At the end of my post “The Family Meeting” (2-22-2014) I said: It’s really good to look at and consider a variety of perspectives and ideas. That’s what’s great about support groups…but that’s an entry for another day.
I’ve had my eye out since that time for an interesting article about caregiver support groups. The other day I searched Word Press for a blog. None. Nothing. Nada. They suggested I start one. Well, I want to do a support group post—not a whole blog—so here goes.
How I became involved with a support group:
If you’ve been following this blog, you know that I was primary caregiver for my mother-in-law who lived in our home for four years. Soon after we began that arrangement, my sister-in-law (SIL) told me that if I needed someone to talk to that’s what she was there for. Over time, however, I sensed that I sometimes got into areas that made her uncomfortable. For example, when I expressed my disappointment with the frequency of two of the siblings’ visits, SIL replied, “What my brothers and sister choose to do is on them.” It was about that time that she recommended I join a support group, which I did.
When people ask how it’s going in regards to caregiving, sometimes in that moment caregivers find themselves letting their frustrations flood out like water from a broken dam. But afterward they feel regretful or “weak” for having unloaded at an inopportune time. There is no reason to feel that way at a support group. The other members just “get it.” There is an amazing validation of feelings: you aren’t just “imagining” it, and you are not “bad” for feeling that way.
Sometimes you receive feedback that acknowledges and defines what you are trying to express even before you are able to put it in words. Support group members are good listeners. Listening to others is equally as helpful to the process as speaking; it helps keep your situation in perspective. It is common to feel that others are dealing with conditions much harder than yours and to wonder, “Why am I complaining?” But the other members really do understand—all caregiving has its challenges.
Some other benefits of support groups are:
- It’s cathartic to “let it out” in a non-judgmental and receptive environment
- It’s a welcome change of scenery and a time-out from caregiving
- It’s helpful to hear the perspectives and suggestions of other caregivers and professional staff and to sometimes receive the “nudge” needed to make difficult choices
- It’s great to realize that caregiving is an experience that group members “share,” unlike the “I understand this is difficult for you,” you often hear from family and friends who do not indeed share the full scope of the experience
- It’s a wonderful feeling if your experience and participation are helpful to and of value to others
- Enlisting friends and family to stay with the care receiver so you can attend support group is a good way for others to provide the help they have offered.
The main difficulty of support groups is just being able to go—because of the constraints of time and logistics.
On-line Support Groups:
For caregivers who cannot find the time or coverage to attend a support group, there are a number of good groups available on-line. Although I did not participate with these groups when I was a caregiver, I have been exploring them regularly while looking for material to blog. Although I personally preferred to talk to other caregivers on a face-to-face basis, a big advantage of on-line support groups is the rapid response to caregiving questions and concerns, as opposed to a “monthly meeting” format. Take time to explore these sites to find what works best for you.
- Elder Care at Home. http://eldercareathome.org
- Minding our Elders http://www.mindingoureldersblogs.com
- caregiving.com http://www.caregiving.com
- AgingCare.com. http://www.agingcare.com/Caregiver-Forum
- Help! Aging Parents http://helpparentsagewell.blogspot.com
Although the issues of time and securing needed coverage in order to attend are the main obstacles that interfere with attending a support group, those caregivers who do find a way to attend report that it is well worth the effort.
The following excerpts from “What to Do about Mama?” express a variety of perspectives about support groups.
