with the doctors, and as time went on they worked together until he was no longer able to actually function cooperatively.

This book takes you from the beginnings of the diagnosis when LBD really wasn’t anything anyone had heard of through the end of the journey for him and the grieving process for her.  

While not every snippet of information may seem relevant at the reader’s part of the journey, this is something to keep nearby as reference - you never know with LBD what will happen next!

There is information on medical, medicinal, practical, spiritual, physical, legal, and mental aspects for the caregiver and ideas for maintaining care and good health for the patient.  

I hadn’t thought of how important car maintenance was for the caregiver and patient until she mentioned it!  That’s a detail most won’t include, but it’s so vital and practical.

This book is quite readable and affordable, even if you’re buying it in paperback.  I heartily recommend it!

Jennings, Judy Towne PT, MA.  Living with Lewy Body Dementia: one caregiver’s personal, in-depth experience.  Bloomington.  2012.

Available:

Google Play Books

Amazon.com

Powell’s City of Books

Barnes & Noble

The Must Have List: what to have in place just in case ....

With the future so uncertain as we age, there are so many things we know we need to do but would rather not.  We don’t necessarily want to face that reality that we all will have to face our demise.  But, too, there is also the chance that we might become incapacitated - be it through illness, accident, or some event that puts us at the mercy of others.  Forethought is always the best defense.  

So, that said, what I will attempt is a list of the items you really should have in place.  Sure, there may be changes that need to be made - but make them sooner than waiting until it’s too late.  

I speak to you, the reader, but this is also advice for your parents, friends, relatives, etc.  No one expects to be diagnosed with dementia or any other ailment;  this is just insurance for you, your family, and friends so you are allowed to maintain your dignity while you are fighting.

1. Medical Power-of-Attorney.  This is a must.  You need to assign someone the role of making all those decisions for you - someone you trust; don’t assign someone because they demand it (sometimes it’s best to tell those people that you would rather have someone who isn’t quite so close to you as they would have more objectivity and wouldn’t be quite so blinded by emotion), but because they are people you trust.  Usually, you want two people.  

Mom had two people - her best friend in Port Angeles, as she was the one who was geographically closest and could deal with anything quickly, and me, as we had discussed her wishes and she believed me to be the one who would be unfettered by anyone else’s opinion.   Once Mom was committed, I became the sole Medical PoA for her, as her bestie was too far away to help make any decisions, and I was readily available.

  2.   Durable Power-of-Attorney.  This, too, is a must.  This will be the person, or people,

who you will determine to take care of all your affairs, financial and the lot while you are

incapacitated.  

Mom chose three of her sons and we determined it would be best for just one to handle

things (Yay, me!).  And that worked.  They are there for advice and they also do their part,

as I cannot fathom many facets of what needs be done - they do.  Luckily.

  3.       Elder Law Attorney.  This will be helpful to determine and advise in cases of needing

to locate funds or handle the MedicAid world.   They can help you Spend Down,

determine assets, determine how to navigate whatever path needed to be followed in a

time when either you or a loved one needs to find a  caregiver or a care facility.

 4.      A Good Medical Team.  Be it Gerontologist, Cardiologist, Neurologist, or whatever sort of

team you need to put together.  With Lewy Body Dementia, I had to make many calls to

find those who knew the disease and would be knowledgeable enough to help us down the

rocky road.  And, what makes our team even better, they know each other and they talk -

priceless!

 5.       A Will.   A good attorney will help you put this together.  This should enable you to rest

knowing all your assets are taken care of as you wish.  It also allows your heirs to avoid a

lengthy process of dividing your estate, which could cause unease amongst them (and in

some cases, there are those who would actually enjoy that thought).  

You might also look into making a Living Trust, in which you keep all your assets, and

upon death they are parsed out to your designated heirs.

  6.      A Living Will. This is important!  What are your wishes should you become

incapacitated and unable to determine if you would rather be resuscitated or not, kept

alive (for how  long?), or whatever you need to determine you die with dignity.  

           Mom doesn’t have one of these, however, she has made her wishes quite clear, and it is

up to me as the Medical Power-of-Attorney to follow her wishes.  We already have the

DNR notice with all her doctors and at the facility.  

7.        You should also be able to determine the following in your community, just in case:

1. Adult Daycare
2. Good Care Facilities (I’m thinking Memory Care, but you might think of other reasons)
3. Support Groups for you or your family.
4. Life Insurance
5. Medical Records - have a list of allergies to drugs and other items.
6. A list of Bank Accounts, Savings, Investments (who is your broker(s), Life Insurance, Titles, Deeds, etc.  And, should you have a bank deposit box, please let them know, this as well.

My father did it right - mostly.  Before he died and when he and Mom went on that fateful trip, he showed her where all that information was kept.  He held it all in a file drawer in clearly marked file folders, together, toward the front.  This eliminated a great deal of confusion.  He clearly marked out instructions for Mom, knowing she’d not be thinking clearly (and she was never really good at directions - she had other people do things that required them).  

Hopefully that took care of the majority of Ought To Haves - especially when dealing with a parent who refused to think she would ever suffer dementia, to those who might be able to plan for the Just In Case.