Sunday, March 29, 2015

Can’t keep up with the pace of change – Hospice

The pace of change in Marcia continues to perplex and overwhelm me.  Less than 3 weeks ago Marcia was living comfortably at home, though under 24 hour supervision.  Sixteen days ago Marcia was in the hospital, which was the last time she was in our house.  Eleven days ago Marcia was in the sub-acute unit of Foothill Acres, a long term care facility in Hillsborough NJ.  One day later she was moved to the Memory Unit and 10 days later, we have decided that hospice care is the best option for her given her wishes and the state of her illness.


Marcia has not really eaten and she doesn’t drink much since she’s been at Foothill Acres.  In her first full week, Marcia has lost 6 pounds and in the 5 days since her last weigh in, she’s eaten very little, and some days, nothing at all.  She’s lost more than 20 pounds since January and more than 30 pounds since the fall.  Her sodium levels are dangerously high and the doctors ordered IV’s to help get her sodium levels under control.  The IV’s might work if Marcia wouldn’t pull the tubes out.  I watched them try to put another tube in, without success.  They could not find a vein that hadn’t already been punctured or bruised.  Marcia’s doctor called me at home to go through options for Marcia.  She said they could put in a pic line (spelling?), which would require hospitalization.  Pic lines are usually for lengthy use and could help with hydration.  But without other nutrients needed through food, Marcia would develop other complications without regaining cognition.  Marcia is suffering.  She’s suffering plenty both physically and mentally.  She doesn’t acknowledge me or other friends and looks like she’s in constant pain.  Walking is no longer realistic and I watch the nurse try to feed her and getting her to swallow anything takes enormous effort on the part of Marcia and the nurse.


Hospice means they will abandon the IV drips, will discontinue physical therapy, among other things. They will do all they can to make her comfortable with appropriate drugs.  I don’t know how much time she has left, but at this point I’m praying for God to take her quickly and painlessly.


Over the last four years, I have adjusted to the steady progression of her disease because the daily changes have been relatively subtle.  The last 3 weeks have been much harder on me because the changes have been so dramatic.  With the tremendous support of Marcia’s family, my family, and countless friends, I know this is the right decision.  But with each change is another, deeper feeling of grief.  Both grief and relief.


Sunday, March 22, 2015

Home to hospital to Long Term Care Facility in 7 days

I still don’t know what happened!  In hindsight, maybe there were signals I missed.  But without experience in this stage of the disease, I couldn’t have predicted, and I’m not sure anyone could have predicted the sudden changes in Marcia over the last 10 days that have changed my life.  One of those signals I wrote about in my last post, which described the “cracks in her strong façade”.  The crying and the occasional aggression towards me were appearing, but almost overnight, things changed in every aspect of her life.  Crying became a constant and happened several times every day.  Marcia virtually stopped eating and drinking, and she went from predictable 9:00 – 6:30 sleeping to hardly sleeping at all.  And in one day, she went from wanting to hug me, to an almost rage at the sight of me.  She was having hallucinations and was hospitalized for five days for what the hospital called “delirium”.  She went from being comfortably living at home to having to be placed in a dementia unit at a local rehabilitation and nursing center indefinitely and likely permanently.  In my Facebook support group, people often ask how one knows when it’s time for placement and those that have been through it often say “you’ll know”.  I found that to be true in our case too.  I just never expected it would go from “I know it’s out there” to “I have to do this today”, and frankly this hardly seems real.  I haven’t felt these emotions, grief maybe, since she was diagnosed four years ago.


Two weeks ago on a Friday, Marcia went to the Day Center.  Once home, she cried often, then laughed, danced in our living room with a friend, then cried some more.  While I’ll never know what’s really happening with Marcia, I believe the dancing and laughing are remnants of who Marcia really is:  a fun, upbeat and positive person who loves music.  I believe the crying is cognitive awareness and severe depression over what’s going on with her.  I think her tears are frustration and self-grief over what is happening to her and her family.


The next day crying was joined by anger and tantrum-like behavior and what could be described as obsessive compulsive rubbing of her thighs, knees and legs that could have been the beginning of hallucinations.  Then on Sunday, she went from hugging me, to hitting, pushing and pinching me.  Her sleeping pattern changed and she got up 5 times between midnight and 6:00 a.m. 


