It’s rare for caregivers to have a free moment. The time consuming nature of caregiving means that few of us have the opportunity to get around to the things that are important to us.
So, what do you wish you had time for?
My husband. I am soul caregiver for my mother trying to keep her in her home and have made myself ill in this process. He is my only help and he is awesome above and beyond for me and my mom. – MH
All the things everyone thinks I have plenty of time for! Especially my own family. It’s infuriating. – SW
There is this thing that i hear people talk about all the time.. I think they call it.. Umm… Sleep? Yea. I think that’s it. Sleep. I’d like that it sounds nice!! – RG
An Encore Career. I never much liked what I did for a living, but it was easy, I seemed to be good at finding companies with good benefits, and I made *enough*. My last job had gotten more and more unpleasant so I took a buyout (which included a small severance payout, a year of career counseling, and the option to stay on their health insurance rolls for life). Almost simultaneously, my mother was diagnosed with bladder cancer. So I had to be able to take a weekday off with little notice whenever I needed to do that. After going to one full-time job interview, where HR told me I would only get 10 vacation days the first year and could not use them for 30 days, I opted for freelance copyediting at home. I didn’t need a job for health insurance, but – can anyone spell B.O.R.I.N.G?? After my mother died I now have found myself a full time care manager for my former domestic partner, whom I still love more than life itself, even though I live separately. *Fortunately* I was able to get her on Medicaid, so she gets 24 hour care. But I am running the show: supervising the aides, being her “voice” (she has dementia) with all care providers, handling paperwork and finances. Yes, I’m able to work enough hours to pay my bills (I now also get Social Security) but I hardly feel that I am making the most of my talents. Thankfully I *do* sing (I’m a church soloist) and write, but these seem like small things. Although I would not trade one day with my loved one for anything. – RM
A “guilt free” day that I could just enjoy the day no pain, no worries, just a day away from it all. – DG
My spouse. Our child must come 1st in both our lives, out of necessity. She is totally dependent on us for everything. She can’t even tell her caregiver that she needs a drink of water. Most people have no idea how blessed they really are. They let their burdens overshadow their blessings. If you or your loved one can communicate his or her needs then there is a lot to be thankful for. – RK
Stay in my bed watching tv 📺 resting!!! I suffer from fibromyalgia sometimes I feel I’m hitting the wall😞😞 – GO
A day without worries, a day to myself without feeling guilty! – DH
A long, hot, uninterrupted bubble bath with a glass of wine and a candy corn scented candle burning. Ahhhhhhh… – DS
Myself. Doing something I would like to do for a change. – AJ
My other children, who often take a back seat. – JF
A life of my own for a change. – KM
A guilt free and anxiety free day to myself! I need me time so bad!! – LS
Vacation, away from work. Away from everything that’s stressing me out. – BJ
Just a bit of time together alone with the man who helps me the most with my son’s care. – DS
To have just one day where I can just pamper myself at a spa! – TS
I wish I had time to ride a bike and go swimming, just floating on my back in the pool. – CP
A haircut! – BJ
As caregivers, we find ourselves simultaneously impossibly busy and spending lots of time waiting around. We’re exhausted, but then we’re up all night staring at the ceiling.
What’s keeping you up these days?
All the work that needs to be done to the house. I’m in charge of finding reliable tradespeople too. I must maintain a safe environment. Always a monkey on my back. – EO
Safety of those I love. I am having difficulty with that since my husbands accident. – TW
I wanted to go home for my brother’s memorial service. It’s the first loss in our family circle. He was the youngest. – JS
How I can be a better father to my three special needs boys. I fret over it so much I get LOST in the pages of this here book cuz this is the only place in my reality I can run too without leaving my sons. I can’t leave my boys but they deserve better than a distracted overwhelmed sperm donor. They need their daddy. I feel guilty AF but I can’t stop. How do I become a better less distracted daddy? – NS
Wishing I had more happiness. Since my sons’s injury that happiness factor has disappeared–my personal happiness; my son’s happiness–the fact that my son’s friends stopped coming to visit. – DA
I’m giving birth any day now and I’m so terrified. The plans of getting my two little ones somewhere quickly is bothering me, my dogs having a place to go is bothering me, how my delivery is gonna go is really bothering me… Just so much I’m worried about. – MP
My daughter’s upcoming surgery to put a g-tube in. I’m the queen of over thinking! – DC
His next hospital stay 😢 The parking fee is 15$ a day! His last stay was 13 days=$165! His fixed income SSD cannot support us as it is now! I’m his 24/7 caretaker! 3 of his meds are mostly covered by NKF (kidney x 2009)! I’m not allowed an income or coverage drops! 😢 – RM
How do i make my house handicap assemble for my husband with no money. – SL
How I’m ever going to be able to cope with living with my Moms dog since bringing Mom to our home. I am not a dog person and it’s not going well. – JS
My husband was ill, for almost 20 years, before he passed. He needed constant care, and I was working, full time, as well as caring, for him. Two of our adult sons moved, with us, to another city, about an hour from our home town, so that we would be able to better care for him, and get him to routine dialysis and medical appointments. After my husband’s death, my sons and I stayed together, while they looked for better jobs, as we decided to stay in our new place. It was a sad, and confusing time, for us, as my husband passed, only one month after we moved here. I decided to call Dr. Laura, for advice, on how to move forward. I said, on live radio, that I was a widow, living with my adult kids, in my home. In literally, 15 seconds, she ripped me a new one, yelling at me, telling me I was the reason this country is so bad, and stated that I must not have read any of her books. She screamed, then hung up on me. My sons work, we remained together, to support each other, and I, personally couldn’t afford to live, on my own. I feel horrible and guilty, for being a rotten parent. I constantly hear that woman yelling at me. – LR
I wonder why me, being the oldest if 6 kids is the only care taker of my 85 year old mom. One is dead. One is who knows where. One is an alcoholic. The youngest 2 live 400 miles away and seen to think they are doing something great by visiting every 4 months. I’m just stinking tired. I’m nearly 65 yo. The 2 youngest are 13 and 15 years younger then me. They work, but do not have children. – DK
I tend to over think everything But right now I am overthinking what will happen to my son who happens to be disabled when my husband and I are no longer here. – CV
How I have no life and I feel selfish thinking this. Mom reared two children by herself. I should be able to take care of her and not complain. More overthinking is about how no matter how much I do for her, it is not enough. Last, what it will be like without her. – CW
Money, how am I going to pay the bills. – DA
What I need to do, clean, organize (including my to do list) as well as getting a new attorney after much $$$ was spent on one who was supposed to be the best in elder law and really did not do a good job for our family situation. – RR
EVERYTHING! Work, paying bills, auto repair, sitter service, the silly things mom does, maintaining the house and lawn, pets, shopping for necessities, taking time for a vacation, my own rest time and sleep. The list goes on, but it is overthinking about everything. Sleep. What’s that? – BG
My career and living arrangements right now. Been getting my life back together after caregiving for my mother. – AG
What to do with the house, how to get mom to go to adult day care, or how to pay for caregivers since I have nothing, how to put her in a home, or whatever… it’s endless. No decisions regarding me. Must always think about her. – GE
Everything too. I’m feeling sad that my dad was sad thinking about how my mom has passed. Seven years ago now, but to him it feels like last year. 😢 – LG
I survived my lower back surgery. Rehab for the next six months. Now what do I do? I can’t lift more than 10 pounds. I’ve been a CNA all my adult life. – DA
How I can earn enough to cover mom’s medical and daily expenses. How I’m probably not doing enough even if I feel I’m perpetually exhausted. – RR
If my mom passed, I would be so ashamed of this house. Hard trying to find the time to do it. Sounds shallow, but the truth. – PC
How to go to the ER alone without my dad, but still make certain he’s safe w/o risking my own health. – BS
My mom is having the longest episode of atrial flutter that she’s ever had outside a hospital. I’m monitoring her, but scared. – NL
What do I not overthink is a better question. Some days I can’t even come up with a dinner idea cause I overthink what would be easier, better, quicker. – AH
Whether or not I’ve done everything I could to prevent my mom from dying. 😞 – AM
What a horrible person I’ve become! 😕 – SG
People that are just plain selfish and care more about themselves. – LF
My future.. am I going to end up as Wal-Mart greeter cause of no job or skills in 8 yrs… lacking education and socializing. Being a caregiver is taking a toll on my health. – DB
Family caregivers find themselves needing to know everything from the finer details of drug interactions to how to empty storage units.
Here’s what our members wish they’d gotten training and information about:
What are the rights of patients and caregivers?
