This is the final article in MinnPost’s yearlong occasional series on late-in-life health care.
In this series, MinnPost has chronicled the fractured nature of U.S. health care and explored ways to improve it for patients with chronic illness. Reporters have covered everything from medication management to mobility, housing and caregiving issues. For this last article, however, we’ve turned to those who know the issues most intimately. We asked MinnPost readers to describe their own experiences — either as a late-in-life patient or as a relative or caregiver of such a patient — and to offer advice to those of us who have yet to deal with chronic illness in the family.
We were gratified to see frank openness, concrete suggestions, even bits of humor — all offered with a generous spirit.
A sampling of readers’ advice:
- “Question the doctors and specialists about everything — treatment pros and cons, long- and short-term medication side effects. Once you have asked these questions, then go on the Internet — otherwise the online information will scare/confuse the pants off you.”
- “Ask for help. Ask for help. Ask for help. This is not the time in life to do it on your own.”
- “When you see that things are not right or safe, fight to make them right. It could save many lives through time.”
- “Keep up your hope, don’t dwell on the negative, and have faith.”
We’ve selected the responses of 11 MinnPost readers; here they are, in their own words:
Sue Leaf
Center City, Minnesota
Sue Leaf’s mother recently died, probably from Alzheimer’s disease, at age 86. She had been in assisted living before her death.
MinnPost: What was it like, caring for your mother?
Sue Leaf: There’s a constant, nagging feeling that you’re not doing enough, that you could make this person so happy if you dropped your own life and devoted your full attention to her.
MP: What has surprised you most about your experience?
SL: The kindness of the lowest-paid staff.
MP: What has been most rewarding to you at this time? Were there any “gifts” of this situation?
SL: The physician changed Mother’s meds to include a “mood stabilizer.” Two weeks later when I visited, suddenly I felt I had my mother back, whom I had not fully experienced, due to the ravages of Alzheimer’s, in many months. She was forgetful, yes, but somehow, fully my mother. But this reappearance lasted only that visit. The next week, she was “gone” again.
MP: What do you wish were different about the care your mother received?
SL: I wished it had been possible to take her into my own home.
MP: What did you learn about yourself during this period?
SL: That I am better at compartmentalizing than I realized — and that the ability to do that is the mark of a healthy person.
MP: Given your insights, what advice would you give to another family that is trying to be proactive in approaching late-life care?
SL: Assisted-living facilities have a lot of turnover and will never be perfect. Look for one where the staff is relentlessly upbeat and positive. A positive attitude in dealing with older people who are cranky for all sorts of reasons is not a small thing.
MP: Other comments you’d like to share?
SL: I had three things I did with each visit: 1) Set a time limit to each visit: 1 hour, 2 hours. Because you could spend the entire day there and it could be overwhelming. 2) End each visit on an upbeat note. No matter how sad, depressing, irritating the visit, I would kiss Mother, tell her I love her, tell her I was glad I saw her and tell her I will see her next week. 3) Give yourself a little “treat” to anticipate afterward. For me, I’d get a latte in a coffee shop, sit at my laptop, and write about the visit — to record Mother’s level of functioning, my thoughts and emotions and anything else that could help me understand how life was winding down for her.
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Julie Novak
St. Paul
Julie Novak’s mother died in December at 74 after being diagnosed with brain cancer earlier in the year. Julie and her siblings took on the caregiver/decision-maker role.
MinnPost: What was it like to help care for your mother?
Julie Novak: Take a vibrant, active, engaged 74-year-old woman and tell her she has stage 4 glioblastoma. She’s a born fighter, so she has surgery to remove most of the tumor, then six weeks of chemo, radiation and she’s doing pretty well, then — bam! The side effects of the steroid (used after surgery to keep brain swelling to a minimum) as well as side effects from chemo and radiation all hit at one time. Before her death she is bedridden, under hospice care, and unable to communicate. All the while you are guessing, troubleshooting, going on hunches, making phone calls you never thought you’d have to make and having conversations that only a few months before were unimaginable. Oh, yeah, and working full time, caring for your own family and trying to keep your sense of humor intact.
