A Guide to Caring for Aging Family Members

Archive for the ‘How Caregiving Impacts Family Relations’ Category

Caregivers: Change and New Beginnings

Readers 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.
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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
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positives and negatives

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resignations about what is and possibilities of what can be

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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.

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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.”

Blog1

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.  Blog4
  • Section three is for digging into your past. Blog7
  • Section four is about the future.
  • Section five is for dreaming.Blog5
  • Section six is for getting real.

Book two:  Brainstorm how to take back your life.

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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.

Express Your Gratitude

In all the books:

Face reality
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Note your feelingsBlog10

Be honest with yourselfMulti-Ethnic Group of Diverse People Holding Letters To Form A Honesty

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

Blog9to write What to Do about Mama?

wtdam_fc

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.
Blog2

“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:

  1. 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.
  2. I have healed through the cathartic process of writing a book, blogging, and speaking publically about caregiving.
  3. 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.
  4. 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
  5. 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.
  6. 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.
  7. I have written a book, What to Do about Mama? which is a manual, of sorts, for them to follow.
  8. I realize I cannot control life.  I’m just doing the best I can.
  9. 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.
  10. 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

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!

 

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 Contracts

http://www.agingcare.com/

On the AgingCare.com website, saugo5774 asked the following question:

Protect Yourself with a Caregiver Contract

Protect Yourself with a Caregiver Contract

Do I need a caregiver agreement between me and my Mom?
Mom is giving me a check each month to care and support her.

My reply:

Caregivers can be compensated for services by using a Caregiver Contract
or Personal Service Agreement

The contract should address:

1) tasks—personal services, personal health services, driving, household services
2) work schedule and hours
3) wages and how to be paid (rates comparable to those of home-health companies)
4) care receiver Social Security payments and caregiver reporting
5) reimbursement of caregiver expenses and car maintenance.

Another important “contract” is a family agreement, generated from a family meeting. I don’t think this is the type of “agreement” you were referring to in your question, but it is important nonetheless. A productive family meeting (which includes your mother) can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you—autonomy or safety. Establish common goals. Divide responsibility based on the strengths and abilities you bring to the family. It is important to be specific. Develop a contract that delineates the commitments family members have made, and solidify those commitments with signatures that verify that everyone understands and agrees to the plan. Be sure to date the contract in case changes are needed later on.

Either of these types of agreements are more binding if they are at least notarized, if not drawn up with an attorney. If your objective is to be paid, I would definitely work with an attorney to draw up a Personal Service Agreement.

Barbara Matthews

 

 

Aside

Too Many Cooks in the Kitchen

An AgingCare.com question was recently asked that highlights the conflict between safety and autonomy for seniors.  http://www.agingcare.com/

A Question was asked by KAT2014:   Cooks

My grandparents will not accept help and there are too many cooks in the kitchen. Should everyone back off?

My grandparents can barely walk with walkers, they’re in constant pain, they have a ton of family members breathing down their necks telling them what they should do but at least we got my grandmother on anti anxiety meds (that only helps so much). Everyone is wearing themselves out helping my grandparents but it just angers them. We can’t even convince them to let someone meet with them for an hour just to discuss the idea of getting some profession in home care. Before I was supportive of everyone helping but I’ve changed my attitude. Now I feel my grandparents (and everyone for that matter) are so stressed and upset that everyone needs to just back off. Will one of them end up in the ER or worse–yes. Will their lives be easier if they had prof. help–yes. Will they accept help–NO a hundred times over. I feel they need love in the form of good conversation and distraction from the topics of health and death. What is the right thing to do? Force them to get help when they’re already furious or back off? The entire, huge extended family is miserable at this point. How can we help my grandparents move on gracefully? (they don’t qualify for hospice just yet but they did come by one day)

 

Expert Carol Bradley Bursack replies:

I agree that everyone should back off. People like your grandparents often feel bullied by all of this pushing. They may eventually agree to some help if they are given what you mentioned – loving attention and distraction. If they feel free to make their own decisions they may become more reasonable.

I also agree that if they aren’t too resistant to wearing personal alarms to call for help that would be a step forward. Because of all the pushing in the past, they may even refuse this for awhile, but in the future you could gently mention that this form of help is non-intrusive and possible so that you’ll set it up if they decide they want it. To me the magic words are “they decide.”

