Still Learning about Robert

After eight years of caring for Robert, he continues to surprise me. First of all, he hasn’t been hospitalized for two years! He’s been to the ER for seizure clusters that wouldn’t respond to the Ativan but no hospitalizations for pneumonia. He had pneumonia a year and a half ago but we were able to treat him at home with the guidance of his pulmonary doctor.

That has to be some sort of record for Robert!

Robert enjoying the day

(Everyone please take a minute and knock on wood! I hope I didn’t just jinx us!)

We have fallen into a steady routine that seems to work for all of us. Richard and I realize that regular respite is just not possible for Robert. While Robert may be doing well, he still requires a great deal of personal care and help. Plus, he mainly moves around in a wheelchair although at home we have him use the walker to keep his legs as strong as possible. We have been told that respite homes prefer women who are mobile and that it is very difficult to find respite for a man in a wheelchair, especially one requiring the level of care Robert needs.

Okay, that’s fine. We work around that and create our own respite weekends when needed. Robert’s schedule also allows Richard and I to have some free time for which we are extremely grateful. Robert goes to a day program that he loves, has many friends and an outstanding staff. He sleeps in most weekends which allows Richard and I time to walk the dogs around the front of our house or do yardwork or work on our books for caregivers.

Robert has lived with us for three and a half years which is far longer than I ever expected but it is working out well for all of us.

Robert is not only fairly healthy but he is extremely happy. In fact, he now says he is not only excellent but doing “excellently great.”

I don’t know how many more superlatives he can come up with!

For special events we do change up the schedule. We usually let Robert sleep in as late as he likes on the weekends since he has to wake up so early on the weekdays. One recent Saturday we woke him up very early (as in, earlier than he even has to get up for program!) and took him with us to the Walk to End Alzheimer’s.

Richard and Rachel registering walkers

My legal management group volunteered to help with the registration table for the second year in a row and this year we took Robert. Richard stayed home with him last year since he was recovering from a seizure cluster but this year we all went!

We loaded Robert into the car, picked up Rachel and stopped by Starbucks to get some coffee and a breakfast sandwich for Robert. He had food, his jacket, a blanket and his puzzle book. Plus, I promised him a chocolate shake later in the day so he was more than willing to go!

Volunteering at the Walk to End Alzheimer’s is not only fulfilling and heartwarming but also a great deal of fun. Everyone at the walk or helping at the registration tables are impacted in some way by Alzheimer’s or other dementias. It is both astounding and overwhelming the number of people affected by this brutal disease.

Once the walk was over, my fellow volunteers wanted to meet Robert since most of them read about him and his “excellent” attitude. Robert, being the ham that he is, soaked up the attention. It didn’t hurt that they were all women since he is quite the ladies’ man.

We talked about that a bit and I even mentioned that when Richard and I brought snacks to his Day Program on his birthday, Robert had a lady friend holding his hand.  Robert matter-of-factly explained that she was in love with him.

This led to follow up questions from everyone and my comment of “don’t break her heart!” Robert, again in his “that’s just the way it is” way, explained, “She’s too young for me.”

Ouch! Poor thing. I hope he let her down easy but I suspect Robert told her just as he told us: bluntly and very straightforward. Robert doesn’t sugar-coat anything!

I love learning new things about Robert and delight in these stories of his. I am so grateful we did something different that Saturday, not only to help the Walk to End Alzheimer’s but also because I got to learn a little something new about Robert’s social life.

It makes me so happy to know Robert has friends at day program and even has a bit of romance in his life. I told you, he is a ladies’ man!

Special note: Richard will be participating in the Walk to End Alzheimer’s in Huntington Beach as we will be in Southern California for Epilepsy Awareness Day at Disneyland the same week. Richard participates in the walk to support our friends Gincy and Steve Heins as Steve was diagnosed with early onset Mild Cognitive Impairment.  Please visit Richard’s walk page if you are interested in donating.  Thank you!

  

   

Caregiving Heroes

Today isn’t National Caregiver Day (I think that’s in August).  February isn’t even National Caregiver Month (that’s definitely in November – mark your calendars!).  Today is just a day that I would like to introduce you to a few extraordinary people who are extraordinary caregivers. 

Because I’m all about getting bonus points, I’m going to start with my Hubby.  Yes, he’s a caregiver too!   Hubby isn’t the only male caregiver around, though.  The number of male caregivers has doubled in the last 15 years.  Some of these men are caring for their wives but others, like my husband, are caring for a parent.

My husband is included in my list of Caregiving Heroes not just for the bonus points but because he so lovingly and diligently cares for his mom.  It helps that she’s a wonderful woman and pretty darn tough lady who had a stroke not too long ago, who continues to have heart problems (and is looking at a valve replacement surgery in the near future) and is diabetic.  Hubby takes her to doctor’s appointments and tests and to the hospital when needed.  He doesn’t leave her side when she’s hospitalized and he has created a thick binder full of every bit of medical information any of his mom’s doctor may need to know.  He’s organized and persistent which are two of the best characteristics a caregiver can have.  He also loves his mom very much and enjoys the time they spend together at the appointments or having lunch or coffee in between appointments.  He’s a pretty awesome son and one of my caregiving heroes.

