This is to be an article on the people you can surround yourself with to help you with your diagnosis/treatment/recovery. A kind of “it takes a village” look at cancer. It may be something that people end up doing intuitively, but we hope this will help those who need some structure after receiving scary news, or fill in the holes for others. I’ll want to talk to you about your “team,” which may include a doctor network; a bff; a patient advocate (sometimes provided by hospital if you ask); a personal advocate to make and take you to appointments; a chemo buddy; a recovery group.
Lives in the tri-state area and kicked cancer with the help of a team of friends/advocates/doctors with specific goals/duties
Heidi Mitchell, New York Post
Category: Lifestyle and Fitness
MarketWatch (The Wall Street Journal) is seeking a New York City area widow or widower to interview, on camera, about financial advice following the death of a spouse so that their experience can help others.
A small camera crew would come to them at a time of their choosing sometime within the next 4-5 weeks. The interviewer will go over questions with them in advance to make sure they are comfortable.
All Current or (Recent Past) Share The Care™ Groups
We are reaching out to you for two different research projects:
1. We would like to find several participants from the same STC group (current or recent past) to offer their feedback in an ongoing STC research study. The method for responding to the research questions allows each person to do so separately from other group members and at one’s own convenience.
Please send your email address directly to researcher. Amy Hegener, at firstname.lastname@example.org with “SAME STC GROUP” in subject line.
2. If you are a STC group member or family caregiver currently (or in recent past) providing support for someone with Alzheimer’s Disease or Dementia we need your perspective via an online questionnaire and/or a telephone conversation, scheduled at your convenience.
This informal research could be very beneficial for an upcoming program to help STC groups supporting someone with early onset Alzheimer’s Disease.
THANK YOU to those of you that have already signed up. Letting you all know that you can sign up for more than one project – and thanking you for your important work to help a loved one or friend and for sharing information that will help so many other people and STC groups.
For me it all began 2009. My mother had recently been diagnosed with hypertrophic cardiomyopathy and refused to take the medicine she had been prescribed. Unfortunately, no amount of yelling, screaming, or cajoling convinced her to heed the doctor’s orders. On July 22, 2009, one day after meeting with the surgeon who was going to repair her heart, she passed away.
My mother’s sudden passing was hard enough to cope with, but on top of everything, my father completely lost it. He had been acting strangely for months prior to her death, forgetting dates and events and seeming out of it and I later found out he had been diagnosed with early onset dementia four months prior to my mother’s death. My mother, not wanting anyone to know, had attributed this odd behavior to a variety of causes including the side-effects of medication and hearing loss. Her sudden death sent my father into a state of shock and accelerated his dementia. In an instant, I became a member of the “sandwich generation” – a generation of people who are taking care of ailing parents while also raising a family.
I’m not alone in the sandwich generation. Almost half (47%) of adults in their 40s and 50s have a parent over 66 and are raising or financially supporting a child. 15% of middle-aged adults are providing financial support to both a parent and a child. While the first statistic has not really changed over the years, the financial burden of caring for multiple generations of family members is growing. One in five of middle-aged adults provide financial support to a parent aged 65 or older.(1)
At the time of my mother’s death my children were 15 and 13 and I was working full-time. While my husband and children tried to help, I still bore the brunt of the driving, cooking, laundry and cleaning at home. With my mother’s passing, I added caring for my father to the load. It was a rough road initially, and at every crossroad with my father’s health today, it still is. Here are a few tips if you find yourself in my shoes.
Prepare. There is a good chance one of you reading this will find yourself taking care of an ailing parent or loved one in the next few years. There is no way to be prepared for the emotional shock of a sudden illness or disability, but you can be prepared.
According to a MetLife Institute study in 2011, women who take time off or quit work to care for a loved on lose an average of $324,044 in lifetime wages, pension and Social Security. Not having a long-term strategy can be costly for your family and affect your own retirement plans.
What type of insurance policies do they have? Do they have long-term care? If they don’t, see how much it will cost to get it. Long-term insurance has been a life-saver for my family. Make sure you have a list of the policies somewhere.
How do they feel about nursing homes? Do they have enough money to cover a nursing home if it’s ever necessary? Research what expenses Medicare will cover. You may want to talk to them about setting up some type of account to cover expenses as expenses add up very quickly.
Make sure they have a Durable Power of Attorney and a will. Having Power of Attorney has been very important in dealing with my father’s declining mental state. Even if the person you care for has full cognitive function today, that can change suddenly, or over time, and you want to be prepared regardless of the situation. There are a lot of scam artists who prey on senior citizens, and if your parent or loved one is in a state of mental decline you want to have some control over their finances.
What type of funeral would they want? Under what circumstances, if any, would they want a DNR (Do Not Resuscitate) order?
If they are in a retirement community in another state, what will your plan be if one, or both of them need help. Will you need to move them closer to you or a sibling? It’s never an easy conversation to have, but have the discussion and make sure you know where they keep their papers, and other critical information. I knew what my parents wanted and what they didn’t want and it made some hard choices a bit easier.
