alz caregivers get caught in a nightmare web of red tape

Open Letter to Everybody,

It should not be this hard to die from Alzheimer’s.

If I had known how hard the end would be and how little and conflicting help I would get, I would have taken being crazy in California over crazy in Arkansas. I chose leaving California to take care of my mother in Arkansas because I thought I could make a difference in her life and it would keep me from completely going crazy with worry about her. I was wrong. Not that my life in California was perfect, but I had a job(s), and sort of a life.

It’s like driving on a freeway in rush hour, with everybody going in the same direction. Hard to get on, hard to change lanes, and harder to get off the freeway. No fast lane and you have a lane for car-pooling, that you can’t get into if you are single. You watch for signs and what is going on around you, and give it your best shot. Then there’s a pothole. And a detour. And an accident stopping traffic completely. It’s amazing you get anywhere at all. Or even try.

You want to go places and do things with your life. Do something. Leave a mark that’s not a blood stain. I set up my life to be mobile, in the beginning of my career. I could pack and close the door and be gone for days or weeks, depending on the task. That’s what I wanted to do: troubleshoot. And I did that, for a while. Then you get sent to places that can’t be fixed, or don’t want to be fixed. Other people’s agenda. Brick wall with land mines in front. Hard to swallow when that’s what you love. Fixing things. It was fun until it wasn’t.

I’ve taken the leap off tall buildings before, that’s how the best stuff happens. Fearlessly with blind faith that it would happen. As planned. Pothole. Land mine. Brick wall. Stop. So I was ready to take another leap and move back to Arkansas to start over. Regroup and reorganize. And take care of my mother. How’s that working? Not well….

January 28th marked my 3rd anniversary here in Arkansas. Mom is in the worst nursing home she can’t afford. She has to be broke to apply for Medicaid. Not get it, just apply for it. She keeps the house (intent to return, like that’s going to happen), and a car (which she doesn’t have, and couldn’t drive anyway), $2000 in the bank and $40 of her SS check every month. Her last $13K went to the nursing home for minimal care. $5K a month for minimal care in a lock down unit. That’s all they have to do. They don’t even brush her teeth. I took her for her 6 month checkup at the dentist and the hygienist said why don’t I brush her teeth then? Helpful, no? No. Not even. These rules and guidelines just don’t make sense. I have spent so many hours on the phone and in person with unhelpful companies and people. It’s a nightmare, really. Who would go through this? I am sick of it. Want to drop everything and go somewhere else. Let somebody else pick up the pieces. It would be easier if she just died. They are killing her faster. How terrible is that?

This system is a mess. It’s not like she’s the first person to have Alzheimer’s. Where are the guidelines for help? I read all the books, and talked to all the agencies. They say they will help on paper, but when it gets down to it, they are just people. They make mistakes, and have hundreds of people just like me beating down their door. It ain’t right. This is a sad story. What is happening to her is not right. She had cancer early on and wouldn’t qualify for long term benefits. She will not recover from Alzheimer’s. Nobody does. This is not a 50/50 chance. It is a certainty. It is hard enough to care for someone with Alzheimer’s. But it is made impossible to maintain by all the red tape. When someone has this disease, they should go on a fast track when they are diagnosed. Like a flow chart: one question leads to another and then another. But it doesn’t.

I was called a liar by the pharmacy plan she has after pushing them repeatedly to fill her necessary prescriptions. They have the recordings. They can look it up. They didn’t bother. Not their agenda. Her insurance benefits are changing in the middle of all this, and they stonewall, and make it impossible to comply. Then they cancel you. They dump you. Like trash.

Where is the help for catastrophic healthcare? Why did I work so hard for 3 years to now let the professionals screw it up? And where is the help for the caregiver? Nowhere. I have to trudge along and accept poor outcomes and accept that I’m only human, too.

A son, and caregiver,
Phil Chwalinski

Written by Phil Chwalinski
Phil spent 25 years as a specialist in catering and special events in Arkansas, then Florida, and ending up in California for 11 years. He was a Catering Sales Manager at a hotel and as a Wine Educator at a luxury winery in Napa Valley, CA. For the last 3 years he has been a full time caregiver for his mother who was diagnosed with Alzheimer's disease, back in Arkansas. One thing hasn't changed over the years - Phil is also an artist.

