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I would like to give the Hallmark answer: cherished memories, rewarding moments, uplifting experiences. Unfortunately that has not been my story. I realize there are many that do have wonderful CG experiences and I’m happy for them. Sincerely. But as I near the end of this chapter, I realize that my life is an unmitigated disaster. I have no family relationships left, my friends have all faded away, I sacrificed my career, my own health is poor, and I will soon be homeless. And my adult children, rather than learning from my mistakes, seem to be taking on their own caregiving tasks. I can’t help but wonder if I’d demonstrated more self care then maybe they would be more diligent in practicing it.


Any regrets? Would you do it differently?

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Like getting absorbed in another orbit & losing sight of my own planet for a bit. Life is short. Now I'm seriously looking at what's here on my little bit. Time to reassess.
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xrayjodib Jun 2020
Right on Beatty ,
8 months ago I never would have imagined this!
It's so hard not to mourn life before caregiving.
I don't think that's selfish, I think it's just our reality!
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Even if the OP is no longer a forum member, I think it’s a valuable thread.

Much like xrayjodib described, my caregiving didn’t feel like a choice. When the stuff hit the fan with my elderly family members, everyone else RAN in the opposite direction. I was the only one that felt the need to step up and do something. I was naive and didn’t expect it to be such a long and difficult journey. I don’t regret trying to help but I do regret how I chose to help. I allowed myself to become enmeshed instead of placing boundaries and making the kind of decisions that would have preserved my own mental, physical and spiritual health. To be brutally honest, at this point I just pray for it to be over with. My heart goes out to everyone who has been or is a caregiver. God bless you all!
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xrayjodib Jun 2020
Amen Nemophilist!
Sometimes caregiving chooses us.
I totally understand that we are not all wired the same. For me, I couldn't bring myself to walk away from my Aunt. That's me and not in anyway a condemnation of anyone else! There truly wasn't anyone else. She would have become a ward of the state.
Sometimes I wish that God had wired me differently.
How do you explain to someone else why you chose to take on this burden (yes it's a burden)?
Maybe the true definition of a Labor of Love???
God bless!!
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This tread is from NOVEMBER 2019. I think the OP already left because the name is anonymousXXXX.
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Wow!! Any regrets??
I imagine that like so many of us, you didn't really have much of a choice in becoming a caregiver!
Somehow, becoming a caregiver finds us!
Speaking for myself, although I would never in a million years have taken on my current situation had I known the stress, I didn't see any alternative. I wouldn't have been able to live with myself if I had just walked away.
I think you have to find the peace in knowing that you gave your best for someone in need.
I guess my only regret is that I didn't ask more questions. I never saw it coming.
Praying that our rewards will come later!
God bless!
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stress all of it
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caregiver is not an easy job hugs to you all may God bless us all it's so nice to have somewhere to vent
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Caregivers can end up unemployed and homeless once mom (or dad) dies. Older, age discrimination plus years out of the workforce. It can affect your retirement to the point you cannot retire because you did not pay into the system. Mom and dad dies but the bills will never stop, and if you can't pay them you become one out of the millions of people homeless.
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It wasn’t a “choice”.....using that word suggests you know nothing about the reality of things.
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NeedHelpWithMom Dec 2019
True. Some of us were dealt a bad hand. It’s difficult to know what to do.

I think the OP means that we made the decision to be a caregiver. Many people do not decide to stick around to do the caregiving themselves.

Sometimes we have to make arrangements for others to do the caregiving.
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I just turned 21 today and I started caregiving for my grandma and grandpa when I was 13. My mother helped a lot but the more she got older the more her health started to deteriorate. I made the choice when I was a senior in Highschool that I would take a gap year to help my mother out until my sister would become a senior (should had less classes) but Jesus has other plans.. I really never had a job. My first full time job I started when I was 18 and stayed for 9 months. I’ve been jobless for a year and don’t know how to drive yet (I’m learning now :) )I was going through a lot and plus i was diagnosed with a rare brain condition called IIH. The older I got the more I asked myself was this really what I was suppose to be doing. I saw women my age in college with cars, friends and jobs but I was always at home taking care of my grandma. Sometimes.. it stresses me out a lot but I get through it all with Jesus Christ. My family had been through a lot with other family members calling social workers on us and not having a lot of money, but Jesus has brought us through every trial. I made the choice of wanting to stay here because I knew that’s what Jesus wants me to do. He wants us to take care of our elders. It was my choice Even if it meant sacrificing a lot which I did. There were times I regret it.. my grandmother can be a handful and when my grandpa was alive he had dementia so it was really hard dealing with them.. but we got through it with Jesus strength

