Being a family caregiver is stressful. Unless action is taken, stress will continue to build. Family members, even the loved one you’re caring for, may not understand your stress. Some family members may think you’re exaggerating. What’s all the fuss about?
“I’m not rushing you,” my husband declared. “Take your time.”
My sweet husband can tell when I’m stressed. “I’m not rushing you,” he often said. “Take your time.” But I can’t take lots of time because there is so much to do, and I’m always behind. This makes me feel like I’m not a good caregiver. This is my 19th year of caregiving and they have taught me to keep an eye on stress.
Knowing the sources of stress helps caregivers to cope with it.
Whether you’re a professional or family caregiver, grief is woven into your day. I grieve for my disabled husband, who spends his days in a wheelchair. If I’m honest with myself, I wonder how long he will live. Author Eleanor Silverberg, in her book, Keeping It Together: How to Cope as a Family Caregiver without Losing Your Sanity, thinks grief is an integral part of caregiving.
“Just as the nature of chronic, progressive illnesses makes it normal for you as a family caregiver to experience stress, the situational losses stemming from the illness make it normal for you as a family caregiver to experience grief,” she writes. And grief takes many forms.
Anticipatory grief –- a feeling of loss before a death or dreaded event occurs -— is also a source of stress. There are many symptoms of anticipatory grief and each one has an impact. My mother had a series of mini-strokes and, according to her physician, they added up to Alzheimer’s. I was her family caregiver for nine years and felt like she was dying cell-by-cell before my eyes.
Never-ending tasks can also cause stress. A “To Do” list may change gradually, as a loved one improves, or rapidly, as a loved one fails. Calling 911 can change tasks—and life—drastically. Although I’m a list-maker, sometimes I just go with the flow.
Financial worries are a source of stress and can plague caregivers day and night. Many fear they will run out of money and I understand this feeling. My husband and I live on a fixed income and the rising cost of living scares us. To cut down on expenses we’re eating less meat and rarely spend money on entertainment. Going to a movie is a big deal for us.
Personal health problems can cause stress too. I have arthritic hips and am stiff when I get up in the morning. In short, I’m getting creaky. We will have to hire more help or move to assisted living if my hips get worse. Thankfully, this hasn’t happened and we hope we can life here for several more years. What can family caregivers do about stress?
We can start by identifying its sources. Next, we can practice self-care. We can take steps to reduce expenses, always have a Plan B, and be on the lookout for anticipatory grief. Don’t let grief spoil a day. As author Leo Buscaglia noted years ago, “Worry never robs tomorrow of its sorrow, it only saps today of its joy.”
I try to live in the moment, find joy in each day, and savor this time with my husband. We are blessed to have each other!
Having a stressful job just like the rest of America, we just don’t get a break. It’s non stop work. Still the best job I ever had, caring for my Son Mikie. I also had much joy, endless happiness shared with my boy. Love in abundance that was real. Lessons learned each and every day, good and bad. I miss all that stress honestly I do. Life without him these past months have been the most stressful, anxiety ridden I ever imagined. I miss my boy.
Constant grief….
If you, as a caregiver, really want to be honest with yourself, you must ask how long you will live as well.
You will live as long as you continue to stop and take care of yourself first.
If you ever find the time . But it will still shorten your life.
After reading through most of these comments, I feel I have no right to even post my stressors. I have it good compared to most of you, I’m sure. My husband and I live with my mother, who suffers worsening dementia. In March it will be two years, and in some ways I can hardly remember the carefree days we took so for granted before we ended up here. Just constantly walking behind Mother, picking up and putting away everything is so nerve wrecking. She empties her cabinets, drawers, bathroom items…. everything… out onto the bed, or into trash cans or bags, or puts odd ball stuff under her pillows. Can never, ever leave the bed clothes alone…. I have to remake it over and over. She will not throw anything away, so there are always used toothpicks randomly strewn here and there all around the house. But the worst offender is her obsession with Kleenex, toilet paper, paper towels, napkins, you name it. She blows her nose and spreads the tissues out to dry on different things around the house, which just turns my stomach. I’m a clean freak by nature, so that kind of thing really goes against the grain for me. She never uses the dried ones again… but cannot bring herself to trash them. Her mind just works that way. Sometimes I feel like I’m about to lose it and just unload on her, but I manage to stuff it back and just keep going!! Very thankful that I have help from my loving husband, my sister, and my niece! As I’ve said before, this is not a job for sissies!!
It’s all on me
Financial worries. We’re spending a fortune for aides to care for my husband. Insurance costs! My husband’s insurance ends next month, yet the two year wait for Medicare means he won’t be eligible for Medicare coverage until November.
FAMILY….. who ALL have a different IDEA and PLAN, but haven’t a clue about their family members diagnosis, proper therapy/exercise, meds, foods to eat, how often to take a bath/shower, or how to keep the skin integrity from breaking down… etc!!