- I haven’t belonged to any support groups, other than one. But that group has been very positive for me—and I attribute that to the skills of the facilitators. The founder/leader of the support group is so tremendously empathetic; she is a caregiver herself in an extremely difficult situation. The other professional is a hospice social worker, with the special ability to put her finger directly on any problem with which you are grappling. Even though I am no longer caregiving, I have continued to attend the support group because our group leader makes me feel as if I have an important contribution to make in offering knowledge and support to other caregivers. Since I “retired” from a job to be a caregiver, it makes me feel really good to play the role of at least a “quasi-professional.” WTDAM pp.102-103
- I attended almost all the support groups that were available in my area. Many were helpful for different reasons or needs that I was seeking to address. Presently I find that I need to attend only one group that is more for me—not for my mom. I need the support from this group of women who have become my friends for at least one day a month. They care about me; they patiently listen to me and my growling. They pat me on my head, they advise me, they praise me, they encourage me so that I can go on, and they let me know that I am doing a good job despite my fears and failures. The funny part about the meeting is that sometimes I go there feeling like I cannot go on, especially after having a particularly bad day/week/month, but there is always someone who has a story that is so much worse than mine. Listening to that story immediately puts it all into perspective and makes me feel that, “Yes, you can do this”—because she is doing it. It is empowering and replenishing and sometimes the highlight (if not the social event and reason to spiff up) for my entire month! WTDAM p.54
- I did not join a support group, but I found that I gravitated to people who were currently or who had previously provided care to elderly people. It was helpful to discuss shared experiences. WTDAM p.57
- My mother and I did not join a support group—we simply did not want to rehash what we were living through with other people. WTDAM p.76
- I have gone to a support group and plan to continue going. I absolutely recommend it. One benefit is that such a group makes you realize you are not the only one whose world has turned upside down. On the other hand, sharing is sometimes difficult for me because I am acquainted with several of the women, and privacy is important. WTDAM p.84
- I did not join a support group because I thought I was too tough. WTDAM p.100
- My sister and I both had full-time jobs, and although it was stressful, we looked at caregiving for our mother as just another job we had to do. We did not join a support group—we barely managed to visit her several times a week and keep up with our own lives! WTDAM p.134
- Did I join a support group? There was no time to for that! WTDAM p.139
- Although I did not join a support group, I was fortunate to have good friends to talk to about the difficulties. Additionally, I appreciated the “pat on the back” that friends provided me. They also made good suggestions and gave me the nudge that I sometimes needed, such as calling on hospice. WTDAM p.171
- My wife and I attend support group meetings together. You and your loved one may think that attending these meetings shows weakness. I must mention here that the meetings we attend are uplifting and informational. WTDAM p.209
- I searched for a support group for caregivers—most were disease-specific or church-sponsored. I then made a proposal to my employer to start a caregiver-support group. They gave me the green light. I started “Care Giver Coffee Break & Tea-L-C” five years ago. I wanted it to be in a non-clinical setting and a place where for an hour a month, caregivers could bond with others in the same boat. It has been a wonderful experience, both as a facilitator and a caregiver. It is cathartic; we cry and vent and laugh and love each other. I would recommend to others to seek help and join a support group. WTDAM p.220
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.
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
Don’t be thinking this is me! My caption would say “FORMERLY Angry Blog Grandma” and I would require another ten years of being pissed off to be this grouchy gal. Funny nonetheless. The cartoon came via the caring.com’s Facebook page.
The following article was written by: Carol Bradley Bursack, Expert Author, speaker, columnist and eldercare consultant and was taken from AgingCare.com, http://www.agingcare.com
Home » Caregiver Support » Tough Issues » Articles » Assisted Suicide and Elders: How Far Would a…
I have included the entire article as an addendum to my original post: The Conversation Project from 2-11-14. At a later date I added a comment to that post, which, I suspect, got “lost in the sauce,” so to speak. The comment was about the court case against Barbara Mancini, referenced in Bursack’s article below:
Assisted Suicide and Elders: How Far Would a Loving Caregiver Go?
Assisted suicide—illegal in all states except Oregon, Washington, Montana, Vermont and New Mexico—has recently been in the news because of the court case against Barbara Mancini.
Mancini is a Pennsylvania nurse who was accused of helping her father, 93-year-old Joe Yourshaw, commit suicide by handing him his partially full prescription bottle of morphine when he asked her to do so. Her father, who was under hospice care, then deliberately took an overdose of the medication because he wanted to die.
Mancini has since been acquitted, due to lack of proof that she gave her father his prescription bottle with the intention of helping him commit suicide.
My mother, during her last two years of agony, would often a look at me as say, “Can’t you just give me a little black pill? “It was obvious to me what she meant and, of course, all I could say was that I couldn’t do that, but I would do everything possible to aid her comfort.
Yet, her pleading nearly broke my heart.
Mom had some mild memory loss at the time, but not Alzheimer’s disease or severe dementia of any kind. I had the Power Of Attorney over her health, though my whole family was consulted on all important issues. Early on, Mom had opted for a do not resuscitate code and, as a family, we supported her choice.
It wasn’t until doctors determined that Mom would likely die within six months that she was able to receive hospice care, which then opened up opportunities for better pain relief. I will always remain grateful to hospice for my mother’s improved quality of life during her last months. When her time came, Mom died peacefully and with dignity.