(I wonder if this is the best time to ask when our baseboards are going to be finished).  Well, maybe not  . . .

It may not come as a surprise but caregivers are everywhere.   We have two in our own household.  The cashier at the local drugstore is one (I was buying nighttime briefs from Robert and the cashier mentioned he was a caregiver for his grandparent).  I have employees at work who are caregivers. 

Look around in your life and you will either know a caregiver or know someone who knows a caregiver.   There are many, many caregiving stories out there.  All of them are ordinary people going about the business of life in an extraordinary way.

Aside from my husband, let me introduce to you a few more of my caregiving heroes.

1.     Kathy.  Kathy cares for her husband who was diagnosed four years ago with Lewy Body dementia.  He is also a Veteran with PTSD and she cares for him at home even though he sometimes doesn’t know who she is or where they are.  He sometimes accuses her of kidnapping him.  She reassures him, she loves him and she keeps him safe.   She also has a terrific sense of humor and can make me laugh with her caregiving stories.  You can read her story at http://thieflewybody.blogspot.com.

2.     Jane.  Jane’s 17 year-old daughter was diagnosed two years ago with a heart defect that had gone undiagnosed since birth resulting in her developing Pulmonary Hypertension.  Their lives were turned upside down and Jane has had to juggle insurance and financial problems, medication battles on top of the heartbreak of seeing her daughter struggle to breathe and try to live a normal life.  Jane did not put her head in the sand once her daughter got the devastating news but, instead, has become an advocate in the PH community and writes about their story in the hopes of helping others with PH.  Please read their story at http://jbones1961.blogspot.com.

3.     Bette.  Bette and her husband are raising three children while also caring for her mother in their home.  Bette’s mom is in the severe stages of dementia and Bette does everything to ensure her mom is safe, comfortable and knows she is loved.  In doing so, Bette is teaching her children about compassion, devotion and love.  Bette is doing her part to make the world a better place.  Bette blogs about her experiences at www.caregiving.com.

4.       G-J.  G-J’s husband was diagnosed with Mild Cognitive Impairment in December 2009.  A kick in the gut for a man in his mid-50s, happy in his career (which he had to give up) and with a son in high school.  G-J and her husband did not wallow or despair in the diagnosis.  Both have become involved in fundraising and education efforts through their local Alzheimer’s Association and are also raising a compassionate and empathetic son.  G-J also blogs about their experiences at www.caregiving.com.

These women (and my husband) are not comic book super heroes or larger than life movie stars.  These are regular people doing the extraordinary: caring for a loved one out of sheer love.  At the risk of being a bit dramatic, I will say they not only change the life of their caree, they make the world a bit of a better place with their compassion and empathy and care. 

Not surprisingly, there are too many caregiving stories to list in one post.  There are several more caregiving heroes to introduce which I will do in a later post.  For now, please take a peek at these caregivers’ stories and share your own caregiving hero in the comment section.  

Tools for Your Caregiving Tool Belt – Support for the Caregiver

We’ve added Education and Navigating Care Facilities & In-Home Care to your caregiving tool belt. We’ve also given a few tips on Navigating Government Programs (which is my personal favorite although it is the most exhausting!). After all that work, the caregiver now needs to do a little something for themselves.

The hardest part of finding help for the caregiver is actually convincing the caregiver how important it is to take care of themselves. In my “Caring for the Caregiver” post, I mentioned women caregivers are six times as likely to suffer from depression or anxiety than their non-caregiving counterparts. Let’s try to fix that.

For many conditions and diseases there are websites and online support groups supporting either the person living with the condition or their caregivers. In-person support groups are also available but many caregivers may find that it is too difficult to find care for their loved one while they attend the group meetings. Others may not be comfortable talking about their feelings or problems in a room full of strangers (even if they are in the same boat).

Online support can be a lifesaver for those who feel alone. This allows for a sense of community as well as an opportunity to learn how others solved problems that we may not know how yet to solve.

Tools for Your Caregiving Tool Belt -- Education

As a follow up to my series about finding a care facility for your loved one (“Where to Start,” “Always with the Checklists!” and “It’s Time to Tour”), I’ve compiled a comprehensive list of resources that may be of help during all stages of caregiving. The process of learning about the condition your loved one is living with to decisions about care either in or outside the home to figuring out government and other agency resources can be daunting. Finding much needed support for the overwhelmed caregiver tends to drop to the bottom of the priority list but cannot be overlooked so I have included support resources for the caregiver as well. Taking care of yourself will ultimately help make you a better caregiver.

Today we will focus on Education.  (Before we get much further, I'd like to thank Denise Brown of caregiving.com for coming up with the awesome concept of a "caregiver's tool belt!")

Being educated about the disease your loved one is living with is a powerful tool. Knowing what to expect from the condition and how it will affect your loved one takes away a lot of the worry when confronted with a new symptom or behavior (as a precaution, anything new should be discussed with your doctor). Education will empower you when talking with medical professionals which can be intimidating for anyone!