MP: What surprised you most about your experience?
JN: How little coordination there is between doctors/specialists, as well as a lack of coordination for resources. The internist doesn’t want to deal with the very apparent side effects of the steroid — that’s the oncologist’s specialty. The oncologist said the internist can help monitor the side effects from the steroid since she was done with chemo. In dealing with the cancer/radiation/regular internist doctors — I’d tell them all to go jump in the lake. Give me an RN, a hospice nurse and a pharmacist any day to give me the true lowdown on drug benefits, side effects, alternative options, etc. The doctors won’t usually share much of this with you in any detail as they are beholden either to the pharmaceutical companies or to their own specialties.
MP: What has been most rewarding to you at this time? Were there any “gifts” of this situation?
JN: To have found the private caregivers for our mother — simply priceless!! Our mother had the benefit of retirement savings, which were spent to give her private care at home. Very expensive (No, Medicare does not cover this!), and so very worth it for her end-of-life happiness — and ours. The gifts of time from friends and family have been wonderful. Our mother had a wide network of friends who dropped by for visits when she was up to it, as well as sending cards and notes. We read every single one to her several times over. Knowing she was being thought about and cared about was wonderful for her.
MP: What do you wish were different about the care your mother received?
JN: By sheer luck we found the caregivers we did. We had used an agency early on for a bit. The problem is they are generally not trained to give the level of care my mother needed, nor could they promise the same caregivers would show up each time. So you are re-educating different people for every shift. It’s exhausting and sometimes dangerous occurrence, because if they miss a scheduled medication (as a result of not being familiar with the patient) there are serious consequences. The private caregivers we hired were just wonderful.
MP: What did you learn about yourself during this period?
JN: That my brother, sister and I are pretty damn resourceful!
MP: Given your insights, what advice would you give to another family?
JN: Talk to friends, neighbors, co-workers, church members, etc., to help you through this. THEY are the best source of sharing honest experiences — good and bad — and will have real-life examples to share. Question the doctors and specialists about everything — treatment pros and cons, long- and short-term medication side effects. Once you have asked these questions, then go on the Internet, otherwise the online information will scare/confuse the pants off you.
MP: Other comments you’d like to share?
JN: Get your health-care directive and will together. If possible, while the patient is able, have those difficult conversations: about funeral planning — the actual service piece of it (music, readings, etc.), not just having a burial plot or saying they want to be cremated — about what to do with belongings in the home, financial aspects, etc.)
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Pat Fleetham
Minneapolis
Pat Fleetham, 65, had two cardiac stents last April, and recently had kidney cancer surgery.
MinnPost: What is most challenging (or most rewarding) about your day?
PF: I am alive and the prognosis is good. Doing part-time work in the humanitarian field — helping people. Seeking/defining a new “normal” life after the medical issues this year and also retirement.
MP: What has been most helpful for you during this time?
PF: Excellent medical care that is available in this country. Although medical-care coverage has required a lot of time and effort, I am thankful for it. I can’t imagine having my challenges without health-care insurance.
MP: What one thing would make your life better?
PF: Actually my life is pretty damn good. I wish I had a better social support system.
MP: What have you learned about yourself in this process?
PF: Having had several surgeries throughout my life, I am blessed to have survived all of my medical issues. I am fortunate; I don’t blame anyone for my medical challenges. I am not mad/angry and asking, “Why Me?”
MP: What do you wish were different about your care?
PR: More personalized care. It is tough to get answers and receive personalized attention. The medical field is so specialized and profit-oriented it does not allow for a good doctor/patient relationship. In fact, there does not exist a relationship.
MP: Based on your experience, what would you want others to know that could be helpful for them in a similar situation?
PF: Listen to your body. See a health-care professional if there is ANY symptom. Early detection is the best approach. Make the time and seek out a medical opinion. You never know what “hand” has been dealt to you.
MP: Any other comments or stories you would like to share?
PF: I am so thankful for living in Minnesota and have the ability to receive first-class medical treatment. I regret the entire world cannot receive the same medical care we feel entitled to. Keep up your hope, don’t dwell on the negative, and have faith.
