To Do List
Some of my best ideas for posts come from friends, family and, of course, my readers. A friend, who is in the process of finding nursing home care for her 92 year old mother, suggested I write this post on caregiving. With reader comments about their caregiving responsibilities, it’s a subject I’ve looked at before. Admittedly I avoided it because caregiving is such a broad subject with many layers. Where to begin? I decided to begin with the caregiver, a many layered and varied subject in and of itself with as many scenarios as there are people.
According to caregiving.org in 2015 there were nearly 44 million unpaid caregivers in the United States alone. With 10,000 baby boomers arriving daily at their 65th birthday, that number is expected to rise. Boomers are not only giving care, they are needing care. However, caregiving.org reported 1 in 10 caregivers were over the age of 75. Forty percent of caregivers report the care as being a high burden for them and higher hour (44.5 hours a week) caregivers are stressed. The physical burden, especially at an older age, appears to carry a larger emotional burden as the hours of caregiving amount to that of a full-time job with little or no time for a personal break.
As a wife and mother I’ve been in the role of caregiving in the past, one that comes as a natural part of raising children or caring for a spouse recuperating after an accident. Most of the caregivers are, in fact, women. I can imagine that as we age and find ourselves caring for someone, we may not view ourselves as caregivers. It’s what we have always done for family or sometimes, even friends.
I’ve known many people, like my friend, who are either caregiving directly or are responsible for arranging caregiving. It is a complicated subject. There is no one size fits all. Some people are caregiving for an aging spouse or other relative or friend, while others are continuing the care of handicapped adult children and others still are taking on the upbringing of grandchildren. Some retired not expecting to be in this role.
Earlier in the summer I had the pleasure of having one of my grandchildren visit for two weeks as he accompanied Martin and me on a trip to Michigan to visit our oldest daughter and her family. An active, engaging seven-year-old caring for him takes a lot of energy. There are the usual undertakings like making sure he is eating his vegetables or getting a bath or off to bed at a prescribed time to the unfamiliar activities of assisting with the technical gadgets this generation carries with them as a matter of course. Then there was keeping track of him, keeping him occupied, making sure he is spending his time well. I found myself more tired in the evening. What was a snap when I was thirty takes more effort for the aging me. And, I wasn’t having to be concerned with school, financial responsibilities or healthcare.
This reminds me of a conversation I had a few years ago when I was interviewing the local Alzheimer’s Association as a volunteer for United Way. The woman representing the organization remarked about how stressful the role of caregiving is for the caregiver, impacting their quality of life and even their health as they care for their loved one. Support and a respite, if only for a few hours a week is important. Depending on the extent and duration of the caregiving, it can be stressful, especially as we age.
According to the Center for Disease Control more than half of caregivers said they do not have time to take care of themselves and almost half said they are too tired to do so. It’s easy for me to say because I’m not in that role, at least not yet, but this brings to mind one of my favorite sayings, “Put your own oxygen mask on first. Otherwise, you may not be able to help the other passengers.” If you are in the role of being a caregiver, it is important to take care of yourself so you are able to continue to care for your loved one. Otherwise, what will happen to them if you leave this world first?
That means eating well balanced meals, finding time for some exercise, getting your immunizations, health check-ups and taking any medications you may need. A support group where you can share your story and network for needed services can provide some relief for the stress. Is that easier said than done?
As I mentioned above, caregiving and receiving care is expected to take on more significance as baby boomers age. This generation’s huge numbers is expected to be an opportunity for companies in the healthcare and senior care industries. Most of this generation wants to age in place using in-home services. Realistically, they may not have the financial capacity to go to assisted living facilities. Aging in place may not be by choice but necessity.
As also mentioned, some of my readers have written comments about caregiving responsibilities. I’d like to hear from any and all of you who are engaged in caregiving be it a spouse, parent, adult child, grandchildren or friend. Caregiving runs the gamut of taking someone grocery shopping, to the doctor or doing some housework to being responsible for attending to all physical and personal needs, finances and even some medical or nursing duties.
