What Is Spectrum Dementia, and What Are the Differences?

What is a spectrum disease?  It’s a mental disorder that includes a range of linked conditions, sometimes also extending to include singular symptoms and traits (Spectrum disorder).    This usually pertains to Autism, but it also refers to Dementia, as well.  

According to the information from the Lewy Body Dementia Association, and the below lecture (sound is awful, but the information is incredible), there is a spectrum of dementia - at one end is Alzheimer’s (AD) and the other end is Parkinson’s Disease (PD).  Lewy Body Dementia falls somewhere in the middle, but there is no definitive point at where it might occur on that line.  

You see, LBD and PD stem from the same cause - alpha-synuclein acids in the brain.  PD is caused by the prevalence in the motor control portion and LBD has the little demons mostly surrounding the cerebral cortex, as well as other portion.   AD is caused by Beta Amyloid plaques in the brain.  AD is so very different from LBD/PD, and yet there is the phenomenon of mixed dementias - in which the LBD patient may have some of the same plaques and tangles of the AD patient, and the AD patient may develop some of the same symptoms as the other.  It’s a rather tangled and confusing issue.

There have been studies performed on locating just where on the spectrum LBD might be found, but they haven’t been able to make any determination (Ballard, C et al. "Differences in neuropathologic characteristics across the Lewy body dementia spectrum." Neurology 67.11 (2006): 1931-1934.).  

Now, the LBDA (Lewy Body Dementia Assn) expresses that the disease (some also state this is more a syndrome than a simple disease) runs a great spectrum of disorders that come together into the form of dementia which has found its way into our lives (The LBD Spectrum).  There is also a good article that does a much better job of articulating in few words than I at Alzheimer's Disease: One Type of Dementia on a Wider ….  While the end is a promotion, you can take the rest into account.

Following is a video which demonstrates (I may have posted it many moons earlier) the differences on the brain of PD, LBD, and AD.  As I stated, the sound is rather horrible, but the information is very intriguing, and I find myself watching it from time to time and learning much more:

This does such a fantastic job of showing the SPECT and PET scans, which are so expensive, that you are able to see the differences of the plighted brains.  There is a great deal of differences between the two ends of the "spectrum" and with LBD, as well. 

I hope I've been able to shed some more light on the topic, for those who might still have questions. 

The Week Ending 09/27/2015

Could it be the Harvest Moon and the Eclipse?  Could it be just the odd way that LBD conducts itself?  It’s difficult to know.  This week proved to be like most others - somewhat uneventful, and yet, there were some noticeable nuances that occurred. 

On Monday, Mom ate well, she was active in her conversations, but she refused to participate in anything else. 

Tuesday brought the hospice nurse, Jennifer, who had been advised by Leddy as to how to get Mom to respond and listen to her when taking her in for her bath.  She’s direct and doesn’t allow Mom to engage her.  Perfect! 
Mom arose late but ate breakfast and then dabbled in her other meals - so all-in-all, she ate two meals, which is par for the course.   Mom still did a little conversation exercise, but not for very long. 
Her massage therapist came by twice to engage Mom, but Mother was too engaged in listening to other conversations and dabbling with her food to care - hence, Alli, the therapist, left and called to let me know that she would be glad as a reference, but wasn’t going to make any further attempts as Mom hadn’t been interested for the past 3 weeks.

My cousin (whose mother is in another facility in Portland with LBD) called me in the morning to ask if it would be okay to meet her, her mother, cousin Janet, and Aunt Keiko (my late uncle’s widow) at Janet’s in the early afternoon.  I had to remind her that Mom couldn’t go out anymore, and that I would have needed at least a day’s notice for such an event, anyhow.  This was difficult as I know Mom would love to see Keiko and Alice (my cousin’s mom), but it just wouldn’t have been feasible with my work.

Wednesday, Mom arose rather late and was visited upon by her RLC, Connie & Jean.  Following is their experience: 

Dear Tony,

We arrived at St. A's a bit before noon.  Norma was lying on her bed, dressed, no shoes yet.

Noelle the nurse was there, after checking her blood pressure and whatever else she checks.   She said everything was in good order and left after a few minutes.

Norma seemed glad to see us, and she looked good. Was wearing that beautiful white sweater and beige/tan slacks.  She sat up so I could put on her shoes and those DIRTY once-white sox.

I offered to get some clean sox from her dresser, but "Those aren't dirty!" was her protest. The shoes went on, with Norma and Jean working together on that.

We chatted along with Norma; she was involved with our conversation, adding thoughtful words, phrases that started out with an idea that could not be completed.  At one point, when this happened, she said quietly, "I'm goofy."  But it was stated as fact, no anger or frustration evident. We just continue when that happens; always something to talk about.

A quick trip to the bathroom for Norma, then we all went to the great room. I urged the others to hustle, saying, "Our table is empty now." That's the table closest to her room.

Amparo greeted us joyfully; she always does. She brought soup for Norma and Connie; Jean was not interested. But the friends ate all of theirs.  We all had apple juice.

Norma's lunch was soup, half a toasted cheese sandwich, few slices of apples, about a dozen big grapes.  She insisted that Connie and I share the grapes, even after Jean told they are full of Vitamin C, good for her. She ate her lunch readily, and we ALL had berry pie for dessert.
Norma asked if we take off the heavy crust at one end of the pie.  Yes, we do. We  took those off, and she offered Jean hers, in case she wanted to eat any pie filling left on it. Regretfully, Jean said No, thanks.
(When she has a drink she does not care to finish, she says to  Connie and Jean in turn, "You drink it." )

It was a comfortable, no-problem visit, just old friends chatting about anything and everything we think of.  Norma's comments, not often completed, are at times thoughts on how someone "should/should not do something,"  and observations on people's motives and habits. She's observant and sometimes makes moral judgments.  (Don't we all?)

Norma mentioned that Pat McEntee was not "doing well."  No, he's not, did not recognize me again today.  Jean commented that she’d heard Pat has a heart condition.  Of course, your mom knows it's more than that; she notices, but we went on to another subject.

We were so comfortable sitting there, looking out at the garden, but none of us had the ambition to actually step outside to enjoy the sights and air.  It was suggested but did not press.

Jennifer, the CNA who comes twice a week, stopped for a few minutes' visit. We met her when she first came to see Norma--in the garden.

After 2 pm we said it was time for us to leave.  "I'll go with you."  Jean told her we can plan ahead
for some other time (was that not wise?) but today Jean had visitors coming, and lots to do after that.  Jean quickly kissed her forehead and walked to the exit.  jean motioned to Connie to follow; had forgotten her walker was in Norma's room. But she got moving and came soon after her buddy.