”I can do all things through Christ Jesus which strengthen me” Philippians 4:13
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Pasa18 Dec 2019
Petrasmall12, Happy 21st Birthday my dear. I am so happy to read your post this morning. The young adult grandchildren in my family have not lent a helping hand with my mother and it truly saddens not just me but their grandmother. Not much is asked, just one thoughtful act. You have experienced the hardest job of all, which is to take care of another and have developed skills that count for experience in the job market. Please give yourself a gift and start the life you want and take care of yourself. You deserve to explore the world and have friends and secure your future. Please find a social worker though the hospital or county that can help you get paid or find what's best for your family. Driving is overrated but it sounds like a key to independence. Best wishes and good luck.
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I am doing a project for my university about caregiving. A lot of the questions I have asked deal with the emotional drain that caregivers experience. From what I have learned is that a lot of professional caregivers as well as family caregivers burnout pretty quickly. Your post is really helpful in me understanding what caregivers go through.
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NeedHelpWithMom Dec 2019
Thanks for choosing to shed light on an important topic. Hugs!

I appreciate your interest. My daughter is graduating this year from LSU. She’s majoring in business.

Best wishes to you.
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This is my second go-round as FCG. First my mother with AZ, now my schizoid middle-age son, and my blind disabled wife- together.
Isolation be thy name. Personal activities flee like wraiths into the night, quietly, dispersing.
Don't blame yourself for your adult children! Once grown, they follow their own council, believe me.
I'm 70, years are precious, and I can easily see my dull future. No one will care, or see the effort but us.
But God will notice. Have heart.
Would I do it again? Sorry, NO- I would scour social services, contact family if possible, anything- and damn to any guilt.
We know. They can't imagine.
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Beatty May 2020
Tucson, you have a great writing style.

I don't see a dull future for you - plenty of life in you. Maybe doors you thought were locked may open - keep checking them.
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Care giving has been very hard. It has made me angry and resentful but I am slowly turning and putting my head somewhere else. This is all due to family (his) interference

My husband and I have been together since we were 16 and 19. We are now 61 and 64 and in all that time his family (except his father who died 22 years ago) have “endured “ me. I have no importance in his mother’s eyes other than to look after her son. I am persona non grata

My husband first showed signs of FTD aged 58 and during all these years his family have never asked me how I am, just what I should be doing and doing wrong for my DH. However no actual help. He has just entered care and it’s been a nightmare both with him and his family. The lies and accusations are terrible. They blame me for his illness and completely stopped talking to me so go through other avenues to get information. They try to replace me and be in control. They go behind my back When DH was well I just ignored their behaviours and dismissal of me but there was no way I was going to keep him at home for years and put myself last. FTD can be dangerous as the person can develop angry outbursts which he started to do and he also suffers from compulsive behaviours. Also there is no way I am going to visit him every day (2 hr round trip) and sit with him and entertain him for the day as I have been told to do, email of course So now he is in Observation ward for a week to calm down. This is because of the stuff they put in his head. They are going nuts because I have taken his phone and he is only allowed one call a day by his doctor and that’s to me. He cannot accept calls except from me. He has been so great these past three days. Calm and no aggression at all.

over the last two years my oldest son has been great help but he’s on the sh*t list now as well but finally taking control 100% and not second guessing myself is starting to work out for me and my DH.

So so being a caregiver sucks but ignoring or keeping the trouble makers out of your life and the one you care for works
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Violet521 Dec 2019
I'm sorry you have to go through all that, PandabearAUS. It's terrible that his family interferes that way. You deserve better.
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I was a caregiver to my mom for more years than I care to remember. It changed my life drastically and not for the better. It wasn’t because I didn’t care. It was the opposite. I cared so much that I neglected myself.

No matter what anyone says. Anyone! Caregiving is not easy. Ask any caregiver and if they are truly honest they will tell you that.

Yes, some people are blessed with lovely parents. But even with lovely parents, people are not perfect. They aren’t perfect. Caregivers aren’t perfect. Let me tell you that you don’t know a person until you live with them. Their true colors eventually come out.