For starters: What are your responsibilities? How does your caregiving impact your hours for taking care of yourself? Do you have time for activities you enjoy like a hobby? Do you feel burdened by caregiving responsibilities or is it something you enjoy doing? Why is that? Did you expect to be in this role when you retired or did it catch you by surprise? If you didn’t expect to be a caregiver, how did it change your retirement? Do you consider yourself in good health? Has being a caregiver caused your own health to decline? Do you feel more stressed or is caregiving just one more hat to wear? And whatever else you want to comment about.
Let us know what it’s like on the front lines of caregiving. Tell me your story. I’ll post your comments and pass your observations on to others in a future post. Your story may help someone else.
Kathy's Retirement Blog 
More information…less stress & surprise…every bit helps….keep on sharing
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Great post! Caregiving is a way of life for so many. Presently, my caregiving responsibilities amount to babysitting occasionally for our nine grandchildren. However, when I was knee-deep in raising our brood of five and later helping to care for my aging mother, one trick that kept me sane was reading. I always had a books handy so I could grab a moment to chill out and transport myself to another world for snippets of time. As a caregiver, you may not have time for long breaks, but I think it is important to find ways to ease the stress physically and emotionally. For me, reading was the answer.
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Rita, What a great suggestion! Reading fiction always takes me to another place and time and I think that’s true for anyone who loves to read. It’s very relaxing. K
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Totally agree, Rita! Reading is and always has been my sanity saver, my escape, and my touchstone. I read every night, before bed, for an hour and sleep much better when doing so. It clears my mind of the clutter.
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I retired 7 months ago from a very stressful
career Prison job. My husband and I took 6
months then to travel and rest. One month ago I started being the primary caregiver for our grandchildren as our daughter just started medical school and she is a single mom with two grade school aged children. I keep her small house clean as well and prepare community dinners four nights a week for our group. My husband helps me keep our own house in order. Both grandchildren are in many extra curricular activities which require transporting them . Also I walk them to school and back each day. It took me a few weeks to realize that I absolutely need to take care of myself too! I have had a virus of this or that since I started this caregiving gig. I get up way earlier than I am accustomed to so I need to make sure that I get enough sleep. I need to make sure that I also spend quality time with my husband. I need to make sure I spend time with my friends as well. It is all a big adjustment for me to coordinate all these needs. I could run run run all day but I have figured out to give myself an hour each morning to read. And 2 hours in the afternoon to eat lunch and watch tv with hubby. I will make sure that we get away on a couple of vacations in the summers and to use my daughter’s medical school breaks to travel. I do this caregiving out of pure love and that is what fuels me! PS. Love your blog and share it with friends!!
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Debbie, It looks like reading is one way to get some time for yourself as Rita also uses it to re-group. You are also smart to take some time when the kids are in school for a long lunch break that includes your husband. I took care of one of my grandchildren when my daughter went back to college and yes, it is out of pure love that we do it. You are wise to plan some breaks during her breaks. Best wishes for her medical career. She’s lucky to have such a mom (and dad) as you! K
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Enjoy your blogs, Kathy, as the role of “caregiver” seems to cling to me like Saran wrap. My husband and I had planned on moving from our coop apartment in NYC to Vermont a few years ago. We even placed the deposit on the house and filled our storage bin with goodies for the new place. It was so exciting the thought of getting out of this big dirty crowded city to the beautiful country. I retired but his health declined with a nerve condition severely limiting his walking abilities. So we had to scrap our country home plans and here I am at 65, his full time caregiver. Hubby is 76 now. His mind is sharp but body deteriorating. I try to get him out for a ride in our car a few times a week, but for the most part I do everything from grocery shopping, cleaning, bill paying, etc. We both have hobbies, thank God. Mine are yoga and tai chi classes and watercolor painting. His are Greek mythology reading, coin collecting, writing fun fiction and keeping up with music trends. Some days I do get frustrated as it is difficult to even get him to go on a short road trip. Glad we traveled when we were younger, since we don’t do much of it now. My health issues are vertigo attacks and dry eye, both manageable. When I get very antsy, I take a solo trip to see brothers who live 200 miles north, and plan broadway shows a few times a year with my niece and sister who live a bit closer. I try to keep a good attitude, but retirement was a real curve ball for me. Any further advice?