We are treated like royalty by the caregivers, which we appreciate.  Norma was engaged (is that the word?) during our whole visit. 

Thursday, Mom had a day of breakfast and lunch but no dinner.  She did participate in the singing exercise and the conversation, as well, but nothing else. 

Friday, Mom ate breakfast and lunch.  She participated in bowling!  Now, go figure that one!  Yes, they have something set up for the residents to do a bowling activity that they all enjoy.  Later, Morina and Mom engaged in a nice conversation.

Saturday, Mom ate breakfast and dinner.  She arose so late that there was no reason for her to be hungry for lunch. 

However, when she decided to get up (long after Leddy had come in and offered to help her but was refused) she came out into the dining room in her underwear demanding Leddy!  Other staff offered to help, but Mom refused.  Then Leddy came in and ordered Mom to her room, which she gladly obeyed.  Thank goodness - I’d hate to think my mother was one of those people!

Later that day, she participated in BINGO!  She truly enjoyed that.

Sunday, her arousal was much the same as Saturday.  Yes, she decided to tantalize the other residents in her undergarb.  Same scenario.  Gack! 

She ate a good breakfast and was in a pensive mood. 

I arrived and she looked at me.

“What are you doing here?”
“I came to visit you.”
“Oh?  Why?”
“Don’t you want visitors?”
“Suit yourself.  You’re a big boy.”

From there, we talked about many things - I’m not sure we were on the same wave-length, but we covered a lot of bases. 

At one point, I pulled out my camera and asked her to smile for me.  She stared at me as I encouraged her to smile.  Finally, she stated, flatly, “No!”  and then went about reading her paper.

I asked her about BINGO and she told me I was being inappropriate and that this was a very personal question.   Not sure about that….

She opened her paper and began to read - erratically, as she was more engaged in the conversation at the table next to ours (Pat and Lucille’s children had come by and were conversing with their parents). 

The lead story was one of a man who had a sad climbing experience in the Himalayas, so I asked Mom if she had seen the mountain range while in Tibet.  “Yes, but they were at a distance, and they looked big.” 

She did begin to tell me that she had seen many people last night at a dinner that was about autism.  I had no inkling as to where that came from until I saw the story on the next page of the paper - it had to do with autism.   Apparently, though, many of us were there and she stayed up quite late which was why she was so tired. 

Eventually, I gave her a kiss (she asked to leave with me) and I left.  My brother followed my visit with one within minutes of my departure.  So, she had a stimulating morning. 

With him, she chatted and they went to the garden after she finished her paper. 

All in all, it would seem Mom is doing fine.  She has good days and bad ones.  I prefer the good at this point.    Hospice is helping a great deal, and, perhaps, this is one reason she is "shining" at this time - who knows?  I know the bad will come in a flash, so it’s important to encourage and delight in these - albeit they are not incredible - as they come.

Caregiver Burnout & Fatigue Tips and Thoughts

I'm hardly one to talk.  I mean, look  at our situation - Mom lives in a wonderful memory care facility where they are more than graciously serving her needs through both palliative care and hospice.  My function is to monitor her decline/progress, her bills, her appointments, her visitors, and to make sure everything else is running smooth as silk for her.  I don't attend to her day-to-day care, give her medications, bathe her, change her, feed her, or plan activities for her (any more). 

There are those people who, due to loyalty or sense of duty - and many through love, struggle each day and make all this happen.  I admit it - I'm fortunate. 

There were the onset days (those days when there was so much travelling, so many bills, so much work waiting for me at the office, and the seemingly endless demands that were placed upon my shoulders) when the entire world became topsy-turvy.  The kitchen table and the dining room table were holding up piles of mail, bills, and documents that needed paying, organizing, or filing.  While attempting to work full-time, visit Mom on a very regular basis, drive to her house 250 miles away on Saturday, only to return that day and have things ready for her the next day, and then return to the regular week, again on Monday, I found myself more than exhausted.   The demands seemed never-ending. 

There were also the requests from friends and family, which I needed to take into account, while also planning activities for Mom to ensure she was doing what was possible at the times she was able.  Whew! 

I learned to live with all this, while also dealing with my life - but it really wasn't much of a life.   It took some time to figure it all out; then the declines began to occur and the last one really had an impact! 

To be honest, I meet people who are able to figure out and manage their time while caring for their loved one at home - they're exhausted, sleep-deprived, but refuse to give up. 

Then, the other day, I read this article posted on the Lewy Body Support/Blog page on GooglePlus.  I was suffering from something  - it wasn't depression, although it felt like it; it wasn't a cold or immune problem, although it seemed like it; I couldn't quite figure it out.  Then I read the article.
It made sense. 

While the above may seem as though I'm whining, I'm not - I'm trying to state what was happening which was not something I ever dreamed I would encounter - amazing how we adapt and survive.  But, I began considering what it would have been like had Mom moved in with me - would either of us have survived? 

Below is a copy of the article from Helpguide.org in August 2015.     I believe it speaks for itself (forgive me if it seems lengthy:

Caregiver Stress and Burnout

Tips for Recharging and Finding Balance

In This ArticleThe demands of caregiving can be overwhelming, especially if you feel you have little control over the situation or you’re in over your head. If the stress of caregiving is left unchecked, it can take a toll on your health, relationships, and state of mind—eventually leading to burnout. When you’re burned out, it’s tough to do anything, let alone look after someone else. That’s why making time to rest, relax, and recharge isn’t a luxury—it’s a necessity. Read on for tips on how to regain balance in your life.

Caregiver stress and burnout: What you need to know

Caring for a loved one can be very rewarding, but it also involves many stressors: changes in the family dynamic, household disruption, financial pressure, and the added workload. So is it any wonder that caregivers are some of the people most prone to burnout?
Caregiver stress can be particularly damaging, since it is typically a chronic, long-term challenge. You may face years or even decades of caregiving responsibilities. It can be particularly disheartening when there’s no hope that your family member will get better. Without adequate help and support, the stress of caregiving leaves you vulnerable to a wide range of physical and emotional problems, ranging from heart disease to depression.
When caregiver stress and burnout puts your own health at risk, it affects your ability to provide care. It hurts both you and the person you’re caring for. The key point is that caregivers need care too. Managing the stress levels in your life is just as important as making sure your family member gets to his doctor’s appointment or takes her medication on time.