The next night she wouldn’t let me touch her and wouldn’t come upstairs with me.  When she would sit, she would sit in one place for just a few minutes, go to another part of the room and sit for just a few minutes before moving again.  When she wasn’t sitting, Marcia wandered around our living room, hallway and laundry room knocking pictures over and pulling things off the wall.  I sort of followed her around, hiding pictures, knives, knobs from the stove, and keeping her away from the staircase.  Finally she fell asleep on the couch around 4:00 a.m. and I got a few hours of sleep too.


The next night saw more of the same.  Aggression towards me, throwing things and an outburst towards my son left me angry at Marcia and wondering what I should do.  I called the Alzheimer’s hotline and they suggested I call 911.  I was going on three nights of little to no sleep and was concerned about Marcia’s safety, my son’s safety and the impact this was having on him.  I was sure Marcia would have to sleep this night having not slept much two nights in a row.  The night started off promising with Marcia sleeping from 8:30 until almost midnight.  But after midnight she wandered around our bedroom and bathroom or sat on the edge of the bed jiggling her legs until about 4:00 a.m. before falling asleep on the floor.  Three nights with virtually no sleep, little food or water and significant increase in hallucinatory behavior.  At least confined to our bedroom, I worried less about what she was doing though I couldn’t even try to sleep.  The next morning I called 911.


While in the hospital, they checked for urinary tract infections, dehydration, infections/bleeding of the brain and anything else that might explain the sudden change in behavior.  MRI’s, CT scans, EEG’s, blood work, etc…showed only further deterioration of the brain due to Alzheimer’s, but nothing that we could treat.  Marcia was restless all the time and fell out of bed once, and appeared to bruise her hands and wrist by aggressively twisting and wringing her hands.  It now looks more like Dementia with Lewy Body than typical Alzheimer’s.  DLB is another kind of dementia with a different look, including slumping posture, hallucinations, rigid muscles and shuffling walk.  Marcia has all of these symptoms, but there is not a test that will determine if this is accurate, only the best guess of experts.  Her neurologist will see her in a few weeks, but has had DLB on his radar screen since June.  The outlook is no different from Alz, and she might have both.  The truth is that it really doesn’t matter what label is put on her illness because the progression is unstoppable, though with medication, we hope to see her rest at night and be alert during the day. 


Marcia has been in the Rehab and Nursing Center for 6 days now and is going through rehabilitation to help her walk and improve her ability to swallow.  For now she’s confined to a wheel chair and can’t eat solid foods, or drink anything that hasn’t been thickened (she has “delayed swallowing”) because they worry about her aspirating.  She doesn’t speak but recognizes friends and greets them with a smile and sometimes a hug.  And she still cries every day and has a stuffed animal that she has torn apart already.  Seeing her there in a wheel chair, with 43 other people who have at least 20 years on her takes my breath away and leaves me emotionally spent every time I visit.  I don’t have any regrets or guilt about the decision to place her and have had wonderful support from family, friends and even strangers from my FB support group. Ryan and I are sleeping better and home life is a lot less stressful, and we are enjoying our daughter being home for spring break.  But I feel an incredible emptiness and sadness knowing Marcia is in a facility where she doesn’t want to be and that she is likely very lonely, scared and depressed.  But there is comfort in knowing she is being taken care of by professionals, is safe and that my kids are less stressed at home.


One last point to this incredible turn of events has to be around the support I have been given.  My last post I mentioned I would talk about how family and friends often disappear from the lives of families experiencing Alzheimer’s, and that was my intent until the series of events of the last 10 days or so occurred.  I will say that we have experienced the disappearance of some friends.  But we are truly blessed in the PRESENCE of friends.  Marcia’s close friends (I’ve called them “my other wives”) have been with us every day and have significantly helped Marcia adjust to the hospital and the Nursing Center, while helping me in ways I just can’t find the words to write.  Our family has had wonderful support through meals, visits, cards, emails and Facebook postings from our church, friends and coworkers.  I’ve had college friends visit from PA, DE and NC, visits planned by friends from Western PA and MA, and coworkers and friends who don’t live close to us offering to help and empathizing with what we are going through.  I am humbled by the support, more than I could ever put into words.  All I can say is “thank you” all.

