2018 - a welcome change

So long, 2017.  Make way for a better year to come. 

Christmas morning

We spent a lovely, quiet Christmas in Phoenix this year, enjoying one another's company while adding a new member to our family: LeRoy Amok Vaughan-Hanstedt!

...At six weeks, he is exploring his new world eagerly while Harper watches with rapt attention.

Cute, but hard to cuddle...

Mom had hoped to travel to see her youngest sister, but those plans fell through as ever. Hopefully one of her siblings will respond to my invitation to see her someday soon. Her heart is operating at about 55% after being hospitalized in November for Afib and congestive heart failure.  She has lost some weight, but her health overall is good.  Our single biggest challenge remains keeping her hydrated and well nourished.  Eating just doesn't appeal to her very much anymore (with the exception of ice cream).

Most days are pretty good for her cognitively.  She experiences sundowning nearly every day and has regular bouts of sorrow that bring tears, but these pass and give way to contentment as long as she has someone to reassure her that things will be okay.  As a ratio, I'd say we enjoy 12 laughs for every cry.

We have joined another clinical study (together as a dyad) that will follow us over the next year.  It's called EPIC - Early-stage Partners In Care, and is sponsored by Arizona State University and the Alzheimer's Association.  Interestingly, all of the patients in our group are men except for mom.  Their spouses are their caregivers, so we stand out when discussing our experiences with the research team.  So far it's been a positive thing, sparking important conversations between mom and myself that we wouldn't have been likely to have otherwise.

A clinical trial for PREVENTION in siblings/children of Alzheimer's patients is recruiting currently, and I may participate.  Chad got me a 23 and Me kit for Christmas, and I'll send my DNA for testing this week.  If I inherited the APOE genetic mutation and/or a specific allele, I may qualify for the trial of two investigative drugs that could prevent Alzheimer's disease.   I wonder what else my genetic and ancestry reports will reveal.  I'm more than a little bit nervous about what I may learn.

Curiosity wins out, however.  :)

Our garden is handling the near-freezing temperatures pretty well so far, and I cover the beds every night.  We did lose most of our eggplants, and the peas look like they're next.  Artichokes and broccoli are good and the Swiss chard, kale and lettuces are thriving in the cold.   Next year we'll have artichokes and zucchini to add to our summer harvest.  ...And don't get me started on grapefruit.  We have literally hundreds turning pink on the trees, sweeter than ever.

Phoenix Pharm workers

Searching for the perfect Christmas tree
near Prescott, AZ

2018 promises to be a year of growth and unity among those of us caring for Sue.  Fortunately, I have Chad, Olivia and mom's cousin Bill as a support network locally.  Mom's sisters live busy lives in Dallas and Virginia, so having our team here as well as the Area Agency on Aging is truly a blessing.  There's no way I could give mom the care she deserves by myself, and I appreciate the experience and time that other people have spent educating us.  I hope 2018 will bring family visits and more new friends for mom.

So, happy new year to all!  Mom's house will be listed after her estate sale in late January (thank you to the extended support network of Irene Jones, Rebecca Kress, Susan & Marv Johnson, Pam Breakey, Diana, Tom & Cynthia Campbell-Corum and Mom's friend, Dave!) and should sell quickly.  She will miss her beautiful garden, but we'll hold on to fond memories that were made in Overland Park.  It was a great place to grow up, and it seems right that a growing young family will move in and start their own adventures at 11700!

Mom sends her love and talks about her friends often.  Feel free to call her cell phone any time... she would love to catch up with the people she misses so much (text me first and I'll be sure she has her phone). Better yet, come for a visit!  You are always welcome in our home... as long as you don't mind sharing space with a hedgehog.   :)

Here's to 2018... may it bring health and happiness for all of us!

2017 Photos

Check out some photos from 2017!

Hummingbirds


Family

On being a caregiver... Dementia vs Cancer - or maybe spouse vs. parent. Both.

I was my husband's care partner during his battle with cancer in 2015. Thoughts about different caregiving scenarios:

I'm reminded of the title I chose for Terry's blog, written over the year before his death in 2016. 'Curse of the Caregiver' is so apt.  It is a mixed blessing, of course, being a caregiver.  You get to spend this powerful, poignant time with the one you love and that is precious.  But every day unfolds to present you with the same, incessant truth in the background of all you do.  Here it comes... Even in the throes of a fun activity on a very good day:  This person is dying, and you are powerless to stop it. 

In the context of Terry's terminal cancer, it was made more difficult by the fact that he was unable to discuss his impending death.  He insisted on a 'go, fight, win' narrative that became tedious and, finally, ridiculous.  But, it was his choice and I respected that by participating in the charade.  It was his coping mechanism, and it had brutal post-mortem consequences for me that I'm still paying dearly for.

In the context of Alzheimer's disease, there is a terminal diagnosis that can stretch itself out for a decade or more.  The only certainty is that there isn't any hope for a miraculous turnaround.  Not one person has survived Alzheimer's, and so every decision made is palliative in nature.  The difficulty lies in the fact that no matter what you do and how much you give, the choices suck either way.  Even when you've discussed their care wishes and understand them thoroughly, they may regret that choice later when it's time to implement it.  At what point should they not be allowed to change their mind?


I see other caregivers put their partner's wishes into action, then take the consequences as if they had made the choice on their own.  Strong, supportive, stoic families turn on one another frequently and disintegrate amid misunderstandings and accusations. They judge, uninformed.  It can get ugly for the caregiver and the patient. 


There is no way to win.  All you can do is make sure you've got the medical knowledge and legal protection you need to back your every move.  Then, make your choices with a mindset of true loving compassion for your patient and move ahead, ignoring the fallout.