I know it’s hard to watch this and not try to fix it, but human dignity and the ability to decide for oneself is important. Good luck to you all,

Carol

WTDAM (that’s me!) comment:  On p. 54 of my book, “What to Do about Mama?” I state:

“A productive family meeting can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you—autonomy or safety. Establish common goals. Divide responsibility based on the strengths and abilities you bring to the family. It is important to be specific. Develop a contract that delineates the commitments family members have made, and solidify those commitments with signatures that verify that everyone understands and agrees to the plan. Be sure to date the contract in case changes are needed later on.”

In your situation you have an extensive family, so finding consensus will be a challenge.  I agree with all responders that the family needs to back off for now (this would be part of your family plan) and allow your grandparents to regain their sense of autonomy.  Once they feel a greater sense of control, they MIGHT be ready acknowledge their need for more help and make the choice to accept it (offered up in small steps).  If they don’t, then they will suffer the consequences, and none of you should feel guilty, say “I told you so,” or allow those consequences to become YOUR consequences.

If you feel the situation is very dangerous, you can always call your local Area Agency on Aging with a report of need.  The report can be made anonymously.

Terryjack1’s comment:

Definitely back off, no one likes to lose their independence and it’s difficult for some when they begin to lose skills such as their ambulation skills. It’s good they can use a walker but it sounds like they could use some physical therapy to strengthen their ambulation skills. Many don’t like strangers coming into the home, and it may be that your grandparents are afraid that if someone comes in they will be ‘made’ to go into a nursing home. Assure your grandparents that is not the case, there are many programs out there to keep people in their homes such as a waiver or senior care program. Call your local Area Agency on Aging to see what’s available in your area or to speak to someone for caregiver support. You can arrange someone to come out to visit your grandparents to explain about home and community based programs that are designed to keep people at home and they can reassure your grandparents that no one wants to see them in a nursing home. They have a right to make choices, but the choices need to there so they can choose. I’m a caregiver, I’m over 50 and I have medical issues that have brought on a decline in my functioning so I know how difficult it can be to accept assistance. You grandparents have always ‘done’ for themselves and now that they can’t it’s difficult for them to admit that and accept help. Continue to reassure them that you want them to stay in their home and there is help available to those who need it to keep them in their home. Most important of all is to let them know you love them and want them to be around for a long time.

Lostfamily’s comment:

The same type of issues were coming up with my dad. We knew he could not live alone, the doctor even said that he should not live alone, but he wanted to stay in his home, and the family was getting so stressed out and worn down, making sure he had meals, personal hygiene, outings or some social life and keeping his home clean, getting him to doctors’ appointments, etc. it took all four of us full time just to get it all done. After years, he could still not see all of the work it took, so the 4 of us decided to back off. We made sure that he had food, made the house as safe as possible, life alert, cell phone, he could not drive a car, so we sold the car, we did not want him getting behind the wheel, but wanted him to keep his social contact, like meeting the guys at McDonald’s for coffee, so we got him a electric scooter, and worried in silence that he did not get hurt. We visited him every day, but did not push him. Then something happened! He said that he wanted to see us all; he told us that he could not do it by himself. He told us he was willing to visit an Assisted Living Facility; he decided which facility he preferred. Your grandparents will never see how much is being done for them, unless they experience it for themselves. They still see that they are able of doing it on their own. They have to see for themselves that they cannot do it on their own. If they have a fall, or they miss a meal, be there to support them; when they are ready, they will be ready on their terms. Your biggest problem is your family. Unless, the whole family can agree to step back, the grandparents cannot ever figure it out. Why should they, as long as they are the center of attention, and being waited on for every need, I wouldn’t be in a hurry to change either.

WTDAM (me again) comment:

Great example, “lostfamily” of using the approach I outlined above. And as I said on p. 50 of “What to Do about Mama?”: Of primary importance is the individual who needs the assistance and care. If that person’s values and wishes are not respected and taken into consideration, you are bound to run into resistance and conflict. Who doesn’t want to remain in the driver’s seat of life? It is imperative to respect your loved one’s independence and dignity—it is, after all, that person’s right to make choices and decisions.

Barbara Matthews

 

Should you sit in on doctor appointments?

http://www.pennlive.com/living/index.ssf/2014/06/post_18.htmldoctor

In her PennLive article above: Not asking doctors questions can lead to medical errors–Linda Rhodes shares a statistic that eight of ten doctors find it helpful when a patient brings someone along to appointments. They welcome a second set of ears, find it reassuring when someone is taking notes, and are glad someone is showing up and asking questions. Doctors appreciate questions because an informed patient is more likely to follow orders correctly. Misunderstanding directions can lead to medical errors—something that a simple question could have avoided.