Sunday, March 1, 2015

At least it’s warm in Hell

Over the last couple of weeks, we’ve seen many days with snow, single digit temperatures and even below zero temps and wind chills of -20, so the heat of hell is somewhat appealing right now.  Although I’m choosing to keep as positive an outlook as I can, caregiving and everything affected by it, has become difficult and there are times I feel like hell would be an upgrade.  Alzheimer’s has tested my temperament and angered me countless times.  I’ve been mad at me, mad at Marcia, mad at my kids, friends, employer and even God when it’s Alzheimer’s I’m really angry with.  When I think how bad things are on any given “today”, I know the future, with continued progression, will never be as good as it is today.  I look back on two years ago when I had reason to feel bad about our situation, and wish for things to be that “bad” again.  My life has been blessed in many ways and I can’t really compare it to Hell, but I am angry.  Angry because:

·         Marcia is “forcing me to dance”.  She used to be able to sit in front of the TV when I was working at home or doing normal around-the-house stuff.  Well Marcia really doesn’t watch TV anymore and it’s becoming harder and harder to find things that interest her.  I’ve read and been told how good music is for those with Alzheimer’s and while Marcia has always loved music, she really responds to it now and she dances constantly.  Of course she doesn’t force me to dance, but I dance with her often even though I hate to dance.  But I love seeing her smile and laugh (at me???), and at least (almost) no one else is watching!!  My son has walked in on us several times.  The trauma I’ve put this boy through….  Marcia used to be a great dancer, but no more.  Her motor skill deterioration limits what she can do and she’s probably a tenth the dancer she used to be.  Of course this still makes her twice as good as me!  If this wasn’t hell-like, it wouldn’t be dancing that interests her, it would be back-to-back episodes of Sports Center, or movies like Shawshank Redemption or Get Smart re-runs.  No such luck…  Once “The Bump” went out of style in the 70’s, I had no dance moves left.  I think I’m going to teach myself how to Moon Walk soon. 

·         The difficult moments are increasing in frequency and I’m feeling several weeks of cumulative frustration, anger and sadness.  My last post talked about Marcia’s progression, which is at the core of today’s rant.  I’m aware that if I sat back and really thought about my situation, I would be depressed.  I’ve lost my wife, my job and career and any semblance of a social life.  Sleep, exercise and spontaneity are not where I wish they were.  Probably most regrettable, and something I won’t get back is this:  I’m not able to spend as much time with my kids as I think is necessary and therefore, I’m missing chunks of their teenage years.  Honestly, I am less stressed when they aren’t around Marcia.  Weekends are hard because I just can’t entertain Marcia and get all the things done that need to be done.  Looking at the bright side of things, I have had almost 20 good years with Marcia, more than 30 years with two great companies, many wonderful social memories and two bright, healthy and active kids that have been such a joy.

·         Marcia is showing cracks in her strong façade.  She has been incredibly brave, courageous and full of grace since her Alzheimer’s diagnosis.  She has every right to be angry and depressed, but has only recently let it get the best of her.  I rarely saw her cry during the four years since her diagnosis, but over the last 3 months, tears have been almost a daily event.  Sometimes it’s not just crying, it’s hysterical crying and at times, it’s best described as a tantrum.  And she can’t tell me why she’s crying.  She tries to tell me, but she just can’t get the words out.  She’s frustrated and has tried to hit me on a couple of occasions.  Not violent strikes, but more like “you-just-don’t-get-it” jabs.   I just don’t know what to do to help her.  Marcia could be frustrated due to constant pain.  It’s not far-fetched that arthritis, her neck pain or spinal stenosis is causing pain.  She also has headaches almost every day.  Depression could easily be the reason for her tears, which is understandable and perhaps long overdue.  She can’t communicate, has a hard time walking and has vision problems.  And that’s just what I know about.  I saw a film clip recently where an ABC news correspondent spent 12 minutes simulating the life of an Alzheimer’s patient.  I was unaware that many Alzheimer’s sufferers report hearing a constant noise.  This noise was simulated in the 12 minute clip.  It drove the news correspondent crazy and distracted her from pretty simple tasks.  In just 12 minutes.  Maybe Marcia doesn’t have headaches.  She holds her head in both of her hands almost every day and I wonder if it’s because she hears a constant noise too.  I can’t imagine what she’s truly going through, but seeing her cry so often is almost more than I can take.

