young caregiver saying what kind of support she wishes she had more of

 

Free Time

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

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

Community Support

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

Respect

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.

Written by Allison Powell
I live off of food from Trader Joe's. I spend my life in a cubicle, a la Office Space. I'm kind of obsessed with the internet. Confession: I take care of people but don't identify as a caregiver.

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22 Comments

  1. For people to help. My whole family including my brother has turned their backs. I would also like some freedom. I am stuck here 24/7 and have stopped my life. Very frustrated and angry!

    Reply
  2. Sorry Tonya… I had to copy and paste: you said it all…

    All of the above. #1, true caregiver assistance! No red tape laden overrated programs. Readily available transportation for bed bound individuals living at home. Understanding that the caregiver is not a superhero. Financial assistance for the caregivers from paying us and providing true tax breaks. People involved who know what the hell they’re doing and not expecting the caregiver to pick up the slack. Authorization to give a well deserved smack upside the head of idiots who run these red laden caregiver programs, family and friends who like to tell the caregiver what to do without offering help and just generally to anyone who ticks us off because they don’t want to understand what a caregiver does.

    Reply
  3. No hoops, more compassion, more help, less judgement, I have medical needs too, some one to be just my friend.

    Reply
  4. Money to create a respite stay facility Free for everyone and run by volunteers who are responsible and respectful so caregivers can get a break.

    Reply
    • Excellent selfless suggestion. Best response I’ve read so far on this blog.

      Reply
  5. People to help me with my husband-they act like nothing is wrong-he is 53-has epilepsy,parkinson;s, and an aortic aneurysm! I am 55-have fibromyalgia,migraines,and no one helps me!

    Reply
    • I’ve never had fibromyalgia but I’ve had migraines and they are horrible

      Reply
    • Clearly u need to look into resources for help. Help is everywhere, just sometimes hard to find. I would start with your senior center in your area

      Reply
  6. All of the above. #1, true caregiver assistance! No red tape laden overrated programs. Readily available transportation for bed bound individuals living at home. Understanding that the caregiver is not a superhero. Financial assistance for the caregivers from paying us and providing true tax breaks. People involved who know what the hell they’re doing and not expecting the caregiver to pick up the slack. Authorization to give a well deserved smack upside the head of idiots who run these red laden caregiver programs, family and friends who like to tell the caregiver what to do without offering help and just generally to anyone who ticks us off because they don’t want to understand what a caregiver does.

    Reply
  7. Some time to take care of groceries, clothes buying, dentist, etc. Hard to shop when you are caregiver for an Alzheimer patient.

    Reply
  8. I didn’t ask to be a caregiver…circumstances forced the issue. Personal time is virtually nonexistent. I am no longer ME. I want to pursue writing (not about caregiving). Art…true creativity takes time. I want my own identity, not just the title of ‘caregiver’.

    Reply
  9. What exactly is “Free Time”? What exactly is “Time for Me”? Try as we might we cannot slot time into the preferred slots that we’d like. Why? Because, from the day each of us is born until the day we pass, we do not have any idea how much time we have, nor how much time we need to set aside for the basics that is required to live.
    My clock is counting down differently from everyone else’s, although it may stop exactly at the same time as many others. Why? Because as soon as we are born our time is influenced by so many variables in the world we are now part of and try as we might, cannot control.
    What we do all have is the ability to “choose” how we spend our time, whether or not it is in the way we would like to spend it or the best way, in our perception to spend it, lies truly with us as individuals. You might think you don’t have a choice and that’s not for me or anyone else to convince you that you do, however, you should be aware that everything we do is down to choices. For example, I have no food and cannot for whatever reason provide that food for myself but I need food to continue living. What do I do? Well, firstly you need to evaluate your options. If I choose to do nothing then my time on this world will come to an end, within a certain time. Does this now mean I have more “Free Time” and/or “Time for me”? Or does it mean “I need to spend more time thinking about how I get food and ensure I have more time in my life”? Your choice. Personally I know I want to continue my life so I choose to spend my time obtaining food. Doesn’t look like “Time for me” but believe me by my perception it is. As I said, day to day life has many variables that we cannot control but do require our time whether we like it or not.
    Each of us has a journey and on that journey we make the choices that decides how we spend or pre long our limited time. If you spend this time doing what you believe is right then surely it doesn’t need the be compartmentalised into; Free Time, Time for me, Time for others, because all of it is, whether you believe it or not, “Your time”. Do not become a prisoner in life believing you need more time or need to spend it doing something else, because for now, no one is selling or giving away this particular product. Instead live your life making the choices you believe are best for you and those you love/care for, and know that the time spent doing so is and always will be “Your time”.

    Reply

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