Advice for new caregivers, from caregiving veterans
advice for caregivers from caregivers

Welcome to the world of caregiving.

It’ll be hard, but it’s worth it.

You will never ever regret being a caring caregiver. – Debra Taylor 

It’s all about love

Remember to love unconditionally, when it’s a family member. – Mimi L

Accept help

Don’t be afraid to ask for help. Take any and all offers – they eventually stop. – Narelle

The only advice is to reach out and ask your for help. If you don’t and it becomes a long term as it has with my family, people back away, be open and honest that you need help. – Maggie

Remember self care

Take good care of yourself too. Find time for yourself. It can be something as simple as reading a book. Never forget yourself. – Mimi L

Don’t forget yourself

It is important to maintain certain projects that gives one a since of identity. Why? Because so often as the journey continues it is easy to lose sight of who we are, or were before the all consuming responsibilities are upon us it is too easy to lose our sense of purpose. It is best too if these projects include some sort of creativity. Why? Because a wise man charged with running a school for children with disabilities once said to his staff that when doing such a job as caring for another, creative efforts provide the in breath and the caring effort is the resulting out breath. – Linda

Make decisions together

As a veteran caregiver of both mom with dementia and spouse with MS, patience patience patience. Breathe and try to understand their state of existence. Think through to solutions that work for everybody. Ask before you make decisions about their care. – Joanna L. Brandon

Sometimes you have to be forceful

Be proactive, especially where your parents are concerned. We’re taught and experience trains us to follow their lead and defer to their wishes, but there comes a point where everything they taught us comes majorly into play. It’s a role reversal and we chafe against it, but it must happen before a disaster dictates the when and where. – Kat Drennan

You can’t argue with ALZ

Caregivers have to adjust, adapt, and accommodate because you can’t teach, train, or tell. Momma was on her own strange journey. I could not go into her world, but I had to survive it in order to help her. – S

Written by Michelle Daly

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62 Comments

  1. you seriously got this. No one could do all you do any better – which I know you know.. most of the time.

    Reply
  2. Advice pages not only help with suggestions, but validate you in your role and as a human being yourself. Which is so needed.
    When people abandon you both as an elderly person that can no longer do for family and as possibly the only caregiver family member caring for them to the end of their lives, you are left by the very people you have always needed and never thought they would.
    I was in that position with both parents at the same time. No one was there for them or me. I lost my job. Went into major debt and now have one parent left getting close to her end.
    In having done this, which was never well thought out. It was to me, what you do for someone you love. But, you may not feel very loved yourself and that starts killing your heart and soul. For me it has been the abandonments more than the care taking of my parents. It sometimes feels as though you have been left behind from everyone’s life to die yourself along with your loved one(s) you are care taking. I think that killed a lot of me inside.
    I just pray I never need care taking before I pass away.
    My parents felt the same way.
    I think they thought it would be that way. Love is needed for them and yourself. Even if you are the only one doing it.

    Reply
  3. Remember– you have a right to go outside and SCREAM !!!!!!

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  4. Spouses taking care of p.t.s.d vets out there? Have never done this, but dont know what else to do. At wits end.

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  5. If I knew then what I know now, I would have done everything that I could to support my adrenals and hormonal systems. Because I was unaware of the consequences of what prolonged stress does physically, mentally and emotionally, I didn’t do this and now have major issues with severe adrenal fatigue which is prohibitively costly to treat and mainstream doctors and insurance doesn’t deal with it at all! My mom is in the end stages of dying as we speak and I have no financial resourses and can’t work a full time job due to health reasons that doctors don’t recognize until it transforms into an auto-immune disease that they can throw synthetic meds at. Be forwarned and don’t get to where I am!!!!!!!!!!!

    Reply
  6. So many things I could say.
    Make sure you are prepared and that everyone close knows what you are going through. You will need more emotional support than physical support until your health fails then you have to make hard decisions. Your quality of life or theirs? I sound like a downer but it is all true. I blame the health care system for allowing nursing homes to be run like bad kennels. That is why I was not able to move my sister to one, next my father, and now my mother. My health is horrible after 18 years of caregiving. I really have no answers just letting you know the truth.