I would like to know what rights that I have in regard to my daughter and her dayhab programs and her living arrangements. I feel like it doesn’t matter what I say or do and nothing can be done about things that I feel are not in her best interest. Please point me in the direction of lawyers or an agency that can help people with disabilities. – Dorothy
What can be done when residential facilities aren’t properly staffed, trained, and supervised?
How does the law protect people when probate hasn’t been carried out correctly?
Legal options such as guardianship, medical power of attorney, advanced mental health directives, special needs trusts, etc. – Kim
What health insurance will cover caregivers who don’t qualify for Medicare/Medicaid, but can’t afford coverage under the ACA?
How to get help when I’m beyond exhausted. What programs are available to us, in Texas! I don’t have the time or funds to jump through any more red tape government hoops! – Regina
What programs support family caregivers who’ve retired early or taken years off of work who now can’t afford to retire?
Available tax credits — I didn’t know I could claim my parents on my taxes since I was their full time caregiver. – Lorne
How can caregivers help people with mental illness have a clearer view of reality?
How to master helping people feel relaxed about their anxieties as they age. – Kathleen
Time with my mom. I lost her a week ago. – Lisa
Wish we could just stop time…To watch my kid’s deteriorate before my eyes w/this awful muscle-wasting disease…It truly goes too fast and is heartbreaking. I wish they could have time off from their disease that still has no cure, but it doesn’t take a day off. – Jennifer
Family. I have family but I wish we were all closer to one another to help each other. So maybe I should say I wish I had more family time! My husband and I are in Hawaii and all the family is back on the mainland now. I miss my children and grand children so much. – Theresa
Hours in the day, patience, sleep, and free time for me. – Amy
Time to myself I work and been coming to the nursing home every night for my mother for the last 9 years. – Dee
Time: I actually have lots of it but it’s chopped into almost unusable, unpredictable moments. Then cash with enough of which I can buy more time. Then…well you know… – Patrick
TIME FOR MYSELF!! And I don’t mean time that I can sit down and still be doing other things like filling out forms, etc. I mean doing what I want to do for the sole benefit of ME. It’s very rare I have that opportunity. I’m always doing something for someone. – Danielle
More time with my husband before ALZ completely steals him away. – Kimberly
Time alone with my husband – we need to get away once in awhile. – Valerie
I wish I had had more time with my husband before Alzheimer’s took him from me. – Joy
Time and energy! As well as for other to have more compassion and empathy towards those who are ill and those whom are their care givers. – Jessica
Time with friends and family to share fun times together. – Kathy
Financial & Practical Support
Cash…Then I could get things DONE! After all that is finished, I’d take some time off and get away…a little vacation maybe? – Donna
A sitter for my elderly dad so I can go visit my husband in the nursing home. – Judy
it’s hard not being able to work and need so many things…it would make the process much easier not having to worry about health and bills. – Venus
Programs where we live…we live in Dothan AL and because my daughter is not mentally challenged there is NOTHING at all that she qualifies for…she literally spends all day every day on her tablet…its so sad! – Laura
Money! Enough to take the pressure off and to feel secure (in so far as that’s possible) every time the car breaks down and the rent goes up and the supplies go up in price and my health implodes, etc. The PTSD aspect of waiting for the other shoe to drop and blow everything out of the water is humungous! – Ryoko
Time! Money! Benefits! Never enough time to work and spend time with the kids. Not enough money to buy things we need and Bette health insurance, maybe a retirement package – Tiffany
Better health and money so I could take better care of my husband. – Mary
Finding ppl that REALLY want to help my mom to receive soc. sec & medicaid (Kancare) more time w/my kids & husband. Money to buy a house & a car to take my mom back in forth to Dr.’s & chemo therapy appts. – Susanna
Money. With more money my husband wouldn’t have to work all week and most weekends. We could do more things together, travel, date night with a babysitter or two, but our own home, better/more reliable vehicles and a wheelchair lift van, all the equipment or modifications that my son needs it simply could use to make things easier. So many things. – Amber
Money! So I could provide whatever my Mother needs to recover as much as possible from the 4 major strokes she’s had. Insurance doesn’t do nearly enough. And it’s a constant battle to get them to cover the few things they do cover. It’s depressing. – Lisa
Money. You can’t have too much money when dealing with serious illness and caregiving issues. Everyone’s quality of life improves with increased financial support. – Kim
Joy & Resilience
Days feeling well enough to do something. – Cheryl
“Good” days where my husband and i can go do little things..like breakfast…to the beach. Money is great, but without health its nothing. – Ashley
Love…for my mum to have more ‘loving’ visitors and…love…for me – its no fun being a carer and single too. Be nice to get a cuddle from someone occasionally. – Joanna
Help, energy, patience, and more of myself. – Janie
Peace of mind…I worry about my clients when I am not there. I worry that they are not eating properly. – Michele
Sleep. Patience. (kind of go hand in hand). Support. Respect. And my own private island. – Kimberly
Energy!!!! I am so-o-o tired! I am a caregiver and can hardly keep going. Feel guilty for what I can’t do. – Phyllis
Back when I was caregiving, before my husband died, I wished I had support more than anything. I felt so absolutely alone. Sleep was the second thing I wished for and it was so hard to come by. – Sabrina
Friends that really cared…even just to ask me over for a cup of coffee. – Judy
True friends, I’ve got rid of all my friends. You cannot come in my house and disrespect me. – Cindy
I wish people would stop taking advantage of my handicapped daughter! Also that healthy people would stop staring at her. She became a quadriplegic 6 years ago & I’m pretty sure most people have seen a handicapped person in a wheelchair before. People can be so rude, they forget that they could accidentally end up in her position! – Patricia
Some responses have been edited slightly. You can see the original responses here.
Caregiving involves lots of moving pieces. A CareMap can help you understand how it fits all together so you can find ways to improve your daily life.
The Atlas CareMap is a hand-drawn representation of a caregiver’s network. It illustrates the caregiver’s own support system, highlights what is working well, and often reveals duplication or gaps in care and resources.
You can learn more at Atlas of Caregiving.
Coping with stress is a constant challenge for caregivers. Coping mechanisms that are actually realistic for caregivers is a pretty frequent topic of conversation. Here are some of the suggestions that came up recently.
After the day I had, tonight it was a glass of wine and later ice cream with a banana and chocolate syrup. I know, not good! But it helped — LOL – Deb
I make a cup of tea when I get home, then snuggle up with my cat & listen to her purr. If that doesn’t work, vodka! – Jen
I am not in a position to take time off. What this means is my brain will not let me rest by staying in a hotel room, or anything like this. It has to be short lived, such as being able to drive on my own to get stuff done, where I decide to stop and watch movie or pick up a treat. After 7 years of living like this, the means to cope with stress have been worked in. No, it doesn’t always work. I have found for myself, I need to give myself permission to fall apart and if it is an off day, so be it. I know, easier said than done. The bathroom with the handicap style shower, with a place to sit and rails, I have set up to have a spa feeling. I have similar relaxing plans for the garden. The porch on the other side is being groomed to be a place to sit and relax, since dad likes to read outside. – Brieya
Spend a few quiet moments in bed before getting up in the morning, using that time to scroll through Facebook and Pinterest. Do a daily morning workout and yoga in my bedroom in the AM while mom is doing YouTube chair yoga in the other room. Listen to some positive Pandora music when showering and getting dressed. Take mom to the park or the beach to soak up some Vitamin D. Read when I have free time. Enjoy an evening walk with my husband and return to a nice glass of red wine. – Paola
I cope with God, wine, and music!!! – Mayra
A nice long drive in my car ? – Naomi
Tomorrow is another day and I will be there to help, no matter what the day brings. Some days I have a glass of wine or a beer before going to bed. – Mary
Play video games on my phone. Seriously. I am so the bomb at Cooking Dash. I’m amazing! – Kim
Yoga. Prayer. Chocolate. – Carol
Lots of prayer, reading posts on FB with encouragement and positive words, get enough sleep, walking several miles every day, take DHA fish oil and Sam-E, listen to music and sing along with the radio. – Sheron
Get lost in a good book, bike on my recumbent bike and sing loudly to favorite songs…and, of course, pray! – Susan
Bubble bath+ buttermint tea! And shopping!? – Jona
I listen to music, talk to one caring friend, go feed my horses–they’re old so it’s all I can do. – Carol
I would LOVE to be able to garden again, but I have become physically disabled due to spinal injury, I can’t do that, so I try and get a little bit accomplished around the house, in addition to caring for hubby, before I mindlessly play solitaire on my phone. – Kathryn
I work outside about an hour a day in my flowerbeds and garden. And I tend to do it when my husband is napping. Therefore I have peace and quiet. – Stephanie
Writing. I hope to one day write a book on my experience as a caregiver. – Sara
Try to go for a run(as if)…try to do sewing for myself or my children…otherwise, go into function mode and get on with what must be done. – Tracey
Gardening! And the occasional shopping trip, on or off-line, and oh yessss the choc-o-lat-tayyy!!! – Wendy
Long hikes in the woods is the best way for me right now. – Penny
Chocolate and talking to my sweet golden retriever. Unfortunately he’s old and wearing down along with my hubby. I can’t even go there… – Debra
I have not de-stressed well at all since my best friend, my dog Diego died 2 years ago at 16.5 years old. He was my zen. He instantly calmed me. We went for walks and snuggled a lot. I’m a 6 hour drive from my husband and have only been able to see him 2-3 times a year for 4 years now. I’m considering leaving my mother (my whole family agrees) as she isn’t open to any options (move up with my husband and I, assisted living) and my mental health has bottomed out. – Salem
I don’t get to relax – my hair has all but fallen completely out – when I can I go visit with my horses which I haven’t ridden in over a year- and my dog sleeps on my bed with me and knows when I’m overdone. – Rusty
I have always used sleep as a way to relieve stress since I was a small child. You could liken this to “freeze” in the fight, flight or freeze adrenal response. It’s harder to get sleep when you’re an adult though. – Jeannine
Real time off
Well after the past 4 years of first taking care of my dad at home until he passed away almost 2 years ago and then taking care of my mom with Alzheimer’s…my therapist suggested if I didn’t take this mere 3 days for just me, I won’t be able to continue at this pace. I really feel like I pushed myself to the edge. And instead of going over the edge I decided to listen to my doctors this time. For the very first time I have reserved a hotel on the beach for 3 days. Where I have instructed my family that during this time….I am not a wife, mother, daughter, caregiver, sister, friend, or anything else. I am disconnecting from my life for 3 glorious days by myself sitting on a beach while watching the waves! – Marianne
I make sure I go away completely by myself for a couple of weekends a year. I find some kind of conference I am interested in a place I would love to see and just go. I do not feel one bit guilty, because I come back refreshed and stronger to deal with life! – Susan
You can read all the responses on our Facebook page.