·         And I’m angry about how Alzheimer’s is portrayed to the public, even by expert organizations like the Alzheimer’s association.  I’m angry that months ago several politicians proposed investing $6 billion dollars on Ebola research after one American death and 4 were reported infected.  I’m not down on Ebola as I understand the potential impact Ebola could have if it spread here in the US.  It’s just that it’s more than has been spent on Alzheimer’s disease in a decade while millions have died and more than 5million Americans are living with the disease today, from which not one person has ever been cured.  Fears of Ebola, or Aids or terrorist attacks get action.  “Memory loss” in the elderly just doesn’t make the front page. Even the movie “Still Alice”, where the trailer shows the daughter asking Alice what it’s like and she says some days are good and some days I just can’t find myself, or “I’m not suffering, I’m struggling”.  That’s soft selling the reality that most of us living with this @#$%^  disease face.  I’ve mentioned above how Marcia is suffering.  I am suffering and so are my kids.  Marcia’s brain is wasting away and she knows it and I watch it happen daily while I’m isolated from the rest of the world.

While angry and frustrated, I am one of the lucky ones.  I don’t have some of the financial challenges so many others face, and I have a good support system from friends and family.  So many families have to sell their homes to pay for health care and prescription drugs and even more report being abandoned by friends and family (next post will talk about this).  Those living with Alzheimer’s and those that will be living with Alzheimer’s need to have hope.  Julianne Moore’s Oscar winning performance as a woman with early onset Alzheimer’s and her wonderful acceptance speech are helping raise awareness for this disease.  And Glen Campbell’s song about living with Alzheimer’s, “I’m Not Gonna Miss You” was performed by Tim McGraw, and while the song did not win an Oscar, it was one of the nominees.  While this post has a clear angry overtone, the Oscars night was encouraging because so much awareness came out of that night and subsequent interviews.  For that I am encouraged, not for Marcia, but for the next generation. 

I’m just sick of Alzheimer’s, and so tired.

Sunday, January 25, 2015

Year 4 Progression update

Four years have passed since Marcia’s Alzheimer’s diagnosis and I haven’t blogged often, or with detail, on how Alzheimer’s is progressing.  Anyone can go do simple research to understand the seven stages of the disease that describe how Alzheimer’s slowly takes the life of the afflicted, and within Alzheimer’s circles, at least in the Early Onset Facebook support group I’m a member of, there seems to be an obsession with the stage we are dealing with.  I don’t put a lot of stock in the stages as sequential steps in the disease.  I’m not aware of anyone who fits neatly into each stage and who moves predictably from one stage to the next.  In Marcia’s case, she would have been described as stage 5/6/7 very early on with regard to communication, but memory and most other areas were in stage 2.  Bottom line is that it doesn’t matter to me what stage Marcia is in.  Today is the only thing that matters, and no one really knows what tomorrow or the day after will bring.  And the most frustrating part of Alzheimer’s, there’s nothing we can do to prevent what’s going to happen anyway.


For those that know Marcia, but are not near us, or for those who wonder or ask “how’s Marcia”, I hope you find this helpful.  Progression of the disease varies by person.  The average life expectancy is 8 years from diagnosis, but some live 20 years or more with Alzheimer’s.  There’s a theory that those with Early Onset progress faster than those diagnosed later in life.  Our neurologist believes progression tends to be steady.  Could be fast steady, or a slow steady, but there doesn’t appear to be stabilizing periods.  I would say that Marcia’s progression has been steady, but there have been a few times, in conjunction with two seizure episodes, where progression seemed to escalate.   While I don’t have a frame of reference to compare Marcia too, I would say her progression on on the faster side.  Marcia and I recently had an appointment with her neurologist in New York City.  As Dr. Honig looked at the last four years, spanning our first appointment with him to now, he says progression would certainly appear faster than we would like to see.