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It was two months after Mum died. I would not meet anyone. I would not answer messages. I would not talk about my feelings. I didn’t want to chat. I...

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  1. Phil,
    My mom suffered her 3rd stroke and was sent to “rehab.” When it became obvious that she would need continuous care which the family was unable to provide safely, long-term care options were discussed and enthusiastically encouraged and supported. Until we got into the throes of the loosely regulated “skilled nursing care” and see now we were duped. She’s not allowed to be with any family or friends between 8 pm and 8 am. Despite our continued and vocal involvement, the facility where she is has gone out of its way to frustrate our attempts to keep a level of normalcy for my mother. They have not reviewed her past medical records or charts and have made it clear they don’t care what my mother’s true medical or physical or psychological needs are — they just wanted us to sign over her social security and disability to them. My mother deteriorates daily and is now sleeping nearly 18 hours a day. Their day will come, of that I am sure. I even contacted our State Ombudsman and was told they merely need to meet a “very low standard” of care. It’s pathetic and sad. And with our current political situation I feel hopeless it will improve any time soon.

    • Thank you, Phil, for sharing your story. I am comforted by reading it. It is helping me to realize that this isn’t just some isolated problem which for me is just too complicated to solve; I’m not “doing it wrong” or just too stupid to figure out what to do; no, none of that. Instead it is an entirely broken system. I think, honestly, that what they want is for people with dementia to suffer and die in their homes. The state doesn’t want to fix it, no one can fix it, no one tries. I get the same answer everywhere I turn: people wish they could help (but they can’t and won’t). God bless you.

  2. My husband is only 65. He was diagnosed with young onset Alz 6 yrs ago. MRI showed he had it begin 10 – 15 years b4 MRI. So we are easily 15 * 20 years into this navigation of Alz medical care, caregiving, and even tried a “cutting edge” brand new “Memory Care” facility. After 6 weeks of slowly moving in, hoping things would improve as they got “the kinks worked out”, it became clear that they only cared about filling the building and keeping minimal staff (as in assisted living, not the 1 to 5 ratio promised) making money. Supposed to be nonprofit, Christian facility. Non profits clearly can find ways to make sure the right people profit. Anyway, after 6 weeks, my husband’s rapid decline, two rear rashes, 3 sunburns, a plethora of other problems that I was there to remedy a vast majority of the time (also befriending other residents, family members, and staff/management, WE were thrown out !!!! They found a way to givetom an “emergency eviction” essentially because the nurse messed up, gave Tom multivitamin with all meds on empty stomach so he was aggressive later, none of his as-needed meds given to calm him. He was transported to hospital that was not our choice in paperwork while I was at chiropractor and when I got out I was told where he was and that he could not ever return there. That scratches the surface. I completely concur with you all in stating awful state of healthcare providers & need for speedy reform and restitution. I also feel your pain and my heart goes out to you with appreciation, empathy and compassion!!

    • Why, why, how can we be treated like this? I’m the guardian of my older brother who is Bi-Polar, mentally impaired and has dementia. I finally put him in the 3rd. Nursing home. I visit him @ 2-3 hours a day but almost called 911 a couple days ago because I couldn’t get the nurse to help his obvious over-dosing reaction. There is a God who will judge. In the meantime I’ll take one day at a time.

    • I also concur with M Jagalla about your terrible treatment at your husband’s facility. You state that this being kicked out “only scratches the surface.” Really, really going to pray for better times for you.

  3. Phil
    Do you think a person can walk into his new, temporary room & greet his wife, looking so handsome & the next day be do heavily sedated he can’t walk.

  4. Thank you. If I have learned anything it is that you cannot do this alone, even if you have to accept less than perfect outcomes. There are no perfect solutions, so get yourself some help caring for your husband. I’ll be writing more soon.

  5. I admire you Phil, your fighting the good fight! I am keeping my husband at home, I tried one of “those places” for ONE WHOLE DAY!!! Pulled him out and brought him home. I have no personal life but his struggles are far worse than mine. Any professional I speak with is just looking for $$$, not a way to actually help me!!!! Feels defeating at times.