Nothing is easy in caregiving. Like I said, even in the best of circumstances there are ups and downs so don’t believe the ‘Pollyannas’ in this world because they are portraying a fairytale life that simply doesn’t exists.

I don’t believe in sugar coating. I believe in speaking the truth. The hard truth that perhaps some people don’t want to hear or face but only the truth will set us free and truly help. Denial does nothing to help but causes so much harm to everyone.
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keepingup Nov 2019
Amen. I kept so many secrets as a caregiver, making sure everything looked fine. When my mother passed, my own neighbors were shocked when they became aware that I myself had MS. If
I had let in a little light, a little more truth during those years, the process would not have been so difficult. All caregivers: Take the help where you can get it.
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I was CG for mom. My experiences were your first sentence
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If I had a do over, I wouldn’t do it. I have a damaged heart muscle from stress. I have all kinds of health issues. My mother is fine other than MD, can’t hear and has fits when she has to take a bath. She is 90 and I will be 71 in a few months. I am to old for CG. She has no money and I don’t either. My husband is a Godsend. I couldn’t begin to do this without his help. We have only been married 5 years. I give him tremendous credit for just staying with me as I travel this road to hell.
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MumsHelper Nov 2019
Ughh... Bathday... It's a dang battle every time (which is only twice a week most weeks). But if my husband is home, she is agreeable to it because she doesn't want him to see that side of her.
I used to think it was because she would get cold, but as I've come to know Mother, I understand that it's more of a control issue.
Good to hear you have a supportive husband.
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I went through nearly 17 years of caregiving for my mom, but her last 2 years were the worst as she was bedridden with multiple health problems in my home. There was less pressure when she went on hospice. The pressure came during the time period after her fall and hospitalizations, where she went to nursing homes for rehab afterward, and I saw how awfully incompetent staff were there. I won't go into detail, but at times I felt like my life and my poor mom's life were turned into a horror movie. I took her to my home on hospice where she was much happier. So many people we dealt with which is not nice when you are private sort of people. My mom passed peacefully 4 years ago, but I am not the same person. It is hard at times for me to feel joy or happiness. Then one year after my own mom died, my husband's sister, his only sibling, died of a drug overdose while living with his mother, 89, and now we have been thrown right back into caregiving. MIL shows more energy and enthusiasm for life than I do nearly 30 years younger than she is. My husband and I both have health problems now and I am sad I had to give up travel and my dream of retiring somewhere else.
Friends, ( most of them that failed at caregiving and pushed their parents on to siblings), seem to think caregivers are some wimpy pushovers and the things they are interested in seem frivolous and meaningless to me. Sometimes it all has made me stronger but I am depressed much of the time, and feel my life as it was a decade or more ago is gone.
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BlackHole Nov 2019
Katie - Will MIL once again make enough food for 15 people @ Thanksgiving, when it’s just you & hubby at her table?? (Or just hubby?!?) 🦃

Big hugs. This is a funky time of year. Take good care of yourself. 🧡
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Yes I would have done it differently. My mother lives on the east Coast and if I had to do over again, I would have moved to the West Coast.
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LittleOrchid Dec 2019
LOL. You should have told me this 5 years ago, when we sold our house on the East coast to move to the West coast to help my sisters with Mom! Mom is still going strong, which is more than I can say for my sisters and I. We all have/need surgeries to correct back and joint injuries sustained while caring for Mom. Mom gets more and more disabled and can do ever less for herself, but she still has a strong voice when it comes to asking us to take on more.

I have told Mom very clearly and frankly that when she can no longer get to the toilet on her own or get from her transport chair into the front seat of my car that she will have to move into residential care. She is in denial and refuses to make any plans.

She has no money so she will be looking for a Medicaid bed. I have been equally clear with my sisters, who provide more care than I do. They may be willing to further injure themselves doing Mom's housework and laundry, but I am not. I see that as enabling Mom to avoid making the obvious choice to move into a care situation where these details are taken care of.

I have come to think that if a person is over 60 and an even older parent needs more care than a cheer-up visit and picking up a few things at the store the immediate response should not be "let me help you" but "let me help you find a nice place in a caring place where these needs will be met by someone who is trained to give care properly." We are excessively trained to "help" even if we, ourselves, are not really all that strong. Sometimes, for short term needs that is a good thing. Caring for an aging parent, however, is not the same thing as giving support and care for a friend who has spent a couple days in the hospital and needs help with making meals for a few days. This is a long-range thing that can go on for decades.

