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An Optimistic Update: Katie’s Story, Part Twenty

OptimismFor the first time, I am reporting to you with a sense of confidence.

The problem with funding has been rectified.  The only major item remaining to be acquired is the shower wheelchair.

The change of caregivers has taken place. “Faith” started last Sunday, and already she is a comfortable part of the family.  Faith is a take charge individual.  She sends Sam out of the room when she performs Katie’s personal care.  Moreover, she is a task-master with Katie’s exercises.  This is important since Katie has lost a lot of her inherent drive.

Faith Building BlocksThe experience with Grace was an opportunity to learn and a sturdy building block for a successful experience with Faith.   Sam has learned that he can step back and let Faith do her job—he is in fact, eager to do so.  It is obvious that Sam is relaxing as stress decreases.

Faith stones

With Faith, I hope to believe:

THIS PLAN WILL SUCCEED!

Success ahead

Katie Comes Home: Katie’s Story, Part Thirteen

House One

The EMS transport was scheduled to arrive on Monday, December 15th at 2:00, which was just about the time I got there. Entering her room (thankfully for the last time) I encountered Katie; her husband, Sam; their son; the Provider RN; and the Caregiver, Gloria. The room was emptied of Katie’s belongings. A nursing home nurse was reviewing medications with Sam and finalizing paperwork. Other staff kept popping in the room to say goodbye and give Katie a hug. They all said they would miss her, but were glad she was going home. Typically, we had hurried up to wait—as the transport showed up at 3:00.Ambulance

 

Welcome HomeOnce Katie was loaded in, it was a 15 minute drive to her home. She was greeted by a welcoming committee—ladies from next door and across the street. The neighborhood group goes back for decades. Everyone was thrilled to see Katie come home.

Equipment that was expected Friday wasn’t delivered until Monday morning, so Katie’s room was in a minor state of disarray. Katie wanted to get into her new electric hospital bed, which required Sam and Gloria to use the new electric Hoyer lift. Sam was eager to demonstrate how to use the lift; Gloria was eager to step right it and do her job; and together the first transfer was a success.

The Provider arrived and began to help Sam with setting up medications; she and the Provider RN will be visiting frequently, especially early on. Tomorrow, the home health company services are to begin. Home modifications (flooring, wheelchair accessible shower, and ramps) will be started soon. So—there will be a steady stream of people coming and going for the foreseeable future. Dancing Heart

 

GearsThere’s a big learning curve and a significant level of stress to be expected. But with this terrific care plan in place and with the support of everyone on KATIE’S TEAM, I am encouraged that everything will work out—eventually functioning like a well-oiled machine.

Most importantly, Katie is happier than I have seen her for the past two years, and she is setting goals. “I hope to be walking by summer,” she said. WOAH Lady! One step at a time.  But it’s great because—

Walking

KATIE IS SETTING GOALS!

 

It never goes away and it has made me who I am.

NorthernMSW: Advocacy, Aging, Healthcare & Social Work Issues…..

Grief in Children

03Oct

Grief in Children Rea L. Ginsberg, LCSW-C, ACSW, BCD- Guest Blogger

Child hands

The above post struck me to my core–and this is why:

Nearly sixty years. It never goes away.  It formed who I became.  In the late 50’s and early 60’s my father’s lymphoma was a “secret” that only his wife and children knew.  After informing her 11 and 15 year old children that their father had a fatal illness, our mother rarely spoke to us about it—except, for an example, in retort to my question, “Can we have another baby?”  “You know your father is going to die!”  Bottling up became so profoundly painful, that both my brother and I became outspoken adults.  For me, that doesn’t always have good results, but it is better than the alternative.  The writing of my book, “What to Do about Mama?” and my blog of the same name, have brought my formative years into even greater focus.  This article has made me wonder how I made it through adulthood without more “pathological developmental distortion or arrest.”  Also see my blog post for more on the topic of grief:  Different Perspectives on Grief

Here are some excerpts that really hit home:

  • It seems senseless to debate which types of grief are the worst.  Which are the hardest to bear.  Every form hurts so very far beyond normal limits, beyond ordinary words.  Profound sadness.  It takes our breath away.  It aches that much.  Every form requires extraordinary coping skills.  Every form holds its hazards.  However, this childhood form does appear to be among the very worst.
  • Only in childhood can death deprive an individual of so much opportunity to love and be loved and face him with so difficult a task of adaptation….The death of a parent engenders a longing of incomparable amount, intensity, and longevity.”
  • The child’s loss of a parent is one of the most difficult forms of bereavement.
  • Recovery is arduous, exhausting, and hard to accomplish.  The death of a parent is life-altering on a permanent basis.  It is a severe emotional wound.  It is traumatic.
  • “Although we know that, after such a loss, acute mourning will subside, we also know that a part of us shall remain inconsolable and never find a substitute.  No matter what we believe may fill the gap…we will nevertheless remain changed forever…”
  • From their many experiences with children, child psychotherapists tend to agree that the child’s mourning process never does entirely end, nor should it.  The mental representation of the lost loved one, the memories and an accompanying degree of longing, remain with the child through childhood and adulthood – throughout his lifetime.
  • The child is indeed bereaved, but he himself is in need of a caregiver.
  • This troublesome outlook for the child can be mitigated by the understanding and compassionate presence of the other parent or another adult.  Even an older sibling can soften the hardship.  Someone must be there to receive and relieve the child’s distress.  The child cannot be left alone to cope with loss and still remain healthy – both in mind and in body.  Sorrow must be shared.  Every person needs to know he is not alone with grief.  The child is especially vulnerable and needy in this respect.
  • Children draw great strength from their caregivers.  The child needs the love and gentle guidance of a perceptive, patient, and capable caregiver.
  • We know from those studies that children were least traumatized when the primary caregiver – usually but not always the mother – remained close, loving, calming, and comforting.  Children’s reactions to loss depend mainly on the reactions of the primary caregiver.
  • The interaction between internal and external forces decides between the possibility of normal developmental progress and the incidence of pathological developmental distortion or arrest.”
  • If the child’s caregiver is the other parent, we have come full circle, returning to the bereaved caregiver.  Grief is not optional.   The caregiver must attend to his own grief and to the grief of his child.  Perhaps, in some important sense, parent and child comfort, soothe, and reassure each other.  They support one another.  The feeling of deep sorrow is shared.  The process and progress of the caregiver’s bereavement is then highly significant not only for himself but also for his child.  The child’s mastery of his situation depends substantially on the caregiver.  It is a large responsibility. Honesty and openness are virtually always good policy with children.  The subject of death will carefully follow this pathway – when the caregiver is strong enough and wise enough to pursue it.  He will know intuitively how to listen well and respond to the child’s expressions of grief.
  • No hurry to heal.  No pressure to “snap out of it.”  Honesty and openness.  Love.  Memory.  A firm, soothing hand to hold.  Talking.  It takes only one human being who cares.  That is the route to strength and growth.

Missing Childhood: The Overlooked Caregivers

Caring for Grandma

Caring for Grandma

From AgingCare.com @ http://www.agingcare.com/

Home » Blog » Life as a Caregiver » Articles » The Overlooked Caregivers No One Ever Talks…

The Overlooked Caregivers No One Ever Talks About
by Connie Siskowski, Blogger President, American Assoc. for Caregiving Youth

Although it was more than five decades ago, the memories of caring for my grandfather as a pre-teen—giving him medication, even bathing him—are never far from my mind. To this day, 54 years later, I can still feel his cold skin as I went to give him his 2:00 am medication.

At that time, words like “abandonment” and “trauma” were not often used to describe childhood experiences.

I left home to become a nurse and grew professionally in my career. However, the traumatic experiences of caregiving and missing out on some of my childhood left me less than grounded.

In 1998, at the First International Conference on Caregiving in London, I learned about the challenges faced by youth caregivers and began to understand the significance of those experiences.

That summer, I went on a mission trip with teens from my church—one boy’s dad had recently died and another girl’s dad had pancreatic cancer. Many of the other kids also had concerns about their parents and grandparents’ health.

In 2001, my new husband, encouraged me to return to school to get my PhD, thinking it would increase my earning power. During the research process, I discovered that there was—for the first time in the U.S.—an unusually high number of middle and high school students who were dealing with family health conditions. More than a third of these children were negatively impacted at school. A few more years would pass, and the data (along with some media attention) revealed that there were between 1.3-1.4 million caregivers, ages 8-18 years old in the US.