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Luci Botzek
Elk River
Luci Botzek’s mother died just before her 89th birthday last year. Prior to that she had fallen in her parking lot, resulting in four brain bleeds and other effects.
MinnPost: What was it like to help care for your mother?
Luci Botzek: She spent about a week in the hospital and then was sent to a care facility for what turned out to be a month. She then was unable to live on her own and had to move into assisted living. It is very frustrating not understanding all of the medical issues, often being uncertain as to what questions to ask and not necessarily having professionals who have a real understanding of the role of the family members and how to provide us with the needed information. During the times that Mom was barely conscious, I was afraid to leave her for very long, not knowing how much care and attention she was really receiving.
MP: What circumstance put you in this role?
LB: I am the oldest of two children and the only one able and willing to step up and assist. I was increasingly supportive of Mom during the previous couple of years to the fall, which was one of several, just the most severe.
MP: What surprised you most about your experience?
LB: I have no idea what would have happened to my Mother had I not been there. She could not have “protected” herself.
MP: What has been most rewarding to you at this time? Were there any “gifts” of this situation?
LB: The gift of the time with my Mother was probably the highlight of my relationship with her. As difficult as the times were, I would not trade them for anything. I wish I could have had that same opportunity with my Father. It made her death even more painful but the quality of that time I would not trade for anything, other than of course to have her not have gone through such a traumatic situation.
MP: What do you wish were different about the care your mother received?
LB: For the most part it was very impersonal and routine. For many of her needs, I had to seek out staff to secure the necessary care.
MP: What did you learn about yourself during this period?
LB: That I was able to learn how to work the system for the benefit of my Mother quickly.
MP: Given your insights, what advice would you give to another family?
LB: Have these discussions before they become the focus of your reality: Understand your loved one’s true intent on end-of-life measures. Have all of the appropriate legal documents in place before they are needed. Be vigilant in care facilities, whatever they may be. Be physically present at unpredictable times.
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Jody Cohen Press
St. Paul
Jody cared for her mother for 3½ years. Her mother recently died from pancreatic cancer six weeks after her 90th birthday.
MinnPost: What was it like to help care for someone who has a serious illness?
Jody Cohen Press: It’s life-changing.
MP: What has surprised you most about your experience?
JCP: Failure of society to understand how to speak to people with hearing loss.
MP: Were there any “gifts” of this situation?
JCP: The gift of caring for a parent who, throughout my life, has always been there for me.
MP: What do you wish were different about the care your mother received?
JCP: No change; her care was excellent.
MP: What did you learn about yourself during this period?
JCP: You do what you have to, and you can do more than you ever thought that you could.
MP: Given your insights, what advice would you give to another family that is trying to be proactive in approaching late-life care?
JCP: Understand AND accept that you can’t fix everything. Know what you can fix and what you can’t. Be sure you have a good support network.
MP: Other comments you’d like to share?
JCP: We’re living longer but not necessarily living better. If we want to live healthy, active lifestyles in our senior years, we had better live healthy, active lifestyles now.
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Marlene White
Coon Rapids
Marlene White’s father, 83, has thyroid cancer.
MinnPost: What has it been like to help care for your father?
Marlene White: It has been emotionally and physically exhausting. The coordination of care is so time-intensive and complex. Some things that you really, really need are hard, if not impossible to get (like respite care). Some of the services you really need are not permitted because of Medicare rules. For example, my father cannot get speech therapy as an out-patient, after a tracheostomy, if he has a nurse coming to the home to care for the new trach, even if the doctor says that the speech therapy is essential and time-sensitive.
MP: What circumstance arose that put you in your role of helping your father?
MW: I am helping to coordinate medical care since the health system is so difficult to navigate. I work in health care, and I still find it very difficult at times. I find myself caregiving to my father, but also my mother, who is my father’s primary caregiver. Who is going to take care of my mom now that she has become a 24/7 nurse?
MP: What has surprised you most about your experience?
MW: We were surprised by the lack of training we received for my father’s new medical needs and how hard we’ve had to work to coordinate his care. There were so many wonderful and caring individual doctors and nurses that we would meet along our journey. What a blessing!