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Mary, I don’t know which is worse as we age, physical or mental decline. I keep reading that it is not inevitable, but I don’t believe that is entirely true. I have post-polio syndrome as a result of having polio when I was 3. I have met people who had it as I did at a young age, had no paralysis, but, as they age, are finding themselves in physical decline. I am much more tired these days and my right leg gives out with no warning. I never expected this at 64. Definitely, curve balls happen. All of the activities you mention are great stress relievers – yoga, tai chi and watercolor. It’s also good for you to take periodic breaks. It’s wonderful that your husband has hobbies he can enjoy as keeping his attitude positive will help yours stay positive. My advice is to keep doing what you are doing. If I come across other helps, I will include them in my next post on this subject. You might also read the other reader comments although I am not receiving as many as I thought I would. K
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Thanks Kathy. I enjoy your blog. You bring up a very important topic for many of us. I first noticed the changes in my husband quite a few years ago. They were subtle, but unmistakable. It was my impetus to finally retire 4 years ago. He’s relatively young (67) to be experiencing such a decline in his cognitive abilities. He has no awareness that he has any cognitive deficits.
At this point, I am his caregiver on several levels. His memory is not good and he has serious problems with word finding. He is no longer able to operate the mechanicals in the house (washer, dryer, thermostat etc) without help. The day to day activities, such as banking, managing investments, grocery shopping, doctor appointments, making phone calls, are all things he needs help with. Emotionally, he is a different man. Everything I do I try to run through my “caregiver filter” to try to minimize his stress and anxiety.
Everyone’s journey is different. It certainly was a surprise to find myself at this place in life at the age of 64. But here I am, trying my best to make it all work, and trying to make the best of it.
I have found that writing about my experiences is very therapeutic for me. You can read about it at : http://www.oneoflifeslittlesurprises.blogspot.com
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Carole, I did take a look at your blog – you are providing a much needed service by sharing your story. I also find writing therapeutic, which is why I started this blog. I guess writing about it even if it’s just in a journal is one of the activities I would recommend. You don’t name what your husband’s form of dementia is. There are many forms besides Alzheimers and unfortunately, many strike at an unbelievably young age. Your type of caregiving situation is probably the most challenging as it requires your taking over every responsibility as well as reminding him of what he needs to do and engaging in ‘twenty questions’ with him, which takes a lot of energy. Taking care of your stress and anxiety is just as important as taking care of his. I’m glad the writing gives you some relief as well as a help to others. You are doing a good thing. K
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This is such an important topic. Currently, I’m in a very minor caregiver relationship as the primary support person for a friend who is dealing with complicated health issues (e.g., going with her to all of her medical appointments). Even this minor role is sometimes very stressful, in part because she handles health issues very differently than I do and it can be challenging to provide support for decisions (or more often, indecision/inaction) that I disagree with.
When my mother was suffering from her final illness (a brain tumor), she very wisely asked different children to take on different tasks (there are 5 of us), thus keeping everyone involved and keeping any of us from feeling either overwhelmed or frozen out. I noticed, however, that the (generally excellent) nursing home where she lived after she became paralyzed had trouble dealing with this division of labor; they wanted one name and one number that they could call no matter what the issue.