Signs and symptoms of caregiver stress and burnout

Learning to recognize the signs of caregiver stress and burnout is the first step to dealing with the problem.

Common signs and symptoms of caregiver stress

Anxiety, depression, irritability Feeling tired and run down Difficulty sleeping Overreacting to minor nuisances New or worsening health problems

Trouble concentrating Feeling increasingly resentful Drinking, smoking, or eating more Neglecting responsibilities Cutting back on leisure activities

Common signs and symptoms of caregiver burnout

• You have much less energy than you once had
• It seems like you catch every cold or flu that’s going around
• You’re constantly exhausted, even after sleeping or taking a break
• You neglect your own needs, either because you’re too busy or you don’t care anymore
• Your life revolves around caregiving, but it gives you little satisfaction
• You have trouble relaxing, even when help is available
• You’re increasingly impatient and irritable with the person you’re caring for
• You feel helpless and hopeless

Once you burn out, caregiving is no longer a healthy option for either you or the person you’re caring for. So it’s important to watch for the warning signs of caregiver burnout and take action right away when you recognize the problem.

Dealing with caregiver stress & burnout tip 1: Ask for help

Taking on all of the responsibilities of caregiving without regular breaks or assistance is a surefire recipe for burnout. Don’t try to do it all alone. Look into respite care. Or enlist friends and family who live near you to run errands, bring a hot meal, or “baby-sit” the care receiver so you can take a well-deserved break.

Tips for getting the caregiving help you need

• Speak up. Don’t expect friends and family members to automatically know what you need or how you’re feeling. Be up front about what’s going on with you and the person you’re caring for. If you have concerns or thoughts about how to improve the situation, express them—even if you’re unsure how they’ll be received. Get a dialogue going.
• Spread the responsibility. Try to get as many family members involved as possible. Even someone who lives far away can help. You may also want to divide up caregiving tasks. One person can take care of medical responsibilities, another with finances and bills, and another with groceries and errands, for example. 
• Set up a regular check-in. Ask a family member, friend, or volunteer from your church or senior center to call you on a set basis (every day, weekly, or how ever often you think you need it). This person can help you spread status updates and coordinate with other family members.
• Say “yes” when someone offers assistance. Don’t be shy about accepting help. Let them feel good about supporting you. It’s smart to have a list ready of small tasks that others could easily take care of, such as picking up groceries or driving your loved one to an appointment.
• Be willing to relinquish some control. Delegating is one thing. Trying to control every aspect of care is another. People will be less likely to help if you micromanage, give orders, or insist on doing things your way.

Dealing with caregiver stress & burnout tip 2: Give yourself a break

As a busy caregiver, leisure time may seem like an impossible luxury. But you owe it to yourself—as well as to the person you’re caring for—to carve it into your schedule. Give yourself permission to rest and to do things that you enjoy on a daily basis. You will be a better caregiver for it.
There’s a difference between being busy and being productive. If you’re not regularly taking time-off to de-stress and recharge your batteries, you’ll end up getting less done in the long run. After a break, you should feel more energetic and focused, so you’ll quickly make up for your relaxation time.

• Set aside a minimum of 30 minutes every day for yourself. Do whatever you enjoy, whether it’s reading, working in the garden, tinkering in your workshop, knitting, playing with the dogs, or watching the game.
• Find ways to pamper yourself. Small luxuries can go a long way in relieving stress and boosting your spirits. Light candles and take a long bath. Ask your hubby for a back rub. Get a manicure. Buy fresh flowers for the house. Or whatever makes you feel special.
• Make yourself laugh. Laughter is an excellent antidote to stress—and a little goes a long way. Read a funny book, watch a comedy, or call a friend who makes you laugh. And whenever you can, try to find the humor in everyday situations.
• Get out of the house. Seek out friends and family to step in with caregiving so you can have some time away from the home.
• Visit with friends and share your feelings. The simple act of expressing what you’re going through can be very cathartic. If it’s difficult to leave the house, invite friends over to visit with you over coffee, tea, or dinner. It’s important that you interact with others. Sharing your feelings won’t make you a burden to others. In fact, most friends will be flattered that you trust them enough to confide in them, and it will only strengthen your bond.

Dealing with caregiver stress & burnout tip 3: Practice acceptance

When faced with the unfairness of a loved one’s illness or the burden of caregiving, there’s often a need to make sense of the situation and ask “Why?” But you can spend a tremendous amount of energy dwelling on things you can’t change and for which there are no clear answers. And at the end of the day, you won’t feel any better.
Try to avoid the emotional trap of feeling sorry for yourself or searching for someone to blame. Focus instead on accepting the situation and looking for ways it can help you grown as a person. As the saying goes, “What doesn’t kill us makes us stronger.”

• Focus on the things you can control. You can’t wish your mother’s cancer away or force your brother to help out more. Rather than stressing out over things you can’t control, focus on the way you choose to react to problems.
• Find the silver lining. Think about the ways caregiving has made you stronger or how it’s brought you closer to person you’re taking care of or to other family members. Think about how caregiving allows you to give back and show your love.
• Share your feelings. Expressing what you’re going through can be very cathartic, even if there’s nothing you can do to alter the situation. Talk to a friend or therapist about what you’re going through as a family caregiver.
• Avoid tunnel vision. Don’t let caregiving take over your whole life. It’s easier to accept a difficult situation when there are other areas of your life that are rewarding. Invest in things that give you meaning and purpose—whether it’s your family, church, a favorite hobby, or your career.

Dealing with caregiver stress & burnout tip 4: Take care of your health

Think of your body like a car. With the right fuel and proper maintenance, it will run reliably and well. Neglect its upkeep and it will start to give you trouble. Don’t add to the stress of your caregiving situation with avoidable health woes.

• Keep on top of your doctor visits. It’s easy to forget about your own health when you’re busy with a loved one’s care. Don’t skip check-ups or medical appointments. You need to be healthy in order to take good care of your family member.
• Exercise. When you’re stressed and tired, the last thing you feel like doing is exercising. But you’ll feel better afterwards. Exercise is a powerful stress reliever and mood enhancer. Aim for a minimum of 30 minutes on most days. When you exercise regularly, you’ll also find it boosts your energy level and helps you fight fatigue.
• Meditate. A daily relaxation or meditation practice can help you relieve stress and boost feelings of joy and well-being. Try yoga, deep breathing, progressive muscle relaxation, or mindfulness meditation. Even a few minutes in the middle of an overwhelming day can help you feel more centered.
• Eat well. Nourish your body with fresh fruit, vegetables, whole grains, beans, lean protein, and healthy fats such as nuts and olive oil. Unlike sugar and caffeine—which provide a quick pick-me-up and an even quicker crash—these foods will fuel you with steady energy.
• Don’t skimp on sleep. Cutting back on time in bed is counterproductive—at least if your goal is to get more done. Most people need more sleep than they think they do (8 hours is the norm). When you get less, your mood, energy, productivity, and ability to handle stress will suffer.

