With parents living longer and the burden of care takes many forms within a family. During this phase of life, we explore from personal experience strategies to cope with caregiving for aging parents.
Caregiving to Elderly -Burdens
- One national study on women and caregiving highlighted the conflicting demands of work and eldercare.
- 33% of working women decreased work hours
- 29% passed up a job promotion, training or assignment
- 22% took a leave of absence
- 20% switched from full-time to part-time employment
- 16% quit their jobs
- 13% retired early
In total, the cost impact of caregiving on the individual female caregiver in terms of lost wages and Social Security benefits equals $324,044. 24 [Updated February 2015]
- The toll that caregiving takes is not just financial. Higher levels of depression, anxiety, and other mental health challenges are common. One four-year study found that women who provided care for an ill or disabled spouse were almost six times as likely to suffer depressive or anxious symptoms as were those who had no caregiving responsibilities.
- The negative impact on caregivers’ relationships and social networks due to their reduced ability to participate can lead to social isolation, which in turn can impact on their psychological wellbeing.
- Women caregivers are less likely to have their own health needs met. Coronary heart disease (CHD) is one physical risk factor of caregiving. Women who spend nine or more hours a week caring for an ill or disabled spouse increase their CHD risk twofold.46 Other health effects include increased risk of developing hypertension; lower perceived health status; poorer immune function; and an increased risk of mortality.47
- A Study also found it can also be rewarding. women caregivers a “gain”: more purpose in life than their noncaregiving women peers.50
My Situation – Melissa
In my situation I had to elderly parents in their 80s who were living still in their original home and we’re doing quite well and were very healthy for their age. We had encourage them to downsize but they didn’t do it. Then all the sudden my father got a very serious rare spine infection and he was rushed to the hospital and given emergency surgery; he subsequently ended up in and out of the hospital for five months.
So I have been through five months of hospitalization; in and out of 5-6 nursing home rehab places then into long-term care nursing home at the same time my mother was living with me. He has improved to the point they are now living together in assisted-living.
So over the past year I have learned a lot about the difference between Medicare part a and b for hospitalization; nursing home rehabs like how you can get into rehab; how many days you have; why they kick you out; what’s the difference between long-term care and assisted living; what kind of care they get there what kind of care they don’t there.
It’s been a whirlwind of issues one after another. I found that you really have to fight for a lot of things. From physical therapy to seeing the right doctor. If someone’s not watching your loved one, I can see how an elderly person may die quicker or languish without proper direction.
But I suggest to someone who hasn’t gone through it and they probably will if they have elderly parents to read up now or quickly find somebody else who’s been through the experience because I can tell you some key innovatelogy tips to know right now:
If the elderly patient doesn’t stay in the hospital for three nights you’re not going get any rehab in a nursing home afterwards so don’t let them kick your elderly parent out at 2 nights.
The hospital will tell you the patient has to out the next morning without warning. As soon as they get in the hospital you should find the social worker to figure out the next place they need to go. You should go there and see if it is acceptable and I would suggest it be close to your home not their home.
You only get 90 days Medicare A for hospitalization then you’re going to start paying for it. Luckily my father was exactly 89 days in the hospital.
You get the 100 days for part A rehab in a nursing home. Whether you get the 100 days depends upon whether or not they can continue with physical therapy. Medicare has it on both sides if they get better they cut them out if they don’t get better and they’re not going to get better they cut them out. So luckily my father got full 100 days because he was so ill and he did improve a little bit.
After rehab 100 days, he went to long-term care nursing home and we had to pay for it ourselves it can be quite expensive about 12,000 a month
He did get better and we got him into assisted living with my mom which is half the price.
As far as his medical care I had a big advantage because I work in healthcare so I have spent a lot of time researching all his medical issues and could talk to the doctor on his or her level. They don’t always like that. Looking back the only big mistake I did was not seeing a pain specialist sooner.
I was told my father would die by three different doctors of specialists. He made it through really as a miracle. thank God.
As the statistic say, it does take a burden of the caretakers. My mom caregiving for my dad affected her in many ways; I ended her in the hospital a few times that same year.
As the stats say I have had less income; less social time; less personal time and a lot of emotional ups and downs along with stress. I have gotten to the doctor myself less and now have medical issues.
But there is satisfaction in knowing my parents are better off for it and they are doing well now. I know after they pass I won’t regret putting all the time, work and love in it.
Caregiving for a Parent Can Mean You Become Their Life Manager: Linda
- Sudden death of my father left mother without her spouse of 60 years. He had been a part of her life since she was 19 y/o.
- Stayed with my mother for the following 4 months to offer compassion and companionship
- One month after my father’s death, tests results showed recurrent cancer for my mother
- Four months after my father’s death, my mother fell twice breaking her hip and then her leg
- In the preceding two years, I had set up a consulting business and I had succeeded in attaining my business goals
- My mother’s care needs accrued to the point where I had to take a family medical leave from my business to focus on her
- I became my mother’s life manager. No matter how large a family is, typically the weight of caregiving falls to one person. This has its pros and cons.
The biggest PRO is when you finally stop wishing, asking, pleading with others in the family for help and/or recognition for what you have taken on and what you have given up to do so. Once you mentally accept that you are the main person in charge and that you no longer have the expectation that there should be some form of consensus in decision-making, it can be freeing. Of course, you should be legally designated to do so. If you are not the one legally designated, you should seek to become the one with that designation to avoid the potential for problems down the road.
The biggest CON is that you are a one-woman or man show. You will have to use or create your own support team to help you to move away from the temptation to dwell in feeling sorry for yourself, then feeling guilty for feeling sorry for yourself.