We asked the community if they’d modified their home in order to better accommodate the person they cared for.
The most common additions were:
One item I found very useful, in addition to the items others have listed here, is our Honeywell wireless doorbell purchased from Lowes. We attached the doorbell to mom’s bedrail and the speaker is across the house on our bedroom nightstand in case she needs us during the night. I can also bring the speaker outside with me when doing yard work (250 ft range). – Mike
We have the same thing and it’s a life saver. – Genie
If your person is small like my husband, you may consider getting a kid size wheelchair. It fits through those smaller doorways. – Pierrette
A note to homeowners: ADA requirements for wheelchair ramps are rules for public establishments. You do not need a 1:12 ratio in a private home. Our wheelchair vendors have said 1:9 ratio was just fine. That is what we have for our house and it has been entirely satisfactory. – Lee
Not big things but little things. Hand rail in the tub. Shower seat. ADA toilets. Reaching grabbers in every room. Guard rail on the bed with a yoga strap to roll over. That bed rail is the one I used when I was little. It is metal and super strong. – Alicia
Removed all rugs, built handicap ramp, installed railings in bathrooms, bought a swivel shower chair for the tub/shower, removed the door into the master bath for ease of entering, have hospital bed and bedside commode for nighttime use, electric recliner for ease of use…monitors in the great room and bedroom. – Deb
We have chain locks- up high on all doors since my son is a “wander/runner” with asd. We also have all cabinet doors with magnet locks and I can’t decorate for the holidays. – Danielle
We have installed hand rails in my Mom’s bathroom and shower to keep her safe. Bedside rails in her room. We also modified appliances when she was able to use them (she is sight impaired). We are still trying to figure out what to do with our stairs. We have a 4×4 at the top of the stairs and when Mom hits it with her walker, she knows to go around. Most of the time. Sometimes she just keeps pushing and banging against the barrier and I’m afraid she will topple over. My biggest fear is that she will fall down the stairs. – Kathy
Haven’t had the money to do much. We have a walk in shower, but she wont’ use it. Taller toilets. I had handrails installed on both sides of the stairs. I also have a video baby monitor in my moms room so if she gets up, I can see and hear her. She isn’t too mobile, so she comes down in the morning, then stays down until she goes to bed. – Julie
My family installed rails and put in a safe shower with no slip bottom. I have alzheimer locks and door alarms. recently added a driveway alarm to the door which I like better as the alarm rings at my bed if someone crosses the door and goes out the sliding glass door. – Cindy
We added rails to the front and back porches. We installed a handle bar on the rear door. All rugs were removed as well as the floor transition panels between each room. Also installed bathroom bars. Other minor changes done as well. – Sharma
Custom windows with tempered glass and special locks for my autistic teen who kept breaking the glass. – Karen
A nice ramp and deck in the back of my house (front yard is too small for a straight ramp), new doorknobs (more like handles) on her bedroom door and the bathroom door, and I removed all my pretty rugs from my hardwood floors. (Tripping hazard). Other things I can’t think of now. – Angela
While she was still in the ICU I had her mom get in touch with my wife’s uncle to have railings installed up both sides of each set of stairs. Also because she was a flight risk I hung bells on the bedroom door so that I would awaken if she tried to escape at night. – Andrea
I added a stair glide stair lift to take Daddy up and down the steps. Also railing for the shower and a shower seat. It was a slide chair….1/2 out of bath and 1/2 in, He sat and lifted his good leg over tub and I then lifted the bad one. He scooted over. Worked well. Sooooo much change in life when being a caregiver. – Mary
The VA came in and did an assessment. They put in ramps, stair lifts, hand held shower nozzles, shower seats and grab bars! We were so grateful, because my father in law really benefitted from the modifications! – Sharon
We set up ramps, chair lift, tub rails, adult height counters in both kitchen and bath. Remodeled complete basement with wide doorways and easy two and three way lighting including switches with remotes for easy lighting. – Linda
Adding on an accessible bathroom was cheaper than remodeling our master bath (which had already been completely gutted and remodeled already.) Its an option worth considering. An additional bathroom almost always adds value to your home. – Libbi
Handicapped height toilets. A new bathroom for him; toilet, sink, and a shower with a bench, hand held option for showering, and no doors or curtain. There is a drain in the middle of the floor. Easy for me to shower him and I don’t have to lift him in and out of the tub anymore. Ramps for front and back doors so that he can be more independent and there’s less worry of him falling. Half in ground pool so we can get him in and out more easily and safely. No throw rugs; they’re a trip hazard. Wider doorways for when he needs his wheelchair, which is every night and morning when his orthotics are not on. We also bought him an adjustable bed to help with reflux disease. – Ginnie
Installed wheelchair ramps, converted basement bathroom walk in shower by expanding the room to a roll in shower room, add’d a Acorn stair lift , mounted a chain above bed for lifting & adjusting self, hand rail and Auqa bath lift seat for main floor bath that was replaced with a hydrotherapy jetted tub, 2 shower/potty chairs. 2 push behind wheelchairs ( 1 for main floor 1 for basement) 2 electric recliner chairs 1 for basement 1 for main floor. a single electric bed for main floor living room and a queen size electric bed for basement bedroom, monitors, and handicap van. – Brenda
Outside the home too. Lots of cement walkways wide enough for wheelchairs, raised beds, keeping plants near to discourage wheelchair in dirt/mud. – Kathleen
Presently under remodeling…..it’s getting on my nerves but it has to be done. Widen doors, ramps, new walk in shower, remove carpets and replace with laminate wood. – Delisha
We gutted the main floor and widened hall, doors, opened kitchen, 5′ turn around in master bath with raised toilet and roll in shower, ramp in side entrance, chair lift to basement, eliminated any raise at deck door, other doors out, van conversion, these were the major things. – Sue
Initially yes. But then the old house became very impractical even with modifications so we had to move altogether to a much more care friendly home. Life is easier and more comfortable now. – Frances
Moved in Dec to home with a more open floor plan & thought everything was good. In Jan we took out carpet in mom’s bedroom & installed tile. Removed bathtub, toilet, & vanity in her bath & make walk in shower, handicapped toilet, new vanity & grab bars everywhere. Approximately $15k we hadn’t planned to spend. – Danette
We had to be moved to a bungalow because my son has Huntingtons disease. It has a wet room. No other modifications. As apart from bubble wrapping the whole contents of our home this dreadful disease doesn’t really ‘do modifications’ just danger with no solutions 🙁 We get by on a wing n a prayer x – Shelli
To view all the responses, visit our Facebook page.
We asked our community members what the best source of caregiver support they’ve found is. While we could all use more support, here’s what’s helpful.