What if I couldn’t have secured hospice care for Mom and she had continued to beg me to free her from pain? What if I had the legal option that would enable me to honor her request? It was obvious that she was slowly dying anyway. Would I have helped her by supplying medication that she could, at will, use for a lethal overdose?
I’m not certain what I would have done, and I am grateful that I didn’t have to make such a choice.
I do know that years earlier, when she showed signs of colon cancer, I respected her wish to not take the tests any farther. She rightly told me that she couldn’t withstand the tests, let alone the surgery, so she didn’t want to do anything.
I simply said, “Whatever you want to do, Mom, I’ll support you,” and that’s what I did. She lived over seven years after that conversation, much of it in excruciating pain from various causes. Her dementia worsened as well. I’ve never had regrets about supporting her choice.
Whether or not her life was more painful or less so because of her decision, we’ll never know. She may have died years earlier on the operating table, or she may have had the surgery and lived with less pain those last years of her life. All I know is that she made her decision and I supported her. The whole family did.
When I think of what people must go through to be certified to legally accept help in dying, I’m not certain that she had the energy to go through that process, even if it had been lawful at the time.
A difficult decision, and a long process
In most states where assisted suicide is now legal, the person wanting to die must be interviewed by multiple psychiatrists and, of course, already be within a certain closeness to death. It’s not an easy process.
It’s also not likely an option for people with Alzheimer’s or another dementia since, by the time the disease brings them to the brink of death, they would no longer be legally qualified to make such a decision, due to their brain disease.
Even if people with dementia leave their designated Power Of Attorney for healthcare with specific instructions to help them commit suicide once they reach a certain stage, the ill person would no longer qualify for legally assisted suicide at that point, since dementia would be deemed to be clouding their judgment.
Some cancer patients, those with ALS (Lou Gehrig’s disease) and others who have diseases that will bring certain death, but won’t cloud their judgment, may consider the choice to end their lives at an earlier stage than natural death would allow. The point of the law is to mandate whether or not a chosen person can assist them by supplying the means.
Hospice and healing
In most cases, hospice care erases (or at least makes bearable) any physical suffering, though there are exceptions.
Hospice, however, does much more than just assuage physical pain. The program also offers spiritual counseling for the dying person and support for the family. This assistance can sometimes bring even splintered families together during this transitional time. While I’m aware that some hospices are better than others, my support for hospice is unwavering.
Sadly, as in the Mancini case, it’s not just physical pain that may exceed the ability of hospice to control, but the emotional and mental stress that, for some people, is too much to bear. That is when—I would imagine—assisted suicide becomes a consideration for some.
What happens after death?
In my opinion, some of the emotional turmoil about assisted suicide stems from each person’s perspective on what death is. If a person feels that the end of physical life is the end of everything, it seems to me that it would be harder to die than if a person believes, as I do, that the spirit lives on.
Obviously, I have not personally been in this spot, though I may one day face such a dilemma. What would I want my loved ones to do? My healthcare directive is clear that I don’t want to be kept alive under extreme circumstances. However, I wouldn’t want my loved ones to have the burden of deciding whether or not to help me commit suicide.
Just what is assisted suicide?
Assisted suicide is not euthanasia. The person assisting is providing the means, but the patient commits the act that takes his or her life. Still, assisted suicide is, by definition, assisted. Someone, be it a physician, friend or family member, supplies the dying person with the requested method used to commit suicide.
How far should a caregiver go in supporting the wants and needs of a beloved spouse or parent – or even their child – when the requested support may hasten death? The answer to this question will be debated for years, and no doubt more court cases like Mancini’s will be heard.
To some, Barbara Mancini is a hero for following her father’s directions and giving him his bottle of medication. With that in hand, he could decide when and if to commit suicide. To others, she is a criminal because she didn’t protect him from himself.
I suspect few people consider these issues more than those who care for suffering loved ones nearing death.
What would I have done in answer to Mom’s plea if hospice care hadn’t been enough for her and assisted suicide had been legal? I don’t believe I could have given her the means to die, but I can’t say for sure. I’m thankful that I didn’t have to decide.
In AgingCare.com, http://www.agingcare.com
Whitney asks the following question:
I would like to hear stories about how your health has been affected by sibling(s) that refuse to help you with parents’ caregiving. Speaking for myself, I’ve had high blood pressure and am fatigued most days. I basically consider myself a calm person, but having to deal with impossible to get along with sibling(s) is really an emotional and physical strain. In addition, do you plan to end the relationship with your sibling(s) at some point that do not help you with caregiving?
