What is it really like to be me…

As a 66 year old looking after my 90 year old dad…it is not nice to be me right now, sadly.

The year my hubby retired we had such excitement to start our travels and new journey. We got one trip in and came back to the news that dad was moving in with us.

That was 5 years ago and our life changed drastically…have not gotten to do the traditional things with my kids and grandkids…have not gotten to travel.

I have 2 brothers and 6 other sisters…only one brother helps out but he still works. We finally had to put dad in a nursing home on Dec 28th 2016.

So thought it might be better, but dad continues to not like me to be happy…every time in the last 5 years we tried to go away he got upset and made himself seriously ill and l could not go or had to come back.

Trying to play tough love now with him…l am up half the night trying to figure out how to go away and enjoy myself now that he is in a home…2 weeks ago l went 3 hours away to babysit my grandsons…he did it again and the nursing home was calling me all the time…l did play tough love and not go back. Sleep is terrible…l was told because he plays these games and destroys his body and kidneys by not eating or drinking till l get back that most likely l will not be around when he takes his last breath if l decide to go away..but they said go…yeah right, that is hard decision to make.

As soon as l come back he starts to eat and drink again.

Nobody else in the family hardly visits or will step up to the plate…l handle everything now.

I am tired and angry and feel guilty for being angry too even though he does not have to be like this.

I am angry at the rest of my family also…but they just do not care.

So my life l feel is ticking away while l am stressed and getting ill myself now…any suggestions will be greatly appreciated, but l have probably heard them all.

l am his POA so l make decisions my brother is POA also but leaves most of it up to me…

Off to visit him right now before storms come in.

Written by Guest Author
The Caregiver Space accepts contributions from experts for The Caregiver's Toolbox and provides a platform for all caregivers in Caregiver Stories. Please read our author guidelines for more information and use our contact form to submit guest articles.

Related Articles

Love in the age of sickle cell disease

Love in the age of sickle cell disease

"There are not yet universal standards for genetic testing, but a narrow consensus has emerged around specific conditions. The first prenatal...

Popular categories

Finances
Burnout
After Caregiving
Housing
Relationships
Finding Meaning
Planning
Dying
Finding Support
Work
Grief

Don't see what you're looking for? Search the library

Share your thoughts

70 Comments

  1. I feel for you, wish I could help!

    Reply
  2. You are giving all of yourself to care for another. Your immune system dives and crashes.. People do not, nor ever have in my case, understand the complexity of what we do daily. Our freedom, identity, dreams are given up because of our Love for another. Should be more support from family, or them even planning on trying to offer support. But I have given up on this..they choose to secretly criticize me, as if they have any idea of what I feel or truly go through..sigh. Hang in there fellow warriors! Peace to all

    Reply
    • Right back at you

      Reply
  3. Yeah. I know. I’m 73 and daddy is 102. Hope I last as long as he does. Right now he’s going strong.

    Reply
    • Do you live with him?

      Reply
    • No. I have been coming to his home for 3-1/2 years from a nearby town where I live. I spend 3 days and 2 nights with him. My daughter lives with him and is his primary care giver for the past 6 years, and before that, for my mom. My daughter struggles sometimes with wondering when she will have a life, but she loves her grandfather very much. All of you caregivers out there can understand the loneliness and isolation she feels.

      Reply
  4. You r a very special daughter Lynn

    Reply
    • Thank you Carolyn Bernat, some days it’s very hard.

      Reply
  5. We’re 67 & 62 my 85 year old mom lives with us. My dad died in 1993, my brother in 2009, so it’s just us. Thankful for my husband who always supports me.

    Reply
  6. Ask sibs to chip in and take dad on a trip with a caregiver where he feels safe and you re never far away – that is if he is healthy enough

    Reply
  7. Definitely know what you are going through….not easy being “the one” . Did it with Mom now doing it again with Dad. What helps me is that I no longer put expectations on any of my siblings so that way I never get disappointed, My life is much better now. I do what I can for Dad and have learned to balance my time for my own life without feeling guilty. Let go, Let God.