I am the lone wolf taking care of her now. I feel just left to completely be in a silent world.can’t get out with the way things are being the sole caregiver so Facebook is a godsend. It sure gets lonely. – Renee
Facebook pages aren’t the same as human connection, but you might find some understanding on other caregiving pages. There are some that are private, and most I have found are under the sandwich generation title. – Chelly
A group on Facebook filled with like-minded couples all dealing with spinal cord injuries. It’s called Love Like This Life. Wonderful group. – Erin
I have found great support though 2 fb groups for SCI caregivers and spouses and another for FTT. – Kirsten
You can connect with other caregivers in our private Facebook groups.
Volunteer caregiving organizations
The Alzheimer’s Support Groups has a 24/7 helpline 800-272-3900. There may be Faith in Action or National Volunteer Caregiving Network respite programs in your area. – Helen
Home Health Care Agency…but I miss so much time from work when the nurses choose not to show or cant show. I dont have family or friends to help. My daughter or my other son they help here and there when I get to a point where I HAVE to have some time for myself. Surprised I still have a job. – Rhonda
Personal support. Just having someone to talk to, who can say with all understanding, “I get it. It’s hard, I know, but you will get through it” because they have been there. Having someone who can provide real, honest empathy instead of empty platitudes. – Debbie
You can always connect with other caregivers here as part of our community.
Our Hospice Nurse and Aids. My Aunties, Cousins and friends who share funnies with me on Facebook because they know I can’t get out too much. – Carla
Palliative care then hospice for my parents. – Deb
Hospice was a life saver. Their employees and volunteers1 – Julie
Family & friends
My husband has been helping me take care of my mom in our home for over 13 years. I recently completed my Master’s Degree and could not have juggled caregiving, work and school without his support. He is an amazing husband and the best son-in-law ever. – Kathy
My husband. We’ve been married 3.5 years. He is God’s blessing to me. – Jeannine
Right now my younger brother. He just recently took over so I could have a ‘me’ day in town. – Mary
My sole support for caring for my adult son with muscular dystrophy is my younger son and a couple friends. – Erika
Support is limited
We were caregivers for over twenty years and over time friends, family and others drifted away and we were left on a island with our loved one and each time we reached out for help from Agencies the door was slammed shut or we were told they could provide someone for two hours one time a month. Caregiver support is really a myth. – Jean
You can see all of the responses here.
Caregivers are at risk for back injuries. That’s a fact.
People who’ve never done it might imagine caregiving is holding hands, making soup, and saying reassuring things. If only! Caregiving can be incredibly physically demanding.
Getting someone in and out of bed when they can’t assist you is a tough job and can be dangerous for both of you if you don’t know how to do it! Here are some videos with instructions on how to avoid injuring yourself or the person you’re caring for.
Here’s how to prop someone up in bed
How to change the sheets with someone in bed
Changing the diaper of an adult while they’re in bed
How to get someone out of bed
Tips on safely transferring someone from bed to a chair to the car
And if you’re feeling sore, here are a few stretches to help you get back up and running.
Resilience. Tenacity. Strength. Toughness.
Whatever you want to call it, caregivers need it. It’s that thing about your personality where shit is exploding all around you and you just roll with it. Roll up your sleeves and get to it, every day, no matter what.
Inner strength is a decision.
There’s no trick to it. There’s no pill to take. You just decide that you’re going to do this, come hell or high water. And then you do it, no matter how hard it is.
Put one foot in front of the other.
We all take it one day at a time, one moment at a time. Fear, despair, anger — emotions are irrelevant when you’re busy. Acknowledge your emotions, see what’s behind them, and then move past them.
Know why you’re here.
Everything I do as a caregiver has a reason for it. I’m here because I choose to be. Are you doing this to show your love and devotion? Are you doing it because you’re living your values? Are you doing this because you love helping people? Know your reasons and remember them when things are tough.
It will always be hard.
Caregiving gets easier, but it’s never easy. The harder I push myself, the more I can do. I’m stronger than I can possibly imagine and I know that. We all have a source of strength — cultivate it.
Create a bubble.
I don’t care what other people are doing, I care about what matters to me. By surrounding myself with a community of people who put community first I save myself from the opportunity to feel jealous about other people’s lives. I’m committed to my life as a caregiver and I don’t want to waste time on a life I’m not living.
No matter how strong you are, we all have our breaking point. Respect it. You can’t go 110% all the time. It’s okay to give 50% if that’s what you need to do to keep moving forward. You can’t sprint forever.
You need highs and lows.
Being on high alert all the time will kill you. Our bodies aren’t designed to be hyper vigilant at every moment, it wears us out. There are boring moments, even in the ER and the ICU. A lot of them. Cherish them. Allow yourself to be bored.
I’ve been watching our Facebook page get taken over by a bunch of school yard bullies over the past few months. It’s a pretty confusing thing to see for a support group.
Living in Florida, I’ve gotten an up close and personal view of Trump lighting people up. It’s great to see everyone so excited about the future of the US.
It’s less exciting to see my otherwise lovely neighbors start talking about Liberals like they’re less than human.
Given that Liberals and Conservatives share the same DNA, I imagine they’re doing the same thing over in their own Facebook bubble, although I don’t see much of that.
One of the great things about doctors offices is they don’t ask about your political affiliation before they treat you. They just treat you, because any good doctor doesn’t care what bumper sticker you have on your car.
Caregivers aren’t bond by the Hippocratic Oath, but joining The Caregiver Space suggests you’re here to talk to other caregivers and support each other.
That’s suddenly hard for people, because everything caregiving related has become a button unleashing a political firestorm.
I know these are all words that are just asking for trouble: Obamacare, repeal and replace, Meals on Wheels, Medicare, subsidies, tax credits, health insurance, provider network, work requirements…the list goes on. These words turn people into internet trolls and bullies.
The problem is, how do we talk about our lives as caregivers without mentioning them? I don’t think we can.
But there’s a solution.
We’re all old enough to remember a time when complaining about copays was just that — complaining about copays. Not a commentary on the President of the United States or a declaration of our political feelings. It was a commentary on our personal experience. I would complain about copays and someone else would say agree that they really add up and it stresses them out, too.
We can still do that.
If someone says they’re worried about changes to their health insurance, I can respond to another caregiver saying they’re worried.
If someone is stressed out about how they’re going to pay their kid’s medical bills, I hear that they’re stressed out.
If someone is upset because they tried to sign up for a social program and they got placed on a waiting list, I can relate to feeling frustrated.
If someone writes a post about how they wish the rules for FDA approval would change and I completely disagree, I can say that I disagree without going on a personal attack.
Some people have a great experience with the VA, some people don’t. That doesn’t mean anyone is wrong, it means they had different experiences.
We all know this already. We’re polite to people we disagree with all the time. I disagree with my husband about things. My parents and I seem to have opposite opinions about pretty much everything. And we still love each other. I still support them through all sorts of things and they support me.
We all have enough stress in our lives. We come here to share our ups and our downs and know other people understand what we’re going through. I come to The Caregiver Space for support, but lately it’s been stressing me out.
Let’s leave the political arguments for another Facebook page and get back to supporting each other.
Here’s a tough situation quite a few caregivers find themselves in: being responsible for selling a home that’s not in great shape. What do you do when no one seems interested in buying and you can’t afford to keep it?
My sister and I inherited the house we grew up in after my mother’s passing. We are struggling to sell it.
The house needs some repairs and is in need of a renovation, but we can’t afford to do this. There’s a $9k mortgage.
It’s been listed at $50k, but hardly anyone is even looking at it. What can we do to sell the house?
If we can’t sell it, what can we do so it doesn’t damage our credit? I was told that if the house goes into foreclosure it will ruin our credit.
If the title is in the name of the estate, then it doesn’t affect your credit at all. If you put your names on the title, then it will. Sell it ‘as is’ for anything over the mortgage and realtor fees. I’m sorry you’re dealing with this. The loss of your parents and your childhood home must be difficult. The right family will come along, fix it up, and again make it a loved home with happy memories. Peace of mind is priceless. – Kathy C.
I was in a similar situation about 10 years back after the death of my brother. There was a higher mortgage than yours and it needed lots of repairs. I let it revert to the bank (just quit paying the mortgage) and they sold it at a sheriff’s auction. Funny thing is, the new owner got in touch with me and had me over to see the improvements he made. He’s a real nice guy and it’s comforting to know my brother’s home went to him. – Martha P.
Lower the price and it will sell. – Catherine D.
You may not want to make big financial decisions when you’re in grief. Give it a little time. – Kris M.
I’m sorry for your loss. I’m sure you have a lot of emotions going. Try to think of the house sale like a business. Sell it quickly and take what you get. Don’t worry about what you could get, since you can’t afford to make it ‘marketable.’ – David F.