Dealing with caregiver stress & burnout tip 5: Join a support group

A caregiver support group is a great way to share your troubles and find people who are going through the same experiences that you are living each day. If you can't leave the house, many Internet groups are also available.
In most support groups, you'll talk about your problems and listen to others talk; you'll not only get help, but you'll also be able to help others. Most important, you'll find out that you're not alone. You’ll feel better knowing that other people are in the same situation, and their knowledge can be invaluable, especially if they’re caring for someone with the same illness as you are.

Local vs. Online Support Groups for Caregivers

Local support groups: People live near each other and meet in a given place each week or month. You get face-to-face contact and a chance to make new friends who live near you. The meetings get you out of the house, get you moving provide a social outlet, and reduce feelings of isolation. Meetings are at a set time. You will need to attend them regularly to get the full benefit of the group. Since the people in the support group are from your area, they'll be more familiar with local resources and issues.

Online support groups: People are from all over the world and have similar interests or problems. You meet online, through email lists, websites, message boards, or social media. You can get support without leaving your house, which is good for people with limited mobility or transportation problems. You can access the group whenever it's convenient for you or when you need help most. If your problem is very unusual—a rare disease, for example—there may not be enough people for a local group, but there will always be enough people online.

To find a community support group, check the yellow pages, ask your doctor or hospital, or call a local organization that deals with the health problem you would like to address in a support group. To find an Internet support group, visit the website of an organization dedicated to the problem.

More help for caregiver stress and burnout

Stress Help Center: Protect yourself by learning how to recognize the signs and symptoms of stress overload and take steps to reduce its harmful effects.

Understanding stress and burnout

• Preventing Burnout: Signs, Symptoms, Causes, and Coping Strategies
• Respite Care: Finding and Choosing Respite Services
• Stress Management: How to Reduce, Prevent, and Cope with Stress
• Laughter is the Best Medicine: Improving Communication Skills in Business and Relationships
• Stress Relief in the Moment: Using Your Senses to Quickly Change Your Response to Stress

Caregiving for the elderly

• Adult Day Care Centers: Finding the Best Center for Your Needs
• Alzheimer's and Dementia Prevention: How To Reduce Your Risk and Protect Your Brain as You Age
• Support for Alzheimer's and Dementia Caregivers: How to Get the Caregiving Help You Need
• Home Care Services for Seniors: Services to Help You Stay at Home

Resources and references

Preventing family caregiver burnout

Preventing Caregiver Burnout – Part of a handbook and resource guide for caregivers in Florida. Examines the signs of caregiver burnout and how to handle it. Includes tips for caregivers who are themselves challenged by age or infirmity. (Area Agency on Aging of Pasco-Pinellas)
Taking Care of You: Self-Care for Family Caregivers – Learn about the effects of caregiving on your own well-being, and what you can do to care for yourself. (Family Caregiver Alliance)
Your Caregiving Tips – Tips from other caregivers on how to stay positive while taking care of a love one. (AARP Magazine)

Tips and support for family caregivers

Care for the Family Caregiver: A Place to Start (PDF) – Helpful booklet for family caregivers, with advice on legal, financial, and emotional issues. (National Alliance for Caregiving)
Caregiver Toolbox – Explore helpful tips and resources for family caregivers. (Caregiver Action Network)
Caregiving Resources – A comprehensive guide to caregiving, with resources on legal and money matters, benefits, insurance, senior housing, and caregiver support. (AARP)

Find caregiver services in the U.S.

Family Care Navigator  – A state-by-state resource intended to help you locate services for family caregivers and resources for older or disabled adults. (Family Caregiver Alliance)

Find caregiver services internationally

Looking for Local Carers’ Services? NHS services available to UK carers of disabled children and adults, including respite care. (NHS)
Caring for an Older Australian – For Australian residents, provides information and support services for older people, people with disabilities and those who provide care and services. (Australian Government)
Carers New Zealand – Offers help and advice for New Zealand carers, including guidance on respite care services. (Carers NZ)
Programs and Services – Information on services for seniors in Canada, including in-home support.  (Government of Canada)

What other readers are saying

“With no support, I take care of an autistic son and my 80-year-old mother who has a mental disorder . . . I am teetering between stress and burnout. And now I know what to do and have hope.” ~ Florida

“Thank you for the article about caregiver burnout. I've been the primary caregiver for my father for nine years. Brothers have basically been AWOL and I am very angry about that and I doubt our family will be repaired after all this. I have been burned out for years. It's nice to know I'm not the only [one].” ~ Georgia

“[I am the] caregiver to my mom. I am seeing a therapist but now I feel I have so much more knowledge about what I’ve been going through for the last 5 years. It all makes sense to me now. I don't feel so alone, and I am going get out and get involved in a support group here in my city. The information you have provided was fantastic and I feel like I am not alone in these feelings.” ~ Canada

Authors: Melinda Smith, M.A. and Gina Kemp, M.A. Last updated: August 2015.

What Matters at the End of Life - Defining True Palliative Care

Not long ago, my brother sent me a link.  Now, I'm one of those who tends to push these things aside, but I decided to view this link out of curiosity.  What I discovered was a shot in the arm that was painful yet blissful.  How odd.

The doctor, BJ Miller, MD., tells his story, and then explains palliative care and hospice.  While tending to Mom's needs at this critical point in her life, this helps explain so much, and he's such an effective speaker, I decided I should share this with you.  I hope, indeed, you appreciate it and watch it all the way through. 

As you can see, he's quite frank.  This puts it out there - the differences between hospitals, palliative care and hospice and death, as well - or should I say, dying. 

I'm sure every one of you will be able to take away something personal for yourselves, not only in information, but also with some emotion. 

There are more videos of Dr. Miller on YouTube - just type in his name (BJ Miller) in the search box, and you'll make some discoveries.  Also, you may do the same with more Ted Talks on that site. 

I am grateful for these in helping ease the worry and stress of the current situation. 