Based on my experience as primary caregiver for my mother-in-law, I am absolutely convinced that caregiving has a direct correlation to caregiver health. I believe caregiver health is impacted by both the physical and emotional demands of the job. I address this issue in my book, “What to Do about Mama?”
• Around the time I turned 60, just before Mom became sick, I was sitting on the examining table at the doctor’s office for my yearly checkup, thinking, “I feel great!” In a matter of weeks, because of the dramatic increase of caregiving demands, fatigue, aches, and pains began to get the better of me. WTDAM p.11
• If the expectations we had coming into the caregiving relationship are not fulfilled, the seed for conflict is planted. Our expectations are born out of a sense of fairness. Imbalances of responsibility lead to bad feelings among siblings and to caregiver burnout. “Doing one’s part” is open to interpretation. You are not in control of your adult siblings, and when you try force your will (no matter how justified), it provokes a wide array of negative emotional responses. WTDAM p.60
I also address the issue of maintaining sibling relationships.
• There could be healing someday if you and your siblings find your way to let go of grudges. But you may also have to learn to accept that sometimes relationships are broken beyond repair, and it’s just not your job to fix them. Whereas childhood relationships with brothers and sisters are involuntary, maintaining them in adulthood is not. We are entitled to choose “not.” WTDAM p.113
So, why did I write a book about caregiving?
First of all, I worked for the Area Agency on Aging for over four years; it was my job to visit seniors in their homes in order to administer comprehensive assessments to determine their needs and eligibility for services. I saw firsthand the challenges for seniors and their caregivers.
Secondly, I was a caregiver for seven years. During the time I worked at Aging, my mother-in-law moved from Florida to our city in Pennsylvania. She resided in a supportive independent-living retirement facility. After living there for two years, she began to have falls, which required a cycle of emergency room visits, hospitalizations, and extensive rehabilitation. The “solution” to the problem was for me to quit my job so that my mother-in-law could move into our home with me as her full-time caregiver.
- Thirdly, I became active in a caregiver’s support group run by a local hospice. One of the group leaders suggested to me that I keep a journal. I also had a lot of e-mailed letters that my husband and I wrote to his siblings when we were trying to deal with the escalating needs of our caregiving situation. In addition, I was interviewed for a magazine article about support groups. After that process I thought, “I have all this stuff; what can I do with it?” I spoke to the author of the article, who was involved in her own challenging caregiving situation, and asked if she would be interested in co-authoring a book.
- And mostly, I wanted to make a positive out of something that had turned negative.
How long did it take to write the book and get it published?
- 6 months gathering information from questionnaire
- 6 months writing
- Submission and waiting
- Accepted and waiting
- Editing and waiting
- Proofing and waiting
- Published November 25, 2013
- More waiting
- Setting up social media
- Writing on social media
- And waiting
- Book events
- And waiting
What am I waiting for?
- Communication in general
ISN’T THAT WHAT BOOKS AND BLOGS ARE ALL ABOUT?
My blogging formula:
- Visit other caregiving sites
- Make comments about blog contents
- Discuss the information on my site
- Cross reference excerpts from “What to Do about Mama?
Thank you to the 20 of you who are following my blog (as of today). Since “everyone is a potential caregiver” I hope the information is useful to you.
For those whose caregiving sites I follow: Aging Parents: Making the Transition from Child to Caretaker; An Only Child’s Journey into Parent Care; Help! Aging Parents; Cape Cod Caregiver; Dog Tales; Mom & Dad Care; The Selfish Caregiver; I hope that my comments and sharing bring more activity to your sites.
Maybe at some time you will be moved to comment on mine. I would enjoy and appreciate your perspectives and suggestions.
Since caregiving is such a universal concern, I wonder, “What is holding everyone back?”
- Maybe caregiving is a topic non-caregivers avoid thinking about because “they don’t need it yet.”
- Maybe current caregivers are just too busy.
- Maybe the topic of caregiving is too gut-wrenching for former caregivers.
So in the meantime I wait
- For comments
- For something to happen
- For the time I can move on in my life
From Mom & Dad Care March 9, 2014 blog entry: It Always Ends The Same Way
Wow! You travel 1500 miles every 3-4 weeks to visit your mother? Talk about long-distance caregiving! Have you ever considered moving your mother to live by you? That’s what we did with my MIL who lived in New Port Richey, FL. It’s all documented in my book “What to Do about Mama?” Thank you for following my blog of the same name.
