Posted: August 8, 2014 | Author: Barbara G. Matthews | 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 | Author: Barbara G. Matthews | 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…
Thoughts on “Slippery Slope”
August 4, 2014 at 8:57 pm
SLIDING DOWN THE SLIPPERY SLOPE
Mom began to have more episodes of bladder or bowel incontinence and falls, sometimes one in conjunction with the other. She once fell in the bathroom at 3 a.m. because she was trying to clean herself up without waking us. Falls resulted in terrible skin tears because her skin was so fragile. Wound care was becoming one of the most difficult aspects of caregiving.
Another time, I had just gotten my mother-in-law cleaned up in the shower after an “accident” and was in a hurry because I had a doctor’s appointment myself. The appointment was important because I was experiencing shooting pains up the left side of my head. My mother-in-law had to sit down on the commode again, so I had to leave her sitting there waiting for my daughter to arrive to help her grandmother get dressed and have lunch. At the appointment I was diagnosed with shingles, an ailment common to caregivers.
After the next incident of incontinence a relatively short time later, my mother-in-law said, “I appreciate all the things you do for me. I appreciate your patience.” That was the first (and last) time she ever expressed her appreciation to me; it was good to hear.
My mother-in-law’s decline was especially difficult for my brother-in-law; his wife made a point to express this to me very specifically. He had no confidence in his ability to be alone with her. With tears in his eyes, he told me that he saw himself as the “last bastion of propriety” in his relationship with his mother. I did understand how difficult it is to watch a loved one’s decline; his brother, after all, faced it every day. I felt, however, that was not an acceptable excuse for not assuming responsibility. During that same conversation, his wife also made this comment: “My priority is my children. I am only a daughter-in-law.” I was amazed.
After Mom returned from the graduation trip the previous May, I had a discussion with her regarding my role as caregiver. I told her that I realized that she did not like me to speak up at the doctor’s office or for me to make comments about her nutritional needs. I told her that I would take a less aggressive approach with her healthcare, but that I would expect her to vocalize her wishes to me so I could proceed according to those wishes. Over the next several months I noted a gradual increase of edema in Mom’s legs; she was gaining weight, approximately two pounds per month. She was going to the doctor regularly; her weight was always documented; the doctor frequently looked at her legs. Mom never specifically brought up concerns about the edema with the doctor during that time—and neither did I.
Sometimes, no matter how hard you try, you just cannot stop nature from taking its course. One year after her initial pneumonia Mom became sick again, but this time it was worse. She was hospitalized with pneumonia and congestive heart failure (CHF), and the doctor made a referral for a pulmonary specialist to review her case. Her diagnosis was bullous emphysema; the small bubbles in her lungs had become large, limiting oxygen absorption. The doctor described her condition as “very bad.”
Two days later, David and I met with her doctor. Her oxygen needs had increased to 8-12 liters and were too great for her to be admitted to a nursing home. A hospice referral was recommended to facilitate our ability to take her home. David talked to his mother privately about the situation. When I entered the room, she had a forlorn look on her face. Later that afternoon David called me. Hospital personnel discovered that Mom’s hospital equipment was not functioning properly and that her oxygen needs were actually 2-3 liters. Hospital staff proceeded with getting Mom accepted into a nursing home for rehabilitation once again.
Mom was in the nursing home from mid-December until the beginning of February 2010, despite the fact that she had fallen in the facility a week before her discharge. I did not feel she was strong enough to be discharged, and indeed, she had two falls the first weekend home. Once again, we began in-home services: physical therapist, occupational therapist, and RN. I made sure to give the RN a heads-up before she came; Mom looked like she’d been beaten up due to multiple skin tears from her falls. On February 8 my knee locked up while squatting to dress Mom’s six wounds. The knee became difficult to unlock, and during subsequent episodes, remained locked for up to 12 hours at a time causing me to limp and walk on tiptoe. Two times Mom and I almost went to the ground together!
Posted: March 27, 2014 | Author: Barbara G. Matthews | Filed under: Emotional and Physical Challenges | Tags: burden, caregiving-book, decisions, difficult-discussion, discontinuing-drugs, life-extending-medications |
An AgingCare.com (http://www.agingcare.com) question: “I cared for my parents until they passed. What do I do to make sure I do NOT put my kids through that?” Asked by Sunflowerpower
What is wrong with dying? I am not so sure that extending life to the point of wringing every last drop of breath out of life is the right thing to do.
That is, unless one has unlimited financial resources to buy professional care 24/7. We should not have to put a price on elder care but for most people, the child or children end up bearing the work.
Are we sure we want to continue extending life when life is a body and no memory? Or a good mind but nothing but pain for the body?
I read these stories about all the caregivers doing their best to care for their parents at the cost of their own lives and it is so sad. Been there, done that.
I am NOT talking about assisted suicide. I am saying if an older person has no realistic future of living life on their own, what is wrong with stopping life-extending medications?
Not being a burden on our children is a major concern of the baby boomer generation, as I expressed on the first page of “What to Do about Mama?”
“I am a baby boomer—part of the ‘sandwich generation’ that is taking care of our elderly parents while still providing support for our children. As I write this, I am feeling that the time has come. 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!” (p.1)
And again on the last page:
“In the light of my caregiving experience, and with the hope that my children will not have to face avoidable stress, I pledge that: 1) I will not leave my children the burden of my messes; 2) If my children become my caregivers I will not to be stubborn and dead set in my ways; 3) I will relinquish control (at least some of it) to them; and 4) When, in my old age, if I do the things I’ve said I won’t—they may, as I’ve told them, ‘Just show me the book!'” (p. 222)
The issue of extending life is also addressed in the book.
“I acknowledge that broaching the topic of death and dying with parents and family members is very difficult and even painful. We may have living wills that specify that ‘no extraordinary measures’ be taken, but how do we and our family members interpret that directive in the midst of a highly emotional crisis situation? The issue is confusing and complicated to say the least—one that presents huge challenges for the elderly and their caretakers.
I would respectfully suggest, however, that it would behoove us all to have this difficult discussion well before the time of need arises so that decisions for treatment are based on our loved one’s expressed wishes.” p. 160
The issue of sustaining life with medications presented a major decision making point in the caregiving situation that motivated me to write “What to Do about Mama?”
My mother-in-law questioned the Hospice nurse about discontinuing her arrhythmia drug citing contra-indications with circulation. She was looking for a “fixable reason” for her poor circulation, which was causing increasingly numerous ulcers to form on her legs and feet. We knew, of course, that advanced COPD (chronic obstructive pulmonary disease) caused by a fifty-year smoking habit, is not fixable, and agreed that it was time to have a family discussion about Mom’s medications. My husband consulted his siblings to assess their opinions about Mom discontinuing her heart drugs. The children were all in agreement that their mother had had a good life, and that they would rather see her go quickly and gently like their father than watch her slowly disintegrate. He then had a very difficult discussion with his mother, and she agreed that it was in her best interest to stop her heart drugs. See full account on pp. 24-26.