So what does progression look like? Progression for Marcia is deterioration of abilities in the area of speech, mobility, memory and self-care and all have changed, or progressed in 2014.  While I’m committed to protecting her dignity with regard to how much I share here publicly, it’s fair to make the following assessment of where she is today:

·         Speech (aphasia) has always been front and center in Marcia’s Alzheimer’s presentation.  Aphasia is still very much the dominant characteristic.  While she seems to know what she wants to say, she really cannot communicate with us at all.  Not only does she have extreme difficulty verbalizing anything, it’s become very difficult to get her to give even yes or no responses.  Her speech has deteriorated to little more than a few words a day and if she’s in pain (and she is), she can’t say or even point to where her discomfort is.  If she wants something, I do my best to guess.  I wish I could remember the last conversation we’ve had, but it’s been years.

·         18 months ago, Marcia ran two 5k races.  In May, she ran part of the Branchburg Race Against Alzheimer’s (unplanned, but she was determined to try).  Today, she has difficulty walking up the stairs to our bedroom.  I don’t think this is entirely Alz related.  Hip arthritis and spinal stenosis are likely causes too, but there is some dementia contributions.  Maybe not Alzheimer’s.  It could be Lewy Body Dementia that is factored in here.  In addition to pain or discomfort, she also tires easily, which prevents even walking through the supermarket on a basic shopping trip.

·         Her vision has become significantly impaired.  By this I don’t mean she needs a new pair of glasses.  Her vision changes appear to be in how she processes images.  Since she can’t tell us what she sees, we can only guess that she’s not seeing things the same way we do.  She seems to see things that aren’t there (shadows seem to appear three dimensional, or look like holes) and her peripheral vision seems to have narrowed rather significantly.  She seems to do okay during the day, when she’s not tired, or in well-lit areas.  At night, when shadows are present or when she’s tired she becomes paralyzed with fear and either takes baby steps, or freezes in place.  We now have a wheel chair/transport chair to help get her around in these situations.

·         Posture:  Marcia cannot stand up straight.  Often, her chin is firmly against her chest.  She’s been going to physical therapy to help straighten her spine and loosen the muscles in her neck.  It would appear this is dementia related as sometimes she can keep her head upright, other times she has the posture of a much older woman.

·         Self-care:  As hard as Marcia might try, she just cannot do things for herself.  I feed her breakfast and dinner every day.  While she can no longer utilize silverware without assistance, she can eat with her hands (sandwiches and fruit).  Her prescription drugs need to be crushed and put into oatmeal, applesauce or yogurt, which she takes in the morning and at night.  She can’t get dressed or undressed and she can’t shower or brush her teeth without assistance.

Marcia’s cocktail of illnesses include:  Early Onset Alzheimer’s, Lewy Body dementia, Primary Progressive Aphasia (PPA), Myoclonus, Epilepsy, anxiety, depression, breast cancer, arthritis and spinal stenosis.  We’ve stopped giving Marcia her breast cancer medication after consultation with her oncologist.  She had about 18 months more to go before she would officially be considered in remission, but the side effects of the drug include cognitive decline and her oncologist saw a pretty dramatic change in six months and felt the risk of discontinuing the drug was low.  Seizures and anxiety are effectively managed by Keppra, Klonopin and Zoloft.  But Alzheimer’s, PPA and Lewy Body Dementia are not treatable.  And that is painfully obvious.

