Saturday, 4 July 2015

When Caregiving Leads to Employment - One Woman's Experience

My name is Michelle Thompson and I am part-time blogger and social outreach coordinator for Parentgiving.com, as well as a mother of three, wife of one, and caregiver for both of my elderly parents (who live with us here in Caldwell, New Jersey).


My caregiver journey began three years ago as my father began to show subtle, then not so subtle signs of dementia.  As I assisted my Mom in understanding his condition, his outlook, and his therapies, my world (as I knew it then) was in for a change.  Over the years, my very capable father had managed their finances, kept their house and landscaping in reasonable shape, cooked, shopped, and carried a major portion of their day to day responsibilities.   His dementia presented itself slowly: small, gradual signs of "senioritis" such as forgotten car keys and forgotten parking spaces and awkward, sullen gaps in communicating with loved ones de-evolved into blank stares, trouble following simple instructions, medications not being taken, wandering of the hallways, and longer sleeping and napping periods.  About this time, part-time and night-time incontinence gave way to full-time incontinence.  My mother, with her own declining health (type 2 diabetes, poor circulation and ever limited mobility) did what she could, but was mentally frustrated and physically a wreck in trying to attend to his daily caregiving needs.  Her caring for Dad was accelerating her own physical deterioration.

In coordination with my brother (now living in California) we brought in professional caregivers to assist mom, but we never seemed to find the right "fit".  We cycled through several agencies, but when Dad started needing overnight care, our requirements changed.  They really weren't in the financial shape to move to assisted living (especially here in Northern New Jersey!), and although I had some reservations, there were signs that I could assist them as the dutiful older daughter: the last of my three kids was off to college, I had a highly flexible schedule working primarily from home for Parentgiving.com, and my ever loving husband understood the financial bind my parents were in AND the emotional bind I was in as the oldest daughter looking to provide care and comfort to my rapidly aging parents. 

Long story short, we sold my parent's house and began the not so easy task of retrofitting our own house to accommodate two seniors with limited mobility.  Where to begin?  With the help of our contractor neighbor, we converted our dining room into their new master suite, complete with a basic hospital bed for Dad and a tastefully decorated twin bed for Mom.  After 50+ years of sleeping together, it was a hard transition for both of them to sleep apart, but keeping them in the same room helped….and Dad’s occasional nighttime leakage from his incontinence underwear did not wake Mom for the first time in about two years.  We also fitted Dad’s hospital bed with an adjustable Bed Rail, to both minimize his nighttime wandering, and to assist his getting to and from the bed.  Next was the first floor guest bathroom – it became “their” bathroom, and required a not so inexpensive standing shower stall – converting it from a half bath to a full sized bathroom.  We also installed a floor to ceiling pole (for transitioning from the shower) and various grab bars (inside the shower and by the sink) to assist in their bathroom mobility.   After Mom endured some issues in getting up from the toilet, we added a toilet safety frame to minimize middle of the night calls for help.  One of the biggest assists to my parents was to install motion sensor lighting – both in the hallways and inside of the bathroom.  We don’t realize how diminished sight (especially at night) can affect a senior’s ability to safely navigate their home environment.  My husband and I soon began to settle in with my parents sleeping schedules: their nighttime bathroom runs no longer awoke us from a dead sleep, and our nocturnal selves’ adjusted somewhat – deep sleep continues to elude me as I listen for any calls for help, or for when my Dad is confused and wandering.

As we ALL adjusted to the changes, I next focused my attention to my parents’ doctor’s visits, wellness checks, medications and medication schedules.  Each visit and subsequent blood / cholesterol / blood pressure / blood thinner / anti-coagulant test spawned a ripple effect across their respective spectrum of medications, dosages and effects.  The only way I could somewhat help them manage was to keep an old-fashioned journal notebook.  Once medication dosages and schedules were stable, I purchased a MedCenter pill dispenser (with Alarm) for each of them and this has helped greatly- and Mom is still able to manage the allocation of meds for both she and Dad.  
My working for Parentgiving.com has helped tremendously in getting Dad his incontinence supplies – I was able to work directly with Customer Care to first sample various brands and sizes to find what fit him best, and what worked best.  (We eventually settled on Tena Briefs for his daytime use, and Molicare Super Briefs for his nighttime use).  After getting a good understanding of utilization rate for these supplies, I set up a subscription for both items with Parentgiving using their Dry Direct ordering system.  The order ships on whatever frequency we decide, and we order by the case to minimize cost – Parentgiving sends an email when the order is about to ship, and the shipping time is usually one to business days.  We also order flushable wipes, latex free gloves, and Baza Protect Cream (to keep Skin Dermatitis at bay).  With Parentgiving’s super-fast ship times (everything usually arrives in one to two business days), I am able to order as needed and the convenience of these supplies arriving at my door is a Godsend.