The Roller Coaster Continues - OR The Week Ending 09/20/2015

Some like it hot
Some like it cold
Some like it in the pot
Five days old……

There’s truly no accounting for taste; especially when one has dementia.  For some odd reason, whenever my brother or I speak to Mom it just doesn’t process, most of the time.  Who knows.  But, whatever the case, Mom has been mentally going down.  She ate most of the meals during the week, but then, today (Sunday) she wouldn’t eat until lunch.  But, I’ll let you be the judge of her week - -

Monday:  Mom was very confused.  She refused to eat as well as come out of her room.  Leddy tried to help her change, but she refused, as well.  Finally, Leddy came back and convinced Mom to eat.  Whew. 

Tuesday:   Mom, once again, refused to be changed - until Leddy allowed her to wear another pair of pants that she liked.  The hospice nurse came and showered her, and Morina and Lea also helped her.  She finally came out and ate lunch.
Later, she would attend her BINGO game, as this is something she quite enjoys.
Her massage therapist came by, but I cannot recall if Mom took the massage or not.

Mom looking spry and happy. 

Wednesday:  The RLC came for their weekly visit.  The following is an edited account which they collaborated on:

We (Connie and Jean)  found Norma reading a card/note from Phyllis Elliott. She was sitting at the table nearest her room, her usual place.   When I asked her to, she read some aloud. She'd evidently been reading her newspaper, and folded it when she was done. A caregiver said she would put it in Norma's room.
We remarked on Norma's curly white hair. She looked good, with a pretty blue shirt and tan slacks.
Did not notice if stockings were on, but probably were, as she was wearing shoes.
Norma thought it would be nice if we could invite Phyllis to a book club meeting.  Jean offered her house and asked who else we should invite. No ideas there. Somewhere along there Jean mentioned that it might be hard for Phyllis to come to Portland, as she's in Port Angeles.  "No, she isn't."
We went on to another subject, and Norma said to Connie,"I like the manner of the comments you've been making (was there more?)." It was a thought-out, complete sentence. And Norma has always appreciated a well-composed thought. Connie said, "Thank you." 
Norma was quite alert, had had a full breakfast, we believe and was up for a walk in the garden.  She could see the sun was shining. Jean told her we would not need jackets if we stayed in the sun. (Didn't want to spend time looking for just the right jacket/sweater in her closet.)
So we took  a brief tour of the garden areas, noticing flowers in bloom. Norma's walking was not as of old, but just a hint of a shuffle.   Connie had her seat on her walker and chose a spot with shade. Norma and Jean sat on the wooden bench outside her room; Connie moved to be closer.  We  three discussed the beautiful blue sky and pretty white cumulus clouds.  We agreed that it was a lovely day, but then Connie noticed gray clouds. We knew that rain was forecast for the afternoon and wanted to be home before it came. We were outside 15-20 minutes.
Lunch was being served, but Norma refused the bowl of soup Amparo brought. Amparo said she would heat it up later when Norma was ready to eat.  Connie and Jean both said, “ No,” to soup, too.  We all had a glass of apple juice, Norma's with the pill Elsa gave her. We kissed her goodbye, said we would see her again.  It seemed Norma was about to leave with us, so we moved right along to the door.
It was almost 1 pm.
Norma was more alert than we've seen her lately. She is NOT following that decline, but we know it's a roller coaster.

Mom’s appetite seemed to be much healthier after they left.  Sometimes it appears that having family or friends visit stimulates that hunger, or the will to eat.  Who knows.

Thursday:  Mom ate all three meals.  Yes.  That was 3.  She participated in the activities with everyone else and was up most of the day.

Friday:  Mom had a visit from the hospice nurse, and they chatted (although it’s really odd stating that she was holding conversations when this is a lost art with her, sadly).

Saturday:  Mom, once again, ate all three meals.  She was not a happy-go-lucky soul but continued in her confusion.

Sunday:  Today Mom arose late.  She wasn’t being very nice - especially to Leddy.  She was refusing to eat, as well, so on my way I stopped and picked up a banana-strawberry milkshake for her - not completely aware that she had been eating so well on the two previous days.

When I arrived I was greeted by my eldest brother, who had arrived 20 minutes earlier, and was sitting in the dining room with the mater.  Mom had eaten all her lunch, including the apple pie dessert.  I gave her the milkshake, and she savored it - but didn’t finish.

We enjoyed a bit of conversation, he telling us about his trip up north to visit his daughter who had flown out from NYC, and the adventures they’d had with her siblings.  Mom absorbed some of this, but her hearing doesn’t always catch on - perhaps we speak too rapidly, I don’t know, because Rosemary (one of Mom’s adversaries, who sits across from her at meals) had a similar problem with both my brother and me.

We took Mom outside to the garden where we attempted to identify plants, trees, shrubs, and flowers.  It was good to see Mom walking and enjoying herself.

Soon, though, it was time, and she wanted to waggle into her room and recline.  I handed her the milkshake, but she stated it wasn’t hers and must belong to someone else.  I tried to remind her but discovered it was better to just leave it next to her so she could determine what to do with it.

We did find her watch - it miraculously found its way back to its regular haunt - next to her bed in the lacquered box.  She put it on and admired it.

At some point in the week, I haven’t a clue when or who, Mom had her fingernails repainted.  She has already made attempts to scratch it off on some, as she believes it makes them look more natural (That’s what you get when your mother never really believed in having manicures in the earlier stages of life).  But she looked hale and hearty.

Her confusion is more obvious than before, and her observations need to be immediate, lest they wander to earlier conversations where she brings in elements of those as though it were a part of the present (She talked about my niece as though she had participated in today’s visit - but she had been a talking point of an earlier dialog).

So, with that being said, I’m so glad she is where she is and getting so much attention and help.  While she’s hardly the cuddliest of mothers, she does have spunk and qualities for admiration.
In other words, she’s our mother.

LBD General Stages and the FAST Scale for Dementia - What do they tell us?

Last weekend I rushed over to the Lewy Body Dementia Support Group in my area.  These are springing up all around the country as people are realizing their loved ones are afflicted with a disease/syndrome (the jury is out as to whether it is one or the other at this time) that they know very little about.  I always learn something new at these meetings while able to share our experience with Mom.

As we chatted someone brought up F.A.S.T.  and how it helps determine the stage of dementia the patient is experiencing.  Now, this was news to me!  I’d never heard of such a thing - in fact, I was told many times there was nothing definitive about LBD having actual stages, other than onset and near-death.  Hmmmmm.  