MP: What has been most rewarding to you? Were there any “gifts” of this situation?
MW: It surprised me how precious our family time has been as we sat at my father’s bedside as a family, just the four of us, talking about life and death and [recently] as my father was in the ER, after a near death incident, we were watching a YouTube video on a cellphone so that we could teach my brother how to tie a good Windsor knot in his tie.
MP: What do you wish were different about the care your father is receiving?
MW: I wish my mom had nursing help at home for my dad so she could get out, even a little, because it’s so hard for her to be home 24/7. Family can only do so much — we have to keep our jobs and have our own families to take care of, too. The juggling of it all is very difficult. My mom barely has time to cook for herself. (My dad is fed through a G-tube now.)
MP: What did you learn about yourself during this period?
MW: I’m stronger than I thought. My mom is amazing. My dad is vulnerable and anxious. I WANT to care for my dad. I don’t want to have to choose between my job/livelihood and caring for my dad and mom during this precious time. You only get to do this once. I almost need help at home so that I can help them. I love my parents fiercely. My brother and I are closer now than ever.
MP: Given your insights, what advice would you give to another family that is trying to be proactive in approaching late-life care?
MW: Ask for help. Ask for help. Ask for help. This is not the time in life to do it on your own. Work toward what is important to your loved one and your family. Don’t be passive in your care. You get to make a lot of decisions along the way. Be active in the decision-making process. These are experiences that all families go through and all people must journey.
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Marlys Nitchals
Leech Lake, Minnesota
Marlys Nitchals’ husband, Jim, is 69 and is being treated for a degenerative neuro motor disease. He rather rapidly developed trouble with mobility and cognition about two years ago.
MinnPost: What has your experience been like?
Marlys Nitchals: It has been life-changing. I am totally responsible for my spouse’s care. I have had to give up most of my own life and activities. It has been nearly impossible to hire someone to help me. Our home is handicap-accessible, but we live on a lake 18 miles from the nearest small town. At present we are staying with our son’s family in California so that they can provide some help. I have found someone who is willing to do in-home care in Minnesota so we will be coming home next month. And hoping that this works out!
MP: What has surprised you most?
MN: How little patience I have and how all encompassing it is.
MP: Were there any “gifts” of this situation?
MN: I have not yet found gifts in this situation. It has given me the opportunity to spend time with my son and his family. But I am often consumed by caring for my husband and not able to interact with my grandchildren as I would like.
MP: What do you wish were different about the care your husband is receiving?
MN: I wish in-home help was more readily available. Many agencies deal only with Medicaid, which we are not eligible for. Also, I certainly wish we had purchased long-term-care insurance.
MP: What did you learn about yourself during this period?
MN: That I am not as altruistic as I may have believed myself to be.
MP: Given your insights, what advice would you give to another family that is trying to be proactive in approaching late-life care?
MN: Purchase long-term care insurance! Also get as much help as you can to maintain your regular life. I had to give up a part-time job at a library, which I loved.
MP: Other comments you’d like to share?
MN: We need to find a better way to care for people. I know that Denmark has state-funded in-home helpers. This can be a devastating experience. It is as if I lost my long-time spouse and now had to take a 24-hour-a-day job caring for a physically and mentally handicapped stranger.
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Lorie Guilford
Port Townsend, Washington
Lorie Guilford’s mother was treated for Alzheimer’s disease before her death at age 82.
MinnPost: What was it like to help care for someone with a serious illness?
Lorie Guilford: I experienced real compassion for my mother.
MP: What circumstances arose that put you in this role?
LG: I wasn’t intending to care for my mother; I had her in two homes, one residential home and one with a much bigger operation with a separate dining room. Both failed my mother, and so I needed to take her out and care for her for her last two years of living.
MP: What surprised you most about your experience?
LG: That I could keep my disposition in spite of her situation with a disease that was taking her away from me. I wanted to be there for her in a happy way, helpful way and never getting angry about her disease.
MP: What was most rewarding to you about this experience? Were there any “gifts” of this situation?