Sunday, November 23, 2014

Caregiving and baseball

I’m a fan of inspirational quotes or quotes of wisdom and I’ll share two of them (I don’t remember where I read either, so I’ll paraphrase).  One said something like “when you’ve met one person with Alzheimer’s, you’ve met one person with Alzheimer’s”.  This quote takes me back to the Town Hall meeting I attended (and wrote about) several years ago where caring for Alz patients was discussed.  The comment that stuck with me from that Town Hall referred to the difficulty in training health care professionals in how to deal with Alz when it presents itself differently in every case.  As an untrained health care professional thrown into a caregiving role, what the hell do I know about caring for someone with Alzheimer’s with Marcia’s symptoms?  I do what I do based on doctors suggestions, what I read, what I feel and what I have time to do.  Marcia has several doctors (neurologist, oncologist, an orthopedic surgeon, and even physical therapists).  And they don’t always agree on how to treat Alzheimer’s, cancer, spinal stenosis and arthritis together.  Often one doctor thinks we should do something that one of the others says we should not.  My medical training consisted of watching every episode of MASH at least five times, and most episodes of ER.  This, of course, totally qualifies me to make decisions on surgery, medications and treatments.  So I often do make the final decision.  And I’ve made mistakes.  I’ve failed. 


The second quote says that I should be honored to be a caregiver, because I am the answer to someone’s prayers.  While I believe that (and believe I have prepared my whole life for this role), I do NOT feel honored.  I am burdened, stressed and alone.  And I have failed.  Often.  Both quotes refer to the challenges associated with caregiving, and I know I am not alone in feeling inadequate in this role I’ve been forced to take on by a cruel and nasty disease.


So what is the connection between caregiving and baseball?  I think the connection is the high rate of failure.  Baseball “stars” get a hit 30% of the time.  The other 70% of time, they do not.  They “fail” to get on base and have calibrated success based on what others have done, not on always succeeding.  Since Marcia got sick, I have tried as best I can to be a full time employee, the only parent to my kids, a caregiver to Marcia, a cook, accountant, housecleaner (hahahahah, our carpet throughout the house is one big drop cloth), husband, friend and I’m sure other roles as well.


I can’t say I’ve failed 70% of the time, but I have failed often.  Have my kids received the parenting that two parent households give?  They have not.  Have I performed at work to the level required of my job?  Nope. In fact, I recently lost my job and will no longer be working in a few months.  Have I done what I need to for Marcia as fast and as thoroughly as she deserves?  I wish I could say I have.  I’ve not done things on the same timeline as some feel I should.  Have I worked on my relationships with people I work with, went to school with, or have become close to over the years?  I haven’t because I cannot.


In fact, I would probably give myself a grade no higher than a “C” in any area, though to copy the formats from my kids’ report cards, I would get high marks for effort.  Yet in some ways I am that baseball superstar.  Failing often, but in aggregate, I’m making the all-star team.  And I’ve been able to accept my failings.  Failures that others might see in any given area.  Did I deserve to keep my job?  No.  My company had to pick the best people for the job and I wasn’t the best.  Can I blame Alzheimer’s?  I won’t travel and I don’t put in the same hours I once did, all because of Alzheimer’s, and others can and will.  I’ve tried to keep work and personal life separate, but I’ve not succeeded.  Have I frustrated friends and family by not getting home health aide sooner?  I have.  Have I made all the decisions others felt I should regarding Marcia’s care.  Probably not.  But I have made the best decisions with the information I had, in the time I was able to carve out.


I am the only one who could see all of these “lives” I’ve lived.  And the truth is, I feel good about what I’ve prioritized.  I feel good about my choices and decisions.  I’ve wasted little time second guessing myself or worrying what others think of my “performance” in any given area.  While I’m not at all satisfied that I’ve given my employers, kids, and Marcia all they deserve.  I feel like I’ve performed 30 hours of work every day.  As long as Marcia is getting good care and attention from me, as long as Riley and Ryan are happy and doing well socially and in school and I am there for them when they need me, I’m not failing.  At least not in my eyes.

Taking a break/Feeling blessed

By taking a break, I’m referring to my time away from blogging.  Not only has there not been any real break from the rest of my life, the pace of everything has escalated over the last six months or so.  There’s so much I could write about Marcia’s progression, and I will cover this in future blogs.  Beyond Alzheimer’s, the last couple of months have been unusually busy.  I just haven’t taken the time to write.  And while I haven’t lost the desire, I haven’t had the drive to do so. 


