Caregivers: Change and New Beginnings
Posted: May 13, 2015 Filed under: Caregiving--Positives and Negatives, Emotional and Physical Challenges, Impact on Family Relationships | Tags: "What to Do about Mama?", acceptance, Age-in-Place, avoiding-crisis-mode, caregiving, caregiving-book, catharsis, challenging, change, communication, death and dying, declutter, electronic-tracking-system, emotions, empathy, everyobne-impacted-by-caregiving, expectations, feelings, forgiveness, healing, honesty, inventory-of-belongings, journaling, life-and-death-decisions, mother-in-law-quarters, new beginnings, organizing, pictures, planning, possibilities, preplanning, reality, therapeutic, wrapping-up Leave a commentReaders and Followers:
I’ve come to a point that I am ready for a reprieve from my involvement with caregiving–at least for a while. I realize that this issue will one day reappear in my life in one form or another, so I will keep the door open to revisiting What to Do about Mama? in the future.
I’ve noticed that a lot of bloggers just sort of disappear from blogging, and I don’t want to do that to you folks who actually read or follow my blog.
The AgingCare.com article: New Beginnings Are Possible for Caregivers
(Home » Caregiver Support » Emotional Wellbeing » Articles » New Beginnings Are Possible for Caregivers ) by Carol Bradley Bursak struck me as relevant to my book writing and blogging endeavor. When I read it, I asked myself the question, “How has caregiving changed me?” So I’ve decided to address this topic in my “potentially” last blog post (at least for the foreseeable future).
THE QUESTION:
Does caregiving change you—either while you are a caregiver or once your caregiving has ended? I think caregivers would respond to that question in a variety of ways noting:
similarities and differences
positives and negatives
resignations about what is and possibilities of what can be
Why Not?
CLICK ON THE LINK ABOVE TO READ THE ARTICLE
OR
SEE THE FOLLOWING SYNOPSIS
OR
SKIP TO: “How I Have Changed since Caregiving”
SYNOPSIS: In “New Beginnings are Possible for Caregivers,” Carol Bursak states that:
- The sameness of each day in your life as a caregiver can, at times, seem overwhelming and permanent.
- New beginnings for caregivers are far easier to suggest than to accomplish, especially since fresh beginnings generally come after significant endings.
- One route to finding what may be possible is journaling. Journaling can be a tool to examine where you were before caregiving, where you are now, and what you’d like your life to be if you could magically make it so.
Bursak goes on to say, “There’s something therapeutic about writing out how we feel and then reading the words that have come from our heart as well as our head.”
Now really…isn’t that what blogging is all about?
She then provides the following “loose guidelines” to structure your journaling:
Book one: vent your feelings and reinvent yourself
- Section one of book one is for venting.
- Section two is a place to note your caregiving routines
and what you’d want to do differently if you could.
- Section three is for digging into your past.
- Section four is about the future.
- Section five is for dreaming.
- Section six is for getting real.
Book two: Brainstorm how to take back your life.
Book three: Express your gratitude
- Remember that you’ve grown as a person who understands the needs of others.
- Include self-forgiveness for being imperfect.
In all the books:
Face reality
Note your feelings
Be honest with yourself
Bursak summarizes her article with the following: “The reality of ongoing caregiving is that most caregivers won’t have spectacular new beginnings as long as they are in the caregiving mode. However, self-examination and self-forgiveness can lead us toward a renewed outlook on life. This, in turn, may lead us to examine the ways that we can have a richer existence, within the confines of our caregiving obligations. And yes, that does count as a new beginning.”
HOW I HAVE CHANGED SINCE CAREGIVING:
I share the article “New Beginnings are Possible for Caregivers,” because for me…
Journaling helped:
to maintain my emotional health during caregiving
to write What to Do about Mama?
While I was active in a caregiver’s support group, one of the group leaders suggested to me that I keep a journal, a method found to have a positive impact on physical well-being as well as emotional health.
