But I'm the Expert?

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By Billy Mitchell

Recently I was part of a great group of people who came together at one of my town’s local libraries to watch the Frontline PBS documentary film “Being Mortal” * by Dr. Atul Gawande. After watching the documentary, I joined a small panel to take questions from a moderator and audience regarding death, dying, and end of life issues.

I’m not sure how the host of the event felt, but I felt like the evening was a huge success. We had a great turnout and everyone was extremely engaged with both the documentary and conversation that followed. I’m grateful I was asked to be a part of it and I’m already looking forward to another similar event taking place in a couple of weeks.

With all that said, after any event I try my best to check-in with myself and see if there are any lessons or take-aways from the time. Last night as I processed my time with everyone at the library, there was one thought ringing in my mind. I’m not even sure who else noticed, but it was something that bothered me and I can’t stop thinking about it.

So, what happened? Something that happens very frequently in society. Something I have spent a career educating people on how to not fall victim to. Yet, I fell victim to it myself.

I noticed during the documentary someone (I can’t recall who as I write this) was struggling with using the term “dead” or “die.” This is extremely common. When you watch for it, you notice it happens all the time. Even during our panel discussion someone used the phrase “this topic we are discussing” repeatedly instead of “death.” She would say, “we are here to talk about…’this topic’ tonight.” At one point, I thought, “I don’t think anyone has said the words “death” or “die” or “dead” tonight. It’s like we’ve walked up to the edge of the cliff and we are just too afraid to peak over the other side.

The funny thing is a few minutes later a person asked me a great question about difficult experiences in hospice. As I answered his questions I felt myself getting to the part “and the night he died”, but instead I opted for, “and the night he (I felt myself pause right here) passed.” After the word left my mouth I thought, “that was an odd thing for me to say.” I do not normally talk that way. I have helped host an event called “Death Café” where people sat around, drank coffee, ate cake, and talked about what was on their mind regarding death and dying. But, here I am now talking about “he passed?” Might not seem like a big deal, but it was. Something had shifted me during the event. What was it? What was going on?

I’m sure no one in the room noticed it happened, but I did. Death is not difficult for me to talk about anymore. It is no longer taboo or impolite. I don’t mean for that to come across as unfeeling or provocative. It’s just I’ve been in and around hospice for many years. I feel like I’ve been given a real gift. I see death as a natural part of life. It’s not a fun part of life and it’s an extremely difficult part of life (often tragic), but it is natural.

One thing I’m passionate about is helping others feel more comfortable talking about death and dying. I have found that someone needs to name the elephant in the room during times of tragedy, illness, or simply old age. When difficult things aren’t named and talked about emotions can get buried and they later seep out in the form of bitterness.

The interesting thing I found from this event was how easy it is to get swept away into a culture of not wanting to be the one who says, “the d word.” I had forgotten how hard it can be to have those discussions. The best lesson I learned that night as the “expert panelist” was no matter how much I know, I still should have the courage in the moment to apply the knowledge. As a caregiving professional, it isn’t just about how much knowledge I give others, but how do I encourage and possibly inspire them to have the courage to have these difficult conversations. Knowing is not enough, doing is what really matters… take it from the expert (the expert who will do better next time).

* I highly recommend the book and the documentary by Dr. Gawande.

Billy Mitchell, MA, HCA is Administrator at TrueVine HealthCare (Home Health-Palliative-Hospice) located in Norman, Oklahoma.

It's a respect for life and dignity. . .

June is for celebrating nursing assistants: those who serve with such love and skill and so often seem to be energized by caregiving, which, honestly, can be very frustrating and exhausting work.

Betty woke up early to her passion and profession as a Certified Home Health Aide and finds much joy in helping patients be their best. She shared some of her story with us here:

Military Children Appreciation Month

In this month of April, the month of the military child, I ask that you remember those who are left to miss their parent, their home, their friends. The sacrifice these children make from a young age is a heavy load to bear at times, but in the end it leaves you with experiences and stories that most people don’t ever have.
Growing up in a military family provided me a vast amount of opportunities to travel and see new cultures at a young age. The military child or BRAT as we are sometimes called are a strong and resilient bunch. We can pack our bags, leaving out our favorite toy of course, and move halfway across the world without batting an eye. The military lifestyle provides us many opportunities to use our people skills to make new friends quickly after a move. These friendships often carry throughout several years through moves far away and near, but our shared experiences bind us together. At times during our childhood, one, or in some cases, both, of our parents were gone in order to serve our country. It’s something we have much pride in.
 
