Posted: October 1, 2014 Filed under: Miscellaneous | Tags: Alzheimer's disease, caregiving, murder mystery, novel
I’ve been away visiting my daughter, who moved away with her family (and three of my grandchildren) in August. I’ve been a spoiled grandma. They lived here (15 minutes away and in the same zip code) since grandchild #1 was one month old. Anyway, while my husband drove, I had the pleasure of reading a book uninterrupted: This is my 5-star review of Going Home by Sharon Marchisello.
Ernest & Edgar Literary Blog
by Barbara Matthews
The doorbell rang…” and in through that doorway Sharon Marchisello issues forth one bombshell after another in her contemporary murder mystery, Going Home.
Michelle DePalma arrives at her mother’s home to find that the door is uncharacteristically wide open. Upon entering, she finds a young woman dead on the floor with her mother hovering nearby—seemingly unaware of what has taken place in the foyer of her home.
As Marchisello weaves her intricate tale, the doorway introduces:
- Unknown family: “I’m Isabella Rogers, and this is my daughter, Giovanna. I’m your daughter-in-law.”
- A policeman: “Michelle, I’m afraid the evidence is pointing to your mother.”
- A man with a raised baseball bat: “Where’s that crazy old broad that killed my Brittany?”
- A potential suspect who appears in: “The same vehicle I had passed on my way up the street the day I arrived, the day Brittany had died!”
View original post 126 more words
Posted: August 8, 2014 Filed under: Assuming Caregiving Responsibilities | Tags: baby-boomers, burden, caregiving, caregiving-book, children, commitment, eldercare, grandchildren, responsibility, role-model, support
I often hear caregivers express different perspectives about their own children’s involvement in the caregiving situation. If we are embroiled in a difficult experience, of course we don’t want a like-burden for our kids. But is it really a good idea to shelter them from all responsibility?
As I said in What to Do about Mama? “Baby boomers are on the precipice—getting ready to fall off and land firmly on the backs of our children’s generation. And they are so young! They are, after all, our children!” (WTDAM p.1)
I think I can safely say that none of us wants to be our children’s
ball and chain.
Some folks see caring for parents as a given:
- “I’m not really sure what I thought about caregiving in the beginning other than it was what needed to be done, and as their children, this is what we do for our parents.” (WTDAM p.86)
But, in spite of any stated “willingness” to assume caregiving responsibilities, we are resolute in our desire to not saddle our own children with like-obligation.
- “I know I don’t want the roles to be reversed and hope I never to get to that point.” (WTDAM p. 115)
- “Given my experiences, I just hope I will have saved enough money so I can hire help, too, should the need arise. I certainly don’t want my kids to end up with this much responsibility for my later care.” (WTDAM p.120)
- “We want to minimize the impact on our daughter, who is five hours away with a very busy young family.” (WTDAM p.187)
Yet others point out their perception that caregiving was a positive example for their children, expressing the hope that the experience would contribute to their children’s personal growth.
- “I feel it taught my children many valuable lessons as well.” (WTDAM p.57)
- “I think it was wonderful for my two children to witness how we cared for their grandmother. We always gave her respect and showed gratitude for all that she had done for us. She needed us, and we were there for her. Although my children (young adults) were involved in the process, I probably would have involved them even more.” (WTDAM p.196)
Some were pleased with the contributions their children made.
- “Each of our adult children had an area in which they were able to offer help and advice; each offered to do what he or she could do from a distance. Our family has drawn together as we helped each other through this.” (WTDAM p.146)
Others were not.
- “I was disappointed that my children did not develop a more loving relationship with their grandmother.” (WTDAM p.171)
- “My family had difficulty coping with the time I spent on my mother’s demands. They felt resentful at times. My children have their own lives now; they support me, but not my mom; they visit only at my request.” (WTDAM p. 219)
Some children expressed gratefulness to their parents for taking care of their grandparents.