  6. I’m working so much now that it give me little time to visit mom. I get to deal with the bad stuff, and have to let the good stuff fall to the side. I can’t take care of her and fight the battles too. At some point my health will take a hit,and then what? I’m not giving up. I’m not going away. I will not stop.

    • Your health matters too, man. You can’t do anything to help if you are hospitalized or dead. That’s one thing that has me very worried about this. Every time I get a bad phone call about him, my blood pressure goes through the roof. Today I’ve been reading up on how to get legal ability to make his medical decisions for him, and my chest has started hurting. F**k this.

  7. Like many others, I feel I’m reading the script of my current life as well. In year 4 of caring for my husband with a TBI. Such an isolating world with blurred realities splashed in.

  8. Phil thank you for your letter it is rigHt on , I experience the almost same situation , I’m so angry that nursing homes are so expensive yet care is not committed, the turnover in the facility my husband is in is terrible and let not enough staff some staff rather be on smartphones than to do there job , I could go on and on , so angry

    • Sorry to hear that you too, are having problems. Keep on them. Keep voicing your needs. Tell everybody. Someone will listen.

  9. Hello Phil
    Glad to hear you are still letting yourself be heard..
    This caregiver site is wonderful and well needed, as are many other good caregiver sites..

    But you are right.. We are all telling each other our stories and getting valuable information, but unfortunately the ones we want to tell , so changes will be made are probably not reading any of our stories…

    Anyone that can write or email their senators and representatives in their state and nationally may finally break through this quagmire ..

    Each state is so different.. I am home this morning waiting for meals on wheels for myself , trying to get well from a sore throat and sinus infection before my hubby comes home Saturday from the re Hab nursing home..

    He was in two hospitals and a nursing home since Feb 17th for CHF , cellulitis, and a few other things..

    I was with him every day till I got sick.. Can’t wait to get him home

    • Thank you. Best wishes to you and your husband. My local, state and national politicians know about me and my mother.

  10. Thank you. I am sorry for your loss. Go ahead and grieve. Take your time. You know who you can count on and who you can’t. Live your life unapologetically. I even ‘unfirended’ my sister on Facebook. LOL.

    • I get no help from my sister either. She just complains about treatment I have to take care because I’m my brother’s guardian. It sure sucks when you can’t rely on help from your only sibling. I can only do it for God.

  11. Wow Phil I just found you page. I’ve taken care of my mom progressively increasing in time, money, etc for 20 years. I read these stories and they mirror my experiences almost verbatim. The only difference was my mom did not have any cognitive problems until the very end. So in addition to dealing with all the the regular caregiving issues, I had to deal with her wants and attitude as well. I’m the mother, not you, LoL. December 15, 2014 she had complications due to a 98% blocked carotid artery on the left side the local hospital missed in November. With tears in my eyes I cried and begged my sister to move home from out of state to help me and all she did was coldly reply, “its obvious that you can’t take care of her, so put her in a nursing home” Being a Paramedic for almost 20 years I tried to tell her the ones that would take her are the worst in the industry. She didn’t care. Area on Aging got my mom 40 hrs of paid help a week, but I still was there every day after work, and Saturdays and Sundays. She got much worse after the blockage was cleared. Almost like instant dementia. The next 2 months were trying. I felt like I lost every strand of me left. Just as I was coming to terms that I just couldn’t keep up this hecked pace, and agonizing over the fact I would have to go there, to long term care in a nursing facility, my mom suddenly passed away on March 27. NO ONE CAN UNDERSTAND WHAT IT MEANS TO BE A CAREGIVER UNTIL THEY WALK IN THESE SHOES! Nursing homes rape our seniors of their dignity, respect, money and humanity. Caregivers are ignored and left to scratch for help. Such a shame in such a rich county. At 46 I’m faced with possibility of living my life for the first time ever, and I feel totally lost! Is that the most crazy thing! Maybe in time, I will figure out how to make plans around my needs, instead of my mothers. But for now, I don’t have a clue, I have a huge void. Its funny, when your in the middle of caring for someone else long term you think when their gone, some sort of normalcy will come and you feel so guilty for it. Now that she is gone, I’m so depressed and sad. Thank you and everyone else for sharing your story!