As a military child I’ve learned to be tolerant of other’s opinions and cultures. I’ve learned to adapt to new environments with ease. I’ve learned that even though things may seem tough or lonely, there is always something good to look forward to. Most of all, I have learned that family time is important. Through all the chaos of moving, deployments, and changes to work schedules, family time is often a precious commodity. I have used all of these skills to bring to Heavenly Hospice’s Bereavement Program. Through my time here I have learned many things from my co-workers, our patients, and their families. I truly feel that my childhood experiences have prepared me to work in the Hospice Community for many years to come.
In honor of all military families, and in special regards to those I’ve gotten to know under our care, I thank you.
Rhea Johnstone, Heavenly Hospice
 

What’s this “OCCUPATIONAL THERAPY” about?

Many patients and families are confused by the term “occupational” therapy and may even respond, “Well, I’m retired.” In order to help the public really understand the scope of this treatment and its goals, we went straight to the
professionals. Keri Crutchfield, CEO, PT, of Balanced Therapy, helpfully shared this information:  

Occupational therapy provides skilled treatments to help individuals achieve and maintain independence in all areas of their life. 

OT can improve skills for the “job of living” whether it is for one’s occupation or for one’s self-care. OT assists people with their ADL’s (activities of daily living), which vary from person
to person. The OT will set up a care plan specific to the individual to help them achieve their goals. The care plan is approved by the patient’s physician. This may include dressing, grooming, bathing, cooking, shopping, writing, cleaning, toileting, feeding, ambulation, opening items like doors and jars, and using the telephone.

OT can recommend and instruct in the use of adaptive equipment to assist patients when needed as well as splints or braces to help maintain or improve mobility or support.

You can receive occupational therapy in a variety of settings: the hospital, skilled nursing facility, home health, outpatient, rehabilitation centers, schools, mental health facilities and occasionally hospice care. OT’s treat a multitude of different 

Occupational therapists have a 5-6-year post-baccalaureate degree, and occupational therapy assistants have a 2-year associates degree. They both have to pass a national exam (NBCOT) and are licensed by the State. OT’s and OTA’s are
required to attend continuing education classes to maintain their licensure.

Therapists are drawn to the field of occupational therapy due to their compassion to help others. There are so many blessings an OT/OTA receives on a daily basis. It is so rewarding when a patient’s face lights up because they are now able to do something they weren’t able to do before.

 

My Terms

Toni Jolly with Julie Myers

 

I was 29 and my best friend had invited me out for a movie night. We had been mothering toddlers side by side, hers born the rigorous adoption method and mine by the rigorous other method. People were raving about the movie, Terms of Endearment. This took place in the days when they didn’t show you the entire movie plot during the previews—I had no idea what was going to happen in this movie.  In the back of my mind, I knew I had a doctor’s appointment the next day.

 

I had found a lump the year before and had it removed. It was benign, and I had no family history of breast cancer. All was good, but now... it wasn’t healing, it was sore, something wasn’t right. I was in the doctor's office that very next morning. BOOM. There it was, those terrifying words, “very suspicious”. He suggested a specialist and I left in horror. 

 

My husband (at the time) was with me. I held it together in the office but became hysterical once we reached the car.  The fictional movie from last night, the Hollywood drama of a dying young mom and leaving her little kids, was all that kept going through my mind. It was becoming a reality to me. My little boy Jason was only 2 years old. The doctor must have seen me react out the window. He came out to the car and they gave me a shot to help calm me down. 

 

Surgery was scheduled right away the next week. “The nodules are in both breasts,” they said. “But we can just take the one, and we can ‘keep a close eye’ on the other.” I didn’t want to wait around and see what other dreaded surprises were in store, so I chose to have both removed. They told my family it would be a 1 ½ hour surgery. They kept removing and sending samples to pathology. Six hours later, surgery was finally over. It was Stage 3 cancer, they got it all! Chemo/Radiation would not be needed.  

 

In recovery, I nearly bled out, though. I had a long battle to fight. I remember just sitting up and seeing blood pour out of the drainage tube, onto the bed and the floor everywhere. I had to have two blood transfusions. Back then, blood was in demand. They highly encouraged family to donate. My cousins were there for me and my uncle was a perfect match! Without their support and blood donations, I may not have made it.

 

Insurance in those days did not automatically cover reconstructive surgery. They sent me home with absolutely no warning, no preparation of what I would look like. They had put in place saline implants, but it hadn’t crossed my mind they wouldn’t be filled yet. You just can’t prepare yourself for something like that! My mom was there for me, she was my rock. When I didn’t want to go out of the house, she would shop for clothes for me, bring them home for me to try on, and take back the ones I didn’t want. 