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Jean, your friend is very fortunate to have someone like you to support her. I agree it is sometime stressful when we don’t agree with people’s decision/indecision/inaction, yet we are their support. I always have to remind myself it is their life and their choice. Even indecision is a decision as time and circumstance will eventually make the decision for you. Your mother was a wise woman to divvy up the task load among you and your siblings. I’m sure that didn’t make things convenient for the nursing home staff, but it made for greater peace and harmony in your family and that’s what is important. K
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My husband and I have been retired for 8 years. 4 years ago he started to develop one physical issue after another requiring medicine, surgeries, and Doctor appts. We are facing another surgery. And the time consuming recovery. I feel like the frog in the pot of cold water and the fire has been turned on as I watch more and more of my time taken up with care taking, managing the house, our finances and being able to do less of the things I want to do. I can see this decline in the quality of our life continuing and there is no stopping it. Yes I plan to get help from family, friends and paid care givers but my family and I have lost a lot as his health declines.
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Mary, I often hear stories like yours where people retire in good health only to have something unexpected happen. Your frog analogy makes me think you are feeling overwhelmed at times. From what I have read it’s important for you to get a break, if only for a few hours a week. I can only imagine how difficult this must be for you. You, as are all my readers, are in my thoughts and prayers. K
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Kathy,
I cared for my 91 year old mother until her death in 2012. Although, it was sometimes frustrating and exhausting, I wouldn’t trade a single day. My mother was a young widow – age 50, with two young children 10 and 11. This made our bond so much tighter and as she got older I began to appreciate the fact that I was younger than average caregiver and still had the energy and strength to help her. After my mother passed away, i began caring for my younger sister who had Lupus. She unexpectedly passed away in 2013. I retired in 2013. My retirement party was on a Friday, my sister died the next day. I had planned my retirement to spend more time with her. For the first year, I was a boat lost at sea. I had to keep rowing, to help raise her 15 year old son. Today, I am working on college visits and football team dinners. Nothing can fill the loss, but caring for my nephew has taken me out my own head and allowed healing and peace. K
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Kelly, You have obviously done a lot of caregiving and are a very caring person. Your family, and especially now your nephew, have been fortunate to have someone like you in their lives. Nothing ever fills the loss, but I’m glad to hear you are experiencing healing and peace. K
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I am just entering into multi-caregiving roles (3 young grandchildren and aging parents). Your post, and readers’ comments, are very timely and helpful for me. Thanks so much for sharing this.
Donna
http://www.retirementreflections.com
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Donna, Your comments remind me of an article I read several years ago where baby boomers were called the ‘sandwich’ generation because they were raising children while caring for aging parents. We have now aged to the point where we are now caring for grandchildren and aging parents! That is quite a challenge. I’m glad the post and comments helped. K
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Carigiving is an awesome task. 3 years ago my husband retired and his health gradually declined. My work allowed me to assist him as he was able to provide self care in several areas of his life. In January of 2015 his health steadily declined until he required dialysis. I accompanied him on all of his doctors visits and appointments. He was even hospitalized twice. Due to his physical decline, the household management and finances became my total responsibility. Being a nurse helped me tremendously and my “me time” occurred usually 30 minutes to an hour before bedtime. My son also provided respite time to his father which aided me to have several hours worth of breaks. My husband passed suddenly and unexpectedly in December and as I reflect back, I would not change one moment I spent as his caregiver.
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Joyce, My condolences on the passing of your husband. Most caregivers find the experience rewarding and especially if they have breaks such as you did. I’m sure your nursing skills played a big part in your ability to take care of both your husband and yourself. I wish you the best. K
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Enjoyed reading this, thanks for sharing! As sole caregiver for my dad, uncle and up until the time of her passing, my mother, I am responsible for everything. I’m not an only child but as is more common than not, a daughter (that’d be me) will take on the role before a brother.
I love my guys dearly but the stress of keeping the quality of their lives at a high, has given me more lows than I ever thought I’d experience and that includes not taking the best care of myself. It helps that we all have a fabulous sense of humor and laughter reigns in our home.
Like others, I’ve sought a release, somewhere, anywhere, just for a moment and started a new blog this month. Incidentally, it is National Caregivers Month and warm wishes to all of you. If you don’t hear it as often as you should, if you’ve never heard it before know that you rock.
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