LG: That she showed me her love for me and my husband as long as she could. I always knew she loved me, but it was different this time as I am caring for her. I learned I had a lot of compassion; that was the gift she gave me and I sustained it throughout the whole ordeal.
MP: What do you wish were different about the care your mother received?
LG: I was trusting these homes to care for my mother. I would have liked it if the caregivers cared more in handling of my mother as if she were their own mother. She was the worst of the bunch it seems, therefore she required more attention to where she would walk to and what she would put in her mouth. It appeared the caregivers wanted it easier for them. I found out that some doped her up so much more so she would be sleeping and they could leave her alone.
MP: What did you learn about yourself during this period?
LG: That I had a compassionate side for my mother. That’s what enabled me to keep caring for her for two years until her death, and yet I still had my own family and siblings to attend to while doing it.
MP: Given your insights, what advice would you give to another family?
LG: Get all her wishes written down on paper while the parent is cognitive; don’t let that person slide because they don’t want to think about death or end of life. Although with Alzheimer’s they can become irresponsible, not make good decisions and get influenced by someone who is self-destructing the family for their own purpose. Having a plan ahead is better when everyone is amicable; then there may be less misunderstanding and mistrust with family members as they can forget after a while what was discussed exactly. It needs to be an open discussion with all participating siblings and spouse. In this case there was no spouse, only my mom and her children.
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Suzanne Hanson
Silver Bay
At 82, Suzanne Hanson’s mother has multiple medical issues.
MinnPost: What has it been like for you and your mother?
Suzanne Hanson: My Mom, like many people with late in life care issues, has multiple medical issues and needs help managing her medications, getting dressed, doing routine care, going to the bathroom, having food prepped thoughtfully and so forth. Therefore, she has been in various care facilities (care centers and assisted living) for many years. This fall she moved to a new facility. Although they promised many services, they have not been able to provide them as they did not hire the necessary staff.
MP: What do you wish were different about the care your mother is receiving?
SH: There have been problems with the way medication is administered, challenges when there have been falls or other medical issues, poor meal planning and food services, and a lack of social opportunities. In addition, there is an undercurrent of fear among residents (more than my Mom), and both residents and families do not want to complain about poor services because they do not want retribution to be taken out on the residents. I know there are oversight issues for home health care right now, but the assumption that things are going well at these assisted-living or assisted-living-plus facilities is a poor one. Care issues were brought forward to local management and the corporate offices in a very respectful way and little improvement was made. More regulation is necessary to protect these vulnerable adults and to assist caregivers when issues arise.
MP: Given your insights, what advice would you give to another family?
SH: When you see that things are not right or safe, fight to make them right. It could save many lives through time. It also lessens the burden on others who are trying to make improvements (including patients, residents, staff, and family members). I’d also suggest this book, which has excellent advice: “A Bittersweet Season, Caring for Our Aging Parents — and Ourselves,” by Jane Gross.
MP: Any other comments?
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Carol Koskinen
St. Paul
Carol Koskinen advocated and helped care for her mother, who suffered from dementia and Parkinson’s disease before her death in 2006.
MinnPost: What was like to help care for your mother?
Carol Koskinen: Difficult. I was the daughter making decisions for my mom that she would have made if her health had been good (without a chronic progressive disease). The role reversal was emotionally huge for me. Mom’s mind was such that she did not realize I was doing tasks she normally would have performed.
MP: What circumstance arose that put you in this role?
CK: I’m a registered nurse and have a good understanding of the disease process and how to effectively access the health-care system to benefit my mom; she was a good mom and took good care of me. Now it was my turn to help her as her health and mind deteriorated. My brother and sister supported and helped me, but I was the best one to be the spokesperson and advocate for my mom.
MP: What surprised you most about your experience?
CK: I had to repeat information many times to HCP and workers even though it was recorded in her medical file, (for instance, allergies — the medications my mom could not receive due to her Parkinson’s); I made it a point to be at every Care Conference when my mom was in skilled nursing; I would verbally review certain important items regarding the care of my mom. (For instance, do not resuscitate and do not hospitalize — keep her comfortable in the nursing home.)