 

I put everything into raising my son, but it was so hard. A 2-year-old needs lifting for bathing, dressing, for fun. I could not lift a thing, couldn’t play ball, cuddle with him... and 2-year-olds like to kick. Ouch! But being with him was my happy place. He didn’t know what I’d been through. He loved me no matter what. Going out for ice cream with my precious little boy, snuggling up to him was my healing. A year later, I began to feel much more confident. I wasn’t going to give up!

 

When I was younger, I didn’t necessarily want to talk about it. There’s sometimes a shame; some people look at you differently. Now that I’m life-wiser, it’s different. I am proud to be a survivor! I have relocated and become close to my sister who is going through a battle with breast cancer herself right now. I’m here for her. I made it. I’m blessed and I’m here for my whole family.  I want my granddaughters to know about early detection to be aware. I want to share my story and let women know that they can be strong and that family and friends’ support is key.

 

Something great happened last October.  My company usually participates in raising money for cancer and in Race for the Cure. I always help with fundraising, but I’ve not participated on the walk/race day before. This time, I signed up to walk. They sent me a survivor hat and t-shirt, and I told my 13-year-old twin granddaughters what I was doing. They came to support me and we made it out there together. That’s my team! I know every person and experience with cancer and with life, is different. I just want to share a couple things I learned in hopes that it may help someone else:

 

1. Please don’t “Doctor Google” yourself, looking up every symptom and prognosis. I listened to other women’s experiences just sitting in doctors’ offices and it was so hurtful. No one else is going through just what you are. Find out what makes you comfortable and what is right for you.

 

2. Never estimate someone’s situation. Everyone in a plastic surgeon's office is not there for "enhancement"; not everyone can donate blood who wants to. People have to tell you their story before you can know them.

 

3. If you are supporting someone going through cancer, help her take her mind off of it. That’s all I wanted when I was recovering -- to not think about it. Take them out to (happy) movies, dinners, a haircut, to buy shoes, or just talk about other things in life. You might be their rock!

A New Day in Healthcare - Part One

     Recently, a co-worker told me the story of her mom’s death. It was heartbreaking.  All deaths have an element of sadness to them, but not all feel tragic like hers did. My co-worker’s mom was diagnosed with a very aggressive form of cancer in December several years ago. The doctor ordered curative treatments and kept her mom in the hospital through January. Finally, in early February, my co-worker (an RN) asked the doctor if he believed this treatment would work. Would it cure her mom? He said, “No, but he wanted to do everything he could for the patient.” Almost immediately, the patient’s daughter decided to have some difficult conversations with her mom. She asked her, “Do you want to stay in the hospital and try these curative treatments or do you want to come home and receive comfort care and support?” Her mom chose to go home. She died a few weeks later. The story was told to me with a great deal of emotion. Losing her mother was sad, but missing out on those crucial weeks while her mom was in the hospital felt tragic. I was told, “No one knew if my mom would choose curative treatment at the hospital or comfort care at home, but what really mattered is she had a choice, and that was significant.” Before her daughter’s intervention, the patient had not been informed about all of her options. If she did not have a daughter familiar with multiple health care options, she might have continued with aggressive treatments until she died in the hospital. Her story is a very common one. 
    
Most polls show that around 65% of Americans want to be taken care of at home when or if they have a serious illness, and the same number want to eventually die at home. The reality is this happens around 43% of the time. Those numbers reflect a huge gap between what people want and what people are receiving. So what can be done? Most people are familiar with the hospice concept. However, most people are not familiar with palliative care. Palliative Care means “relieving pain or alleviating a problem without dealing with the underlying cause.” Hospice care is a type of palliative care. Hospice is end-of-life palliative. Today, a trend is growing in health care and society. Palliative care (pain and symptom management) is working parallel with curative treatment. For someone like my co-worker’s mother (and the millions like her), she would not have to choose BETWEEN curative and palliative, but have both. Specialists can do their best to cure the cancer or treat the heart failure while palliative professionals expertly treat the pain, anxiety, and other problems these advanced diseases cause while communicating the realities of treatment to patient and family. 

The figure below helps communicate the changes that are coming in health care. Notice the Palliative Care starting in conjunction with the “Life-Prolonging Care”. Palliative Care generally increases over time as the advanced illness progresses. Eventually palliative care shifts into hospice or end-of-life palliative. 