..the fact that life goes on around you..but you feel anything but ‘alive’. …the jealousy of seeing someone’s new outfit or haistyle or fixed nails…and wondering when was the last time you had a bath? ..knowing and feeling guilty for the fact that truly your only way out is if they (OR YOU) die. ..pisspoor aides and endless chores. …standing sometimes allll day long. …endless laundry of soiled bedding and your washer breaking. …the only trip to town you get is to pick up groceries, prescriptions or Dr. Visits (for THEM not you). ..stressers??? Stressers?? ..having a once a year visitor telling you that you need to take care of yourself because you don’t look good. ..having a ghost family. …loosing your joy, your peace and sometimes your spouse due to the unending days of service and sacrifice…should I go on???
Just put my Mother in a Nursing Home.
Don’t like it but had to be done to keep my sanity.
First search for support groups.
Call all insurance companies in your area. Ask questions.
If I got, ” sorry I can’t help you. ”
I asked who could.
If your caring for someone at home chart everything you do for them.
I used Mom’s social security to help hire a private caregiver.
I had help from her insurance company. Hospice Pallative Care. A neighbor, my husband, brother and daughter.
Talk to only people who will let you speak your mind.
For those who use the term I understand. You will know if they really do. Those who don’t I didn’t rely on. Only dragged me down.
A caregiver works 168 hours a week. Which is inhumane.
Faith, Diligence and Hooztspha get things done.
Blessings to all Caregivers.
Ps….. Call your representatives about changing laws for all caregivers.
If I didn’t have to worry about money, it would be much easier to take care of two parents with dementia. The financial worries are overwhelming. I haven’t had a day off in years. Heck,at this point I’d love to be able to take a shower when I want to. I’d love to be able to walk around the block. The ruminating is relentless. Yes, I know I’m supposed to take care of myself but how am I supposed to do that when there is no extra money and my parents don’t qualify for any aid?
My husbands disease has eclipsed our lives. Around the clock call, no help… sick of pitty. Worse is future doesn’t look even better. Living day to day hour to hour.
Who is going to take care of my mom if something happens to me. I am the only family she has left
My own ADD. I can’t concentrate on getting my own things done because I am on hold waiting to see what everyone else needs. I can’t focus.
Heartache!
Caregiver Space… You listening!? What does your nonprofit plan to DO to help? How are you working with lawmakers to get caregivers direct help or grant funding?
Giving us space to share … This is no longer enough. Advice on what to do to keep our sanity…to recover a bit so we can keep doing it longer, with more medical tasks expected.. Not enough.
I was caregiver for a dozen years…mom died 2 years ago. No one will care for me..no kids.
You have got to up your game.
If that’s the case, then all of us need to follow suit.
Not even the AARP goes far enough. Any solutions seem to be the “family time off” …which puts the burden onto the employer, this being an added perk like good dental coverage or matching 401K.
The govt is actually skewered to give us more responsibility, ot less, to save the govt money and keep the elderly out of the ER and hospital, and stop readmittance. Training the caregiver for better care at home is part of their plan. (this is not conjecture, but have read it in govt docs, announcements of programs, etc.)
We’re a tiny nonprofit of caregivers supporting other caregivers. While we occasionally work with advocacy organizations, we don’t have the staff to lobby politicians. As an organization supporting ALL caregivers, there’s no way to advocate for a specific change in how health insurance and politics works in the US without alienating a large percentage of our global community.
It’s people who don’t understand the situation or blame the person I care for for being spoiled instead of mentally ill. God bless all you care givers.
His nasty mouth
Is he really nasty, or is it a disease talking?
I’m really sad for you. My husband has dementia, he had one episode when he said all kinds of awful nasty things. It only lasted a day. It hasn’t happened again. It must be really hard to deal with that all of the time! I’ll pray for you. Hugs!
I shut my self in with God. No one understands my life (nor do I expect them to really). I do not (honestly )have extra patience for peoples drama. I have to think for not only myself but for my husband of 42 years who suffered Brain Damage. I wouldnt want it any other way but the selfishness of family and friends are unbelievable. I am better off alone with my precious husband! They dont except him. They do not except me. ♡ Keep On Keeping On!
Working 52 hours a week, taking care of Dad and all of his affairs, and trying to run my own home as well as his. No day off and my sisters are too “busy” to visit.
Never a day off
When you have the care of someone you love day after day, year after year, it wears you down. I feel invisible to most everyone, they just do not get how a visit or a meal, how anything would be just so welcome. Selfishness.
Having my own health get so much worse. I am beginning to think I may be the 1 in 3 caregivers who dies first. It’s now a race against the clock to get all my affairs in order to insure his care if that proves to be the case. Yeah, life pretty much sucks. Looking back, the first five years were ridiculously easy by comparison. We still went places, and he could walk a little bit with a walker. He could also mostly dress, transfer, toilet and shower himself. All that is gone now, and he is totally dependent on me and other caregivers.
Trying to maintain a positive outward appearance but drowning in despair on the inside.
Not being a trained medical professional and having to make those decisions about what to do… just email doc? take to ER (like it won’t take hours there to get someone trained to take a look) .. way stressful.
My arrogant sisters who aren’t living there 24/7 !!!!!!!!