Hospice Caring Not Curing

 

Our Team met a nurse who does occupational nursing on a national network TV station and when speaking to her, Rachel voiced that her passion and purpose was to let the world know the importance of end of life care. We chose to support her by writing this blog.

[i] A recent article this summer discussed that feeding tubes for dementia patients are not as prevalent as before (5% less use) and do not apparently facilitate either comfort or long life.  A doctor for Aging Research at Harvard University underscored that care is not terminated just because a feeding tube might be. 

End of life care is not cure, but rather daily focused treatment that maximize comfort and quality of life.

 

Rachel told us that many people still don’t know this and that they have a certain point of view about end of life care. Her face broke and she welled up with tears  when speaking with us.

She said, “I have seen everything, every kind of death, and there is a way--an easy way really, that gives the patient: comfort, last requests for what is important to them and completion—so that they can die in peace and comfort and  love”.  She went on, “it is really available to everyone and it does not have to be awful the way I have witnessed it so many times”. 

“It is actually quite simple to give someone what they want like to see a garden or to hear  the voice of  their grandson or to hold someones hand”. "For those who  know they are dying, last requests  are usually simple to provide".    

The Mayo Clinic[ii] speaks more about end of life care for people with terminal illness. That hospice care is for people who are nearing the end of life, within six months usually. There are services provided which are solely to maximize comfort by “reducing pain and addressing the physical, psychological, social and spiritual needs” of the individual and the family too.  For families, hospice “provides counseling, respite care for the exhausted caregiver and practical support”

 It is the phrase “care over cure”, that has represented  this end of life, intervention process.  

Hospice care is in effect for a patient as long as the medical team says that the condition is life-limiting.

Types of hospice patients include those with:

  • Cancer
  • Heart disease
  • Dementia
  • Kidney failure
  • And COPD.

It is said that patients on hospice care do better, live better and they live longer.

The burden from the family is eased and hospice prepares the family for grief.

Giving the family or caregiving member a respite is under-emphasized, but very important--someone on our team was told once, you can die too--take care of yourself too!

Hospice is often provided at home (58%), in private residence (35%), nursing homes (14.5%), hospice inpatient facility (31.8%) and acute care hospital (9.3%) as if 2914[iii].  Sometimes a center geared to this, a hospital or nursing home area is designated.  More than half of hospice patients are women and 41.1% of all patients are 85+.

The Team for hospice and palliative care includes many professionals who work directly with the family member or primary caregiver making decisions for the terminally ill individual.  Visits by staff are made regularly and the hospice staff is usually available 24/7.    The team includes:

  • Doctors
  • Nurses
  • Aides
  • Social workers
  • Bereavement therapists
  • Spiritual leaders
  • Physical (lung, etc.), occupational and speech therapists
  • Pharmacists.

 

According to Mayo Clinic, payment is often based on need instead of the ability to pay and Medicare, Medicaid and Department of Veterans Affairs and private insurance pay for hospice care.

 

Some questions Mayo Clinic suggests might be useful when looking into the program available include:

  • Who is the team and is the medical director "palliative and hospice care certified”
  • Is the program Medicare certified and licensed by the state, etc?
  • Is the program for profit?
  • Is the pharmacist on call?
  • What is the afterhours protocol if you need help?
  • What nursing homes and such are connected with the program?

 Transition of life is sad, but it does not have to be unbearable. There are structures in place for support. There is science to back up such choices.

Choose wisely for your family. We know you can and want you to be armed in grief to support the end of life care of your loved one.  Choose to win.  Click for news and alerts  from theTeam on behalf of Robin Quivers 

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Topics: womens health, care-giving, mens health, Practicing Spirituality

How Not To Lose Your Sibling After You Lose Your Parent

Be aware that you do not have to lose your sibling just because you lost your mother or father.

 Here is what you need to know so this does not happen in your family!

 

And for parents: if you choose not to play favorites

with your kids-- they will more likely be friends life-long!

[i]It is usually about 40% of the time, that a single caregiver, usually the sister, feels she is not getting support from her siblings.

This leads to serious conflict.

So instead of having a brother or sister as one of your best friends life-long-- leading to a life of wellness of: mood, physical health, high morale, low stress, low chance of depression and satisfaction.

If you are not happy about your brothers and sisters, the opposite occurs.  

An interesting article in Psychology Today from one year ago[ii], states clearly:.’It can take more than a decade and a fatal cancer diagnosis to have siblings reconnect.’ 

That ‘childhood dynamics’ between the sibs, “have metastasized into toxic resentment.”

And though the number of Americans who are estranged from their sibs is probably less than 5%, according to psychologist Professor, Karl Pillemer.  

Only 26% of 18-65 year olds report having a highly supportive sibling relationship with frequent contact and low competition. 19% had an apathetic one and 16%, a hostile one.  Daniel Shaw, University of Pittsburg psychologist says:  “something happened and they never forgave each other “.

The article cites how from age 3-9 there is an extended conflict for every 45 minutes of playing with your siblings.

Because in between there is so much positivity, they can tolerate the conflicts.

If you never learn to manage the conflicts, you are at risk for estrangement.  

On top of this if the parents cannot manage conflict, there is no role model setting a standard for relationship. 

Another significant factor is favoritism.  This is also called adult sibling rivalry!

Mothers have favorites 66-75% of the time.  

When there is a favorite child of the mother the sibs are more likely to become estranged and this is especially true when parents start aging and issues of caregiving for parents occurs.

Now,  they have to deal with each other. There can be real or perceived betrayal etc..