Unfortunately, there is a very real gap in our health care system. Many people with advanced, chronic illnesses (especially the elderly and handicap) are caught in a vicious cycle. In the “old” system they have no choice but to receive curative treatment until they qualify for hospice (a terminal six-month terminal diagnosis). What if the patient needs quality pain and symptom management WHILE receiving curative treatment? Well, you can’t currently do that while in hospice. Today, it’s either hospice or curative. What if you are nearing the end of your curative treatments, but you do not qualify for hospice? What fills that gap for the chronically ill who are not considered six months terminally ill? Obviously, I believe the answer is highly funded, quality palliative programs which work collectively with local hospitals, home health agencies, hospices, family physicians, and other healthcare providers.  
   
 The bad news is there is no formal structure that receives reimbursements from Medicare/Medicaid to provide this crucial type of care. The good news is that is all changing. Pioneers in Florida, California, and other states (soon to be Oklahoma...specifically Norman!) have started Palliative Programs without any outside funding. I know of groups who have lost money doing this. Over and over I have heard them say they “are not providing palliative care for financial reasons, but it is the best thing to do for our community, and that’s what matters.” They are right. The reality that people have to choose between curative AND palliative care is mind-blowing; the current health care gap that exists for those with advanced illnesses is tragic. In twenty years this will seem absurd to society, but for us to get there, changes will need to be made today. 

A Night of Remembrance...

Was a night to remember.

We are so happy to say that the Night of Remembrance event was amazing. We had a few attendees come up to staff at the end of the night to thank us for providing them with an event specifically designed for honoring loved ones, which was exactly our intended goal for the Night of Remembrance.

Everyone who attended understood that the Night of Remembrance wasn't meant to dissipate our emotions for lost loved ones around the holidays, but instead to provide a place for them remember their loved ones in a controlled environment. There, they were able to decide how they wanted to remember the ones they lost, whether it was through laughing, crying or simply through moments of silence and reflection.

The volunteer trio played beautiful Christmas tunes throughout the event. As well, our Heavenly trio made their amazing debut with a phenomenal rendition of Amazing Grace.

Our part of the event was the 4-candle lighting ceremony. Billy Mitchell led the attendees through the ceremony by lighting one candle for grief, one for courage, one for memories, and the last for our love. After this, we all lit our own candles for the loved ones that we each have lost. The light is still there, but the love is not gone.

The Gift

Question: What does a home health and hospice company have to do with school supplies?

Answer: If the company happens to be TrueVine Healthcare Services, the answer is: Plenty!

 

It will probably make more sense if I give you a little background. As a social worker for hospice, I am frequently involved in our patient's (and their family's) struggles outside of their normal health care needs. Many have heard of home health and hospice services like wound care, lab draws, physical therapy, diabetes management, and pain and comfort control. But what happens when nurses and aides notice their patient "just isn't herself today", yet she tells them "Oh, everything's fine"?


Our nurses and aides have a special "sixth sense". I see it all the time. They develop relationships with their patients differently than those in other health care settings. So, when Mrs. Jones says "Everything's fine, Dear," they know when she means it, and when she really does not—she just doesn't want to burden anyone.


Such is the case when my colleague (Cynthia), an impassioned nurse, made a routine home visit to a patient on a routine day. She noticed Lettie (not her real name) just wasn't herself. And as Lettie routinely does, she denied any problems or concerns, because she certainly wasn't going to add any more medicines to the dozens she was already taking. Because Lettie had learned if you express concern, you usually get a pill added to your med box!


But Cynthia changed this visit from ordinary to extraordinary, simply because she cared and listened to what her patient was NOT saying. She knew Lettie was the primary breadwinner for her household, even though she was on a fixed income. Lettie literally lives for her grandchildren and great-grandchildren, four of whom live with her. Instead of charting Lettie's vital signs, medicines, oxygen levels, and then moving on to her next patient, Cynthia sat down to lend an ear.


What she learned was that Lettie's great-grandchildren didn't want to go to school this year. They weren't excited like grade school and high school freshmen usually are. Lettie even heard her great-granddaughter threaten to "just drop out" to her mother a few nights before. Lettie was losing sleep and constantly worrying, which is what Cynthia's sixth sense picked up. It turns out that Lettie's granddaughter didn't have the resources to buy her kids school supplies, much less any new school clothes. Everyone knows how imperative these are these days, and in a small school where everyone knows everyone, the problem is multiplied. A student isn't able to just hide or "get lost in the crowd".


After sharing with Lettie that she would look into options or community agencies that might be able to help, Cynthia returned to the office. She asked if I had some time to talk about one of our patients. And then she told me Lettie's story. Remember, Cynthia is impassioned, and caring for her patient meant more than vital signs and medications. She knows a person's health, and that well-being comes from so many things surrounding them. She knows hearts can break from things other than clogged arteries. She also knows the company she works for believes and feels the same way.