Research. There are lots of organizations out there that can help you. I know that the Alzheimer’s Association helped me tremendously while I was researching my father’s Lewy Body Dementia. Here are a few helpful sites you should consult:
Don’t try it on your own. I was the executor of my mother’s estate, and because my father was unable to do much, I had a lot of responsibilities. Initially I felt as though I had to pay all of the bills, go grocery shopping, take my father to all of his doctor’s appointments, submit insurance papers, do taxes, etc… on my own. It was exhausting. The Elder Care website (www.eldercare.gov) has a lot of resources and can help you find the services you need – from meal delivery, transportation to doctor’s offices, and legal assistance.
I am lucky to have a good network of support between friends and family, but there are also lots of caregiver support groups for us members of the sandwich generation. They are great places to meet other people in your area who are dealing with the same thing. Support groups can be found at churches or synagogues, senior centers, hospitals, and disease-specific organizations (the Alzheimer’s Association has them, for example). AARP also has a caregiving support hotline (877.333.5885) and www.eldercare.gov has a list as well.
Everyone’s situation is unique to their family and we each need to do what works best for us. I’ve made mistakes along the way, sometimes I’ve learned from them, sometimes I’ve made them twice. But I do the best I can, and that’s all anyone can do.
Make friends with your loved ones’ neighbors. When there was a storm that resulted in power loss, we had several neighbors we could call on to send someone over to my Dad’s house to make sure he was okay.
Forgive yourself. This is something my sister and I both continue struggle with. Our motto is, “We do the best we can.” This is our mantra when one of us has forgotten to do something or when one of us feels guilty because my father is sad when we leave. We say this to each other at least once a month. You never feel that what you do is enough, but it is. Each of us does what we can in these situations, and it’s OK.
Stay organized. I have a big filing system for my father’s papers with bills, insurance documents, etc. that I keep at my house. It helps me stay on top of things (most of the time). I also have set up reminders to track when bills are due so I don’t forget.
Time management. Time management is a tough one. Flexibility at work is very important, and another reason why it’s so important that organizations have family friendly policies for their employees. Family friendly work policies not only provide organizational understanding for parents, but also for caregivers. In the first few years, I visited my Dad two to three times a week. I was lucky that I was able to come in an hour or two early to make up time when I needed to take my father to appointments or go to his house at lunch time to deal with the crisis of the day. Having that kind of flexibility at work was very important to me. That being said, when I got home I still had to drive children to practices, make a dinner etc. I was frequently emotionally exhausted and on more than one occasion, short-tempered (add a few hot flashes to the mix and it wasn’t too hard to have a menopausal meltdown). It is hard. There is no way for it not to be, and it’s okay to have a meltdown (or two) in the process.
Make time for yourself. This is easier said than done, but it’s important to practice. Don’t let your situation define who you are.
Home Care versus Nursing Home Care. It’s a very tough decision. We kept my father at home as long as we could using an elder care group that came to his house and did light cleaning and cooking for him. We had two women who came to the house in shifts – one spent the bulk of the day with him, and one spent the evening with him. It gave us piece of mind that he was looked after throughout the day, and was receiving care and nutritious meals. It was a great alternative for us and was financially manageable as well.
The decision to move him to a nursing home was made about a year and a half ago when my dad started wandering outside in-between the caregiver’s visits. It was amazing how much trouble he could get into in an hour! Once he even escaped from a doctor’s office. We were lucky that he had long-term care insurance and a government pension, so we were able to put him in a facility that specializes in dementia and Alzheimer’s care and is set up to keep patients until the “end of life” (an important distinction: some facilities will force you to move your loved one to another facility as they physically decline, sometimes even weeks before death). I also felt guilty about not having him live with me, but I made the choice that worked best for my family. I have the utmost respect for those who move their parents into their own homes to provide care.
Everyone’s situation is unique to their family and we each need to do what works best for us. I’ve made mistakes along the way, sometimes I’ve learned from them, sometimes I’ve made them twice. But I do the best I can, and that’s all anyone can do. My father is safe, clean and comfortable. He laughs when we visit and I will miss him tremendously when he’s gone from this earth.
Pew Research Center, PewResearch Social & Demographic Trends,Report on The Sandwich Moving. (1) Generation, 1/30/13
A search is underway for people to participate in a major documentary film from the award-winning producer of “The Crash Reel” and a healthcare company.
We are seeking people with a brain injury or certain neurologic conditions such as stroke or Alzheimer’s who also suffer from uncontrollable, sudden outbursts of crying and/or laughing that don’t match what they are feeling on the inside.
If you or someone you know is dealing with this condition, we would love to hear from you.
Guillermina Altomonte, a graduate student in Sociology at New School University is doing qualitative research on caregiving, and would like to interview men and women in New York City who are currently taking care of an elderly family member.
The interviews are confidential and they are aimed at exploring time, boundaries and identities that persons experience while being caregivers.
If you would like to share your thoughts and experiences, or you know someone who would, please contact her directly at Altog301@newschool.edu or 540-760-7673.