As you said in “About Me” your younger sister only sees your mother occasionally. When siblings don’t meet your expectations, it really can stoke the anger element. That was a really big issue for me because I was caring for a mother-in-law full-time in my home (and quit my job to do so). So kudos to you for figuring out that your sister’s behavior was sapping your time and energy, and just wasn’t worth it. Honestly, my anger over the issue was eating me up.
I can see that you are a prolific blogger–and really good at it, too. Blogging is something I do only begrudgingly to promote my book. Our objectives, however, are the same: relating experiences, and sharing with others so that we will all learn something about the care of our aging parents.
In your March 9, 2014 blog entry: It Always Ends The Same Way you state: “In the meantime, I know I am doing everything I can for her, but deep inside hope that there is some synchronicity with the expiration of her Long Term Insurance plan in 4 years and her own path. You guessed it; I hate myself for that sometimes.”
As caregivers, we have to remember that we are only human. Here is an excerpt from my book which addresses the same concept:
“The spiritual advisor visited later in the week, and David came home from work to be a part of the discussion. When the spiritual advisor tactfully asked Mom if she had ever considered stopping treatment, she said she was not going to stop her heart medication. All I could think of were Mom’s previous comments, which began running through my head: “My goal is to live to 100. It’s all in your attitude. I don’t want to miss anything. I just keep plodding along.” To be honest, the thought that ran through my mind was, “Is there no end in sight?” But, I had made a commitment to provide for her care. It now just felt like a hopeless situation.” pp.24-25.
Susan Diamond’s blog entry “When Aging Parents Can No Longer ‘Do.’ Ways To Empower So They Can Continue to ‘Do.'” is about empowering aging parents: http://helpparentsagewell.com
I’d like to share a few more examples of empowering aging parents. When my MIL moved from Florida to our hometown, she bought a pontoon boat. This was something she always wanted. My husband was the captain and we took her boating frequently with family and friends. She’d strut out of her retirement community building with her jaunty pink cap to go boating—and I knew she was “showing off” a bit for the other residents. Unfortunately, she fell in the bathroom after a day on the boat and broke her tailbone and pelvis. That was the end of the boating, and the beginning of the vicious cycle of falls, hospitalization, and nursing home rehabilitations.
My MIL then moved in with us and I was her primary caregiver. We had two good years before the next decline. I took her to the senior center twice a week to play bridge. Sometimes we would have lunch and bridge parties at our home. Best of all, she was able to participate in all our family celebrations. When the grandchildren were around (and running amok), she liked to say, “I started all this.”
Pneumonia and congestive heart failure began to ravage her body and she started receiving hospice services. Even then, we put a lot of emphasis on maintaining social relationships and activities. Hospice loves to come in and help people enjoy everything they can do in life. Her hospice group supplied MIL with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter.
Even if the last two years in our home became extremely difficult, I feel good that we did the best we could to empower my husband’s mother.
Carol Bradley Bursack wrote an article in Agingcare.com: http://www.agingcare.com entitled Elder Care Needs Can Change in an Instant. She gave several good examples from her own (multiple) caregiving situations, as well as a list of suggestions to be prepared for situations that arise. I commented by reporting a story about what happened to one of my “caregiver responders” in “What to Do about Mama?”
Life is so fragile. One of the caregiver responders in my book (see Katie’s Story “What to Do about Mama?” p.170) was caregiver for her mother and mother-in-law in her home during two different timeframes. She had brain surgery for an aneurism in December 2013. Like your uncle, the surgery went wrong, and she had surgery again the next day to relieve the pressure on her brain. She was in a coma for 6 weeks. She now has the use of only one limb–her right arm–and lives in a nursing home facility. She’s only 65-years old. This vivacious and giving woman is now locked in her body and generally confined to her environment. Her life was irrevocably changed the instant her surgeon punctured the blood vessel in her brain. Frankly, I would prefer to die of a burst aneurism than to live as she is living. But that is a value judgment we must all make for ourselves. Although she and her husband considered that she might die during surgery, they did not consider the option that she might live impaired. Sad. Tragic. There aren’t enough adjectives to describe the breadth of what happened to “Katie.”