    Reply
  7. Take time for YOU, for other children in the family….for sanity.

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  8. It’s no use losing your temper

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  9. Sadly I’ve been on this journey 4 times, MY parents 1990 to 2003 than my father in law Nov 2016 to Feb. 2017 Now my mother in law, She is my worst nightmare, She tells me to leave, all the time, I told her she had better be nice, cause I’m all she has, Cause the other family want nothing to do with her cause she is Bitch, She hasn’t liked me for 20yrs. Tells me daily, I tell she isn’t my favorite person, But God put me here to annoy her

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  10. You are so right Ronnie we need to be caretakers whenever possible because our time will come

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  11. My father lived with me. We had home health. When we had issue with his catheters
    I was shown how to correct the issues. Once I touch the cath it removed response ability of home health that we paid over 3k a month for 24/7 care. Don’t let them fill out the paperwork. You do all the care..they get paid. Make plans for emergency ambulance VA will turn you away. No room.

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  12. 40% of sole caregivers pass on before the patient

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  13. Prepare for the worst emotional roller coaster ride of your life and pray that you get out of it alive.

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  14. Patience. It’s a hard job. There is no do over ! Be kind and love with all your heart.

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  15. Be prepared to have your day not go as planned… there’s always a little hiccup in each day to keep you on your toes. Even if you’re running around like crazy, make it a point to stop, and breathe slowly for just one minute so you can refocus.

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  16. Getting angry and/or frustrated is normal and natural, forgive yourself.

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  17. Breathe. Sometimes say that out loud.
    You MUST talk to someone to stay sane. Someone on social media, nurses you see week to week, therapist, long lost friend , I know weird but even a stranger . If you don’t it will destroy you. Believe me. I’ve been at this 11 years with hubby.

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  18. Buckle up buttercup….it’s going to be a rough, bumpy ride.
    Most days good, some bad.

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  19. Don’t put expectations on other family members that can help with parent, that way you never feel disappointed. Focus on what you do for your parent and don’t worry about any one else. When the time comes to say a final goodbye you will live with no regrets and know you did everything you could for your parent.

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  20. It’s gonna suck. A lot sometimes. Your life will change in ways you can’t even imagine and those people you think will be there for you? They will definitely let you down. But other people will show up instead and some days are really good days and those days you wouldn’t trade for the world. Those are the days you live for.

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  21. Take a few minutes each day to have a few minutes of normal conversation. Don’t complain about being a caregiver, if you do, your friends will stop answering your calls. YOU CAN do it.

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  22. Make sure you get time away every day even if it’s five minutes. Having someone help at night is always good too. My sleep patterns got so mixed up. When the hospice nurse stayed one night so I could sleep, I cried myself to sleep because I was so tired and stressed.

    Reply
  23. Make sure you are not the lone wolf, Otherwise prepare FOR what you are about to give up, No pay-No alone time-NO FRIENDS they will choose not to visit, or not invite cause you are busy, Caregiving is a hard job, prepare for people excuses why they can’t

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  24. Always expect the unexpected and care giving does not come with insrtructions.

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  25. I don’t regret taking care of my mom. Some have made remarks don’t take caretakers role. Let me tell you if you live long enough your going to need help. You can bet on that.

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  26. Well meaning people will tell you to take care of yourself. They are thinking things like luxurious nights of uninterrupted sleep, hot soaking baths and healthy food. You will learn to appreciate 15 minute cat naps, a quick shower whenever you can and eating chocolate. When you start to feel stress, go to the nearest window, if you can’t walk outside, and breathe deeply and pray! Blessings!

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  27. Don’t beat yourself up. You can’t be everywhere at once. You are only one person. Things will pile up. It can wait. Enjoy every minute of down time because you’ll need it.