    • Hear you. Sorry you had to go through it. (I’ve begged my sister too. –to no avail. )Won’t do that again. Know that you were a good daughter. It did make a difference to your mom (& God)

  12. Actually his daughter that never comes around or offers to help has power of attorney has been over 3 months since I have heard from her or seen her

    • Screw that! He who does the work gets the POA. She has it? She does the work. Offer to move the parent in with her and see how long it takes her to come around. But don’t listen to me, I’m just bitter. LOL.

  13. I am going thru the same thing that you all are going thru except the gentleman I am taking care of is no relation to me ..i have worked for him for the last 20 years managing a small motel he owns . the last 7 years I have been his caregiver due to demitia . he has 2 children that are no help in anyway .his demitia has progressed. To where its like taking care of a 2 year old in a 87 year old body. I also have a son who is 16 that I never get to spend time with which makes me feel guilty and angry at the same time .the gentleman has great insurance and Medicare but there is not really any help for people in his situation. I did get him enrolled in hospice for 90 days but due to his increasing appetite we wont qualify when he is reevaluated.. Recently I have had to lock the kitchen to keep him from eating or drinking dish detergent or anything else he can get his hands on that might be poison.. I feel like I am all alone and isolated.most of the time during the day it is just me and him therefore I get nothing done ..I have tried hiring private help but he is so mean at times that they leave and never come back.i am tired …I am stressed.. I am at the end of my rope …there needs to be more programs and help for people with this condition..its killing the caregivers.

    • Thank you. Tell your story to everybody! You need some help. You should not be doing this alone. Look into the Area Agency on Aging near you for paid help. You need to child proof and safety up the spaces he can get to. Do you have POA? Or Guardianship? Look into it….

  14. I forgot to mention my mother is 89 years old.

  15. Well written article. My mother was diagnosed with Dementia in Oct. 2005. I worked as a Medical Assistant at the county hospital. I received numerous calls regarding my mother’s strange behavior, car accidents, walking on expressways, and etc. I am the only child and I felt like I was forced to resign and become her caregiver. I looked into nursing homes and most are just awful. She is NOT the easiest patient to care for. She stayed in a couple of Skilled Nursing Facilities after hospital discharge and I was told she is one of the most extreme patients and if I planned to put her in a home I would have to pay double. I care for her in her house that she owns and she is doing a lot better. I wish I can say the same for me. I have anxiety, I haven’t seen a doctor since 2009 or 2010. My memory has taken a dump and I am so tired. I don’t remember what sleep is because if I’m not in her room I am staring at that baby monitor. I dosed off a couple of times to find her on the floor so now I’m paranoid that she will get up and have an accident. I am going absolutely batty. I love my mother but I feel like I gave up my life for hers. I have a now 13 year old son who I spend no time with. He just says “you look tired” everyday. They need to have help for us. I gave up a $3,000 job for a welfare check. I have no life what so ever. I have no friends. But most of all, I am so tired. We need help. My mother is like a two year old now. A heavy bratty two year old. My mother is no longer with me. Very seldom she comes back. This is a heartbreaking disease for the family. I have no other family-no one! My father passed in 1996 he spent 30 years in the U.S. Army. He went to Vietnam twice and was in Korea twice. A year each time. I applied for Aid and Attendance and after a long drug out battle they said she qualified but they decreased one of her pensions to implement the other. Not enough for a nursing home, if I would even put her in one. The 3 she was in she had horrible accidents there. So I’m stuck. I am now 45 years old. I was 35 when this all started. At age 36 I left my job and my life. I thought this would be temporary but my nursing care to my mother is so good that she is healthy physically just not mentally. She has gotten UTI’s (which is a terrible setback in itself) but other than that her blood tests I’m sure a better than mine. Lol. This whole disease and it’s processes needs to be addressed by the top officials. This is a big problem for the caregiver’s, especially the ones that have no help or family.

    • Thank you. Another horror story and you are living it. People don’t talk about the bad stuff, and they should. That’s why I did. To facilitate change. I set boundries when I started care giving as a son caring for a mother. I would not bathe her, feed her, or change her colostomy. I didn’t think I had to. Still don’t. It sounds like you are doing more than you can do. I hope you rethink your decisions, esp. if she is difficult. Sadly, as the disease progresses, it might get easier for you to put her in a nursing home. And give yourself your life with your son back.