What about donating it? Perhaps someplace like Habitat for Humanity will take over the mortgage and fix it up so someone can live there. – Mari D.
Is it your mortgage? Unless the mortgage is in your name what happens will have nothing to do with your credit. – Jack R.
If you’re in probate, be aware that you may need the probate judge to approve the price and buyer. This needs to be part of the listing. This adds time to closing and frequently results in a lower sales price. Probate judges are used to houses selling for somewhat less than they’re worth. – Jana D.
Not every upgrade or repair you make has to be expensive. – Cori C.
Are you listing with a realtor? Ask her to market it to investors who may be willing to do the work. If you’re not getting bites, you’re priced too high for the work that needs to be done. You have room to drop it. – Jennifer M.
If you just want to get rid of it, see what an auctioneer thinks it will bring. – Erica J.
Look into local real estate investor Facebook groups. Join and post the ad there. Check out FSBO (for sale by owner) groups. – Patrick N.
Getting to sleep when you’re dealing with the stress and anxiety of caregiving — and anticipating your next interruption — is no easy feat.
Luckily, there are podcasts to help you slip back into slumber. Here are a few I’ve tried and found helpful.
This collection of meandering monotone monologues is just like that history teacher who you couldn’t stay awake for. It’s a sure bet.
Another project by the same folks as Sleep With Me, but for Game of Thrones fans. You might not believe GoT could be so boring, but he’ll prove you wrong and help you get a good night’s rest.
If you want something without words, this is the answer.
These meditations aren’t specifically designed to help you fall asleep, but they do the trick for me. They’ve also been helpful in making my every day life a little smoother.
I sometimes find that these old time radio detective stories keep me awake with suspense, so tread with caution.
My grandfather’s instructions had a knack for putting me to sleep, so this one works wonders for me.
This interview podcast may not quite put you to sleep, but it’s relaxing and informative.
When disabilities or memory impairment make going out more difficult, seniors can feel like they’re not able to do the things they love anymore. Going online can help them stay social, learn new things, and have fun without the hassle of going out.
That is, of course, if they can navigate the internet!
Here are some tools to help seniors get online, stay safe, and have a good time — giving us time to get some things done or maybe even have a few moments of peace and quiet!
Skills to get started
If your senior is able to attend classes in person, check with SeniorNet or your local library to see if they offer services to help people get online. If not, there are online classes and videos you can help them access.
This great website helps seniors learn the computer skills that feel like second nature to us — like using a mouse — that can be difficult to get a hang of.
The BBC created Webwise as a beginner’s guide to the internet. It starts with computer basics, walks you through email, introduces users to the internet, and helps guide seniors through the basics of social media. It even explains how to stay safe online. This is a great resource.
Senior Planet’s tech tips section is an always-up-to-date source for information on the latest tech trends, apps, and tools.
A friendlier experience
If you’re helping set up a computer for someone with visual or hearing impairments or trouble typing, this site will walk you through adjustments you can make so they can have an easier time navigating the web.
Clear out the clutter of typical search engines and direct your senior to Good50 instead. They’ll get the same results with an easier navigation experience.
Clear away the clutter of a typical PC interface and replace it with something designed to be intuitive for seniors.
It’s a pretty common problem: the person you’re caring for is refusing to bathe.
Here’s advice from other caregivers on how to keep everyone clean, safe, and happy.
What’s normal to them
We have to remember that more than likely “back in the day” your father did not bathe except for perhaps once a week for church/synagogue time. Encouraging cleanliness is not easy, but perhaps sponge baths are the best hope for now. – Marie N.
The feel of the water
[People] with sensory processing disorder struggle greatly with baths and showers because they don’t like the feel of the water. It’s not uncommon for anyone of any age to struggle with SPD, especially the elderly. – LaKea H.
Making them comfortable
Identify something special to them — might be a food treat, an outing, a special visitor.
For my mom it was having a fire in the fireplace even when it was warm outside. She loved to sit in front of it and so it was great to start the fire and then she knew when she got out that she could sit and warm in front of it, I bought those 4 hour logs.
Warmth is very important — remember how you would warm the room for a baby’s bath. We have to remember that it is a bath they likely remember not a shower.
- For women lavender soap is soothing. Or their favorite perfume from years past.
- Perhaps get some Old Spice for older men and put some out in a bowl to the smell is in the warm room. Many older men used to use Old Spice.
- Never spray the water on their head or face.
- Let them do as much as they can.
- I agree with letting them start with washing their hands or face with a cloth.
- Having a secure and easy to use bench to sit on makes it less scary.
- Wear something you can get wet. Have plenty of towels and mat because water will be everywhere.
Make this difficult time a sweetly speaking quiet time. We caregivers have to acknowledge bathing is often difficult but not a battle of wits or strength. A shower can be weekly and bed or sponge baths in between. Just making sure the personal areas are really cleaned to avoid rashes and breakouts and skin breakdown. Finally, the person might do it easier for someone else. If so let the other person do it. Even if you have to pay $20 a week to an aide it will be worth it. Some aides will come in just to do a bath. – Jeananne E.
It is a difficult situation, but once or twice of having the bathroom nice and toasty warm with the bathwater and all grooming necessities in place, it was easy to take my Dad by the hand andassist him. He did always feel much better afterwards and it soon grew (in that stage) to be my responsibility of getting him in there.
Sincere encouragement and patience are key in hopefully gaining the needed level of cooperation. Depending on what meds your patient or loved ones are under the influence of can be a determining factor as well. Valerian Root (a natural supplement) helped to relax my Dad. Don’t use it unless consulted with Dr. if other meds are administered. Best of luck and love to all under these circumstances. I know it is not easy. – Vicky H.
Ease your way in
Don’t say bath. To the elderly it’s allot of work.
Just let’s wash your hands and go from there. That’s what I did with my Mother while she was walking around. She’s in a hospital bed now and we use the same words. We never say bath. She says I just took one.
So we now say we’re going to wash your hands. And then go into full bath mode. After its over we say doesn’t that feel great. She agrees and takes a nap. – Diane L.B.
Use bed bath products & wipes
In my case I used bed bath products. Most can be found at local pharmacy stores. Wipes, no rinse cleaners, shampoo, buzzed off hair all make things easier. Baby wipes for sensitive skin are good.
It’s a struggle
Oh how I feel Your pain! My Dad was the hardest. He would just cry cause he didn’t think it was right for me to give him a bath. We struggled but got it done. My Mom on the other hand is well something else, but we manage. They even admit they feel better after.
Adult disposable wipes are good, too, when the struggle is real. – Pat S.
It is literally IMPOSSIBLE to get my MIL to bathe! She will cuss you, hit you, try to bite you, and cry, like you are trying to kill her or something. Nightmare! – Vickie B.
Some days I lay on my bed and cry after doing it because I know it’s a physical demand from her and it’s also one for me! – Kellye H.
My Mom wouldn’t bathe. For 9 months she refused! I have hospice come in now and they give her a sponge bath 1-2 times a week! She’s mean — curses, hits, and throws her cane or even her walker at me! I try to help her…but all I get is cursed at or hit. I just walk away! It’s hard. – KJ
It’s a really exciting time to be in the US. The fact that the current healthcare system is being dismantled means that we have the opportunity to fix the most vexing problems.
I didn’t grow up in a military family, but I married into one. That means I’m dealing with paying with healthcare for my parents and aunt, who are on Medicaid and insurance through their work, as well as for my husband with Tricare, the military health insurance.
While I won’t pretend Tricare is perfect, it’s exponentially better than its civilian counterpart, Medicaid, or even private health insurance. I would love to see Tricare extended for all Americans, not just those who’ve served our country directly.
If we couldn’t do that, imagine if Tricare covered all government employees, like teachers and police officers.
The things we insure say a lot about what we value.
Right now, the government has stepped in to say what should be covered by health insurance. They’re about to make that decision again.
When home care is left out of health insurance, that says a lot about what America values.
I can’t think of anyone who’s willing to abandon their family members. Sure, they’re out there, but I’ve never come across anyone.
Usually people aren’t helping because they know another family member will do it. Or they can’t afford to provide the care someone needs, so they do their best to keep their job and still help out.
I don’t know how to fix US healthcare, but I do know this is our chance to ask that the help family caregivers need be written into law.
I’ve been calling my reps and asking for them to cover home health care, provide annual respite for family caregivers, and improve nursing home care. What sort of support do you want for caregivers?
Call your representative today!
Featured image: City of Angels / Shutterstock, Inc. San Francisco, California, USA – December 24, 2015: Old man in a wheelchair is assisted to get off a van using a lift.
It’s astounding how many adults are chronically dehydrated.
Drinking enough water helps your body work better and helps you feel better. It helps your metabolism work better and improves your concentration.