- Writing about stressful events helps you to both face and deal with the situations that negatively impact your health. It knocks down the walls you have built so that you can gain understanding of yourself and your life circumstances.
- Writing about the difficult problems and feelings helps you gain understanding of other points of view. It is an effective tool to help you resolve differences with others.
- Writing about painful emotions helps decrease the power they have over you so you feel more at ease, able to move beyond the past and stay in the present.
“Scrolling” non-stop stewing
Although I did not follow the detailed journaling format described by Carol Bursak, it was my dumb luck that most of the elements she indicated were applied—mainly by facing reality, noting feelings, and being honest. It was in this way that I was finally able to put an end to the incessant agonizing and SCROLLING I had been experiencing.
After my mother-in-law passed away I thought, “I have all this stuff; what can I do with it?” So, I wrote a book. The journal account simplified the process. My objective was to use caregiver knowledge and experience to help other caregivers overcome, or at least minimize, common challenges.
HOW I HAVE CHANGED:
- I experienced sudden and rapid physical challenges when my mother-in-law’s caregiving needs increased dramatically and family conflict accelerated. I had bilateral knee replacements four years ago, but continue to work out daily in an attempt to stave off physical decline.
- I have healed through the cathartic process of writing a book, blogging, and speaking publically about caregiving.
- I have learned to accept that the dynamics of my husband’s relationship with his family have changed, and therefore mine have, too. I understand that the past relationship was defined through his parents and they are now both gone. I accept that it is my husband’s right to choose to “NOT” have a relationship, even if I find that choice to be incredibly sad. I hold no grudges or resentment toward my husband’s family, and refuse to get mired down in feelings of being used or unappreciated. Life does not come with a manual. Everyone makes mistakes.
- I am preparing to leave my children in a much better place in regard to caregiving. That does not mean that I am absolving them of responsibility. I will not become stubborn or resistant to the “changing of the guard” that will come someday. It’s just that I am preplanning and organizing so that they will not have to make difficult decisions alone or clean up my messes. Although my husband refuses at this time to sell our home and move into a condominium nearer to our children, I am open to doing so, or even to living in a “mother-in-law house” on their property or having an “electronic tracking system” in our home. (See the Patriot News article “Staying in Touch” The Patriot-News | Page A13 Thursday, 7 May 2015 by Brandon Baily, the Associated Press, San Francisco @ harrisburgpatriotnews.pa.newsmemory.com/publink.php?shareid=0ffc7eaed
- My will is in order. My house has been decluttered. Pictures are mounted in books. I have completed an inventory of my belongings and have insisted that my children indicate their preferences. I am either indicating who gets what or designating who is responsible for distributing various categories.
- I have expressed my desire to “Age in Place” and am in the process of discussing the various options to accomplish this plan. I have planned ahead to pay for in-home support. I have made it clear that my children need to share the responsibility for any care that we need. I have also made it clear that I believe in quality versus quantity of life, and what steps are to be taken concerning life and death decisions.
- I have written a book, What to Do about Mama? which is a manual, of sorts, for them to follow.
- I realize I cannot control life. I’m just doing the best I can.
- I have been able to inform and assist others with caregiving problems and situations. I am fulfilled by using my knowledge and experience to help. Caregiving either impacts or will impact almost everyone.
- I understand that What to Do about Mama? is not a “sexy” topic, but believe that being prepared is better than reacting in a crisis mode. Just ask any caregiver.
Barbara Matthews
It never goes away and it has made me who I am.
Posted: October 7, 2014 Filed under: Caregiving Roles and Responsibilities | Tags: bereavement, caregiving-book, emotional trauma, family secrets, formative years, grief, grief in childhood, honesty, life-altering, love, memory, openness, pathalogical-developmental-distortion-or-arrest 1 CommentNorthernMSW: Advocacy, Aging, Healthcare & Social Work Issues…..