      • Thank you for your response. The problem I’m having is that I would have to sell the family house and move back into my apartment. I do have P.O.A. But it seems like a lot, plus take care of my mother. I didn’t want to just give away the property that my father worked so hard for decreased care in a nursing home. They aren’t attentive enough for my liking. My mother needs one on one care. I guess I’ve spoiled her. Even if it’s killing me, I prefer to keep her home. I hope it does not get any worker. This’s my fir experience with Dementia.

  16. Robin, what a load you’re carrying! I completely agree, our system is backward and you deserve so much more support. Your endurance, self-perseverance, advocacy and sheer will blow me away. The Caregiver Space is your place to come to cope with everything you’re managing because we recognize you deserve a place to vent, share, get advice and feel connected in an often otherwise pretty lonely experience.

    • Thank you. I’m sure glad this space is here.

  17. Thank you…. I read all the emails and Facebook posts and it’s nice to know there is someone to talk to. My husband had a stroke…. It was massive…. He is only 54 and now requires caregiving at home. His SSDI is over the limit for traditional Medicaid and is only approved for non traditional medicaid funding which is 16 hrs of paid caregiving per week at home but it must be provided by an outside source and not a spouse. I had to quit my job to give him the care he needs besides the 16 hrs a week provided by medicaid. He is not eligible for Medicare until nov 2015 so until then we are on county funded medical services and we both are living off of his 1370 per month SSDI. I can’t get on Medicare because I am only 54 and not disabled…. I can’t work because I care for my husband but the state of Texas won’t pay me to care for my husband. We list our home to foreclosure, our retirement is gone, our apartment rent is 868 and the wait list for public housing is over 2 yrs and we get 200 a month in food stamps. We both worked full time our whole lives… We paid our bills, bought a house were in the middle of sending our two girls to college, were contributing to simple IRA’s for our retirement, and had a good savings account…. It’s all gone and I’m left with the worry that by the time I’m old enough to collect MY social security there will be so many non paying years averaged into the paying years that the amount I’ll get will be to low to live on but I’m unable to collect any of it now because even though I CANT get a job and I CANT work outside the home I’m not disabled. Sometimes I feel so panicked inside I start shaking all over…. Our girls are working two and three jobs to pay for their own college and are trying to help us out financially but it’s so exhausting all the maneuvering and manipulating that has to get done in order to make it week to week AND try and help my husband recover enough to get by on his own…. Surprisingly the help that is offered to him as far as therapy is great …. the copays low… But I have to facilitate the appointments and transportation, para transit is hit and miss so the cost of gasoline affects us tremendously financially as well as the time it takes to get him from place to place…. I need to be there with him because he gets confused, can’t remember his medications, or what time his appt is, or what to tell the therapist about his home excersize etc… he is unable to cognitively do that now… And there is absolutely no regard for me or my needs. Even the county medical care is less for me… I’m not disabled, I don’t have a visible medical need so appts for me I have to fight for, the doctors don’t care that my migraines are worse, my shoulders and hips ache constantly from lugging my husbands wheelchair in and out of our car, or I’m worn out from the needs of my husband…. I’m last on the waiting lists for appts and have to fight for my medication… I’m worn out and feel like the outside world thinks I’m nothing but a caregiver … Not a person that has needs, or feelings…. My husband’s stroke didn’t just happen to him… It happened to me too… It changed my life, my future, my plans, my income, my healthcare, my retirement, and my needs as well as my husband’s… Except my husband gets a paid caregiver and an unpaid caregiver (me) 24 hours a day and I get no one… and have to fight people and the system to get anything for myself…. my husband needs me to be well so he can get better and I need me to be well so that when he does get better I can go back to work again so we don’t have to be on public assistance the rest of our lives…. My husband is getting better but the system is destroying me… I won’t EVER choose to give up but this feels like it’s going to kill me… Caregivers need more help for themselves…. The family caregivers not the institutions…. If family caregivers, ie: spouse, children etc had more help, easier process to get help less disabled people would be in institutions where it’s hard to find good care or people who care…. Put me on your list of supporters!

    • Thank you. Go outside and scream until somebody hears you. The more voices heard, the more we can make change for caregivers.