In 1998, I had started a nonprofit organization to provide volunteer support services to people who were homebound and their caregiving families. Once the analysis of my research data was complete, I was compelled to now turn my attention to youth caregivers. I thought that, supporting them academically and personally, and strengthening their families, could perhaps ameliorate the sacrifices they were making because of their caregiving responsibilities.

Thus, the Caregiving Youth Project was born in the fall of 2006, at one middle school in Boca Raton, FL. Professional staff facilitate support groups, offer classes on life skills, and provide other resources to ease some of the responsibility and give youth caregivers the chance to be kids.

Over the coming months, I will be sharing with you the experiences and insights of these school-aged caregivers and the men and women who help support them in their endeavors.

Barb’s comment:

I really identify with Connie’s comment, “The traumatic experiences of caregiving and missing out on some of my childhood left me less than grounded,” although in my case, I would have to change the word “caregiving” to, “having a dying parent.”

When at a Caregiving Conference a few years back, I attended a hospice workshop.  A comment was made about the support systems available to children.  When that statement was made, I found myself suddenly in tears.  Oh…if they would only have had something like that when I was a kid!

Like you, Connie,  I grew up during the 50’s and 60’s.  When my father was diagnosed with non-Hodgkins lymphoma, the doctor recommended that he not be told that he had a fatal disease.  My mother did tell my brother and me (15 and 10, respectively), and we were instructed not to tell anyone.  It was a “secret” that was never discussed.  Yes, it was traumatic, and I absolutely felt abandoned.

Thank you for focusing your attention on the children and their needs.  Thank you for helping them maintain their childhood so they do not have to “miss out” on those years as did you and I.

Advocacy

Visit AgingCare.com @ http://www.agingcare.com
Home » Caregiver Support » Emotional Wellbeing » Questions » How to advocate for a loved one’s needs in

How to advocate for a loved one’s needs in a positive way?  advocating

rosie1 reports that her mother, who has dementia, is being transitioned into a nursing home full time. The director of the facility made the “suggestion” that the family is too “high maintenance.”  Because Rosie’s brother reported the remark to Rosie, she is examining her own behaviors and questioning why she may give the impression of being over-bearing.  She asks how she can build a positive relationship while continuing to advocate for her mother.

My response:

Advocacy is an important part of your responsibilities as a caregiver.  It’s a matter of striking the proper balance.  I have had experience as a caregiver advocate, and I write about the topic in my book, “What to Do about Mama?”

When my mother-in-law was in a nursing home for rehabilitation after a pelvic fracture, she would press her call button when she had to use the bathroom. (She had not yet been cleared to go to the bathroom alone.)  She would then wait and wait and wait, until she could wait no longer, and would then have to urinate or have a bowel movement in her diaper.

I spoke to the social worker about the issue and was told that my mother-in-law was so “quiet.”  My point exactly.  When a “quiet” person rings the bell because she has to go—you can count on the fact that she has to go.  Why should a mentally competent and continent woman have to suffer the degradation of soiling themselves?  I was told she would be put on a 15-minute watch, but I replied that was hardly necessary.  She just needed to be helped in a timely fashion when she pressed her call button to go to the bathroom (something she did not do often).

The need to be an advocate is not necessarily a criticism of the facility where a parent is placed.  It’s just that it is easy for something to slip by or for mistakes to be made, and caregivers must be on guard to prevent problems, misunderstandings, and omissions. To be an effective advocate, you need to educate yourself about different aspects of caregiving, health, care plans, and medication.

One helpful tool is to develop a personal profile to be posted in your loved one’s room that provides information about his or her personality, preferences, and interests.  (It’s a nice touch to include a picture.)  This gives staff more understanding of their charge as an individual and provides topics for conversation.  Personal Profiles personalize the individual to staff and are also great conversation starters.

Also, when placing your loved one in any type of living facility, get to know the staff and establish a positive relationship with them. No matter how good the facility is, there will be situations that require your advocacy. The better the relationship you have established, the better the cooperation you will (hopefully) find.