    Reply
  8. My mother was similar. Rude and demanding. Always getting “sick” when I left town. A good reference book I found was “Caring for your Difficult Older Parent” they have a whole section on trying to leave town or going on vacation. BTW. I had to go out of state to work, my mother skipped all her pills for 7 days, and then took them all at once on the 7th day. ODed. Almost didn’t survive. So I get it. I truly get it. She went from rehab to a nursing home and there she stayed. I took the job permanently out of state. I finally figured out that she was going to kill me from stress. And I had to choose to leave in order to live. She lived about 2 more years in the nursing home.

    Reply
  9. Totally understand this….haven’t lived at home for nearly six years now while caring for mother in law.

    Reply
  10. I’m 31 taking care of my 90 year old grandma. I often feel alone within my age because people don’t understand what I’m going through. It’s stressful. When I do try to open up, they give me the stupid pitty face and then work their way to exit our conversation This situation has affected my physical health, mental health, emotional health and social health.

    Reply
    • You can message me if you need to vent. Totally understand.

      Reply
  11. Ha! My dad almost blew up the house.. again. He keeps leaving stove burner on but not lit..

    Reply
    • Practical advice: Take the knobs off and keep them secured away. Takes a few minutes when you cook to get them on butworthwhile to not be bothered.

      Reply
    • If it is electronic ignition just unplug the stove…no electricity nothing can be turned on even with a gas stove

      Reply
    • I have childproof covers on the knobs but he’s taken one off n ‘lost’ it. He’s 90 but won’t consider a more social environment…

      Reply
  12. I understand. I was an 80 year old, caring for my 84 year old husband. The Lord took him home 14 months ago today! Now he’s healed and whole–but it was extremely difficult.

    Reply
  13. Most of us know someone who is, has been or will be a #caregiver. #caregiversned our support.

    Reply
  14. #metoo…..only difference to the story is I’m an only child, dad passed in 2000…and I’m living with mom,98,and see my husband occasionally…..we see this as a job I have to travel for….yes I am thankful to have her still here but I still deal with anger, resentment, guilt, etc….

    Reply
    • Tamara, I think we all deal with anger, resentment, guilt, stress, anxiety, depression, all of it. I am living with and being a caregiver for my mom. She is currently in rehab, hope she is home within a week. It’s in a way been a good break for me and yet, I find that I’m not only alone at home, but that I don’t seem to have friends nearby any more. I can’t think of one person, not one that I would call and invite over or go out for a cup of coffee with. Not only that, I probably wouldn’t have any thing in common to talk about to a non-caregiver. No denying that we are thankful for our parents and family members that are still in our lives, but it is not easy watching their life coming to an end and realize our life too has changed and ended in so many ways.

      Reply
    • So true. All these things creep in before we realize the drastic changes. Stay strong in your journey! We are all they have. Take much needed breaks without allowing guilt. You are there 24/7..it’s ok to rest. ..and yes, our own lives won’t ever be the same. ((Hugs))

      Reply
  15. I get it. Sending love to you, Carol M.

    Reply
  16. I’ve been there. Did the same for my mother with Alzheimer’s. I ended up in the hospital with diverticulitis and appendicitis. Almost died. She passed 6 mos later. That was a year ago. I’m still recovering from damage to my health. I also have lupus. Please hear me and take care of yourself. It’s ok to take care of yourself. In their right mind they would not wish you harm. You have your life to take care of and live. Fon’t Feel guilty. ❤️❤️

    Reply
    • “In their right mind they would not wish you harm.” best statement I’ve read/heard in a long time!!

      Reply
  17. So true. Don’t feel bad about feeling like that either.

    Reply
  18. It’s a choice. I cared for my mother for 10 and a half years. She died at home. It was a grueling journey but one well worth it because I love her and she was worth it. Whatever I missed was not as important to me as her care.

    Reply
  19. I am an only child in my mid 60’s & care for both my parents – 94 & 95 @ home. I work part-time since I can’t work full-time because of taking them to the doctor when needed. I have no family or help out here. All the relatives are back in the Chicago area. Not to say they would help if I was back there anyway. I’ve been doing it for 11 years. My father had a stroke & my mother broke a hip, had dizzy spells & has heart trouble with difficult to control blood pressure. But I’m hanging in there by myself (can’t afford to hire a Caregiver) since I only get one set of parents. They did a lot for me & I’m glad they’re still with me.