Taking care of my parents, under my roof, has not been without its challenges.  Dad has fallen and still wanders at night, and we are considering bringing in a professional caregiver on a part-time basis to assist for overnights.  Going from semi-empty nesters to bringing in two additional adults (with caregiving needs) has been stressful and has required extreme amounts of patience (for which I am ever grateful to my husband) – but there really is no alternative at this time.  We know Dad (and Mom) will eventually require full-time, institutional care, but the longer we hold off that reality, the greater chance we can support it financially – and knowing that I did my personal best to love and care for these very important people, within my own home, for a good stretch of time, provides a great sense of peace.

Michelle Thompson
Michelle works for Parentgiving.com when she's not caring for her father. When not at work or around the house, she loves the ocean and to travel!


Tuesday, 30 June 2015

A FABULOUS INNOVATION FOR SENIORS - I LOVE IT!

Every day I scour the internet for caregiver news and innovative products.  Today I want to tell you about the best thing I’ve found in ages – this invention will help to lengthen the time seniors can live independently and it will make a real difference to our elders’ health.

WHAT IS IT? 



It’s a medication dispensing innovation called PillPack – here’s how it works.


For more information, you can go HERE

WHAT’S THE BACK STORY?

TJ Parker is the pharmacist who came up with a solution to simplify the life of 30 million older American adults managing their medications at home. Growing up around his family’s pharmacy, TJ saw the struggles of patients who juggled complicated medication schedules and multiple trips to the pharmacy every week. As many family owned businesses do, the Parker pharmacy identified and catered to the needs of their long-term customers. The Parkers, with the help of TJ, created intuitive and stylish packaging technology and a seamless system for filling and delivering prescriptions that allows patients and their caregivers to feel in control. TJ saw the need to throw the antiquated pharmacy model out the window and create a better, more user-friendly experience.  But what he didn’t throw out was personal service. He knew too, that customers wanted a system that could work seamlessly with their insurance providers.  This reinvention led him to open a company named PillPack with a mission to re-invent the pharmacy.

WHAT ARE PEOPLE SAYING?

"PillPack is everything I was looking for to help my elderly Dad regulate his twice daily medication dosages. The system is clear and simple for any and all ages to understand. The packaging is ingenious. I cannot say enough positive things about the PillPack customer service and pharmacist team. Just outstanding attention to detail combined with extremely knowledgeable, kind and compassionate staff who clearly aim to please and satisfy their patients and their families. Pillpack has taken away the constant worry I used to have when hoping my Dad was on track with his many medications. I highly recommend PillPack."
Beth T., Massachusetts

"PillPack is super easy for my mother who has Alzheimer's. No one has to stress out filling the pill box anymore and we don't have to worry about spilling it."
Shawn S., Minnesota

"I used to always forget to put my pills in the weekly pill box. PillPack has made it so much easier and I have been telling everybody about it."

Carla P., Arizona

WHAT I SAY:

My Mom uses a daily pill dispenser, but she has multiple tablets each day.  She still has to remember which pill is which and what time she needs to take each medication.  PillPack is a simple and easy way for my Mom (and anyone who is on multiple medications) to simplify their home health.  I love this product.




Thursday, 25 June 2015

ONE SIMPLE, POWERFUL WAY TO SUPPORT CAREGIVERS - My Guest Blog Post on The Mighty


In times of hardship or pain, looking at the people we love can be powerful medicine. Parents and caregivers need to be on the receiving end of the loving gaze of family and friends too.