As one of the caregiver’s stated in my book:  “I found that my primary role, once my father was admitted to the nursing home, was to model the behavior my mother and I expected of the staff when we were not there.  By that I mean how we spoke with him, how we honored his requests and anticipated his needs, how we treated him with a great measure of kindness and love, respect and dignity. It didn’t take the staff long (all three shifts) to grow to love him and treat him as well as we did every time we were there.  It also helped that we recognized the hard work the nursing staff did every minute of their shifts by taking over for them with my father or by bringing them little treats from time to time. Always, every night before we left, we thanked them for their care of him.”

Barbara Matthews

When Parent-Child Lines become Fuzzy

Click on the Patriot-News link below to see a Doonesbury cartoon about role reversals:
– The Patriot-News.

A response to an AgingCare.com article:
http://www.agingcare.com  Home>>Caregiver Support>>Family & Relationships>>Articles>>Switching Roles:  Coping with Your Rebellious Aging Parent.

When I was an Assessor for the Area Agency on Aging I often met with senior women and their daughters.  When I directed a question to the senior, it was not uncommon to hear the response, “Ask my mother here,” while indicating her daughter.  Clearly they were referring to the issue of “role reversal,” which can be petty doggone tricky to navigate.

In the AgingCare.com article, Switching Roles: Coping with Your Rebellious Aging Parent,

Now who's rebellious?

Now who’s rebellious?

Carolyn Rosenblatt states:  “You can’t just let a parent with signs of dementia or other significant memory problems go on as if nothing were wrong, even if she gets upset with you. At some point, the adult child who loves a parent must step in. You may end up setting limits, making new rules, or taking over certain decisions. This is not easy for most people. We are so accustomed to our parent making her own decisions, that to dare to tell her what to do is very uncomfortable.”

Carolyn is correct that reversing roles with parents is very difficult.  But it is not always clear cut as to when to do so.  When it is determined that you must step in, and the parent-child line becomes fuzzy, it is always important demonstrate respect for everyone’s roles.

An initial question to consider is:  What takes precedence?  Autonomy or safety?  If the senior’s values and wishes are not respected and taken into consideration, you are bound to run into resistance and conflict. After all, who doesn’t want to remain in the driver’s seat of life?

It is imperative to respect your loved one’s dignity—it is, after all, empowering to retain the ability to make choices and decisions. Show respect for your care receivers’ autonomy by seeking opinions and preferences throughout the care-planning process. Promoting as much independence as possible is key.  Furthermore, caregiving responsibilities generally escalate as needs multiply over time. The less able our loved ones become, the greater their sense of independence lost. And as needs escalate, so does conflict.

Two huge problem areas that Carolyn Rosenblatt mentions are driving and financial management.  These are both referred to in “What to Do about Mama?”  For example:

  • When our parents lose their ability to drive they require assistance with transportation, shopping, and running errands. And of course, since driving is synonymous with independence for most seniors, this issue may cause particularly intense conflict. As one son recalled: “When my father insisted that my grandfather stop driving, Grandpa, a generally sweet and mild-mannered gentleman, began to call Dad on the phone to curse him out soundly. I was glad that I never had to confront this issue with my own father!”
     
  • “As my dad began having problems managing the finances, it was difficult to ease him away from the task so I could handle the accounts. Eventually, we worked it out so he would ‘check’ everything I did, which kept him in the loop, but gave me full responsibility for handling bills.”

In my own personal caregiving situation, my husband and I felt that living in the safety of our home would allow his mother to be more independent and active for a longer period of time. We felt that although the first two years of our caregiving arrangement were really quite good, there was always an undercurrent that somehow my mother-in-law perceived me (her primary caregiver) as a threat to her autonomy.

I tried very hard to respect her independence.  I tried to empower her by presenting options and respecting her choices.  But if she perceived me “directing” in any way she felt her independence was threatened and I sensed her resentment.  Ultimately, I felt that most of the escalating friction could be attributed to my role as an in-law caregiver.  Switching roles, or even the perception of switching roles, is indeed difficult.

Caregiver’s Break

A Caring.com article:  http://caring.com/

How to Go on Vacation When Mom Needs You
Tips to Help Caregivers Plan for Time Away
By Melanie Haiken, Caring.com senior editor

You want to get away — everyone does, at one time or another. And with all the responsibilities you shoulder on a day-to-day basis, you need — and deserve — a break. (In fact, if you neglect to take time off to care for yourself, you’re likely to suffer from caregiver burnout, a very real problem.)

But how in the world do you take a vacation when you’re on call and on the spot taking care of Mom or another family member? It’s a dilemma that every caregiver faces, and there’s no question that it’s a tough one. However, there are ways to make sure your loved one is safe and comfortable while you get some much-needed R&R. It starts with determination: You need this, you deserve it, and you can make it happen. Then use these strategies, time-tested by caregivers like you.

  • Prepare her ahead of time.
    As far in advance as possible, start talking to your mother or other family member about your upcoming plans. Explain where you’re going and the reasons for your trip, and how much you’re looking forward to it. After that, frequently tell her how excited you are about your vacation; you might mention details as they develop to help her “see” your plans. Understanding that this is something important to you will help her balance her distress and “buck up” to accept the temporary change.
  • Ask family and friends to pitch in.
    No, it’s not always easy to ask for help, but delegating is one of the secrets to surviving the stress of family caregiving. If you’re worried that your mother or other family member is going to resist help from someone else, take these steps to get her on board.
  • Let Mom have some say-so.
    Talk to your loved one about whom she’d like to spend time with while you’re gone. Knowing the people she feels most comfortable with will help you choose which tasks to delegate to whom. And even if the people your mom requests aren’t available, you’ve given her some say-so, which will help her feel better.
  • Break up the jobs.
    Since these responsibilities are new to your supporters, it’s best not to overwhelm any one person with too much to remember. Make a list of what you do during a typical week, then next to each item list names of people or services who could take on that task. Grocery shopping? Perhaps a neighbor could do that for you. Driving to appointments? Another family member, friend, or member of your church is a good candidate, or you could set up transportation with a senior transport service in your area. Cooking? Premake some meals, then freeze in single portions and enlist a family member, friend, or paid caregiver to help prepare and clean up.
  • Schedule companionship.
    While getting the basics covered is top priority, you’ll also feel better if your mom has some regular visitors planned during your absence. (Does wonders for caregiver guilt, too.) Now would be a great time for that long-distance visit from your second cousin, or for your mother’s church group to take her out to lunch. A few weeks before you leave, spread the word as widely as possible that visitors are needed, and you’ll be surprised what materializes.
  • Hire short-term help.
    Most in-home care agencies can provide you with a personal care assistant for the short term; this is often known as respite care. Using an agency saves you the work of finding, hiring, and training someone, so it’s a great way to go in a pinch. To find an in-home care agency near you, use our In-Home Care Directory.
  • Find respite independent living care.
    You might be surprised to find out how many independent living, assisted living, and continuing care retirement communities in your area offer short-term room-and-board situations, or respite care. Not only does this option offer the ultimate in peace of mind, it also presents an opportunity for your loved one to experience what an independent living or assisted living facility has to offer. To find out which facilities near you have respite care arrangements, call your Area Agency on Aging or use our Assisted Living Directory.

My Comment:

Some thoughts about your article:

I agree that it is vitally important to schedule caregiver respite, and that it is best to plan ahead. Sometimes, however, there are last minute opportunities.

I was fortunate that I had a good friend who would plan a vacation and invite us to go along. She knew my husband and I were not proactive about doing this for ourselves.

Taking a respite vacation requires a lot of preparation.

Caregivers need to accept that respite-care-providers might not do everything exactly the same, and be willing to relinquish control.

On one occasion, when family could not provide respite for a last-minute request, we utilized nursing home respite provided by hospice. I was labeled as “selfish” for doing that. Later, hospice personnel stressed to family that respite is a service the organization provides because caregivers need the opportunity, saying specifically, “The decision for respite care is 100% the caregiver’s call.”

After my caregiving responsibilities ended, my husband and I took a trip. We were driving along when it suddenly dawned on me. “We just walked out of the house!” The sense of freedom was exhilarating.

Freedom is Exhilarating!

Freedom is Exhilarating!

Barbara Matthews

 

 

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