- “I know from a personal perspective (and one of NOT being a full-time caregiver) that I enjoyed having my grandparents living with my mom. I didn’t worry about them being alone or having to care for themselves as they got older. Plus, it was enjoyable for me having the whole family together under one roof when I visited. As far as my grandparents were concerned, it was a very pleasant experience for me.” (WTDAM p. 139)
- “My daughter said, ‘Thank you, Mom, for taking care of my Grandma and being such a good example for me.’” (WTDAM p. 28)
In my own caregiving experience the greatest amount of support that we received for immediate and unplanned caregiving needs was from our son and two daughters. They involved their grandmother in all their family functions, brought their children frequently for visits, picked her up from the senior center when needed so that I could attend support group, and sometimes either visited or took her to their homes when we had no other coverage. The girls sometimes shopped for her when she needed clothing items or OTC medication, and returned and exchanged the items if they weren’t “exactly” right. Their support for their grandmother went well beyond what we had expected.
It fulfills me to know that my husband and I were good role models for our grown children. Keeping their interest in mind, I saw caregiving as an opportunity for a “teaching moment,” (well, actually more than a moment), where they would learn and internalize the real meaning of family commitment (and never did our children disappoint).”
We are glad that our grandchildren were able to know and love their great grandma, and that we gave my husband’s mother the gift of our children and grandchildren. We are proud of the love, support, and appreciation they showed her.
- “Most importantly, at least from my perspective, was that she was central to the active life we were blessed to have with our family—three of her grandchildren and eight of her great grandchildren. She was always concerned about whether the little ones would remember her after she died. A short while ago the oldest said to me proudly, ‘I was the last great grandchild to talk to Great Grandma.’ She would be pleased.” p. 206
So, no matter the perspective, ultimately our children will experience pain related to our decline and our passing. They will discover that they cannot control the process of dying. And although we cannot, nor should we, protect them from the responsibility that lies before them, maybe we can at least prepare well enough that their road will be a little smoother to travel than ours has been.
Posted: August 4, 2014 Filed under: Emotional and Physical Challenges | Tags: burden, caregiver-decline, caregiving, change, CHF, decline, inevitable, priorities, rationalization, slippery-slope
I couldn’t help but notice the name of the poem by dementedgirl was the same as a heading in my book, What to Do about Mama? Obviously the concept is the same: the accelerated decline or our care receivers–despite our best efforts to maintain control and thwart the inevitable.
The Politically Incorrect Alzheimers Poetry Blog
It’s a slippery slope that we live on these days,
Mum-in-law’s changing in various ways,
After three years of “relative” stability,
She’s suddenly losing all of her abilities…
The days of the week to her are no longer clear,
Gaps in her functioning starting to appear,
A fridge full of food that is covered in mould,
Aggression and paranoia starting to take hold…
Increasing confusion, she’s slipping away,
It’s growing more obvious now by the day,
Hostile to the carers, rude to husband and me,
I shudder to think as to what might still yet be…
It’s all expected – doesn’t come as a surprise,
Reading stories of others has opened my eyes,
If I knew in advance, I could start to prepare,
But still somehow I am always caught unawares…
It is all so sad, but somehow all inevitable,
Still, that doesn’t make all this any less terrible,
It’s a slippery slope that we live on these days,
Dealing with this new and worse Alzheimer’s phase…
Posted: February 22, 2014 Filed under: Emotional and Physical Challenges | Tags: caregiving, caregiving-book, commitments, contracts, expectations, family, responsibilities
Debbie Williams-Maclean’s discussion of the family meeting is right on. As I’ve stated in “What to Do about Mama?” (p. 54):
“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.”
Although we initially had a family meeting in our own caregiving situation, we were not specific enough about expectations, responsibilities, and commitments. After my mother-in-law had been living with us for two years, I started to attend a support group, which led to a second family meeting. This excerpt from “What to Do about Mama?” (pp. 12-13) describes that experience.