Here’s what got me thinking about eye contact: I happened to notice a billboard with a photo of a beautiful but destitute young African woman holding a dangerously thin infant, who was clearly malnourished and distressed. I thought it was so odd that this young mother wasn’t looking at her baby – she was gazing at something in the distance.
earlyfam3
Suddenly, I recognized myself in that mother. Our son Nicholas has severe cerebral palsy. When he was young, he suffered from cyclical vomiting syndrome. Every attempt to spoon-feed my boy ended badly and eventually he received the diagnosis of “failure to thrive.” I felt deeply wounded by my inability to nourish my son. Surgeries and time eventually enabled our boy to overcome his gastro woes, but I recall looking away from him in those dark days as I pushed the spoon toward his tiny mouth. I still feel badly about that.
Eye contact is a powerful kind of hand-holding. Sick people need it, people in pain need it and so do caregivers. Eye contact says, “I am with you. You don’t need to experience this alone. What happens to you happens to me, too.”
When Nicholas was 12, his hip dislocated and the orthopedic surgeon recommended a major reconstructive procedure. Transfusions would be necessary due to blood loss – the surgery sounded invasive and frightening. Nick was listening, holding his breath, wide-eyed. I bent down in front of him and held his hand. I asked him to look at me and I said, “Nicholas, you and I are the same blood type, so I am going to give you my blood for this surgery. My blood will be filled with comfort, with healing and most of all with my love. I will be with you all the time in the hospital to make sure you are fine. I promise.”
nicksurgery
Later that day, my best friend arrived at my door. She already knew about the decision and, in our entrance hall, she held my hands and looked straight at me – not for long but enough to say clearly, “You can do this and I will help you.” She smiled and squeezed my hands.
Caregivers look at their charges all the time…scanning for signs of decline, bed sores, fevers or for changes in breathing and function. We are expert observers. But we need friends and family to look at us too. I often say that we cannot do this caring and giving alone. We need companions in our loving work. One powerful way to be a friend of a caregiver to look her in the eye.


Read more: http://themighty.com/2015/06/one-simple-powerful-way-to-support-caregivers/#ixzz3e8NyuOIJ

Wednesday, 24 June 2015

A Remarkable Story of Banishing Grief After Loss

KarolinaJonderko is a Polish photographer who nursed her beloved mother throughout a frightful journey to the end with cancer.  After her mother died, Jonderko realized that she’d forgotten all the happy memories of family life before cancer.  So she took a remarkable decision.  Jonderko decided to photograph herself wearing her mother’s clothes and have her sister recall and record happy memories evoked by various outfits.  Jonderko's sister had her happy memories intact because she had not nursed their Mom.  At first, the project was purely personal, but when a photographer friend saw the images, he urged Jonderko to share them in order to help others struggling with grief and loss.  I am very glad that we have these images now and that through her art, Jonderko was able to reclaim her happy memories of her mother. 



"It’s Christmas Eve, mom bustling in the kitchen, taking golden carp out of the oven carefully as not to stain herself with the hot butter. She is even wearing makeup, green, to match the outfit. She’s happy. She loves Christmas. After dinner, she is sitting at the piano and we all are singing Christmas carols." (Text by Karolina Jonderko’s sister)

My own daughter Natalie is a specialist in material culture and object analysis.  She has a particular interest in clothing, memory and identity.  In her undergraduate course of study, she wrote an essay about a dress and a suit that I had worn years ago and that I gave to her.  This is what she wrote about my clothes that she wears now:
 
In Daniel Miller’s ‘Making Love in Supermarkets’, Miller explains the act of parenting as a sacrifice through love. Miller shows that parents want to give to their children the sense that they are known and loved, always searching to give them the best life experiences and chances as possible. Often, this relationship is mediated through material objects. When my mother passed on these dresses, she passed on the hopeful sentiments that I would someday experience the same happy memories as she did. As McKraken explains, when things are bought or passed forward, there is often a ‘divestment ritual’, whereby the traces of its passed owner are erased, in order for objects to be personalized by its new owner. However, in the case of these garments, the exact opposite of a divestment ritual has happened where my mother and I both reside in the garments, both mentally and physically. In reaction to passing the garments on to me, my mother stated “I don’t see it as a loss at all, it is a gain, they have a new life through you. Parenting is all about love, you want your child to have, you want your child to dream, you want your child’s dreams to come true, and to give them a symbol of your own dreams coming true”. Here, the garments act as a bridge between the relationship I hold with my mother, where the narratives of our lives become increasingly embedded within them not in a sentiment of tension, but mutually constitutive. As the garments are continually worn, the stories accompanying that elevated experience are told, and we continually learn more about one another as individuals.  (Essay "My Mother's Dress" by Natalie Wright, Masters in American Material Culture, Winterthur Museum and Gardens)

(Bead detail from my dress that Natalie now wears.)