Although I completely agree with Rhodes’ article, I would like to add, however, that caregivers should also be prepared for conflict. In my experience as a caregiver, the issues of maintaining privacy and independence were exacerbated by the fact that I was a daughter-in-law.

When I went to doctors’ appointments with my mother-in-law, the medical personnel often directed their comments and questions to me. I would politely redirect them to speak directly to her. However, any involvement with medical issues, no matter how important, created discord in our relationship, particularly when I began to set up her medications, which occurred as follows:

After a hospitalization, when my mother-in-law was being released, I asked the doctor what his opinion was of my setting up her medications. My mother-in-law said, “You’re walking on thin ice!” After the doctor left the room, she said angrily to my husband: “You never know what is coming out of her mouth!”

That evening, after getting settled in at home, my husband’s sister called and talked to her mother about my setting up the medications. After the phone call was over, Mom came out, rolling her walker with a vengeance, and said, “Are you happy now?”

In truth, I was never happy when my mother-in-law “lost” the ability to perform a task independently. But in the case of medications, safety was the priority.

Barbara Matthews

Shared Responsibility

An AgingCare.com article “Getting Your Siblings to Help with Caregiving” by Linda Hepler, BSN, RN, stresses the importance of sharing caregiving responsibilities with siblings and makes suggestions about how to accomplish a cooperative family relationship.

See: http://www.agingcare.com
Home » Caregiver Support » Family & Relationships » Articles » Getting Your Siblings to Help With Caregiving

Hepler states that when an elderly parent’s health begins to fail, one adult child generally becomes the primary caregiver. And while this may work well for a time, it can eventually cause resentment when you find yourself shouldering most of the burden—especially if other siblings live nearby yet don’t help out. She then goes on to make the following recommendations:

  • Call a family meeting
  • Make a written agenda
  • Do as much listening as talking
  • Be specific about what you want
  • Divide up tasks
  • Don’t expect total equality

Hepler stresses that it’s normal to experience tricky dynamics when siblings get together as adults, since childhood jealousies and rivalries as well as historical grudges may resurface under the pressure to work together and make sacrifices.

Hepler recommends that if all else fails, an option for getting past stressful communication is a relatively new concept—family mediation—an informal process in which a neutral third party sits down to help people in conflict to better understand their individual interests and needs so that they can agree upon a workable solution to the problem.

Hepler emphasizes that even when successful in achieving a better distribution of responsibility, it’s important to communicate, communicate, communicate.

We have discussed the family meeting previously (See the February 22, 2014 entry: “Family Meeting”), but the concept of “shared responsibility” with siblings cannot be overstressed. It is a major concept in my book, “What to Do about Mama?” and is central to chapter 2, in which I recount my own personal caregiving story, including experiences with family meetings and family mediation. Following are some excerpts from the book, relevant to this topic:

  • A productive family meeting can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you—autonomy or safety. Establish common goals. Divide responsibility based on the strengths and abilities you bring to the family. It is important to be specific. Develop a contract that delineates the commitments family members have made, and solidify those commitments with signatures that verify that everyone understands and agrees to the plan. Be sure to date the contract in case changes are needed later on. WTDAM p.54
  • You’ve taken on the responsibility of family caregiving. You may have held a family meeting to set up a care plan. In an ideal world, all the family members would have done their best to foster a nurturing caregiving relationship among everyone involved—parent(s) and children alike. You have embraced mutual trust, respect, kindness, and patience. You have rejected guilt and resentment. You communicate effectively, based on listening to what everyone is saying. You compromise when problem-solving to find the solution that works best for everyone. You and the family have assigned tasks according to individual strengths and skills and with an awareness of individual needs. You share caregiving responsibilities, and have found that teamwork reduces tension and brings your family closer together. It even promotes the possibility of healing old wounds. You keep your expectations realistic, and your family members, in turn, provide you with needed emotional support. They allow you to vent and take steps to alleviate your stress.

    How well does this describe your family’s caregiving experience? In the real world, when there’s a pressing need to collaborate and make important decisions (especially with a resistant parent), you may not all be in top form, but, rather, anxious and overwhelmed. Your relationships may be knocked off balance by the magnitude of caring for aging or failing parents. Feelings for each other shift, sometimes weakening the ties and intensifying sibling rivalries of the past. There may be jealousies related to perceived “favored children” or worries about issues of inheritance. A frequently reported caregiver frustration is the lack of consistent help from other family members; a large portion of sibling caregivers (40%) end up having serious conflicts with each other. Most of us do not even see that we are about to become mired in the quicksand until we step in it and it begins to suck us down. WTDAM pp. 107-108

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