      • Phil, thank you so much for your words. I am a caregiver of a daughter who is profoundly disabled by Autism. I am still young, 52, but feel like I’m 102 some days. It is exhausting to have the responsibility of caregiving as it is, but when coupled with advocacy for our loved ones and fighting for their dignity sometimes it feels overwhelming. I have seen changes in “the system” in the 31 years that I’ve been caring for her. Small changes and slow changes, but changes nonetheless. We must all keep screaming and writing and pushing. It is easy to feel that we are the only ones fighting. Seeing your post and the posted replies assure each of us that we are not alone. Thanks again for sharing.

    • Be careful in Texas, APS can cause a person much grief.

  18. Phil
    You are absolutely correct .. We can write till our fingers cramp , but if the right people don’t hear us , nothing will change .. I have been writing my Congress and Senators but I don’t think I have found the right person yet..
    So many changes are needed..
    In my 8th year caring for my hubby..
    Many health care workers are really trying and we have experienced some great ones , but the ratio of patients to each nurse or CNA or Tech Assistant are daunting..
    That’s why I think the number of caregivers is growing.. More people are taking care of loved ones in home.. But sometimes that is just not possible..
    Keep writing .. Eventually someone will hear us
    Take care and Bless you and your mom
    Theresa Loder

    • Thank you. Squeaky wheel seems to be working for me. It takes time and continued effort. I am not giving up. I am not stopping. I wrote to the Pres. and V.P. Haven’t heard back from them either…..

  19. Phil, I agree and sympathise with your situation “Mom is in the worst nursing home she can’t afford.” Up until an injury at work in one of those places, I was a caregiver. There are far too few direct care workers than what are needed in these places. As for the CNAs in this line of work, there are some caring and wonderful people among them, if they don’t burn out or break like my body did. The ones that tend to stay around are the less caring, the ones who don’t brush teeth or hold a hand or show patience. Just hiring different CNA’s rather than address problems. Administration (the red tape people) unfortunately are the ones pulling all the strings; it is all about the bottom line $$$ At the same time I am a caregiver for my terminally ill husband and have had to go through MY own two major surgeries, hospital stays and ironically MY stay in a nursing home as a patient. I wish I could give you hope. I can’t. I want to be able to keep my husband home as his illness progresses. I cringe at the thought I might end up having to fight for his care in a nursing home. You said “It would be easier if she just died.” In most ways, she already has. Sorry for your loss, I wish you strength to get through this technicality.

    • Thank you. For your honesty, and for your caregiving.

  20. This is so on point…So. On. Point. Exactly our life -though different catastrophic medical crisis- for my family as we struggle to care for our mother…Long-term care (even just receiving the most basic minimal standard of quality daily care) is the worst experience/joke/horror…no one has any idea unless/until they are actively in the middle of this nightmare (and I mean actively participating in the care of their loved one in medical crisis/long-term care… trying so hard each day to make it a team effort and receiving zero help…knowing each day that you are on your own figuring out anything and everything you may want to know… I could go on forever… You are not alone, Phil! There are so many of us right there with you sending you positive vibes and cheering you on…Your mom is blessed to have a strong loving son there with her, so she is not alone, willing to do what it takes to BE THERE even when every fiber of your being wants to just disappear forever from the unbearable and absolute insanity (and throw your mom over your shoulder and take her with you!!). Much love to all of the family caregivers reading this. Keep fighting and keep loving. YOU ARE DOING A GREAT JOB!!!! xo (I posted this on The Caregiver Space facebook page and I’m reposting here… This is the first thing that’s made me create a profile and start interacting HERE, so thanks for that, Phil. 🙂 )

    • Thank you. I’m ‘throwing you all over my shoulder’ and taking you along on this journey.

  21. Well-written, and sometimes keeping a journal, or blog helps keep the sanity. Is there some sort of support group on Facebook? Or one in your area?

    • We host online support groups daily.

    • Thank you. It’s an added bonus that people think this is well written. Support groups are great if you are looking to just talk about issues with other like people. I need action at this point.

  22. I identify with this piece so much!

    I love to help others navigate so they can avoid the pitfalls I’ve faced- however I still have not found a way!

    It’s awful.

    • Thank you. Too many people are in this situation, or will be soon, for nothing to be done about it. That’s why I’m on a letter writing campaign and taking this issue to a national platform.


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