    Reply
  20. I totally understand. I’m 52 been living with my parents for 6 years, I left home my husband we had just become empty nesters. When I want to go somewhere even if it is home my mom is all about guilt trips. I have bipolar and the stress with this has had me to up my medications. I have 1 sister 4 brothers and every once in a while 1 might help but I can’t depend on them. Then they get angry when I can’t go do something with them. I’m so angry it isn’t even funny. Issues with my husband has me feeling like I’m not wanted at home or at home. I’ve already told my kids and husband put me in a home when I totally lose it. I don’t want to put my kids through this especially since I might be abusive to them. ((((((Hugs))))) sorry I have no answers. It is a tough love thing which ironically is how I was raised… go figure.

    Reply
  21. My brother does this for 3. It is an exhausting, sad situation. He needs a life, i wish I knew how to give it to him. ❤

    Reply
  22. I do 24/7 at moms home sold mine I genuinely feel for your pain and send you a real big hug

    Reply
  23. I know that feeling! But try and make the most of him while you still have him!

    Reply
  24. Totally understand. I’m 65 and take care of my 90 yr old mother who has severe dementia.

    Reply
  25. You lose your whole life when you are a caretaker 24/7. You are not going to change the outcome for that person. Only sacrifice your own. Thats just how it is.

    Reply
  26. I cared for my Mother in law for 6 years, I was 26 when I started.
    I have been caring for my daughter who has classic autism since I was 29
    I watched my Dad die from cancer at 30
    And most of my mid thirties were spent caring for my husband, who died of cancer last year.
    I’m 37 now.
    Not much fun being me either at times.
    I did it for love though, no regrets.

    Reply
  27. Same song …slightly different verse. Anger and illness are my constant situation. This is my life. I love my Mom but I am running on empty. The last 11 years have made me an old man. Trying to keep her at home at first…now there are no resources for any kind of extra help. I am just doing the best I can.

    Reply
  28. I took care of my mom for ten years. Family isn’t always there to help. No matter how much we had plan life takes unexpected twists and turns. Being flexible and able to adjust to life helps enormously. I would do it again. It’s all in Gods hands and ours too. Love yo everyone going through this. My mom passed away a few months ago. RIP mom.

    Reply
  29. I’m 63 looking after my 88 year old mom. It’s tough.

    Reply
  30. I’ve decided to keep my mother at home. It’s even twice the amount of work having her in a neglectful nursing home. It doesn’t do any good staying angry at others who you would think will(or should) help. Truth is…they wont. You better bet they are going to ha e their greedy hands out when the money bag gets passed around.

    Reply
    • And there is nothing that says they are going to get anything in those greedy hands!

      Reply
  31. I find connection and comfort here. It’s hard.

    Reply
  32. From a different perspective and as a parent of an only child I will never put my child through this. Never. We are making plans now for senior care one day. I gave my child life to live it, not sacrifice it for my needs. It’s my responsibility to plan for care not my child’s. My heart is with you and after a decade of similar and almost losing everything I’m learning me time is essential

    Reply
    • I am the only child of a single parent and have only one child of my own. I agree, I won’t ever put my son through what I’ve been doing these last 5 years, especially as there is no end in sight. Best of luck to you all.

      Reply
    • I’ve had this conversation with my son before that I do not want to be a burden to him if and when I get older. I have never been a needy person and I don’t foresee becoming that way. It may sound terrible but I wouldn’t wish what I have had to go through with taking care of my 85 year old mom on my worse enemy. I love her dearly but unless someone walks in your shoes, they have no idea how hard it is being the only caregiver.

      Reply
  33. My mom does the same thing, either consciously or subconsciously sabotaging my rare vacation. She seems to be sympathetic to me or my kids not feeling well, so I now use that as my excuse when we travel. Let go of the guilt. He is a grown man making his own choices. You’ve made sure that he is safe and cared for in your absence. Be proud of that and realize that you burning out is in nobody’s best interest.