Indeed, move 3,000 miles away if at all possible and do the nice thing of calling frequently and sending photos through the internet of all the nice things you are doing so Mom can enjoy them vicariously.
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I had to drop ALL social and volunteering activities. My husband is currently doing in-home dialysis. He's also a stroke survivor. Kidbey disease exacerbated his ongoing deficits. I MUST be here for each exchange. Between exchanges, he's often ill and dizzy, so I try to stay home most of the time.

"Getaways" are restricted to errands. After dark is best (he's less likely to try anything risky), and 2 hours MAX. I try to keep every outing under 1 hour.

His cognitive and stamina issues are odd and unpredictable. We cannot afford an aide. Family is morally supportive, but honestly unable to help. (In fact, I feel guilty because I can't do much to help *them*.)

I've had lifelong social anxiety. My husband is still quite intelligent, but we can't have the in-depth conversations we used to enjoy.

While social anxiety's always slowed me down, until now I've always been able to stay connected to the world. Now? If I even get a chance to rejoin humanity ... frankly, I fear I won't be able to.
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shad250 Nov 2019
Computer, Internet, online
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Hallmark is a commercial SIMILAR TO THE Hallmark Channel. It has no connection to reality. The toll it takes on you to be a caregiver in no way resembles the Hallmark brand. I believe all caregivers are heroes, dealing with the physical and emotional job... You work your heart out to give them quality of life. I did it for ten years with m.s.. Please, please care for yourself. The years do not come back.
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The family suffers, spouse and kids. Friends do too, no time for friends or extended family. All are neglected. Plus the caregivers are neglecting themselves. Only person not neglected is the elder.
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I think the experiences in care giving depend largely on family relationships over the many years, and even the attitudes of the previous generation towards care giving in their own experiences. My wife and I have a large, loving and caring family of four children and fifteen grand children who live in other states, but even so are keenly interested in our situation as I assume care giver for my wife, in accordance with marriage vows, having no other guidance than that is what my parents did and their parents before them. Life long friends are now only on the Christmas list; they say they would love to visit but somehow it never works out. So we let our world shrink, take no long trips or sightseeing vacations, make friends with those around us, and in church, and live with the dementia from day to day. I cannot say that these are Hallmark experiences, but it is how life has positioned us in these last days, and we try to make the best of them.
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anonymous979634 Nov 2019
I admire your attitude. And you make a good point: having had a dysfunctional family for generations, it was unlikely my sisters and I could pull it together now. I guess we all do the best we know how to do. I’m trying to learn, though, and move forward with more gratitude and self care. I’ve only been on this forum for several weeks but it has made a huge impact on my life, and all in good ways. Thank you PungoMac, and thank you everyone!
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I imagine for many of us it was not ever a choice so much as we just fell into it. I can't regret it from a practical, moral level because that's what family is...there for each other. But in times past things were different, roles were different, etc. I can't say I'd do anything differently, because here is give and take. I benefit as well living with the family I care for...but I would have wished to have been more aware of what could happen and I would have saved more, planned better. Right now I live a bit fearfully because if my father who is home much of the time to keep an eye out on mom who has dementia is no longer with us, my whole life could be turned upside down, i.e. if I need to retire early to be mom's caregiver which I would take on over placing her.
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Canoe63:
Nobody seems to have thought of the most obvious first thing to do: Take away or hide or otherwise remove all the possible weapons. Knives guns clubs ammo etc. make em disappear. Then go from there.

Well was it Canoe63 that came home to 2 knives and a gun or someone else? Looking back thru I can't find that post. Oh well. FWIW.
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anonymous979634 Nov 2019
No, it was Gigi. I responded to her in my thread and implored her to get help. I’ve not heard anything more about it and only hope she is safe now.
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Most people don’t have huge families anymore. Ideally caregiving should be shared if the person isn’t placed in a facility.

My husband’s grandma was the oldest of 12. His grandpa had a big family too. They grew up on farms. What was there expression, “Many hands made for lighter work.”

Today people have smaller families. Even in big families one person usually ends up doing all the caregiving and it’s too much!