03Oct
Grief in Children Rea L. Ginsberg, LCSW-C, ACSW, BCD- Guest Blogger
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.
My Counterpart: a Go-To Grammy
Posted: June 29, 2014 Filed under: Miscellaneous | Tags: cancer, convictions, counterpart, courage-of-choice, cry, difficult-decision, eulogy, fairness, feelings, gift, go-to-grammy, honesty, joy, kind-and-gentle-nature, love, mother-to-daughter-to-granddaughter, patience, respect, right-to-choose, strong-women, support, unconditional love, understand, vital 2 Comments
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
Moving In!
Posted: May 9, 2014 Filed under: Assuming Caregiving Responsibilities | Tags: boundaries, budget, caregiving-book, communication, conflict, cooperation, customs, finances, honesty, mutual-respect, personal-space, personality-clashes, planning, preparation, resentment, respite, roles, safety, values 2 CommentsIn “Me and These Men” May 5, 2014, MKC posts:
Five Tips for Not Losing Your Mind When Your Parent Moves In.
There are PLENTY of ways to lose your mind once your parent has moved in—but prior planning certainly does help. I address this same topic in my book, “What to Do about Mama?” on pages 72-73 and 77-78.
Providing Care in Your Own Home
As much as you think you can look dispassionately at the situation and develop realistic expectations, frankly, no one can imagine the scope of what he or she is getting into. How can you know the unknown?
But certainly, if this is the choice you make, be sure that you and your spouse or partner are as prepared as possible. Your home needs to be made safe and handicap accessible, with equipment such as grab bars and shower chairs. Throw rugs should be removed from walkways. It is best if you can provide one-floor living capability, which can be an extra challenge if there is no bathroom facility on that level.
Discuss how responsibilities will be divided among those living in the home, as well as those providing outside support. Don’t forget to talk about finances. Bringing your loved one into your home will put extra demands on your budget. Make sure you will have opportunities for respite and time for yourself; don’t “lose” yourself in the process of caregiving.
Most importantly, consider whether your relationship is strong enough to handle the demands of living together. If you have problems historically, they will continue or even get worse. Even if you believe you have gotten along well, be prepared; there may be some surprises you just didn’t foresee. Keep all the household members in mind—are there personality clashes? Then there’s the issue of the “others,” the ones who are not taking on the responsibility of front-line caregiving. Too often, they are the ones who second-guess or criticize you. If you haven’t felt resentment before, you will now, and that emotion can really destroy relationships. Are you prepared to cope with this ongoing stress?
If you opt to bring your loved one into your home, establish an open line of communication. Talk about and listen to expectations on both sides. It is so difficult to respect everyone’s roles when the parent-child lines become fuzzy. To encourage a positive and cooperative atmosphere in your home:
Designate a personal space for your loved one that is not too isolated from the rest of the household. Fill it with his or her belongings, collectibles, and mementos.
- Talk about individual routines, and try to accommodate everyone’s needs as closely as possible without compromising your household and family values. Will you have enough time for other family members? If your spouse or children are required to sacrifice what they hold dear, the household climate will become a breeding ground for resentment and conflict. Remember that family support is vital if the living arrangement is to be successful.
-
Emphasize household customs, and solicit support for avoiding unneeded disruptions. Will you be able to maintain important lifestyle concerns such as employment, social life, and vacation plans? Are you prepared to make adjustments?
-
As a family, discuss what you each value and what causes you stress.
-
Set boundaries in the relationship, but make sure to schedule time together.
-
Help the care receiver develop new activities and friendships.
-
Encourage mutual respect based on communicating wants and needs, not giving orders. Stress the importance of being open and honest with each other. This is particularly difficult when your care receiver goes around you to complain to the “others,” which also sets the “others” up to second guess your actions. Direct communication is the key to avoiding misunderstandings.
Barbara Matthews
What to Do about Mama? 