MP: What has been most rewarding to you at this time? Were there any “gifts” of this situation?
CK: Spending quality time with my mom. She did not always realize I was there and was interacting with her. I believe all humans are more than just intellect — we are also spiritual. Though my mom may not have known cognitively that I was there, her spirit knew I was ministering to her.
MP: What do you wish were different about the care your mother received?
CK: Not everyone in health care treats a human with respect when the person is old and has a major health problem; I would have liked for each caregiver to understand the sacredness of life even though that life is old and in poor health. We express that sacredness with treating the person with gentleness and respect!
MP: What did you learn about yourself during this period?
CK: I had some patience and needed more! But that particular characteristic is strengthened during difficult times. It was deeply satisfying to help my mom even though she was not always aware of the help.
MP: Given your insights, what advice would you give to another family?
CK: Respectfully ask questions and expect clear answers! Do not be intimidated by health-care professionals. Be present for your loved one. I visited most every day in her independent apartment, in assisted living and skilled nursing facilities. It seemed as though my mom received better care because the staff knew I would be there and would deal with any problems immediately. (“The squeaky wheel gets the grease.”)
MP: Other comments you’d like to share?
CK: As an RN with many years of experience in ICU, I know that health science cannot fix every health problem. Just because something can be done does not mean it should be done. Many of the interventions that are used to save or extend life are quite painful. The person who is at the end of their life may linger and languish. That person may never return to their normal [health] or may pass away. Ask the hard questions! Be prepared for hard answers!
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Amanda M. Becker
Chesapeake, Virginia
Amanda Becker’s father is 77 and is in post-stroke rehabilitation and post-cancer treatment.
MinnPost: What has it been like to help care for your father?
Amanda M. Becker: My father is a brilliant man who would talk about anything. Seeing him have difficulty in even finding the right words was heartbreaking. The physical care was exhausting as well for myself and my stepmother. My father was overwhelmed by the two significant declines in his health that happened at the same time, it seemed defeating. It is so sad to watch.
MP: What circumstance put you in this role?
AB: I am the youngest of three and the one with most flexibility and knowledge. I assist my stepmother whenever possible to give her a break.
MP: What has surprised you most about your experience?
AB: How little I knew … even in working in health care for the last 15 years and specifically working in end-of-life care, I thought I would have no problems. In reality I found the experience to be emotionally, physically and spiritually draining. I was not prepared for the grief I was experiencing for the loss of a lot of the aspects of the father whom I love dearly.
MP: Were there any “gifts” of this situation?
AB: Time is the biggest gift. I am usually running all over the place, never sitting down, never having a moment. When I was caring for my dad, being able to sit with him while providing his care and really talking to him. I learned so much about his childhood and young life. It was amazing. I thought I knew everything about him. Lol.
MP: What do you wish were different about your father’s care?
AB: I would have involved more psychological services earlier.
MP: What did you learn about yourself during this period?
AB: I learned that just understanding how the process works doesn’t make being a caregiver easier. It is just one piece of the puzzle. That even though it is hard, opening up the conversations about the what-ifs is so important.
MP: Given your insights, what advice would you give to another family?
AB: Be prepared and ask for help from everyone and everywhere. Utilize schedules and tasks to help in acute situations and then should things be stable, celebrate. We had a thank-you dinner for everyone who has been helping. Nothing fancy, just a moment of appreciation.
MP: Any other comments?
AB: My dad is making great progress in his ability to regain his intellectual abilities. We were told over and over that he was probably at his best baseline. I believed that having had the cancer treatment two weeks post-stroke put him behind in his recovery journey (kind of like a premature baby) and that if we kept up the interventions he could continue to get stronger. We were right and he has been able to return to teaching, his biggest love. Never stop advocating for your loved ones, and don’t be afraid to talk about the what-ifs. We were all thinking about them anyway!
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The series is funded through a regrant by Allina Health from the Robina Foundation and is conducted with media partners Ampers and Twin Cities Public Television (tpt), whose documentaries are focusing on Minnesotans enrolled in a multiyear Allina study; for more information and resources, see the LifeCourse webpage.
The entire series can be read here.
