When you are a caregiver you may hear and read the following admonitions a lot:

Take care of yourself!

Get plenty of sleep!

Eat right!

Exercise!

Find time to do things for yourself!

You may hear people use the metaphor of the oxygen mask on an airplane. You have to put the mask on yourself before you help someone else with theirs. The idea is that you cannot take care of someone else if you don’t take care of yourself. Well, I know, like many other caregivers, that that advice can be darn hard to follow and it is, in fact, quite possible to take care of someone else while neglecting yourself. Is it wise? No, but it’s doable and caregivers do it all of the time.

I was a caregiver for six and a half years for my best friend.

Every morning at 6 am I arrived at his home that was three doors down from mine. I thought this was too early to be up but he liked it that way so I indulged him. I would stand on the bed above his head and pull him up toward the head of the bed. Then I would climb down and put my hand on his hip bone to keep him where I had just adjusted him as I used the electric controls to raise the head of the bed. He was nearly quadriplegic and it was a day-long battle to keep him from sliding down toward the foot of the bed. Once he was settled, I would help him with his medications, empty the catheter container, and visit with him until another neighbor came to bring him coffee and feed him some cereal. I would go home then and get my children ready for school. After I dropped them off, I would return to his home to see what he needed and chat for awhile. I might settle down with my laptop for a bit or run some errands before it was time to make lunch. After lunch, we might download a show before I picked up my kids from school. I would stay with them for awhile then go back to check on my friend before I started dinner at my house. After homework and dinner, I would return to my friend’s house to visit with him for a little while before helping him to bed. Occasionally, I would watch part of a movie with him before lights out. When I returned home for the evening, I would try to spend as much time as possible with my kids before they went to sleep. My oldest liked to stay up until midnight doing homework; I would visit with her a lot until she was ready for bed. Usually between midnight and one, I would go to bed and start over again at 6 am. Every weekday it was the same unless there were doctor visits, trips to the ER or a problem in the middle of the night.

It was a crazy time in my life but I did it for years.

My friend’s only other option would have been a low-cost nursing home. He was a young man and would not have done well in that type of setting. He thrived in his home and he had a tremendous effect on many people in the last years of his life. It was beautiful to be a part of it. That being said, caregiving definitely took its toll on me. If I had read that well-meaning advocates suggested that I needed to take better care of myself and carve out some alone time, I would have laughed. There was very little time for me. My friend’s disability income was so low that it wasn’t possible to hire additional help. People often say help is available but that is not the case for everyone. Many people are isolated and do not have family to help out. Even those who can afford care are often extremely busy. I had a friend for whom the court awarded 24-hour nursing care but caregivers cancelled on their shifts frequently; the family often covered the graveyard shift on their own. Many agencies have trouble covering every shift. Unless the family caregiver has unlimited resources, he or she will be left holding the bag a lot.

So what is it that caregivers really need? Do they need people to remind them to find time for themselves? Some do. Not all caregivers have a demanding hands-on schedule to manage. They might benefit from reminders on self-care because they can budget the time for it.

But self-care for a lot of caregivers means eating food and sleeping for a few hours every day. What this group needs is help. Actual hands-on help.

Someone who can come in and do laundry. Someone who can help with driving a loved one to a doctor’s appointment. Someone who can do meal prep and stay long enough to serve it and clean up afterward. Physical assistance is what is missing for many caregivers. That is where the United States has to put some effort.

Unfortunately, there is little financial incentive for the government to become involved in aiding caregivers as there is no return on their investment. Health insurance companies should take an interest because the demands of caregiving can have serious medical consequences for the caregiver. Maybe we need to start teams of helpers with grant money. They can be paid or they can be volunteers but they have to be committed to consistent help. It may take a village to raise a child but we need the village to help out with our terminally ill and aging.  We have to do more for our stressed caregivers.

I would love to hear suggestions on what you think would work. Please share this post. Thanks! Kim

11 thoughts on “Caregivers need more than advice on self-care

  1. Hi Kim
    Great and truthful post .. Caregiving is different for all of us .. I am 24/7 for my homebound husband.. We live in a motor home .. My husband can get to the bathroom from his recliner and back most times .. He uses a walker and goes very slow..