Since I last wrote here, our son graduated middle school and a week later, our daughter graduated high school.  Two really awesome milestones that also meant we are now moving on to high school and…. college!  Honestly, I think middle school graduation has been the surprise emotion for me.  With all the college search, application and preparation, we’ve been thinking about college for a several years.  But in a blink of an eye, we were done with middle school.  Forever!  I just don’t think I was totally prepared for this.


Work has been unexpectedly busy as my company doubled in size via acquisition and I have been fortunate enough to work on part of the transition in addition to my normal responsibilities.  Outside of work, summer camps and jobs, travel soccer and high school tryouts, freshman orientation at Drexel University, my own summer soccer league, a few much needed trips to Drexel to visit Riley, cooking and shopping (seriously!), not to mention everything going on with Marcia have kept me busier than I can realistically manage.  While Marcia went to Maine with her sister for several days, we really did not have a summer vacation.  I took a few days off to interview home health companies in hopes of getting the right person to stay with Marcia to supplement her time at the Day Center.  Several other days, or partial days, I took off for doctor’s appointments, to pick up Marcia from the Day Center, or just catch up on my “to do” list around the house.  I did take a few days to go to the beach with my son, my only fun/relaxing vacation all year. 

The tribulations associated with Alzheimer’s are significant and have given me more angst, stress and some days, despair than I ever thought I’d have to handle. Yet I feel blessed.  That is not to say my life is one to be envied.  I can’t imagine anyone wanting to trade places with me today.  But I am blessed because our situation is not nearly as bad as others.  I’ve done most of my writing over the last six months on Facebook, where I joined an Early Onset Alzheimer’s support group.  Over 2700 members posting questions, venting, offering advice and sharing their stories and frustrations.  It’s a closed FB group that has helped me make decisions, and left me amazed at the devastation Alzheimer’s creates for caregivers.  I feel blessed because as difficult as this has been on me, I’ve encountered people who have lost their homes, cars, life savings, friends, family and jobs.  I’ve heard from people who are on the verge of breakdowns, depression and utter despair.  Many are living paycheck to paycheck and are faced with choices I could not imagine facing.  Do they pay bills or buy food?


I’ve read of a guy recently diagnosed with early onset Alzheimer’s who has 5 kids and is only 32 years old.  I’ve heard from a woman who was diagnosed at the age of 27.  I read of a 19 year old college student who is the sole caregiver for her 50 something father.  And more recently, I’ve read about diagnoses in CHILDREN, kids as young as eleven and twelve with childhood versions of Alzheimer’s and won’t likely live to see the age of 20.  People have written about how their friends have abandoned them, while others have family members who are critical of their efforts, yet won’t lift a finger to help.  While my support group size is not as big as it once was, the help I’m getting is still significant and my parents come often to provide help with Marcia, but also around the house (and they live 5 hours away).  They have been awesome!


What I’m dealing with has changed the course of my life completely, but others have it much worse than me.  And besides all of this, Marcia is still making this as easy on me as one can.  I’ve read of situations in the FB group where aggressive behavior, anger, denial and stubbornness are what other caregivers face.  Marcia is none of those things.  She still laughs and tries to do as much as she can, in spite of her complete inability to speak, and limited ability to dress, eat and bathe.


Make no mistake, Marcia’s Alz diagnosis is devastating to her, to our family and to my future plans as well as my present ego.  Personally, I’m experiencing failure like I’ve never seen in my life.  I’m experiencing caregiving like I never imagined I would be doing.  I have had once a week soccer games as my only escape from constant reminders of what my life will and will not be in the future.  And I miss the social life I once had and all the fun that goes with being able to socialize and enjoy ourselves in the presence of others.  But I am blessed to have had the number of good years with Marcia that I have had.  I’m blessed that Marcia is such a sweet and gentle person whom I admire so much for her courage and perseverance.  I’m blessed to have supportive family and friends.  I’m blessed to have found a Day Center that takes such good care of Marcia. I’m blessed to have worked for a company with people who have been supportive and compassionate.  I am blessed with a decision to buy Long Term Care Insurance before we needed it!!! Without it, I may be selling our house, cars and cashing in my 401k.  And I am blessed with two kids who have shown an amazing amount of strength to deal with so much at such young ages.