I knew there would be something I  learned that day that would make an interesting post that I could share with others who might not be aware.  So, I looked it up.  It’s actually quite simple, but I’m sure it took some doing to keep it simple and direct.  However, once again, it pertains to those with Alzheimer’s, but it’s still interesting to see some of the similarities to LBD.

Here, I cut and pasted a sample form for your viewing:

FAST SCALE ADMINISTRATION The FAST scale is a functional scale designed to evaluate patients at the more moderate-severe stages of dementia when the MMSE no longer can reflect changes in a meaningful clinical way. In the early stages the patient may be able to participate in the FAST administration but usually the information should be collected from a caregiver or, in the case of nursing home care, the nursing home staff. The FAST scale has seven stages:    
1 which is normal adult    
2 which is normal older adult    
3 which is early dementia    
4 which is mild dementia    
5 which is moderate dementia    
6 which is moderately severe dementia    
7 which is severe dementia FAST Functional Milestones.

 FAST stage 1 is the normal adult with no cognitive decline.

 FAST stage 2 is the normal older adult with very mild memory loss.

Stage 3 is early dementia. Here memory loss becomes apparent to co-workers and family. The patient may be unable to remember names of persons just introduced to them.

Stage 4 is mild dementia. Persons in this stage may have difficulty with finances, counting money, and travel to new locations. Memory loss increases. The person's knowledge of current and recent events decreases.

Stage 5 is moderate dementia. In this stage, the person needs more help to survive. They do not need assistance with toileting or eating, but do need help choosing clothing. The person displays increased difficulty with serial subtraction. The patient may not know the date and year or where they live. However, they do know who they are and the names of their family and friends.

Stage 6 is moderately severe dementia. The person may begin to forget the names of family members or friends. The person requires more assistance with activities of daily living, such as bathing, toileting, and eating. Patients in this stage may develop delusions, hallucinations, or obsessions. Patients show increased anxiety and may become violent. The person in this stage begins to sleep during the day and stay awake at night.

Stage 7 is severe dementia. In this stage, all speech is lost. Patients lose urinary and bowel control. They lose the ability to walk. Most become bedridden and die of sepsis or pneumonia.

(fast scale administration)

While this may seem rather general in its approach, it’s recognized as the most validated measure of AD (FAST).

The following is taken from DLB at www.alznc.org, and discusses the fundamentals of how Lewy Body Dementia progresses (Look for the possible similarities and differences, if you can):

How Does It Progress?

Average length of life after symptoms appear is 5-7 years with a range of 2-20 years.

It tends to progress from infrequent episodes to a more consistent and gradually worsening picture. Symptoms still vary in intensity and severity, but as the disease advances, they are typically present most of the time. First symptoms typically involve hallucinations, falls or movement problems, and some confusion about reality.

By the middle of the disease, mobility skills are very impaired (a walker or even a wheelchair may be needed), functional skills are very limited (help is needed for almost all fine motor tasks), there are more problems with hallucinations and delusions, sensory intolerance (especially around the mouth, on the palms and fingers, soles of the feet, and in the genital region), and disturbances in sleep and wake patterns can be marked and challenging. Weight loss is common as is difficulty with swallowing, chewing, and speaking clearly and showing facial emotions clearly. By this time, it is common that falls have resulted in fractures and head wounds.

By the end of the disease, the person will typically be bedbound or will need specialized seating in a reclining seating system. Rigidity and stiffness are very common and make movement and care very difficult for both the caregiver and the person with DLB. The person is able to move little, and requires major amounts of physical help for all care and engagement in preferred activities. The person may find touch uncomfortable and painful, even if it is delivered slowly and gently. The person typically has a very difficult time communicating. Speech is very soft and indistinct and often off target or repetitive in nature.

Death is typically a result of pneumonia or other infection, which the body cannot fight off even with the use of antibiotics. Pneumonia is typically caused by aspiration (food or liquids getting into the airway due to problems with eating or drinking and breathing regulation). Other infections can be localized (repeated UTIs (urinary tract infections), open pressure ulcers or wounds (caused by the inability to move or friction with repeated movements), skin injuries (when hitting a hard or sharp surfaces or skin exposure to urine or feces), or contractures (tightening and shortening of muscles that keep body parts closed together), the use of tubes or catheters (feeding tubes or urinary catheters). Still other infections can be or systemic, called sepsis, an infection in the blood stream.  Other causes of death include malnutrition and dehydration, complications following falls (head injury or fractures), pulmonary emboli (clots that travel to the lungs due to prolonged immobility), or heart failure.

Pretty sobering - right?!   According to this information, Mom is in the middle of the disease, not toward the end; however, in all the reading I’ve done, I’ve not found anyone who went into such a fatal decline as is described above - in fact, they began the final stages around where Mom is at this time, and with the doctor concurring, I’ll have to take the above with a few shakers of salt.  This doesn’t mean it isn’t accurate, but LBD is so individualized, that it’s quite difficult to know what comes next.

So, what do we do with the above information?  Store it.  Keep it handy.  There are people who may actually benefit from reading it and begin their understanding of where their loved ones are.

I hope this helps answer some questions and furthers the discussion.  My brain is now whirling with questions - but I’ll save you the torture - for now.

By the way, the typos and errors in the text I copied I decided not to edit (for those purists out there), so please leave me alone if you've the urge to point them out - I already know and am shuddering.

Does Dementia Change with the Seasons?

It’s a hunch I have.  Nothing really spat at me that it was really so, but trying to figure out a connection between weather, seasons, and dementia kept nagging at my heels.  I tried locating any information I could, but it was quite difficult.  The closest I was able to to get was locating studies on light therapies and dementia, but that wasn’t what I was really after.

We do know that light therapy works for those with depression, and also encourages brain wave activity in all people - including those with dementia.

My actual purpose of this post was to locate some indication as to why Mom has a pattern of transitioning into the next levels of her LBD during the seasonal changes.  I was wondering if there was a link, and that, perhaps, there was a commonality between Mom and other patients who demonstrated the same sort of decline/change.

While Mom’s decline wasn’t as pronounced two years ago, it was obvious something was going on.  Nothing prepared me for the demonstration of her visiting the neurologist and acting like a young girl - giggling and swinging her feet as he performed some tests - she was oblivious to the questions he was asking me.  From that point on I began to observe the changes as they snuck in and began to dramatically change her personality and her activities.

A year ago, Mom slipped into a state of congeniality.  She began to discard the venom for sugar.  She was sweet.  It wasn’t something any of us was used to, but we accepted it with open arms.  She was very personable (nothing new), but she was content, as well.  Within weeks, though, she began to slide, bit-by-bit, so that by January she was no longer the same person - the personality was the same, but her cognition level had dropped severely.    Her doctor recognized this, as did the neurologist, and all those around her.

Later, she would change again.  It seemed that these changes would occur  with the change in weather or seasons.  This summer she began to change radically for the worse - late Spring she began not eating and not rising from bed, and this would (as I predicted) become more commonplace.

In the past, before her diagnosis, she would appear fine in late summer, and then have issues near the beginning of September when the weather and the daylight would begin to flux and change here in the Northwest.  January would present more problems, and then around April/May there would be the appearance of something else.  Summer was a season that gave her some energy, but there was something going on that you couldn’t quite pinpoint.

And, here we are, again, in September with more changes and more decline.  

It would be interesting to see if the seasons affect these changes, is it the sun? The weather? the barometric pressures?  It’s obvious it affects the people around me, but how does this affect those with dementia?

Why is there so little information?


I’ll keep digging and see what I can bring to light...that was supposed to be a joke...

Up and Down Like the Merry-Go-Round...or The Week Ending 09/13/2015

LBD is truly an enigma.  There are no sure steps or phases into which the patient slips - that is until later stages of the illness.  Then, as with any other dementia, the brain has begun to slip into another level - one in which signals are not connecting and the messages cease to carry along the synapses to allow the body to continue.  This seems to be the case with Mom; her lack of appetite (although at times it resurges, then fades just as quickly), her willingness to walk or not, her speech, and her wakefulness.

Monday, Labor Day, we had a meeting with the Hospice Nurse.  My eldest brother joined us, and Mom seemed unaware of what was taking place.  She dabbled at her breakfast, eating once in a while - but never finishing.  She ate only half of what was on her plate, but the entire yogurt.

Mom gives me the "evil eye"...a sign that her humor still exists.

The nurse gave us information about the services they could provide and Mom seemed unexceptionally involved - finding distractions and just stoically sitting there until there was a noise or some activity that caught her attention.

We received all the information about who would be coming, how often (it will be wonderful for Mom to be receiving all this attention!), and what they would be able to provide.  The one subject they broached was that of the funeral arrangements -  call me old-fashioned, but for me it seems a bit cold and tacky to discuss this in front of someone who cannot speak for themselves -we don’t know what she understands or recognizes in her brain at this time.

After this had ended, my brother took his leave, rubbing Mom on the head and kissing her forehead giving her a good-natured goodbye.  When he did this, Mom’s eyes sparkled and she had the look in her eyes that I’d not seen in ages - it was the look she used to get when she was thinking of what to do next, and this would naturally lead to her swinging out her arm and hitting him while she said, “Pow!” with a laugh.  It ended only with that look and her requisite smile.

I did speak with the staff, and they informed me that Mom had just been awakened a half hour before the meeting - suggesting that she was sleeping a great deal, and this could have accounted for her not eating much.

At one point,  Mom saw one of the residents (a man) walking across the room.  She called out our father’s name, believing it was he who was there.  You could hear the furtiveness in her soft call.  I told her it was Pat, but she kept her eye on him.

I later bumped into the nurse and we fixed the POLST form - which is the one that helps with the DNR and end-of-life procedures.  I had discovered a mistake I’d made earlier and tried to rectify it, but I had made some gaffs, so she helped me do it correctly.

Tuesday, Mom ate both breakfast and lunch.  She also went to BINGO.  She was visited upon by the hospice nurse, as well.  Perhaps the visits of the previous day helped with her activity and eating - but that’s pure conjecture.

Wednesday, the hospice nurse had come as did Connie and Jean.  At this point I’ll allow Jean’s words to describe the visit:

We were at St. Anthony's from11:05 to 1:10.  One of the workers said Norma was still in bed, had not had  breakfast.  She was awake when we walked into her room.
Norma sat up, clothed except for outer pants.  I asked Morina or Lynn if she knew where pants were; my choice might have been refused.  Linn, I think, brought out dark blue pants; Norma said they were too small.
Nope! She did get them on, then agreed to let Lynn put on her stockings, then the white sox, then her Sketchers.  Connie and I said we would go with her to have breakfast. As Norma seemed to be about to sit on her recliner, we encouraged her to come to the big room.
She asked, "How far is it?"
and we said just a few feet.  (I was gently pushing her left side to keep her from sitting.)  Connie and I double-teamed her. We do that often.  (Is that the phrase?)
Out came a good breakfast: a big glass of juice, scrambled eggs, a banana, piece of toast with jelly and a cup of coffee (but not at first).  Norma asked for salt, was told they had only pepper.  
The ladies were offering Connie and me juice, coffee, later, soup.  We all had a piece of the pastry offered.  Others were eating lunch. Then we suggested a little walk in the garden.
Up Norma got--slowly, but she was willing to go with us.  Blue skies and  warm by then.  The walk extended to  the bench outside her room. I moved a chair so Connie could  sit with us in the shade; easier on her eyes.  After a while Jennifer (the hospice nurse) appeared.  We said our goodbyes, saying they could have a chat.
Norma did talk, with her new, softer voice. I do not recall a sentence that made sense--just phrases.
But we filled in. It was a pleasant visit.

Mom ate breakfast and some lunch that day.

Thursday, Mom enjoyed breakfast and lunch but ate no dinner.  Her energy was low.  They were able to manage to have her shower (most likely with help).

On Friday, Mom ate all three meals!  She was visited by the hospice nurse and they ascertained she wasn’t ready, yet, for a wheelchair, although her strength seemed low.  However, something must have clicked for her to eat all three meals!

Saturday, Mom claimed she went to BINGO, and she, once again, ate all three meals!  Her attitude was increasingly better, too.

Today, Sunday, Mom ate breakfast but was too full to eat any lunch.  Leddy was helping her dress, and Mother voiced her displeasure with the help.  However, she did tell Leddy, “I really do enjoy seeing you!”  What a gift for Leddy who does so much for her!

Mom reads the card from Connie

My nephew, Alex, from Seattle, came for a visit and Mom very much enjoyed seeing him once again, although she really didn’t recall who he was - she was entranced by his green flowing hair and having the company.  She didn’t exactly pepper him with questions, but she spoke the most cogently I’ve heard in awhile - which isn’t really saying much, but she was able to have snippets of conversation.
I did present her with a card Connie had sent to my house for her.  She wasn’t able to ingest much of what it said and opposed my helping her.  However, she was content that she received some mail.
Earlier in the day, I happened to discover, Mom had gone for a walk (with some other residents) into the garden and over to the other cottage.  The ladies were chatting about God knows what and laughing.  Reina (her aide) said that it was so good to see her walking out there and laughing.  Mom denied this as though it were a terrible accusation.  Oh well.
She stated that she had no books to read and that she would very much like some.  I pulled some out from her pile and she began to “read” as we left.   I also left her some chocolate bars on her end table for her to nibble, as well as an orange from her fridge which was a gift from Jean.
To sum it up, Mom bounced back in the past two days from the low points of the early week.  What this means, I haven’t a clue, but it was a gift that we may not be able to see much more.  She even gave me the evil eye with a hint of a smile (seen above, but she couldn’t hold the smile while I had her pose).

Massage and Dementia

Think of it:  A knock on the door, a face peers inside followed by a table and/or a bag full of oils and scents.  The person coming in smiles and has a very calming demeanor.  It’s massage time!  Who couldn’t resist!  This would be bliss for the majority of readers.

The reason for Mom receiving massage had more to do with her stiffening joints and muscles, and to make an attempt to combat the tremors associated with the Parkinsonism; she also has complained for some time of back pain, which seemed to cease after a couple of weeks of the massage therapy in the past.  

Although a 2006 study (Massage and touch for dementia.) determined that while hand massage seemed to calm agitation, and also helped with encouragement for eating, there really were no viable results that demonstrated massage to be an effective treatment for dementia.  

However, in an April 2015 article, The Role of Massage Therapy in Dementia Care, from Massagetoday.com, clear evidence has been reported with the simplest forms of massage - foot, hand/arm, and back massages.  

The feeling of someone touching and caressing the body also helps release endorphins, while also reducing anxiety, depression, and other psychological and physical ills suffered by the patients.  

Remember, so many people in care facilities are not held or have no physical contact rather than what the caregivers may grant - professionally.  And so many are left alone by their families that they begin to feel isolated and alone.  

Light therapy and the inclusion of wide spaces with generous amounts of light/sunlight has proven very therapeutic, and with a massage this may help alleviate anxiety and some symptoms associated with the condition.  Yet, it has no effect on actual dementia.   There is an interesting article from the Alzheimer’s Society in the UK from 2014 which discusses the effects of various therapies, and what has been observed in patient response (Complementary and alternative therapies).

I do find it interesting that such small incidents of touch  - be it taking Mom outside, for a walk, to the shower and bathing her, and even massage, seem to affect her mood and disposition.  While it hasn’t affected the actual dementia, I do know that the endorphins that have been released will grant her asylum from some of the damage for a bit - if only that she might forget her pain (It’s rather ironic, I know, that I speak of forgetting - can you find something more apropos?)

As Mom declines, and hospice begins to take over, there is more opportunity to learn from the team insofar as treatments and other methods that we hadn’t considered earlier.  

Mom will continue to receive massage as long as she allows it.  At this point in time, why keep her from some moments of bliss, even if it’s only for some sensorial good.  

Facing West

(NB - The photos herein are snaps of older photos, so please forgive the quality. I did my best)

Looking back over the past fifteen or so years and mulling over the glacial snowballing of effects this disease has had on Mom has proven a little therapeutic, but mostly, and curiously, numbing.  How could we have known at the time her dottiness  was a symptom of what was to come?  But then, again, whatever it was it was; those bridges, no matter how rickety and tenuous, have been crossed so many times we have become more adept.  

Through the time Mom has been (as she stated much earlier in her dementia) “incarcerated” we have seen many ups and downs.  We have witnessed tremors manifesting themselves from nowhere, demands that became quite interesting (always needing those 9 oz of wine in a glass - still haven’t a clue where she learned that!), and her own observations (the trees - how they were dead and no one seemed to take them out; of course, it being winter and she denying this it was a bit tricky to respond).  

Pic of Mom and her mother ca. 1980.

Of course, her memory went very quickly.  She had forgotten the many adventures she’d had - England, Scotland, Wales, Ireland, Germany, Switzerland, France, Italy, Portugal, Spain, Greece, China and Tibet.  She actually had also forgotten her trips around the country and Canada, Mexico, Hawaii, Alaska, and the lot.  We did learn how to ask questions that probed and made assumptions about her visits - so rather than, “How did you enjoy China, Mom?” We would ask, “The Three Gorges Dam project must have been an amazing site to see built!”  This she could respond to with some stored memory.  

Mom and me in York, UK 2003

Within the past two to three weeks, this has really snowballed into a woman who is not present in our world, but in one of her own reality.  Her responses do not match (most of the time) the conversation being held.  It’s so difficult to imagine what is going on in that mind.  

At one time she was going to go to Hunter College when she was about 16 and graduated from St. Mary’s Academy in Portland.  Instead, she went to Marylhurst, Oregon State, and Portland State.  She found herself engaged and eloping to Reno.  Later, after all four of us were born and sufficiently trained to do housework before school, she went to work as a substitute in Portland Public Schools.  She would later become a librarian and media specialist, and then a career and vocational ed counselor.  Finally, she worked with special needs adults and helped them find work and gave them hope.  

Mom was always on the go.  Her friends thought her a dynamo.  Although not always the diplomat, she usually got what she wanted.   She would always find a way to accomplish something, and then stride, with her head held high.  

Mom rafting the Rogue River 2004

She was active, as well.  Swimming, hiking, tennis, pickleball, bridge, book groups, bike riding, were only some of the activities she enjoyed.  No one could accuse her of being passive, either.  She just bulldozed through life!  She was a competitor.  She loved to argue and was of a mind that she would win!  

She found comfort in reading and dinners with friends - that is when they went out.  When she was behind the celebration and had to plan, and set things up at home, we learned early to watch out, do things quickly, and stay out of the way.  Simone LeGree had nothing on her at these times.  And then, when the event occurred, she’d be back to herself, again.  

Mom walking the beach 2003

We had picnics, went camping, and learned about nature and the regions where we spent time.  We never lived high on the hog, rather she kept a penny close, and didn’t spend money on what wasn’t necessary - in her mind.

And so, as we sat today with the hospice nurse discussing the future, I looked over at my very tired and confused mater wondering what was going on in her mind.  Her responses weren’t cogent and she was easily distracted.   

From such a vibrant woman to this other person next to me is a catharsis I’d have never imagined.  

Someone told me, recently, that perhaps this process was a better way to grieve.  I’m not so sure.  

But facing west from my deck this evening, looking down into the valley and toward the coastal range I can see the sun setting.  So it is with our mother.