Evolving Care Needs
My evolving role:
- first 4 months, my mother was mobile, living at home, driving, making some of her meals
- lived with her mainly to offer companionship and support through the period of grieving
- addressing all of the matters of transition following my father’s death which were more broader in scope and more challenging than I could have expected
- for instance, one year later, I still have not fully disconnected service for my father’s devices
- living with mom through period of grieving made discerning the difference between forgetfulness and confusion that is grief-related vs age-related difficult
- regardless took on more active role managing financials, participating in healthcare
- following my mother’s falls, she spent a month in rehab
- while she progressed very well with her physical healing, it became clear that she would not be able to live independently any time soon
- choice was either to acquire in-home care or to transition to assisted care. investigated both options
Options Pros & Cons: In-Home Care
- remain in familiar setting
- remain with familiar neighbors
- in theory greater sense of control, lesser sense of disruption, greater comfort
- availability of committed, compassionate, professional, experienced in-home care persons
- long-term retention of in-home care persons that meet qualifications
- dependability of in-home care persons
- consistency of care among in-home care persons
- unfamiliar persons in home – safety and security concerns
Options Pros & Cons: Family Member In-Home Care
- Familiar person who knows person in need of care
- Win-win as situation circumstances could mean benefit of companionship for both
- Safety and security
- Family members who are not healthcare professionals may have the best of intentions but they may not be prepared for the real demands of the role
- As care needs increase, family members who had been capable may find themselves unable to provide the increased level of care
- It is not realistic to expect that a family member could provide care 24/7. They will need time away. They may need an occasional sick day. Therefore, you will still need to have a plan for back-up care. It is disruptive and stressful to have sudden care needs to occur.
- Care direction from family members may be more easily dismissed or ignored (e.g., medicine reminders, safe movement guidance)
Options Pros & Cons: Assisted Care
Assisted Care (good reputation & track record)
- 24 / 7 assisted care provided
- aides or nurse visit room every 2 hours, often more frequently
- level of care variability depending upon needs of individual
- scheduled administration of medicines
- if an aide or nurse calls out sick or quits, the facility takes on the task of replacing the person
- variability among aides and nurses in terms of bed-side manner and level of attention to individual as a human being and provision of required care
- aides response to call button can be delayed as long as 15 to 20 minutes. sometimes they pop in and turn off alarm and leave without attending to the individual’s needs. (PRO is that it is still likely faster than if the person was at home)
- aides and nurses are employees fulfilling the responsibilities of their jobs on their shifts. they are not family members or friends so they do not provide the added dimension of companionship and love that is so important
- engaged advocate is still needed
Care Strategies: Whole View of Care
For Mind, Body, Spirit Wellbeing of the Loved One,
Establish a care team. In most cases, it will be virtual. Nevertheless, it is helpful to think of those engaged in care as a team, especially since you will be the only person who has a WHOLE person view of the individual being cared for. You will be the one to identify care gaps and engage with the care team to fill the gaps.
Get to know doctors, nurses and aides.
- Have their contact information readily accessible on your mobile device.
- Be sure that you have HIPAA documents on file with each doctor, so you have access to medical information
- The primary caregiver should be designated as the Healthcare Power of Attorney (POA). While others may be listed, it should be that one person is the primary decision-maker in the durable healthcare POA document.
- Know medicines names, doses, schedules, what they are for and what they look like.
- Help the care team to help your loved one and you.
- Tell the appropriate care team members when there is a change that concerns you
- Inform care team members of relevant care needs changes
- Ask for help. Request meetings / calls.
Care Strategies: Have a Life
For Mind, Body, Spirit Wellbeing of the Life Manager,
- Establish a support team. In most cases, it will be virtual. Nevertheless, it is helpful to seek out people who may help you to have a life.
- You should reflect on those aspects of life that energize you. Then seek out people and activities that offer you that energy. Plan it on your calendar.
- For me, spiritual life is important. I periodically check in with a spiritual director. I attended a small group at my church for adults seeking to grow in their spirituality.
- I took a class in Mindfulness-Based Stress Reduction, and I regularly practice mindfulness, and I periodically attend a mindfulness group.
- Creative outlets are essential for me. So, friendship with Melissa means I can continue my growth as a painter. The InnovateOLOGY project with Mary and Melissa also offers me the opportunity for learning and utilizing various skills I’ve developed through the years.
- Make room for the unexpected. Share your priorities with your support team to let them know that issues related to your loved one may take you away from activities and commitments with them. In this way, everyone can plan accordingly.
- Help the support team to help you.
- Ask for support / help from the appropriate support person(s) when you need their help, and even how they may help you if that is clear for you
- Accept support / help.
Learn to be a Mindful Caregiver
This is not your grandmother’s caregiving universe
- people live longer with conditions that formerly were life-ending
- levels of care needed are greater and for longer periods of time
- people are living healthier longer, which means persons are becoming caregivers at older ages
- When in a high-stress situation, it can be difficult to know what you need because there may seem to be too much going on inside of you.
- It can help to take a few minutes each morning or evening to reflect on what happened within the last 24 hours that gave you the greatest good energy and what was most energy draining. You may want to briefly note these in a journal over 30 days. At the end of 30 days, you will see patterns emerge that will offer insights for you about yourself. This will help you to know what you need to “dial up” and what you need to “dial down” in your life.
- Mindfulness meditation for 15 to 30 minutes daily will also yield benefits if practiced regularly.
- Physical exercise in 10-minute or 30-minute episodes daily provides body, mind and spirit benefits. There are some good guided exercise programs on YouTube. I’ve used the Mindfulness Yoga practice and have found it very envigorating.
What have you learned in becoming a caregiver? Tell us below in the comments.
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