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  28. Patience and a lot of love I was my mother’s caregiver and I know it will take a toll on a person when I would get up in the morning I never new what I was going to face when I would try to feed her she would not want to eat so would I would let her see me take a bite and then she would same with drinking my heart gos out to you may god be with you though this

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  29. It is insane, it’s not just you. Stress is your real adversary. You will run out of things to watch on Netflix, amazing but true. Write down 5 things that went well or were plain good every single night. Forgive yourself for not doing everything perfectly, because you can’t. If like me, you have no training in this, just be proud everyone survived the day on bad days. There are a lot of bad days. Remind yourself every hour on the hour that you are doing the very best that you can and it IS good enough. You’re there. That’s really all that’s important.

    Reply
  30. I’m just in the beginning stage. It’s a scary journey.

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  31. Takes Lots of Patience. don’t take things personal. Smile and redirect. Sometimes it will feel like the movie Groundhogs day. Don’t expect too much help. It takes a special person to truly be able to handle this job. A labor of love and kindness. Take breaks for your self.

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    • Very true Melissa. Wishing you and your family a Merry Christmas.

      Reply
  32. Carve out some time for yourself – whether it’s a relaxing bath, reading in your room, going out for coffee with a friend, or a night at a local motel (my absolute favorite!!!) – you need to spend some time concentrating on YOU and what YOU want to do. Makes it so much easier to then go back and get into the caregiving mode!!

    Reply
    • Yes, and whhen others ask whether they can help, take them up on it! … food, respite, craft supplies

      Reply
    • Beth Pilz – absolutely!!! Don’t try to be a martyr!!

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  33. Organization!!! Don’t expect much help if any. Accept the situation and know it will be constantly changing. Above all else, savor the special beautiful moments. I have learned to step aside from the caregiving role and remember I’m a daughter. I enjoy the long hugs, kisses, smiles, singing, snuggles, even if only for a short time. ☺️

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  34. Be prepared to see your “friends” dissappear.

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  35. Patience! Learn to smile even when you don’t want too! White lies are ok! And don’t over think every thing ( I’m still working on this one myself). Don’t stress yourself when things arent getting done, remember tomorrow is a new day

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  36. Patience with your patient. They sometimes say things they don’t mean and you must not take it personally.

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  37. Don’t forget about you. I know it is easy to say and hard to do but you really do have to take care of you.

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  38. Try to remember that the sickness is not just in the ill spouse. It is tha family illness, and the best results will be realized when the approach is a team approach.

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  39. Don’t be surprised if you get compassion fatigue and adrenal fatigue from exhaustion! Your body will collapse and you will be forced to renew your energy!

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  40. Treat Everyone with Dignity and Respect,Wash Hands,Understand your Role.
    Keep Your Life to Yourself.SAFETY AT ALL TIMES!

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  41. Stay positive, always plan your days however expect bumps, remember the love and why you are there and above all pray each day for the wisdom and strength it takes!

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  42. Organization is key. Lists, names, meds, perhaps a diary with items marked in red so when you get asked “When did…” by a doctor you can answer correctly. When did he have his lung removed, when did the cough first start, when did he start taking this med, etc. You have enough to drive you crazy, get ahead of some of it. All doctors numbers in your cell phone with on call numbers too. I took pictures of brother’s meds and posted on fridge and grouped into what time of day they are taken. (Lifeline asks for this but has helped me too) I have also taken pictures of brother’s ventilator settings so when asked at hospital I can hand over phone or message respiratory therapist the picture. Also LOVE the alarms on my iPhone, so many minutes for this nebulizer, so many minutes until wash-up time, so many minutes on afternoon ventilator time. So many minutes until this pill… love the iPhone for taking notes, setting alarms, keeping the calendar for doctor’s appointment, has reminders..

    Reply
  43. Know your limits. Ask for help whenever you can. And don’t lose yourself in the role.

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  44. Take care of yourself .

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  45. Each day is a new normal.

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  46. Don’t expect your days to go exactly as planned

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  47. Take time for you. Even if only a 30 minutes. It’s necessary.

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  48. Don’t expect any help from anyone.

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  49. Always remember, ” where there is live there is hope.”

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  50. To talk about the Decisions tha have to be taken before death.
    Power Attorney papers…
    Legal issues, decisions about life, Care and funeral. .. before is to late… and when your love one still have the option to decide.
    It is difficult to confront. ..
    But all will go to Die… some day.

    Reply

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