Economics play a part too. Higher income siblings break away more easily than do working class or poor families, and those from immigrant cultures tend to stay together-as a way of honoring their parents. Those who initiate estrangement often feel deep regret later in life. 

One article[iii] showed that if a mother expected care, that that adult child actually stepped up to give care. Caregivers were also most likely to share their mothers’ values, live in close proximity and were daughters.[iv]  

Another study showed that adult sibling rivelry and wanting to gain favoritism regarding caregiving for parents was associated with sibling tension following a mothers ‘major health event’. 

The effects of caregiving on sibling tension were greater when perceptions of favoritism were also present.  Caregivers turned to siblings at these times—yet interpersonal stress were often major issues in the way of receiving consoling or support.

An article from Family Caregiver Alliance[v] lays out some guidelines to mitigate the legacy of family dynamics to avoid any rough spots in the transition of caregiving for siblings especially when the parent has dementia.  Sometimes siblings are in denial.  Any sibling friction of family dynamics is hugely exacerbated at these times.

Sometimes one person steps up and falls into a role again as the favorite.  The caregiver then feels resentful because there is not enough help from the siblings and that sibling experiences being left out.

To mitigate this, take the highroad and look at the future you want to create with your sibling!

  • Share feelings openly letting people know that their help is needed
  • Keep everyone in the loop
  • Allow support in whatever way can be done by others
  • Thank your sibs
  • Expect differences and respect each other
  • Employ a trusted party so that everyone is heard-or utilize a professional.

Choose well! Your future depends on how you treat your sibs!

Click for news and alerts  from theTeam on behalf of Robin Quivers 

 

[i] Your Health Your Adult Siblings May Be the Secret To A Long, Happy Life, November 27, 2014 Robin, Marantz Henig.

[ii] Psychology Today April 2015, When Siblings Don’t Speak

[iii] Gerontologist.  2014 Aug;54(4):589-98. Doi:10.1093/geront/gnt066. Epub 2013 Jul 9. Who provides care? A prospective study of caregiving among adult siblings. PillemerK, Suitor JJ.

[iv] Gerontologist. 2014 Aug; 54(4):580-8. Doi: 10. 1093/geront/gnt065. Epub 2013 Jun 27. Caregiving, perceptions of maternal favoritism, and tension among siblings. Suitor JJ, Gilligan M, Johnson K, Pillemer K.     

[v] https://www.caregiver.org

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Topics: womens health, senior health, care-giving, mens health

Good Grief! Through Self-Expression

 

Sometimes there are things to say even if the person is gone. But, we are "in a story" about should haves, could haves, if only(s). if I had done this. I should have done that, we all do it.

These chronic thoughts we have, placed on top of our grief can make us feel paralyzed.

They can run us down and even lead to depression studies have shown.

We obsess over these thoughts that can stymie our self-expression, our getting on with life after loss and our being present for others--like our kids.  Grief stymies our creativity, our ability to feel love, our sleep and yes, even our health.     

And it happens every day. A loved one is gone.

There was no time to say this or that.

There was no time to take that vacation with them, to hear about their past one last time, to do that class they wanted us to drop everything to do with them when we were raising our kids and holding down our jobs or building our businesses.    

Or if they had dementia, we are slowly saying goodbye, but not really communicating what we have to say. We are left alone long before they pass holding all of our communications on our lap.

What of the loss of a child?  What of a sudden tragic situation or unexpected accident? There is not time to say all one has to express.  

And what if someone commits suicide[i]? There is not only loss; there are many more issues at play. One study we found that this grief is silenced when the shame attached to the suicide “invalidated a person’s need for expression”.

We looked at the research and it is noted that some turn to religion.

 

As an anecdote to share-- we know a daughter-- who took action when she first noticed her mother was in the last phases of ailing but before dementia set in!  

What sets this story apart, is that this person was a caregiver to her mother for decades after her mother was first diagnosed with cancer. The mother went on to have dementia as well.

 

Here are steps the daughter took and what we can share as steps for anyone who may lose a loved one, to consider doing:

  1. First, the daughter got a blank book and interviewed her mom about her life-and she wrote down and recorded all the detail that her mom expressed, for as many pages that could be filled out. 
  2. When the mother passed away, leaving three grown children, on her mom’s birthday that very year, the daughter sent a letter from ‘Mother to her Three Children’ speaking in the exact voice of their mother as had been recorded on paper. The letter contained all the detail and how the siblings could see their mothers’ life in perspective.
  3. The letter from ‘Mother to her three Children’, also served the daughter to complete the articulation of her mothers’ good deeds and what she stood for as a mom. It also allowed for articulation of her mistakes—which she did not admit easily in life.
  4. Highlighting the mistakes that Mom made, to her siblings, the daughter not only was able to express the love and pain she had for losing her mom but also, soften the roles that they each fell into playing with each other as siblings.
  5. With ‘Mother’ taking responsibility, it facilitated compassion, understanding and better rapport between the siblings.
  6. Finally, there was a statement from ‘Mother’ for each off-spring individually which expressed the Moms own love, appreciation and respect for that child individually and for the role they played in the family. Included was everything left for the Mother to say, spoken from the heart.

This technique of writing FROM her mother was fantastic for this daughter, the sole caregiver of her mother for decades.  It allowed and facilitated full self-expression of grief, empathy, compassion and set up improved relationships between siblings at a critical time of loss in the family. Also, it facilitated moving past grief in an accelerated way for the daughter and without depression that sometimes accompanies grief in caregivers.      

 

 

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Topics: care-giving