Staying hydrated becomes more important as we age. Dehydration is one of the top 10 reasons for hospitalizations among the elderly!
If you’re taking care of a senior, be sure to encourage them to get enough fluids every day.
Boost your water consumption
It’s easy to have a glass of water on your desk at work or your table at home, ready to go whenever you’re feeling thirsty. You can also make it a habit to drink a glass of before each meal.
If you’re not a fan of the taste of regular water, you can drink decaffeinated teas or fruit infusions.
Some foods are packed with water: like juicy fruits and warm soups.
Infographics used with permission from Waterlogic.
The caregiving community is incredibly diverse, but it seems we can agree that dementia caregivers — both family and professional caregivers — should be trained. Dementia caregiving is a world where the ‘normal’ rules don’t apply and we all need guidance learning to support, motivate, and keep people with dementia safe.
Family caregivers and professional caregivers both report that they wish they’d gotten training in dementia sooner and that it makes their lives easier — while helping them take better care of dementia patients.
Even at the assisted living facility where I’m a nurse, where I’d say the majority of my residents have dementia in some form, our aides have no idea how to handle it.
One resident consistently tries to “go home,” often packing up all her things, trying to get out the doors etc. The best way to calm her, I’ve found, is to tell her something to the effect of “the moving truck broke down and they won’t be able to fix it until tomorrow.” She accepts that and goes about her day.
So many times I’ve had to coach my aides because they try to prove to her that she lives at the facility, showing her name on her door and things. This only leads to her becoming agitated, then I have to medicate her because nothing will calm her down.
I like to explain it like this to my aides: imagine you’re finishing up your shift and someone tells you that you can’t leave, you live there and it’s time for you to get into bed. You know 100% that you don’t live there. When no one lets you leave you get mad, and scared, and you just want to get out of there–these people are keeping you in captivity. You’ve got to get home to your kids, go grocery shopping, and no one will let you go home. You haven’t worked here that long and now they’re telling you that you can never leave.
Because dementia patients can’t be “taught” out of their delusions. It just doesn’t work that way. So yeah, dementia training should be 100% mandatory. – Devon C.
Here’s what our community members have to say
The focus for many places, caregiving organizations, and doctors seems to be on what the dementia patients have lost ability to do. There is still so much they can do, respond to, which if we help facilitate will make the patients daily life meaningful. – Colleen H.
One of my mother’s caregivers from the agency was up all night arguing with my mother about whether there was a baby in the house. My mother asked “Where is the baby?” The ones that had training in dementia knew to answer with, “the baby is at your daughter’s house tonight so that you can rest.” – Barbara K.
I don’t think it’s a bad idea at all. My husband has Alzheimer’s/dementia and sometimes it is so hard for me to handle the cognitive /not cognitive moments with him. I try to just “go along” with those moments, but, it is very difficult. If there is a better way to handle it with proper training, sign me up! – Kathleen S.
I agree training would be great. Everyone doesn’t have the patience to deal with dementia/Alzheimers patients no matter how trained they are. They first need a heart to care and understand that this isn’t an easy job. – Quince J.
I’m caring for a grandparent and I was totally unprepared for the multiple bad episodes. Even her gerontologist isn’t much help. – Fern L.
There are times that you will wish you had training when they have a really bad episode. That training can make a big difference to their care and your approach. – Nicole K.
I’ve done all my own training on my own time with my own money because I adore these people and they deserve to be understood and their families deserve to know their being well taken care of. – Michelle W.
I used an agency to get a caregiver for my mom with Dementia, it was amazing how little they knew and were just trained on the cleaning part. I was training them and paying them hundreds of dollars…very sad. How do you help your client if you don’t understand their needs? I feel very bad for elderly that don’t have family around all the time to oversee the care they are receiving. – Terry F.
Caregivers who are inexperienced in this field leads to abuse because of the lack of understanding. And by abuse I mean unknowingly acting out towards the person with out intentionally meaning so. When a caregiver doesn’t understand and that caregiver starts to get caregiver breakdown, unintentional harm happens with out even realizing themselves they are doing it. I’ve personally have seen this happen way to many times. It’s a bad situation to both parties involved. – Kim S.
I hired caregivers to help with my Dad, and I was amazed at what they didn’t know about Dementia patients. I had to train them how to react, care for and converse with my Dad. – Patti K.
I take care of my Mum who has Alzheimer’s. I’m very glad I got trained in this area. It has been a stress saver. When I look at my Mum, I see the great honour I have been given to take care of her. – Melody F.
After what my nans going through on a so called dementia unit in a hospital, I think people need training. We have to go to the dementia unit and feed her everyday because they don’t have the patience. They have no idea at all. – Charlotte S.
Some comments have been edited for clarity and/or grammar.
Believe it or not, today is Moment of Frustration Scream Day. The idea is to go outside at noon and yell it out of your system.
I didn’t make it up, but Tom and Ruth Roy did. They’ve apparently been making up holidays left and right and some of them even stick.
Letting it out in a primal scream is a great way to get rid of your frustration and anger.
It can be hard to have empathy for other people when you feel so drained, but it really breaks my heart to see caregivers tearing each other down.
On an article about raising funds for medical care: “I also agree having to beg for money is pathetic.”
On finding the bright side to a traumatic loss: “There is no bright side when you are in end of life caregiving.”
On an article by a caregiver with support from family and friends: “you are not a caregiver. I can tell by this bull()$article. It takes more than a fancy degree to know about being a caregiver. Your article is not only offensive. It is downright demoralizing, demeaning, disheartening and unrealistic. You have no idea do you?”
Why would you come to a support group to be mean to other people? I’m sorry if someone else’s personal experience doesn’t apply to your life. Just close the tab, click to the next article, move on. Why are people with such limited free time using that time to try to hurt someone else?
If you want to read the science behind why people are mean, Psychology Today has some possible explanations. Regardless, it doesn’t help caregivers come together as a community. It doesn’t help us help each other. It doesn’t help us get the support we need from the medical community, our friends and family, nonprofits, or the government. All it does it hurt people.
David summed it up:
No two people are going to have identical experience or challenges. I know people in my home area who are struggling with bigger issues than I face. I also know people who assure me their load is lighter than mine.
Caregivers have dramatically different experiences, but we still have a lot in common, which is why we get lumped together. So, how can we support each other?
We’re here to feel less alone. Let people know you can relate to what they’re saying without shouting over them.
If someone asks for advice, read their whole story. Offer advice for them, not you. Share your experience while respecting that we each live different lives.
We’re dealing with different things and coming from different places, but we have a lot in common. Respect that.
Not everyone is a full time caregiver. This is not a contest to see whose life is hardest, who’s the last appreciated, who’s the most bitter. If it is, I’ll gladly let you win.
It is not more noble to be a martyr. Perhaps quitting your job was the right choice for you. Perhaps residential care was the right choice for someone else. Perhaps someone can afford full time aids. Perhaps tough love was in order. Perhaps unconditional support was the best choice. Each situation is unique. We’re here to support and share, not to judge.
Sometimes you need to let it out. Do it in the forums or in the Facebook groups. Don’t attack another community member. And then move on. Negativity will poison this community. The point of venting is to let it out, not marinate in it.
Tiny Buddha has tips on how to be kind to people when you don’t feel like it and HuffPost suggests how being kind to others is good for you.
The world is a tough place. When you’re taking care of someone that’s sick or disabled there’s hardly any support. We’re all hurting. We’re all in impossible situations. We’re all tired. But we’re here because we know that finding people on here will make our lives easier. Let’s get started.
When you’re taking care of someone it can seem impossible to find time to eat, sleep, and bathe — nevermind look for love. It isn’t easy, but there are other caregivers out there who are going on dates and embarking on new relationships. Remember, everyone has their own situation. What works for one caregiver might not work for you.
Are you going on dates? Share your tips in the comments!
It’s good for you
Having a social life — and a dating life — aren’t just for fun. They’re important for your mental health. Caregiving is incredibly emotionally demanding and you need to maintain a balanced life in order to keep giving to someone else. Even an hour or two a week of social time makes you a better caregiver, because it recharges you. Plus, everyone loves bad date stories.
It’s good for the person you care for
It’s not healthy for one person — you — to be their only friend or source of support. It’s good for them to be around other people and get to socialize. Social isolation is terrible for you and the person you care for — don’t lock yourself up in solitary confinement.
It’s okay to ask for help
Needing to rely on others isn’t a sign of weakness — no caregiver should be on their own. Of course, the logistics of finding someone to provide care in your absence can be formidable. Some of us have an easier time than others — finding someone to keep an eye on my adorable autistic niece is a piece of cake, while I have to beg and cajole to get someone to keep my ornery uncle company, and neither of them requires complex medical care.