We talked about the TrueVine Family Foundation Grant Program. This is a grant program managed by the TrueVine board, and its purpose is simply to help others in need. This program is funded by donations from previous family members of patients, friends, etc. TrueVine knows when people are very ill, they and their families often have very little energy leftover, and so they made the application user-friendly and undemanding-- no copies of three years' worth of tax returns, bank statements, or income verification. Tell them who you are, and what you need. The maximum grant won't buy you a car, but, it turns out, it will buy you school supplies and clothes!
And so it was. Cynthia and I completed the application for Lettie's great-grandchildren (the two that were returning to school). We felt very lucky the board was meeting the Monday before school was starting! Soon, we received word: our grant was approved! I almost felt as though it had been approved for me because I knew it was going to be the key for Lettie's great-grandchildren staying in school, and that was an awesome feeling! I couldn't wait to drive down to Lettie's home, and tell them. I had to use my cruise control because I knew I would speed otherwise!


By chance, when I arrived at my patient's home, her granddaughter and great granddaughter (the one threatening to drop out of school) were there with Lettie. I walked in as I usually do, and usually, her great granddaughter slips away to a back room (a typical teenage response), and she did this time as well. I explained to Lettie and her granddaughter that Cynthia had shared some with me about their current dilemma, being in need of school supplies and clothes. I presented the grant award to them, in the form of gift cards to a major department store. 


I could almost see a burden lift from Lettie's face as a familiar smile returned. Lettie's granddaughter is a tough woman, much like her grandmother, but she accidentally let a tear fall. She was going to be able to send her kids to school, and they would be just like everyone else. They wouldn't be embarrassed or ashamed. Her daughter wouldn't feel like dropping out of school to avoid being made fun of. But, the most unexpected thing happened next. The great-granddaughter came out of the back room. For the first time. Normally, she walks with her head down, her long hair covering her face. This time, she was smiling, I could see her face, and she spoke to me, and said, "Thank you." That was more than enough return for me! We talked just a few minutes longer before Lettie's great granddaughter had talked her mother into going right then and there to the store, and they were off! Lettie's other great granddaughter had her shopping spree the next day, and I was told that it was just as exciting as the first!


I share this story with others because the small acts of kindness we do for others matter. Our nurse could have charted vital signs, medications, etc., and gone on her way. Instead, she took the time to notice, and to care. It wasn't our patient who needed the school supplies, but it may as well have been. Cynthia knew Lettie worrying about her family wasn't good for her health. She knew there were other interventions besides pills or bandages that can help our patients and their families. TrueVine knows this too, and they continue to help other Letties, because the small acts of kindness we do for others matter.

 

Mary Henslee, LCSW                                                                                                          
TrueVine Healthcare Services
Heavenly Hospice Social Worker

A Force of Nature

When my father passed away at the age of sixty-three, he and my mother lived in Ardmore where they had made a happy home. A few years after his death, my mother decided to move to Oklahoma City so she could be closer to my sister and I. She was a very active lady at the time and we enjoyed many fun adventures together. You see, she was a sort of "force of nature." Everything interested her; golfing, fishing, OU Football, quirky road trips and eating at fun places. She was my best and most fun friend during those years.
 
As the years wore on, things began to change. My fun, active mom was getting older and her body began to wear out. The caregiving really began for me after her first major back surgery. She had stenosis of the spine and this really limited her activities. Over time, the caregiving became constant. This was hard because I am a teacher and work a full time and a part time teaching job. I became too busy, too stressed, too tired, and too sad... yes, sad. I was watching my best friend slowly slip away and our roles were changing.
 
It was about this time that I made a pledge to myself, to dig my heels in and take care of her until the end. I was lucky that she was still determined, fun and active in her mind. I have never regretted my decision to stick by her and be there for her until God took over. Although towards the end, when care taking became harder, there were times I thought "I can't do this anymore," but I did because God gives us strength and angels. Do not be afraid to ask for help! Hospice stepped in with their band of angels and helped me fulfill this pledge to my mother. They enriched her life and supported me through a really tough time. They are forever in my heart and hers, I am sure.
 
I will never regret the years I devoted to her caregiving, no matter the sacrifice. However, there are a few things you must remember:
 
1. All of us go through this if our parents live long enough.
2. Don't go through it alone, ask for help, find out more about hospice care and use it if possible.
3. This situation does not last forever. There will come a day when your loved one is at peace. It is okay to be relieved.
4. Take care of yourself. Go to a movie or out to dinner with friends when you can.
5. You will never regret your commitment when they are gone. You will truly have honored your parent.
 

Sally Ritter
 
I wish everyone the best of luck on your journey. I know it is a tough one. Take care and God Bless.