    Anyway it’s a long story but stroke , open heart , new aortic valve , toe amputation, gall bladder surgery that went bad , vascular surgery .. You get the picture ..
    He weighs 370-400 lbs , I bathe him in bed , wipe him after toileting , etc etc

    What I have found for help is the following

    Medicare with a UHC supplement plan F for his insurance
    I have the same ( we had to wait till he was not in hospital for 90 days before he qualified for supplement

    Meals on Wheels and for shopping I use the new ” Shipt App ”
    The shoppers shop for all groceries and deliver free
    The service costs $98 per year

    Meals on wheels is $20 per week

    We have Mobile Physicians Service for our doctors
    Everyone comes to our home
    Bloodwork , eye are, podiatrist , ekg and other specialist all come to our home..
    Covered by Medicare and the supplement we have

    I drop off my laundry and have it done .. Wash dry fold, never have to purchase laundry products.. I either pick it up or have a family member pick it up

    We also have Home Health Care if he needs therapy or extra nursing ..

    I signed up with our county for door to door transportation if we ever need it .. It costs $2 each trip

    Also found out the ambulance service is less expensive if you need to call them for a ride from home $60, so I have their number handy

    If I need help bathing hubby I have a number handy of a person that can and will bathe my hubby $25

    I often share information on line with other caregivers and learn from them as well

    Since I signed up for the Mobile Physician service for myself , the podiatrist does my toe nails when he does my husbands
    I also see the nurse when she comes, so I get regular check ups too

    These things have helped keep my hubby out of the hospital for over a year .. Before that he was in a hospital or nursing home re Hab every three months for up to 5 months at a time..
    That went on for years

    We also have a pool in our RV park that I can use and have friends close by ..

    Hope this helps someone

    Also my hubby’s heart doctor gives us samples of his blood thinner as it is expensive when in the donut hole .. That is a big help ..
    The insulin he takes is also expensive in the donut hole
    He takes two different ones
    I found the slow acting Novalin N can be purchased at Wal Mart pharmacy over the counter without a prescription for $25 a bottle ..
    The Novalog is not available that way .. I am looking for a way to get that one at less cost

    We also got a portable nebulizer and the medication through our insurance at no cost

    We have Silver Script for our part D RX plan
    It runs $25.60 per month for each of us

    The UHC supplement runs $370 per month for both of us but it has paid the 20% that Medicare doesn’t pay

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    1. Theresa, you are one of the most well-researched caregivers I have ever met! I’m impressed by how efficient and well networked you and your husband are. It’s brilliant of you to make sure you are getting care and help too. Your husband is one lucky man. Thank you for taking the time to type up share all of this with me and my readers! You are an angel.

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  2. This is a terrific contribution to the online caregiving conversation. Thank you! I get SO TIRED of articles that begin with Roslyn Carter’s quote on caregivers and move immediately to ‘take care of yourself’. Caregivers are, by inference, blamed for their own exhaustion if they don’t take time for a bubble bath with candles. It’s rhetoric that’s worn thin on me, for sure. I have been wondering a lot lately about a new paradigm of care that includes simultaneously caring for ourselves as we care for our loved ones. I wonder if it’s possible to try to match each caring act with one that cares for the caregiver herself. So, for example, this would be like the caregiver intentionally making a drink for herself when she makes a cup of tea for a loved one. It would include looking for ways that loved ones can care for US, because they want to make a contribution too. This is an idea I plan to write about in my new book. There are some other strategies that my co-presenter Julie Keon and I muse about here too: http://thecaregivernetwork.ca/event/managing-emotions-going-gets-tough/. Thank you for a great post!

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    1. Thank you for all of your comments. I know that it all depends upon what type of caregiver a person is but those who are in the trenches could certainly benefit from a paradigm shift. I like your thoughts on the cup of tea. It’s similar to the advice for new moms about napping when your baby naps. Not easily followed but it’s sound advice.
      You and Julie, both have interesting and inspiring stories. Thank you for sharing them with everyone!

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  3. As an Occupational therapist I inform my patients that the average person bends almost 6000 times a year putting on and taking off their shoes, socks, underpants and pants. No wonder many of us have sore backs. If a patent ask that their spouse or loved ones do this for them, they are increasing the bends of the caregiver to nearly 12,000 times a year. (6,000 for themselves and 6,000 for the patient) Looking at it this way, many of my patients and their spouses realize why it is important to be as independent as possible. Even if they need to use adaptive equipment to help dress themselves it all helps. It’s just not realistic to think a caregiver can perform that number of bends a year without taking a toll.

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  4. Wonderful piece, Kim. Thank you for sharing this insight. This definitely opens up a lot of eyes when it comes to providing help to the caregivers.

    Caregivers are outstanding heroes, but they also need help. We have included this on our Weekly Digest to share with our caregiver readers because we know that they can learn a lot from this. We sure have. You can read it here: http://altcp.blogspot.com/2016/06/weekly-digest-experiences-and-struggles.html.

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