Find friends — and dates — online
Don’t know anyone you’re interested in dating? No problem. Sign up for an online dating profile, many of which are free. If you’re not comfortable joining a dating site, Meetup.com can help you meet other people to socialize and speed up the process of meeting someone the old fashioned way. Your local library will probably have a calendar of events, too.
It’s okay to cut corners
We all have only 24 hours a day — you decide how you spend it. Are all of your non-negotiable tasks really non-negotiable? Are there shortcuts you can take or corners you can cut with chores? Are you keeping busy to distract yourself from sadness? Take a look at the calendar and make a realistic decision about how often you can go out and then follow through. Don’t decide there’s no time for you in your life.
Get creative with finding help
Beyond asking for help from family and friends, there might be caregiving volunteers available through a neighborhood organization. Elder Helpers has volunteers around the country; Wake County, NC has the Center for Volunteer Caregiving; Caregiver Companion serves parts of Indiana. Please share information on other organizations in the comments below.
You can also trade time with another local caregiver. It’s also worth it to find a professional caregiver who you’re comfortable with. Even if you don’t use paid care often, having a professional caregiver who knows your loved one is priceless when there’s an emergency.
Fun can be affordable
Going on a date doesn’t have to mean dropping a bunch of cash. Many museums have free entry at specific times or free programs. Most art galleries don’t charge admission — and even have opening parties that the public can attend. If it’s nice out there are often free outdoor movies, dancing lessons, and concerts — or you can enjoy a stroll or a picnic. Ask around to find out which cafes have good specials and affordable prices.
You’ll keep the good ones
Some people will dismiss you as soon as they realize you’re a caregiver, but that might be a good thing.It’s better to realize someone’s not ready to deal with real life early on. People who stick around are going to be the type of people who will stick it out for the long-haul.
You’ll skip the bad ones
All too many of us have been guilty of going on second or third dates with people we aren’t interested in because why not? Well, when you’re paying $20/hr or have begged a friend to come over for a few hours there’s a compelling reason to not waste time with someone you’re just not that into.
You’ll find someone who understands that caregiving is your priority. Even if caregiving is your top priority, if you want to pursue a serious relationship with someone, they need to be one of your priorities, too. Things come up — a lot! — and that’s fine, but you need to be extra sure to let them know what’s going on. Being a no-show or vanishing for weeks on end isn’t an acceptable way to treat someone, regardless of your caregiving responsibilities.
Remember, no one thinks dating is particularly easy or fun all of the time. It’s okay to take a break from dating — or decide you’re not interested in a romantic relationship at all. But if you’re looking for love, it’s important to make that a priority in your life — and seek out the help and support you need to make it happen.
When did the problems begin? By high school she ran away from home. She told me about it. Listening to Bach, windows rolled down, hair streaming in the breeze, done with her old life, driving without stopping, destination Florida. That’s what I now know to be a manic episode.
The problems started long before I came in the picture. Even then, crazy people are lots of fun when you’re too young to understand. You see the fun, not the costs. Sometimes she was scary, but she never did anything to me. She loved me. Even when she hated her own children. She’d pull me aside, too close, telling me her and I were a team. We’re the black sheep; we’ve got to stick together.
No one ever said she had bipolar disorder. They just had the look. Exchanged glances. Grimaces. Excuses for why visits had to be cut short. She came in and out of my life, I was mostly only allowed to see her when she was doing well. But that rule was loose, since they couldn’t just leave her kids alone. Everyone came together to take care of her, push her to get help, even if no one would put a name to it.
And the good stretches could be long. Long enough to feel like maybe I’d imagined the rest. Sometimes it felt like I was her third child.
Then it got bad again. For a long time. Now we were old enough for her kids to move out. That was enough of an excuse for the rest of the family to not bother. She caused a lot of trouble. They’d rather just wait it out. I did, too. I tried at first, like some of us did. But she was too much. Too mean for my adolescent ego to handle. I couldn’t do it. We all backed off.
Finally, over drinks, someone admitted what I suspected. She’d long ago been diagnosed as bipolar. Had been hospitalized. On and off of medications. But there’s not a lot of services available. Waiting lists that are longer than how long she was agreeable. Medications came with side effects and weren’t already covered by insurance she didn’t always have.
Most of us cut her off, but we didn’t mean forever. We were in a holding pattern, circling around her, waiting for a sign it was safe. That’s how we found her, but also how it took so long.
Later, we pieced together that several of us had called and gotten no response. Two people stopped by to say hello, but the door didn’t open. Finally, by the time her daughter stopped by, the mail was pulling up.
The police wouldn’t let her kids inside. They called my dad, who cleaned things up. I was a little alarmed that he took a crime scene mattress to the dump and nobody asked any questions. I guess that’s how small towns are.
The house was sold. The bed stayed in my parents basement for years. Maybe it’s still there.
At the funeral no one said suicide. Or bipolar. Or anything about lack of health care access or shame. I heard an aunt say it’d be better for the kids. It’d be tough at first, but she was a bad mother. Of course, by then there were no ‘kids’, really. We were all as adults and we’d ever be.
The kids disagree. We grew apart. I wonder if it was because I did not play along when they sainted her.
Her name doesn’t come up in conversation very often these days. I don’t think they’re trying to pretend she never existed, but it brings up a lot of complicated emotions and uncomfortable family dynamics.
I spent a lot of time wondering what part of her was her and what part was the illness. At what point did I start to share the blame for never trying to get her help. There are no answers that I settled on. I guess I made peace with knowing there could be no peace. The answers are irrelevant.
Sometimes I suspect my husband can do more than he says.
When I ask him to help a little bit with the chores, or even just cleaning up after himself, he can’t find the energy. But when his friends invite him out, he manages to rally for a few hours of fun.
I’m grateful that he has such loyal, wonderful friends. I’m glad he can still get out and have fun while he recovers – and it does seem promising that he’ll be back to work in a few months. I understand that when you have limited energy you have to carefully choose what to spend it on and certainly helping with the chores is not an enticing task.
I understand those things, yet it leaves me feeling like he has forgotten me. I am not recovering from an injury, I have much more energy than he does right now. But we all have limited energy and limited time. I have things besides chores that I would prefer to do. There are lots of things I would have rather done than the unpleasant parts of caring for him and running the house and earning money to pay the bills for the past few months. Yet they all fall on me.
When he was unable to contribute, that was fine. I love him and we each do the best we can. Right now it feels like he’s not doing the best he can. He resisted my taking care of everything at first. Now he’s grown a little too comfortable with me taking care of everything for him.
He’ll never be back to normal, I know. Soon he’ll be as recovered as he’ll ever be and he’ll have the ability to take care of himself. Even now, he’s back to doing the things he was never comfortable with me doing. The things he was never so enthusiastic about doing still fall on me.
These months of caregiving have undone the women’s revolution. I’ve been asking for him to do more and more as he’s recovering. I’ve been checking with his treatment team to see what he can do and what he’s not quite ready for yet. I’ve been starting out gentle and slowly letting him know that returning to doing his share is not optional. He’s refusing to take the hints, so I’m having to get more blunt with my requests. He’s full of excuses for why he can’t help with our shared responsibilities.
Marriage is a partnership. I don’t think both shares have to be even. We all have our strengths and our preferences. Sometimes one person can’t contribute the way they used to and some people give back in different ways. But we need to find a new balance that works for both of us.
A question posed to Captain Awkward the other day sounded very familiar:
Dear Captain Awkward,
One year ago my father passed away. It was a several year battle against cancer that he eventually lost, and I still miss him deeply.
My mother has struggled in the aftermath. She has been overwhelmed with loneliness and sank into a depression. She loved my father deeply and he was her rock, both emotionally and in a more practical sense (bills, caretaking, house upkeep).
Lately she has struggled more deeply because a chronic pain issue flared up. She has been to numerous doctor appointments, tried multiple medications and treatments, with no improvements. The medications make her groggy and confused, and she has been having trouble sleeping on top of everything. It seems like her life is a waking nightmare.
I love my mom very much, but I am struggling with how to help her. I am an only child, and we have few extended family members – none she feels she can rely on. She has friendships, but does not trust her friends easily/well and has withdrawn lately because she is too exhausted to reach out. She usually rejects the idea of outside/paid help and feels very vulnerable.
My relationship with her has always had some tension. She is a wonderful mom and a caring person, but our personalities have always clashed. She has always needed more from me than I felt capable of giving, but that need has grown immense and my ability to help her has, if anything, decreased. My own life has been challenging – a stressful new job, a wonderful-but-complicated marriage, and grieving for my father.