American Pharmacists Month

October is American Pharmacists Month, designated as a reminder that you can and should talk with your pharmacist about your own medications. Since TrueVine Healthcare has worked closely with locally-owned Comfort Care Pharmacy, we invited Tina Yoon Joo Lee, PharmD, CGP to be in the spotlight and educate us on her career.

Tina: Comfort Care is a locally owned pharmacy dedicated to serving hospice patients. Our pharmacy staff works closely with hospice nurses and physicians to ensure the best care is provided to our patients. Our pharmacists provide consultations on pharmacologic and pharmacoeconomic choices to manage end of life symptoms on a daily basis, while also ensuring that medications are dispensed accurately. Compounded medications are readily available to meet patients’ individual needs.

TV: Please explain how Comfort Care Pharmacy differs from a regular retail pharmacy.

Tina: We are a closed-door pharmacy, so there is no public access. Pharmacy laws are also different for hospice pharmacies. Since there is no public access, our friendly drivers deliver medications out to patients’ homes, nursing homes or any other place of residence on a daily basis. Our pharmacists and drivers also work on call after hours to provide 24-hour care.

TV: We appreciate your caring and dedicated delivery staff. Now, how did you personally become interested in a career in pharmacy?

Tina: My major in college was botany. When I learned about biodiversity and drug discovery from natural products, I found myself researching careers in the pharmaceutical sciences. While my interests stemmed from studying drugs on the molecular level, I also really enjoyed being involved in our community by serving people and volunteering. I always knew I would pursue a career in the health field. By combining my interests in plant chemistry, health, and serving our community, I decided on a career in the profession of pharmacy.

TV: And we’re glad you did! What’s your favorite thing to do when not working?

Tina: I enjoy spending time with my family and my puppy. I try to stay active by playing golf and rock climbing when the weather permits. I have also subscribed to a meal-prep service, which has provided me with an opportunity to cook more (and to learn how to cook!)

TV: Thank you so much Tina and Comfort Care Pharmacy for the professionalism you offer our hospice staff, patients and families.

The Angel Within

“I remember the day I realized something was wrong,” recalls Lisa. “We were going for a walk. Mom had a beautiful house, lots of flowers; we’d take walks in her neighborhood. On this particular walk, she pointed out her own place and said, “Now isn’t that a gorgeous home. Look at those flowers.”  I said, ‘You know that’s your house, right, Mom?’ and of course she played it off beautifully and acted as if she knew.”

We sit across from each other with a box of Kleenex between us. I have asked for her time, asked to interview this willing, busy woman with a fast-paced job and teenager, to share about her experience caring for her mom who has Alzheimer’s.  As Lisa begins to speak, I know I’m not supposed to cry and rob her of her own grief, but at times my own eyes swell with tears too. Lisa is strong though and really involved with her mom’s care. She speaks openly and candidly about the best and the worst. For her, there are two really difficult (scary even) parts. One is the hurt she feels when she sees those with the disease lose their voice to speak up for themselves — For their rights, for their past, their memories, their voice for reminding someone not to use the vanilla hand soap on her hair but to take the time to use shampoo. Also to not dress her in a sweater with a hole in it because Rosie was an immaculately dressed and groomed woman. Lisa also mourns the sweet, dear mom Rosie she used to be while relearning with each visit, the sweet dear person she still is.

Lisa tells me she has found ways to enjoy her mom and her mom’s life as it changes with the disease. She visits as often as she can and spends time updating her dad on her mom’s condition and needs. She is deeply involved with the detailed care that makes up human living: nutrition, personal hygiene, dressing, socializing, doctor’s appointments, missing hearing aids. The list grows every day too. One of the enjoyable parts is that during visits to her mom’s living center, she has befriended the group of men and women who also live, share meals, joys and sorrows and interact there. They have become something of a family, a trusting circle together. They share jokes and games.  She knows pulling out colorful magazines can engage their interest; she knows some of their likes and dislikes almost as much as her mom’s.

A moment of extreme grace came to Lisa one day when she was leaving her mom. There was much guilt attached to taking her mom to the Alzheimer’s Unit, but she knew it had to be. Lisa would usually feel terrible when it was time to go home. On this particular departure, she realized that in a few minutes her mom would not miss her. She wouldn’t wonder why she had left her, where she was going, or when she was coming back. Rosie would go back to her regular routine as if Lisa had not been there and left. To an outsider, this may seem sad, but at this moment and from now on, it became a shining halo of light and hope for Lisa. Lisa had always referred to Alzheimer’s as “the demon;" that was easy to see, but now she had found the “angel” in Alzheimer’s. 