If you really want to support a person who is caring for another, then share your opinion whenever appropriate.  When they make a choice for their loved one, rally behind their choices and don't withdraw support if you disagree with their decision.   That's a real blessing in the face of such a personally defeatist endeavor as becoming a caregiver. 

Medical update

Mom doesn't feel much like communicating these days, and I hope this will change soon.  Until she feels like her social self, I'm posting updates to keep close friends and select family informed. Email me directly at proinmotion@gmail.com anytime with questions/concerns. Feel free to share with anyone who misses and cares about Sue.

     

     Managing symptoms

Potentially chronic 

Since mom's stay at the hospital in early April, she has presented with some new symptoms.  Fecal incontinence even while struggling with fecal impaction began as soon as we got her to Arizona. I think we're past the impaction, but the incontinence is still a daily (and all night) problem.  E-coli was detected through urinalysis, so she's being treated for UTI as well.

Edema is pretty pronounced in both ankles and calves, and although her blood pressure is almost back to normal, she is dizzy and unsteady when walking or standing.  Anemia, skin irritation/dark bruising and scalp rash persist, and, of course, cognitive decline continues to upset her.  She just can't seem to drink enough fluids during her day despite being reminded repeatedly about her risk for dehydration and repeated kidney shutdown.

So, our diet has included lamb, beef, spinach, beans... all of which she seems to genuinely enjoy.  It's great to see her appetite for food - and for life in general - improving significantly.

We have selected a good geriatrician with an office ten minutes from home, and she is enthusiastic about him.  Yesterday, she underwent ultrasound scans on both her legs to check for blood clots.   Neurologist is scheduled for next week, and Senior Bridge came to assess the house for potential hazards as well.

Apparently we're doing all the right things, and now we must address her financial situation and the host of problems presented by Andy's refusal to participate in her care as promised.  Understandably, this is her biggest source of grief and anxiety.  Neither of us understand this development, but we will handle it and move on.

Fortunately, she is starting to feel comfortable in her new environment and stays busy gardening and rearranging my kitchen.  Locating utensils and spices has become a daily game, and I am committed to treating her with kindness and patience which is personally challenging at times.  There are more times of laughter than there are times of frustration now, and I consider this to be a small - but significant - victory.  She has really enjoyed dinners and birthday celebrations with Chad and Olivia, who have welcomed her to the 'family' with gusto and open arms.

Good medicine, indeed.

Stay tuned!

From March...

.... to April!  

Easter - Getting around

Mom doesn't feel much like communicating these days, and I hope this will change soon.  Until she feels like her social self, I'm posting updates to keep close friends and select family informed. Email me directly at proinmotion@gmail.com anytime with questions/concerns.  Feel free to share with anyone who misses and cares about Sue.

Happy Easter!  Mom was released from the hospital with some new equipment... she refused the walker, but accepted a brand new cane to help her walk.  A gait belt, shower handles and sensible shoes have become accessories as well.  She's getting stronger and her appetite is nearly normal now that her medication regimen is reasonable.

Fun at the hat shop in Prescott

She is allergic to some of the flowering desert plants that surround us, so we'll be addressing that with her new GP and I expect they'll do a full workup at her followup appointment. 

We enjoyed a nice Easter dinner and did a little work on mom's room and the tomato plants.  After making deviled eggs out of the colorful assortment of Easter eggs we gathered, we will sit and make a daily schedule and plan the week to come.  Meanwhile, Harper is making sure mom understands that they'll be sharing her bed. 

Nothing beats a little pet therapy...

Day 1

Mom doesn't feel much like communicating these days, and I hope this will change soon.  Until she feels like her social self, I'm posting updates to keep close friends and select family informed. Email me directly at proinmotion@gmail.com anytime with questions/concerns.  

Welcome home, Mom.  Today was our day one.  She is frail, but ambulatory and in good spirits.  On a few occasions I caught her in a moment of melancholy or frustration, and I know being here must be bewildering in those moments.

Literally suffering from malnutrition, she can eat very little at most meals.  Therefore, I encourage her to graze all day.  Today I woke her up with chicken (I was making soup for Olivia, who stayed home sick from school) and orange juice.  Then some birthday cake.  Healthier stuff was presented throughout the day, of course.  Mom is currently at 94 lbs.  She needs to eat as often as possible.  For the time being, if my mom wants it, I will try to get it for her.

Today's activity:

Unpacking
Laughing about the items I packed for her (I chose her smallest clothes - still too big)
Chicken soup factory in the kitchen
Playing with harper
Applying band-aids
Tending to the tomato plants
Reorganizing the backyard garden for better sun
Asparagus with Shells and Brie for dinner
Small glass of wine
Charlie Rose
Bed.


Not bad for day one.

It's official.

In general, mom's cognitive issues began a few years ago. She noticed a difference in her thinking and told her doctor.  Then another doctor. Followed by another.  MRI, CAT scans. Psychological memory testing... none of these tests shed any light on the truth.

It took a PET scan to detect the telltale amyloid plaques and the tangles in her cerebral cortex.  She's probably had Alzheimer's disease for years, but she was officially diagnosed in October of 2016.

Now, she's a few months into her life as a person living with an Alzheimer's diagnosis.  Having had a recent scare that landed her in the hospital, she has had to acknowledge one of many difficult truths that come with this disease.  Despite the fact that she's still in the early stages of the disease, she needs assistance in order to live.

That's where I come in, and I'm damned glad to do it.  I'm Eli, caregiver for my mother, Sue.  She and I arrived in Phoenix last night.  It was my birthday, and we were completely exhausted from a week-long stay at the hospital and a frantic packing session.  We collapsed into our plane seats and promptly ordered red wine from our flight attendant.  There was no need to say a word.... we just looked each other in the eye and simultaneously acknowledged the fact:

This changes everything.