It was too much for me. It really was.
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Canoe63: You're very welcome! I'll pray for a better outcome for you than what you think may happen. I sincerely hope that things change for the better for you!💞💞💞
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For me, yeah, I don't have any of those Hallmark moments either. I guess that's what I was hoping for when I took on this role caring for Mother -- that we would have a close relationship, that she would want to participate in life, enjoy her grandchildren and great grandchildren, blah blah blah. It's all the opposite. At first I was the wounded child of my past. Now, not so much anymore, but I'm bitter at times and I don't really like her. It's just a job.
Mother is cold, critical, passive aggressive, dismissive, unappreciative... Not someone I would be friends with.
I see that my youngest, 16, has been affected the most from having her with us. She would make passive aggressive remarks towards him until I made it clear it's unacceptable and not allowed. But occasionally I catch her scoffing at him or mean mugging him. He rarely eats supper with us because she has this way of making him uncomfortable. She just has this look of criticism and disapproval. It's a look I know all too well from my youth. He almost never goes anywhere with me if she is also going.
Recently someone commented how nice it must be to have his grandma with us. His reply, "She's not that kind of grandma."
I'm fortunate to have a supportive husband to lean on and keep me anchored. I'm not as depressed as I was last year, but I think it's because I have pretty much accepted Mother and I won't ever have that special relationship and this is just a job.
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Jules12 Nov 2019
I think you’ve pretty much described my situation and it’s about to get the best of me.
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For me caregiving wasn't so much a choice as a kind of calling. I had always been looking out for my mom in some capacity or other so when she started to age and her health declined it was kind of a no- brainer.

The only thing I may have done differently is get her outside help sooner. But she was good at hiding things and acting like everything was fine so in my own defense I didn't see the signs as soon as I would have if she had not been like that. Plus the thought of mom living in a nursing home used to just bring me to tears. Even just the thought of it. I thought I could do it all for her until I couldn't anymore. Seeing the look of betrayal she felt on her face was devastating for me. I always felt she was thinking "how could you do this to me" But there really wasn't any choice and she may have never realized that but I'll never know cause like I said she was always "fine" when I asked. She even convinced herself at one point that she was living in a new apartment, not a nursing home. Bless her heart.
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Canoe63: Good grief - You'll be homeless?! How on earth did this happen? Oh, my, I cannot fathom how sad this is for you. Dear Heavenly Father - Please lift Canoe63 up in prayer this very minute. Thank you, God. Amen. Seriously, I am praying for you.
Would I have done it differently? Actually I could not as my late mother demanded to live alone in another state 7 states from mine and all the way 'cross country from my brother. I had to move there for an extended period. Yes, that is correct - I had to leave my own life behind.
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anonymous979634 Nov 2019
Llamalover,

Thank you for your prayers. I’m truly grateful.

Yes, I moved into my father’s home at his request some time ago. He’s under hospice care now, in home, and actively dying. Upon his death, my oldest sister inherits his property and I’m sure she’ll want me out very quickly. It’s a long story of dysfunction and drama but honestly I’m okay with it. I’m just a little scared about how it will all work out.
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Caregiving does have a huge cost - emotionally, financially and in relationships. That is why burnout is such a big problem in a 24/7/365 job that doesn't pay and everybody is critical of your performance.

I saw it with my Grandmother caring for her parents and in-laws and eventually her husband. She did a great job considering she was a teenager during the Depression and had to drop out of school at 16 to work so the family could eat.

I saw it with Mother who quit working to care for Grandmother for 7 years and took early social security to make ends meet. Gram is now gone and Mom had to sell her home since she didn't have the finances to keep it. Mom stayed with me for 6 months before landing in a nice little condo in a nice community. I figure we have about 5 years max before she will need to move in with somebody (most likely my family).

I plan to return to work after taking 10 years off to raise my family. Yes, mom will need care and I will be working at the same time. I plan to rent out her condo to pay for her daytime caregiver. I have learned that you must take care of your own health and your own retirement. Nobody else will do that for you - no matter what your circumstances are.
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In hindsight, I never would have decided to care for my now 93 yr old mother. She’s been here for 8 yrs now. She’s in hospice for a little more than 6 months now and for that I’m so very grateful. It has relieved me of so many responsibilities. I developed cancer and I am going through chemo now. The cancer developed over 2 yrs ago, 6 yrs after my mother came, so I feel the stress of the first 3 horrendous years of caregiving stress brought it out. So, with my hindsight, I would tell people that it is an almost impossible task. Look for a way for the parent to benefit as well as the child caretaker. Don’t expect roses with this job. It will never happen.
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anonymous979634 Nov 2019
Nymima,

I am so very sorry for all that you’ve been through. I hope for health and peace for you.
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