 

Tips I learned from Lisa

It’s dangerous thinking to keep saying, “Well, not yet . . . not yet”.  Lisa explained that it’s wise to plan sooner, though denial of disease progression is what most of us would do. Once her mother was diagnosed with Alzheimer’s, Lisa’s dad continued to care for his wife for five years. Although they did get on a waiting list for an Alzheimer’s Unit, they did very little else in the way of advanced planning.  Once Rosie’s name came up, they had less than a week to pay deposits, find furniture, and dramatically change the way of life for a woman who had been independent for over 80 years. 

Make an appointment to visit Alzheimer’s/Memory Care units but also be sure to drop in unexpectedly possibly after your appointment to see if things are really as discussed during your appointment time. “Often it is quite staged for your appointment, as I sadly found out.”

Hire a private duty, sitter/companion (even if it’s just for a few hours a week) to support the full-time living facility care. “The hundreds of dollars are really small when considering the thousands paid to the Alzheimer’s Unit,” she reminds us. “This person becomes the eyes and ears for your loved ones and even for other residents.  I was probably their worst nightmare when my mom first moved in there, but I wanted her needs to be recognized. Each person living there is someone’s mother, someone’s sister and I will remind the caregivers of it when I need to.”

Learn A support group and/or class on caring for someone with Alzheimer’s, learning about clinical trials, etc. might have been really beneficial to Lisa in the earlier days, she agrees.“I have researched a lot, listened to the doctors, experienced so much,” she explains. “You reach a point with ‘education’ that you just don’t want to hear anymore. You just want to enjoy. I just want to enjoy being with her.”

The “don’t sweat the small stuff motto”-- it’s real!  “You know how we go through life racing: work, kids, and we don’t make the time to have lunch with our mom?” Lisa’s advice is, “Have lunch with mom” or your daughter or friend, or take that drive or trip with your dad. You’re not going to regret those times.

Set the scene for leaving With Rosie it seems it’s better not to tip-toe around things. She still appreciates the honesty, but Lisa can’t always be completely honest of course. “You have to pick your battles. If I’m leaving I’ll say,’ Ok, Mom I have to go, but I’ll be back tomorrow.’  But if she says that she had lunch with my father (which I know did not happen) or visited with friends who’ve long passed away, I just agree.” People suffering from Alzheimer’s often say they want to “go home” even if they are home and they may mean to a place, a time, with people they remember and feel comfortable with. 

See the “Angel” (and the comical side of things) “She still recognizes me.” She has trouble with some of the other family members sometimes. “When my mom sees my dad she might say, “You are SO GOOD LOOKIN’!” You just have to see the humor in things like that. Lisa says that she just has to check in with herself, every day. It’s a day to day thing. 

Julie Myers

Reflections on Remembrance by the River

This is an update to our July 9th post. Now with video.

Things never seem to go as planned. A team of us from the hospice have been planning our annual Remembrance by the River for the last four months. We planned what flowers were to be used for the ceremony, arranged for musicians to come, organized the service, sent out invitations, and even coordinated what we were going to wear. And then I woke up Saturday morning to a sky full of rain clouds. It wasn’t raining, but the threat was real. What were we going to do if the rain poured and washed out our outdoor event?

I arrived at the Chesapeake Finish Line Tower about an hour before the event. It wasn’t raining, but I quickly saw we had another issue. The deck we were using for our ceremony was crowded with kayakers. I couldn’t help but laugh because at last year’s event there wasn’t a cloud in the sky and there was also no one on the water. Last year it was as if the entire river was reserved for our ceremony. This year, however, it looked like the entire city of OKC came out to row in the rain. 

As the service began at 9am the rain started on us. Fortunately, it never turned into anything more than a very light drizzle. During the service two thoughts kept coming to my mind. First was “uncertainty” and the other was “life”.

All week long we were watching the weather and unsure as to whether we were going to have to cancel or move the event. We know some people missed the event because of that uncertainty. During the program I just thought “isn’t this how life is? We can plan and plan and have everything laid out perfectly, but surprises always seem to show up.” Those attending the event were there because of life’s uncertainty. Plans had been made and then changed. And now here we were trying to wrap our minds around those unexpected changes. 

So why was I thinking so much about life? This event was centered on one thing and that was to give space for hospice staff and the bereaved to pause and remember patients and loved ones. In the middle of this space life was happening all around us. The world did not stop because we were there to have this ceremony. People who wanted to enjoy the river still came to the river. People who wanted to row still came and rowed. I can’t think of a better metaphor for what it feels like right after a loss than the army of kayakers doing their thing in the mist of our Remembrance. As much as it feels like the world has stopped spinning, it hasn’t. Even though we want it to, it doesn’t. But for me, coming together and reflecting with others like this helps me focus on life a bit more and helps me embrace some of the uncertainty that will undoubtedly come. 