I try to visit as often as I feel can, have offered help in various forms, but visits are filled with her lamenting that she doesn’t have anyone to help, and my offers of help are turned down more often than not because they aren’t the right ‘kind’ of help (she has rigid parameters and a deep need for control). Her control issues are also triggering for me, because control issues are something that I struggle with as well.
I have always found visits with my mom draining, and even more so now in this acute time. Every interaction with my mother has the ability to send me into my own tailspin, but setting boundaries makes me feel incredibly guilty in the face of her deep need – and the fact that she is a good person and mother.
How can I navigate this tricky balance? How can I help my mom without losing myself in her bottomless pit of need? How can I maintain my own mental health without feeling like the worst daughter ever?
Sound like your life? Read the Captain’s response here.
I have no professional qualifications. I’m sharing what I wish someone had told me.
Your friend is cutting herself and maybe doing some other self destructive things.
1. Don’t freak out. It’s a big deal and it’s not a big deal. It’s really, really common. The odds are that, believe it or not, everything will be fine, eventually.
2. Is she bleeding right now? She probably doesn’t need stitches. I’ve taken people to the ER for all sorts of horrific looking things that made me feel faint and no one ever got stitches. Butterfly bandages and superglue do wonders.
3. You’re feeling a lot of things and that’s fine. What are you feeling? Angry? Panicked? Sad? Frustrated? Helpless? Why do you feel that way? Probably because you care about her and hate to see her suffer and know this is not something you can fix. Let her know the why part.
4. This is probably not an emergency. Some people cut once, some people cut for decades. This doesn’t need a solution tonight. Thankfully, since there’s no simple solution.
5. Cutting is a coping mechanism. It’s not the real problem. There’s no treatment for cutting. People who cut can address whatever they are trying to cope with, find alternative ways to cope, or both. Coping mechanisms that help someone regain control are a great help.
6. Give her the space to talk. Don’t confront her. Don’t arrange an intervention. Watch some movies. Go for a walk. Be around. Invite her to open up by letting her know you care and are trustworthy.
7. Let her know what resources are there. There’s not a lot in the US, but there are some. Maybe you’re students and have access to counselors. Maybe there’s a great sliding scale mental health clinic. Some people swear by CBT, DBT, and mindfulness. Maybe there’s something you can help her with to deal with the underlying problem.
8. You can’t force her to accept help or address the pain. It’s her choice. You can decide that you can’t handle listening to her problems is she chooses to stay in an unhealthy or dangerous situation. It will harm you to watch people who decide to stay in pain and not try to change that. It’s okay to protect yourself.
9. If they want to stop, help them. Distract them when they get upset. Suggest other ways to cope when things are overwhelming. Encourage them when they succeed. Comfort them when they don’t. There’s no deadline to change. Not everyone wants to stop and trying to force them to will only make it worse.
10. People who are desperate are very good at manipulation. They’re probably not trying to manipulate or take advantage of you, but they’re too absorbed in their own pain to think about the cost of their actions on anyone else. They will explode your life if you let them. Decide where your boundaries are and maintain them, even though it’s so, so hard.
11. There will be more. The more you accept people who are in too much pain to reciprocate friendship, the more you will surround yourself with people who are in pain. One day you will walk away from most of them. Not out of anger, just by deciding this is not what you want your life to look like.
I used to joke that each bit of dignity I lost got me that much closer to freedom. One day I’d shit my pants in public — then I’d be truly free.
Crude, sure, but it’s nice to know that each time something happens that is so embarrassing surely I’d die from the shame, well, it’s really not that bad. I have a whole litany of horrendously shameful experiences that would curl the pages of Seventeen Magazine and their silly Traumarama. And I’m only 30, so I’m looking forward to several decades of horror to come.
This is why I am so confused when someone refuses help out of shame. You’ve made it to 82 and are too prideful to use a bedpan in front of me. Really? You must have lived a boring life. I have peed in front of strangers in multiple countries. Get over yourself.
The thing is, the more I’ve made this joke (you’re wondering how I get invited to parties, I know), the more times strangers gleefully confess that they have beat me to the punch. Shitting your pants? They’ve been there, done that. On road trips. At work. On first dates. At weddings. Life goes on and it becomes a story to laugh about.
Which is how I keep myself from freaking out when something particularly cringe worthy happens. When my dad walked in on me having sex with my boyfriend in high school I kept reminding myself that one day this was going to seem hilarious. So let’s just pretend I’m narrating this to a bunch of new friends over drinks at a party. It kept me from dissolving into a puddle of shame. And today it’s not even funny enough to make the repertoire. I’ve had so many other more embarrassing things happen to me since.
I have little sympathy for people who would rather suffer privately than accept help. If that’s what they want, fine, less work for me. I’m not going to beg to clean their dressings or wipe their ass. I’m also decidedly not flattered when some charming family member wants me to dote on them constantly because God forbid a stranger help. If you treat strangers better than your own family, you’re doing something wrong. Your secrets are much safer with the kindly home health aid, who at least is required to maintain some sense of decorum. I’m not.
Scott Stossel shit his pants in front of a Kennedy and not only lived to tell the tale, he wrote a book about it and is wildly popular. They’ve had however many decades to become comfortable in their skin — Today is as good a day as any to stop being silly and grow up.
If I’m too sick to do things by myself, I may not be particularly thrilled to be taking care of my bodily functions in front of an audience, but I’ve got bigger things to worry about. Everybody poops, guys.
My mother in law thinks my husband’s disabilities would be cured of he cut out gluten. She thinks the chronic pain world go away with enough tumeric and if he put onions in his socks at night. Despite the fact that he has none of the symptoms of celiac disease and there’s no scientific evidence to support her claims, she is adamant and outspoken about her beliefs.
He’s not totally against traditional medicine and healing options, but the suggestions she’s making aren’t even related to his disabilities.
I understand that it must be terrible to, from her perspective, watch her beloved son suffer needlessly. Which is why he’s sometimes gone along with her quack diets and nonsense cures, sometimes for months at a time. Most of them don’t pose any potential harm and we thought it would help our relationship with his mom. When they fail, she insists is because he wasn’t really following her inductions. Or its because we don’t have faith. It’s his negative energy that’s causing his health problems. So he’s stopped humoring her.
Each time we see her, she has new printouts of ridiculous claims from healers. No matter how many times we’ve said that we appreciate her concern and we love her very much, but we believe in medical science. We change the topic. We tell her outright that we’re not going to discuss it. She refuses to respect that his medical care is his choice. Instead she makes a scene.
Easter was terrible. She opened the doors with printouts in her hand. She ranted on and on about alternate treatments and conspiracy theories all during dinner. We kept trying to change the topic, bring other relatives into the conversation, but she didn’t make it easy.
And then he declined a glass of wine, saying he wasn’t supposed to drink on his new medication. That’s when she really started. She insisted the medication is causing his disability – he is physically disabled from a chronic disease aggrevated by an injury – since he wasn’t disabled until he started taking medication. She was practically yelling and worked herself up into tears. Finally, he said he couldn’t speak to her until she was ready to respect his choices and we left.
My grandmother made it to 100 before ever calling 911. But one night she could hear someone trying to break into her house. From the balcony she could see a man trying to break the window lock. The police car scared him off. Surprisingly for a neighborhood with only a few feet between houses, none of the neighbors heard anything.
It happened again the next night while my dad was there with her. He was casing the house, smashed the glass, unlocked the door and came in. Only no one else could see him. My grandmother was so shaken up she needed someone by her side for the next day. The man kept coming back. There was a strange woman and child in her bed. My grandmother kept seeing people no one else could see.
We knew older folks could experience delusions and extreme confusion from UTIs, but that wasn’t the case here. And she was otherwise totally lucid. What was going on?
This had happened once before. When she’d been given codeine in the hospital she had a number of delusions, from thinking she was on a cruise ship to thinking she was being held captive. The hospital staff realized what was going on pretty quickly – they said it was a common side effect, which Bob’s sorry attests to – and switched her medication. But she’d been out of the hospital for days before it started this time.
By time the doctors had seen her, her symptoms were already subsiding. Or, at least they seemed to be. Her daughter asked if she was still seeing the people. My grandmother said yes, she was, but she knew they weren’t real, so if no one else saw someone, she just ignored them.
I can’t imagine the mental strength that must have taken. Can you imagine something terrifying happening, but no one is doing anything about it? And then to use logic, in this moment of fear, to decide to act like nothing is happening?
After a week or so, she said she no longer saw anything she needed to ignore.
We never got a satisfying explanation for what caused it. A delayed reaction to medication? Am undiagnosed infection? Stress? Now we know to be extra vigilant when she’s switching medication. Don’t discount personality changes – they can be an important sign of a medical issue. And, regardless of the cause, it’s important to do what you can to provide comfort and reassurance when someone is experiencing delusions.