I am blessed to be in the presence of a few amazing “angels” who have been there when I’ve really needed them and a community/friends/family/co-workers that once again showed up in great numbers at the Branchburg Race Against Alzheimer’s and who have opened their hearts/wallets to help raise money to fight Alzheimer’s.  While it’s not quite the ice bucket challenge (those of us in the Alzheimer’s community are jealous of how they have raised money and awareness, but are supportive!!), through the efforts of the Napoli family and countless volunteers, we once again raised more than $50,000 for the Cure Alz fund.


There are times every week where I say “my life sucks”.  Sometimes it’s not my life, but it’s me that sucks (more on that in the next post).  But those statements are preceded by bad moments.  There are good ones too, every day, and I have much to be thankful for.  And I know that better days are ahead…..

Saturday, June 14, 2014

Another Diagnosis. Really?

On Monday, June 1 Marcia and I went to NYC to meet with Dr. Honig, her neurologist.  We usually go every 3-4 months, but it’s been about 5 since our last visit as our April appointment had to be moved.  For the last several appointments, we’ve had discussions about Marcia’s medications.  Are they still the right medications, is the dosage correct, etc….What I’m finding out with AD is much of what Marcia takes is really trial and error choices.  In November, we started on a drug called Keppra, which is meant to control the seizures that hospitalized her last October.  Apparently it works great as I forgot to give Marcia her ½ pill evening dose the night before her appointment.  Monday morning she had several of the myoclonic tics that plagued her over the last two years.  These “tics” are not serious, but on this morning, it made it very difficult for her to take her medication and I had not seen them with this frequency or severity since the morning of her seizures.  Thankfully, about 20 minutes after she took her pills, the “tics” stopped.  Dr. Honig said it’s pretty clear the medication works.


Dr. Honig then did the normal physical examination, including asking her several questions.  He and I both think she generally knows what she wants to say and knows the answer to his questions.  She just cannot articulate them.  Marcia can’t really say anything more than a one word answer and that word is more often than not, unrecognizable.  This was not a surprise to me as I’ve seen the steady degradation in her communication skills.  However, he noticed two things that were different, or had changed since our last visit.  First, he noticed an asymmetry to her walk.  Marcia’s left arm and right arm did not move with the same rhythm or motion and her walk was not as fluid as it had been.  He also noticed more stiffness in her muscles.  After looking at the lab reports from her spinal tap in 2010 in conjunction with these physical changes, Dr. Honig said he believes she has Lewy Body Dementia (LBD) in addition to Alzheimer’s (and Primary Progressive Aphasia).


I’ve read up on LBD over the last week or so, and frankly I’m not sure what to think.  Everything about these neurological diseases are mostly hypotheses. We will never know for sure what Marcia has until her brain can be examined under a microscope.  Not everyone has all the symptoms used to describe these diseases and they can show up differently in each person.  I sort of feel it’s up to me to draw my own conclusions.  I joined an Early Onset Facebook support group a few weeks ago (1500 members), and it’s pretty clear, based on what others post and comment on, that I’m not the only one who feels like we are making our own diagnoses or would like to know more definitively what our spouses, parents, siblings are suffering from.  


LBD is hard to diagnose in the early stages as it looks a lot like Alzheimer’s in that there progressive cognitive declines. But LBD also has Parkinson’s-like symptoms related to motor skilss, like slowness of movement, difficulty walking and lists “runny nose” as a common feature.  Marcia does have these physical challenges that aren’t easy to describe by AD alone, and we go through a LOT of tissues.  But hallucinations, violent behavior and depression are often used to describe LBD, and Marcia doesn’t have these symptoms.  Like AD, LBD is caused by a build-up of proteins in the brain, just a different protein leading to a different spectrum of disorder.  Dr. Honig says people with AD can have LBD, and people with Parkinson’s are known to have LBD too. 


So what does this mean?  Like AD and PPA, there is no cure for Lewy Body dementia and it’s progressive.  There are medications to help control LBD, but they have some potentially significant side effects.  My guess is that it just means that language, cognition and now motor skills will all continue to decline, and there’s nothing we can do to stop it.