What Really Happens at a Death Café?

 

Friday, July 24th, I attended my first Death Café. I have been hearing about them for a while, but have not had the opportunity to attend until now. For me, the idea was very intriguing; Gather a group of people who are willing to have an actual conversation about death while you throw in some hot tea and a chocolate fountain. The purpose and tone (as far as I see it anyway) is not to focus on the macabre, but on the undeniable reality everyone must face at some point. For those unfamiliar with this global movement, please check out their website for information about the history, events, pioneers, and future plans. 

So, how was my first Death Café? When I spent some time reflecting on my experience, a quote by Aaron Wolfe came to mind. “Sometimes you just have to say, ‘Hello, death, nice to see you again!’" You might wonder why such an exclamatory quote. But as we all sat around a table, eating way too much chocolate and discussing the topic of death, I felt a light-hearted freedom shared between all of us in attendance. While some of were relatives, co-workers and acquaintances, others were meeting for the very first time. And yet, I was amazed at how openly and casually people spoke about the death of loved ones, their own funeral plans, and a number of other intimate topics. I appreciated that there was no formal itinerary but a free flowing conversation in which everyone willingly participated.

One of the great surprises about Friday night was how much laughter filled the room. This is not because we kept the conversation light and fluffy. As I mentioned earlier we delved into some pretty heavy discussion. I can’t help but think that even though the topic was serious in nature, the people involved felt a release and possibly even a sense of joy to finally be able to talk about such a taboo topic. 

What continues to resonate with me almost a week later is the notion that death is a thought bouncing around most of our heads at various times throughout the week. What happens when these thoughts are just locked in our own minds and are never given the opportunity to be expressed and allowed to run free? It makes us scared; it creates anxiety and frustration within us. Being able to ask the questions we’ve all been wanting to ask and to say the “not in polite company” things we’ve been wanting to say in a safe place helps to ease a lot of those fears and anxieties. That is my biggest takeaway from my first Death Café event; a lot of joy and laughter can be experienced over sharing some chocolate and engaging in a conversation that many in society are afraid to have.

 

National Parents Day

Did you know that July 26th is National Parents Day? Many Americans don’t know this holiday exists, but we believe this is a day that deserves celebration. National Parents’ Day was established in 1994 and takes place on the fourth Sunday of July. It is a day that recognizes and encourages the role parents play in raising our nation’s children. This day applauds the selflessness and love that parents provide for their children throughout their lives. Here at TrueVine we are excited to celebrate this day because many patients within our care are beloved parents. What an opportunity for children to selflessly love on and care for their parents in return for all of those years.


Here are some helpful links for more information:


Knowing When to Give In or Take Over With Aging Parents
http://www.aarp.org/home-family/caregiving/info-2015/independent-assisted-living-caregivers.html

10 Tips for Handling Stress as a caregiver
http://www.aarp.org/relationships/caregiving/info-06-2010/crc-10-caregiver-stress-managment-tips.html

5 Tips to Create a Caregiving Team
http://www.aarp.org/relationships/caregiving-resource-center/info-12-2011/set-up-caregiving-team.html

Checkin’ up on the “men of steel”

As June continues and Father’s Day grows near, many of us may have fathers on our minds. The one thing we wish for every dad is to remain healthy and active so that they, and we, are able to enjoy many more Father’s Days ahead. This is what’s prompted us to take a look at one problem that some men face throughout their lives... taking the time to have “well visits” or checkups from the doctor before serious health problems arise.


When it comes to men heading to the doctor there’s sometimes one major problem with their psyche: they have to admit they aren’t Superman. Some men don’t want to admit that there’s something wrong. They have to be strong and sturdy and “masculine.” In doing this, they may miss out on essential checkups that could save them grief in the future, or even save their lives. This Superman concept pushes some to think that they can manage with whatever is ailing them, or what could ail them in the future, instead of getting checked out. 


With National Men’s Health Week (June 15th-21st) approaching just as quickly as Father’s Day itself, don’t let the men in your life procrastinate going to the doctor; just as you might while trying to find a last minute gift. Okay, so he’s going to get another neck tie. It’s from you; he’ll love it! Take care of your health and of the men in your life this holiday. Give us a call at 405-253-4413 for more information on how home health care might be appropriate for an individual in your life.

Good Grief?

Over the years I’ve heard three predominant thoughts on the value of grief. One is that grief is bad and unnecessary to the human experience. This is not taught from an expert or clinical standpoint, but more from the everyday, practical view...