“The group leader suggested that we try to schedule a family meeting. I spoke to Shelley about the idea, which led her to call her other siblings and schedule one. Shelley also suggested we make a list identifying “What is Working and What is Not Working” (Shelley is a social worker), to distribute to the family beforehand.
David and I worked very hard on our “assignment.” We wrote openly and honestly about objectives, environment, health, communication, socialization, and family support—enumerating the positives and negatives in each category. What was “heard,” however, were only the “criticisms” regarding the unwillingness to take risks and make sacrifices, requirements to schedule respite visits a year in advance, “can’t do” attitudes, elevating other priorities over and above Mom, and the second-guessing of our decisions. At the meeting, David’s siblings reacted defensively and angrily. I assume much of that stemmed from guilty feelings. They made comments such as, “You don’t understand the pressures of our jobs.” The meeting was stressful and emotionally exhausting. I had to leave early to babysit grandchildren, and the meeting continued with David, his siblings, and now their mother, too.
After I left I felt anxious and sick to my stomach. I was worried that the meeting set us all back more than it had moved us forward. But later, when David joined me for our overnight babysitting stint, he expressed that he was satisfied with what had occurred. He said that the process was cathartic for him; that at least we got a response out of his siblings. Scott had apologized for the remarks he had made to me, and everyone agreed that ineffective communication was the main problem.”
As Debbie also says in her entry Person-Place-orThing, “In my everyday quest to devour as much information on the subject of Caregiving, I run across all sorts of articles. Debbie is certainly right on again. And I will add that it a 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.
Posted: February 20, 2014 Filed under: Miscellaneous | Tags: caregiving, caregiving-book, questionnaire
The material for “What to Do about Mama?” was gathered from caregivers who responded to the following questionnaire. Reading the questionnaire will get you thinking. Reading “What to Do about Mama?” will help you formulate a plan of action.
Wouldn’t it have been great to have a “manual” that would have given you an idea of what to expect in your role as family caregiver?
We are interested in writing a book about caregiving based on our own experiences as well as yours. The purpose of the book is to help others by sharing caregiving experiences. Additionally, this is an opportunity for you to express feelings you may have been silently harboring.
Thank you for your willingness to answer the following questions. Please use anecdotal examples to clarify your responses when possible.
If there are questions that don’t relate to your experience, feel free to leave them out. You may answer anonymously; no one will be identified in the book. Thank you for your contributions and your cooperation.
1. For whom do/did you provide care? What is/was your relationship?
2. How did you become involved in your role as caregiver?
3. Which other family members are/were involved in this caregiving relationship? What are/were their roles?
4. Were these roles discussed and planned ahead of time, or did they just evolve?
5. How well do/did other involved parties fulfill their responsibilities and your expectations?
6. Describe your role as caregiver and how it changed/has changed over time.
7. What actions did you take in order to meet changing/increasing needs?
8. Identify unforeseen areas of difficulty and how you handle/handled them. Did you enlist outside help from agencies, paid helpers, volunteers or
9. How would you describe your overall caregiving experience? What are/were the positives and negatives?
10. How has caregiving affected your physical and emotional health? What have you done/did you do to cope with the stresses of caregiving?
11. Did you join a support group or receive counseling? If so, please describe how well support groups/counseling fulfilled your needs and
expectations. What do you see as the difficulties and the benefits of support group participation or counseling?
12. How have family relationships changed with all who were involved?
13. How did you feel about caregiving initially, and how did your emotional reactions change before, during and after your caregiving experience?
14. How do you feel the emotions of the other concerned persons affect/affected their actions?
15. Looking back, would you assume your caregiving role again? What would you do differently?
16. If your role as caregiver has ended, have there been residual difficulties or challenges that resulted from your caregiving responsibility?
17. How were finances handled? Were you compensated for your role as caregiver? Did financial issues create hardship or conflict for you and other
18. Have there been difficulties regarding the logistics of allocating belongings and settling an estate?
19. What recommendations would you give to others who find themselves in caregiving situations?
20. Please address any issues or concerns that weren’t covered by the above questions.