I am so happy that my daughter has my dresses and that we each experience such strong individual and shared memories through them.  Listening to Karolina Jonderko today reflect on the loss of her mother, I thought about my own mother’s things.  I thought about what I will leave behind for my children.  How will our losses be healed by touching our loved one’s possessions?  Karolina Jonderko offers one way (her way) of banishing painful memories and replacing them with mental images of smiles, laughter and love.

Monday, 22 June 2015

REMOTE CARE VS CARE AT A NURSING HOME: Which Option is Better For Your Parents?

This is a really informative and helpful guest post by the writers at TopTenReviews that I'm more than happy to share.



Choosing how to support your parents in their golden years doesn't have to be a burden. Depending on what you and your parents are looking for in care, you have a choice between nursing homes and care given at home. Here are some benefits and disadvantages of each method that should point you toward the best solution for everyone.

What Conditions Are Better Managed at a Nursing Home?

If your parent has an advanced condition that requires constant or very technical care, their care is probably better left to a professional at a nursing home or hospital. Parents with degenerative disorders like Alzheimer's or Parkinson's that become worse over time are also suited to nursing home care. In many cases, these patients will be in-home care at first, then progress to the point where they need to transition to a full-time care facility.

What Conditions Are Better Managed With Remote Care?

If your parent has a high risk of infection because of a weakened immune system caused by AIDS or an auto-immune disorder, definitely consider keeping them at home as long as possible. The spread of germs inside a nursing home is faster than in the home because of the number of people who could be potentially carry an infection.

Do not underestimate a simple flu or urinary tract infection, even at home. According to the American Academy of Family Physicians, about one-third of all deaths of people over 65 are the result of infection.

Is In-Home Care a Safe Option?

You are in control of who you hire to take care of your aging parent. Always perform thorough background checks on someone before hiring them to be a remote caregiver. The best way to confirm that their experience listed on their résumé is real is by calling references and checking up yourself.
Instead of hiring an independent home caregiver, consider hiring through a home care agency. Many of these agencies do the background checks for you. Some of them even require their caregivers to become certified by passing a series of tests.

There is one more option. If you and/or your parent don't feel comfortable with a stranger providing your parent's care, a family member can give the care, instead.

Is Remote Care Something You Can Do Yourself?

Anyone can become a caregiver if they are willing to learn how. It's not a task for the squeamish, since caregivers deal with bodily fluids and sickness every day, but if you're up to the challenge, your parent may appreciate the one-of-a-kind attention only their child can give. Plus, your parent will get to stay at home instead of moving to an unfamiliar nursing home.

It will be impossible for you to offer care 24/7. For those times that you have to leave a parent unattended, have a network of other family members who can help, or use a trustworthy medical alert system.

Keep in mind that a large investment goes into becoming a caregiver. If you have other responsibilities like a job or kids that take up most of your time, it may be too stressful for you to take on your parent's care yourself. In that case, if you've also ruled out a home caregiver, a nursing home is probably your next best alternative.

What Are the Advantages of Nursing Home Care?

As opposed to a single caregiver at home, a nursing home has an entire team dedicated to providing care to your parent. Nursing homes foster a community environment between staff and those requiring care. There might even be recreation opportunities available to residents of a nursing home that would otherwise be unavailable at home.

What Are the Advantages of Remote Care Giving?

One surprising advantage of home care is long-term cost. Many home care givers charge very reasonable hourly rates, allowing you to save some money, especially compared to a private nursing home. However, there will probably be a bigger initial investment for home care, especially if you need expensive medical equipment or renovations to the home for accessibility.


Now that you've weighed these factors, the decision between home care and a nursing home should be more clear. Remember that these decisions are never final and you can always switch between remote care and nursing home care if one doesn't work out.