A Guide to Caring for Aging Family Members

Posts tagged ‘love’

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.

Advocacy

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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

My Counterpart: a Go-To Grammy

 

 Sunrise

My grandchildren’s Grammy, in other words—my counterpart—passed away on Father’s day.  Up until the last half year of her life, she was a vital woman and a go-to grandma.  She and her husband were married for nearly 44 years–two months less than I have been married to mine.  He wrote her eulogy, a beautiful tribute to his wife and their marriage.  The eulogy was hard for him to deliver at the funeral; he did it, but broke down.  My 6-year old granddaughter sat beside me, my arm around her holding on tight.  She cried when she saw her grandfather cry.  My 3-year-old grandson was a little wiggly in my lap; he being too young to understand.

Really, none of us “understands.”  Sure we know that we all live, and then we all die.  But we would drive ourselves to madness if we tried to make sense of the who’s and the how’s and the why’s, or the “fairness” of it all.

It’s also so hard to know what to say to someone who is unexpectedly diagnosed with cancer and decides not to undergo treatment.  So I tried to express my feelings by telling her:

“I am thinking about…

how overwhelmed you must have felt at the seemingly sudden onset of your disease;

how difficult it has been for you to decide what path to take;

the strength of your convictions in deciding your course of action;

your incredibly difficult decision and the courage of your choice;

how you are living life on your own terms;

the wonderful job you have done raising your children who have pulled together in providing support, in respecting your right to choose, and in demonstrating their unconditional love for you;

how much your daughter loves you;

how I hope my son is able to tell you how deeply he loves and respects you, but that if he cannot find his way to speak of his emotions, that you will trust me when I say that he does;

how I will always tell our grandchilden how much love their Grammy has for them and how much joy they have given you.”

And then, at a later date, when the end was drawing near, I sent:

“A Heartfelt Message”

You have given our family a precious gift—YOUR DAUGHTER.

Your kind and gentle nature lives through her.

You have instilled in her the values of  love, patience and honesty.

And so it passes—from mother, to daughter, to granddaughter.

Strong women, all.

 

I can only hope that these words somehow helped.  I think they are what I would like to hear.

Barbara Matthews

 

 

 

 

 

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