    Reply
  34. I cared for my loved one 7 years.
    Though had a stroke could not walk aphasic our life was happy each day. Got a H van and with help got out. It was an effort but worth it. Had lots puzzles, WI game, Red Sox, he understood all
    And with all the sickness I felt we both were blessed to have those years together. Also rotated pix on walls , had singing Marine doll and others. Did limited things on computer. Many visual aids.
    And always love.
    Elaine

    Reply
  35. I’m so sorry. I’m going through a rough time care giving with my dad. He is in a nursing home now, but it IS still rough…the phone calls, wants to go home, etc. I know this too shall pass, but it is a long haul with very few good memories. He is the most difficult family member I have ever done care giving for. He has to be my last. I have to take care of me.

    Reply
  36. My mom just passed on March 11th from dementia I was her caregiver for 6 years. I’m 48. I don’t regret it. Would do it all over again for anyone.

    Reply
  37. I too understand the hardships of caring for those we love.
    I was my mother’s only child and I am sure you feel as if you are an only child too.
    I learned the best made plans were no plans because if I made simple plans something always happened to interfere .
    Hang in there!!!!

    Reply
    • My mother passed away in January. I often post getting as many comments as I possibly can asking caregivers what would help their burden. I would so much like to start helping others in their journey. I know how I felt during the 7 plus years caring for my mother. I am brainstorming to see if there are one or more common needs.(prepared food, supplies, gift cards for the caregiver, etc.

      Reply
  38. Yes, but it is NOT a long-term situation! I was the same age when I started caring for my Mom 24/7 every other day. My sister alternated with me. WE ARE SOOOO GLAD WE DID IT! Mom passed at home in her own bed shortly before her 92nd birthday. We did it for 1 1/2 years – I will never forget or regret it! One day at a time…… it is an incredible gift to the loved one. ❤❤❤

    Reply
    • Im glad you had help. 4 of us kids&only me &1sister would do anything. Im the only one with a kid at home to care for as well.

      Reply
    • Thanks for these encouraging words! I have been living with my mom as her daughter and caregiver for 5.5 years. I am now 61. She is 83 and has advancing dementia. I pretty much do it all and maintain the house. Some days are good, some days I cry to get things out of my system. I want to keep my mom at home as long as I possibly can. I pray for patience, as that has proven to be the most difficult part for me. I know in the long run, I will be glad for the days I have with her.

      Reply
    • Yes, BUT in many cases it IS a LONG term situation! (I deleted the rest of my rant about not having any help and doing it for years and years)

      Reply
    • It is truly hard and I give you so much love and respect. Cherish each day you have with him <3

      Reply
  39. As a75 year old looking after a 81 year old spouse,l miss what few years I have left could be enjoying life a little. # nonotcaregivingyoucannot#*}{}}

    Reply
    • Such a negative feeling you have. Try and think the happiness you both could share. Maybe your feeling his illness is holding you back. But in reality it is what it is.
      If your able to sleep realizing he is in a nursing home in a room with few pictures nor his trinkets looked at a few times as often caseload allows little time. You might miss him more than you think. Perhaps a counselor might help.
      Also if in nursing home those visits can be a schedule you cannot meet.
      I wish you a good decision for you.
      Elaine

      Reply
    • No no negative feelings here Alzheimer’s and for 8 years ,he has been a hard one to deal with aggressive. No nursing home At home and I have been with with 58 years and lots of good times. Sometimes a person just gets wore out. Never understand unless u have been here. Tks

      Reply
    • I understand completely. I am 60 taking care of my 71 yr old husband that has Alzheimer’s. Unless you are living it, you don’t “get it”.. Hugs to you…and please try to find some respite care for him, so you can take some of those fun things for yourself.!

      Reply
  40. I’ve come to the conclusion you just have to try to live your own life. Whats going to happen to them will happen whether you are there or not there. At our age mid 60’s we cant keep putting off the things we want to do. Life goes by while we are doing that and that’s not a good thing. Caregiver to my mom and now caregiver to my dad. All in all total 10 years of this caregiving thing.

    Reply
    • True my elder care attorney just told me that this week. Easier said than done but
      the statistics for caregiver fatalities on rise. I never want to put my children through this. Never

      Reply
  41. I understand, I am 63 and have been looking after someone for 30 years, now it is my husband and my dad. Bless you for your caring!

    Reply

Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.

%d bloggers like this: