How has caregiving changed your views of life and aging?

I hate to think what’s going to happen to me. I’m available to help my mom because my 30 year marriage ended after we lost all we’d worked for due to drug an alcohol abuse. So...I moved in with Mom and thought I had at least 0-15 years to work and provide some kind of life for myself after being a homemaker. Didn’t work that way though as moms sedentary life began to diminish.
Don’t get me wrong. She was a real go getter when it came to work. It was retirement that got her down. She never learned how to take care of herself, manage her diabetes, eat right exercise because work kept her thriving and prescriptions solved any physical complaints she had.
Once she retired she pretty much just shopped for things she’d never use or sit around. And sit and sit and sit... When she broke her hip, that was the beginning of the end.
Yet no it wasn’t because she is still relatively healthy but she’s weak, deaf and nearly blind. Who knows how long before she needs professional care, though I can’t lift her when she can’t walk.
Here I am, I can’t even draw my husbands social security because he’s several years younger than I am and I have to wait until he’s retirement age.
I don’t want to be a burden to my kids but I don’t see any light at the end of the tunnel and I won’t willingly give up living while I have them to love and watch. I don’t have any answers. Honestly this thread is making me see that I really should lose this extra weight and get even more active so I can live healthier than my mom is.
Now reality kicks in...Mom is housebound so I’m under house arrest. I have no contacts no opportunity to engage socially, I only get a break to go to my own dr. No wonder I’m sick all the time. This isn’t the life I planned. No not at all.

CharK - I totally relate to what you said. Especially the part about being under house arrest now that your mother is house-bound. My mother is also house-bound, and I'm not living with her right now but I have before and I probably will again, as her housemate is moving out soon and I will need to take over until Mom dies (she's currently on hospice).

I don't have kids or grandkids, but I have the same dilemma, about not wanting to end up immobile and helpless like my mother. The dilemma is that the stress and hopelessness of living as a hostage to a parent's needs seems to make it even more difficult to focus on one's own needs, especially those that require concentration and effort like diet and exercise. I'm back and forth about it, having lost and regained the same 30-40 lbs several times since I've been taking care of my mother.

Right now I'm on a roll, since I've just become eligible for Medicare and have chosen a plan that offers Silver Sneakers gym memberships. I hate to exercise alone, but I enjoy the classes very much, especially water fitness, chair yoga, and senior fitness. The social aspect seems to motivate me to actually go instead of just thinking about it. Plus it keeps you totally focused and in the moment, and that relieves a lot of stress for me. The classes are strenuous enough to make me realize how weak some of my muscles are, and that motivates me too. I too am desperate to not end up like my mother, partly because I have nobody to care for me but also because I don't want to be the one to impose house arrest on any other person.

My big fear right now is that if and when I do have to move back in with Mom, I will lose all control over my schedule and I'll have to find the motivation to keep exercising even if I can't make it to the classes. Hoping for the best, for myself and for you too. :-)

CharK...I totally understand. I am the same way as to who will care for me if I get down. I am almost 67 and between my Mom, Dad and my honey have been a caregiver for about 32 years total. I have a wonderful daughter...they live a long, long way from me and I would not expect her to take over my care if I got down as she has a husband and four daughters. I have a brother who lives two hours from me and I can count on my hands how many times we have talked in the last 10 years. I would not expect my honey's brother and his wife to help though they are like family to me. So I have to rely on myself to keep Me going and half way healthy even with all the health issues I have had.

If your Mom has to be lifted and you are not able to safely and without injuring yourself the time is now for professional help. I didn't heed that red flag and ended up having another TIA, a back that was devastated ( I can just now walk around the house, run into a convenience store or walk short distances without my cane) for lifting/being support/ or pulling on him to get him out of bed, up off the couch or toilet when he weighed over 236lbs. Trust me it is not worth it. It is time to seek professional help. I am not sure what your Mom weighs but at the hospital and rehab I was told no matter a person's size, injury to a caregiver happens often.

As for your Mom being housebound see if you can arrange for someone to come in and sit with her for an hour or two several days a week. (contact your local senior center; talk to her doctor etc. I know private caregivers are expensive...but maybe they can help give you some options. Do you belong to a church? If so talk with your pastor.)This will give you some time to get out of the house for a while and maybe even work part time. Let her doctor know the situation and that you are having to lift her and you are concerned for your own health .

Please do not let a feeling of guilt or duty get in the way. It sounds as if your Mom needs to be in skilled nursing and rehab. I did not see where you said how old your Mom is. If she is on medicare and the doctors order it, that might be an option. Rehab is not only physical but occupational as well.

Sorry didn't mean to be on a rant or write a book. Hope this helps. Take care and please keep us posted on how you are doing.

It’s taught me to take my health seriously. To eat right, lose weight, exercise, and meditation to balance out the stress. It’s also taught me to enjoy my youth while I can (I’m 46) because I’m a heck of a lot younger than I think I am and I don’t want to look back at this time in my life and feel like kicking myself for taking it for granted.

It’s also taught me that under no circumstances do I EVER want my children to waste their youth taking care of me when there are perfectly good facilities with trained staff nearby. So we’re saving well for our retirement and making sure all arrangements are in place for assisted living when the time comes. I’ll be making that decision, not my kids. I won’t burden them with the guilt or the stress.

My mom is 92 and as I understand it MediCare doesn’t pay for assisted care. She would have to sell her home to qualify for medicaid and she’s dead set on leaving at least that to us. Especially she’s worried about me as I said, I have no assets and will have to live with my daughter. My daughter says she’s looking forward to it and wants everyone to know that I’m not trapped here but I hear her talking about other ppl she’s lived with and mostly it doesn’t work out.
I have a sister and brother here but they don’t think to offer respite for me. Since I don’t have social life I don’t really ask. It’s too much trouble to arrange for care and a ride for me to do our grocery shopping so I don’t bother asking for a break.
Point in fact: I had an emergency bowel resection couple years ago. I was 10 days in hospital and 3 weeks in care facility and they were hard pressed to have help for mom. I came home with a colostomy bag and they left me alone with her the first night. She was not chair bound at the time but she hasn’t gotten her own meals for years now or anything else really. I had the surgery reversed and again I was alone with her after 5 days in hospital. I don’t object because if they can’t see that I’m in more need than Mom I’m not about to argue over it. I’m 65 now and I feel my age since those surgeries. Altogether I’ve had 5 surgeries in the last 3 years and am looking at another incisional hernia repair. Wah wah wah maybe it’s not such a good thing to complain out loud!
The hell of it is I’m getting more family help right now than I have since I started taking care of mom. They rarely visited and didn’t do anything for us. Having them come around sometimes adds pressure to me wanting to keep up appearances. Their best trick is to plan a family gathering and have it here at our house “for mom’s sake so she can be comfy at home.” Guess who’s in charge of getting the house ready, setting up extra chairs, planning the incidentals then stuck cleaning up after? Except for her most recent birthday in April so maybe they’re beginning to see my reality. Crossing my fingers but wish I weren’t already so negative expecting the worst all the time.

CharK...please don't ever feel bad about letting things out ("complaining"). I can't speak for everyone, but what I have found since I joined this forum is that this wonderful group of people here, if they don't have advice or knowledge on a particular issue I am having, they have always let me borrow their shoulder to cry on. But in most if not all cases on my posts they have given me wonderful insight into what I was going through and how to weather it.

CharK trust me if I had been left alone with my Mom, when I was the caregiver for her, right after surgery I would have been strongly making a statement to my family and doctors that I had just had surgery and could NOT care for her. Please don't sit back and not say anything as it puts you in a position that it could delay your recovery or put you in danger. What will happen if it makes you worse or delays your recovery and you end up right back in the hospital or possibly worse?

As to the get togethers, I would very firmly (out of earshot of your Mom) tell them that is fine but here is a list of the tasks each of you is responsible and "Oh, by the way ________ is in charge so if there are question call him/her. If they balk, or refuse, or give you a rough time sweetly say "then we will have it your house and you can come and pick both of us up and bring us home". As to keeping up appearances....my home is reasonably clean but is definitely cluttered (not to where it will cause problems with my honey getting around) and sometimes it needs some dusting, but whether it is family, visiting nurse or rehab I have an old saying that works...well actually two. 1. what you see is what you get. 2. when you start paying my bills and handle the caregiving then I will worry about appearances. My honey's family is great and totally understands. They visit about once a month as they have a 4-6 hour drive to come and see us and I know in an emergency they will drop everything and come up...but they also understand with taking care of my honey, a home, our 4 legged "babies", trying to start a business (actually two) as well as my health issues I do not have the time or energy to keep the house spotless or keep up appearances.

I guess what I am trying to say is don't worry about what other people think as long as you and your Mom are taken care of. Housework and laundry will always be there the next day. The month that my honey was at hospital/rehab gave me time to get to know myself again and to figure out the boundaries that I needed to set. And setting boundaries on what you will allow people to ask of you or to do is very important. I have definitely learned to say no. (and mean it). The posts that I made on "how do you handle mean" post was when I first joined through the time my honey came home.

It is still hard at times here but I stand firm on the boundaries that I set as well as what I will and will not tolerate and make it known when my honey tries to revert back to the way he was between February and May of this year.

Please take care of yourself and please keep posting. Hope I haven't sounded harsh, but I hope what I have had to relearn helps you and others on this forum. (Smile)   I know I post on a lot of subjects, but I only respond when I can respond with personal knowledge of things . My Mom used to tell people when I was 36 that I had lived the life of a 70 year old. Sorry about writing a book.... (sheepish grin)

I have always had a great love and respect for the aged and infirm - I would even visit nursing homes in my youth just to spend time with them. Now, at the age of 64, my attitude has changed. I don't know whether it's a result of caring for my parents and husband and all the frustrations and sacrifices that entails, or whether it's just me. That bothers me.

My Mother was a very bright woman and she made a point to assure me that she, "Would die before she would put one of her children through being her caregiver!" We never really know do we?

Growing old can be a wonderful experience - or not.

Personally I would rather die than live through Alzheimer's and I hope there will be a legal way for me to do it if necessary. I have watched my father go from being a high functioning fun loving human being to a vegetable and it has been heartbreaking. I know he would not want to be alive like this. Even when your LO is in assisted living or NH, there is still plenty of responsibility to pay for it and make sure the care is adequate. I do not want to burden anyone with this and the fallout from having family members who are able to help but refuse to is almost too much to bear.

I get it! I want to slap anyone who says caregivers are angels. And also slap the ones that say I am lucky to still have my mother. I love my mom, but caring for her is not a matter of good luck or sainthood. We are both unhappily stuck with each other. My mother has needed care for the last 10 years and it has been hospital visits, ERs, SNFs, and doctor after doctor. She is now in AL, but the care there is sub par because of low staffing, untrained staff, and inadequate activities. A lot of what I see there is so tragic because of old age and the difficulty the aged have with change, problem solving, understanding they are too old to do what they could before, and feelings of abandoment which leads to depression and anger they cannot battle well. It is not pretty and no one cares if your kids don't, or you don't have anyone else. I hate seeing how some of the people at the AL are like wanderers in a lost world. Their needs will never be met. Life sucks and they cannot expect it to improve and trying to fix it makes everything worse instead. For me, everyone else comes first. I cannot take time for myself so that suggestion when the doctor tells me that is just plain stupid. When I watch tv ads showing what a great life retired people can have, I just think, "Their parents must be dead." It's an odd world to live in where you love your parent so much and hate what that's doing to your life.

You’re not alone , believe me. Please don’t give up the opportunity to have a child. I put that on the back burner & have been stuck caregiving for my abusive, ungrateful, violent 91 yo mother w dementia. I believe she’s possessed by Satan.

Have a family...it’s something I wish I did...only chance now would be w a donated egg. I’m 59 ...my cousin had her first & only brilliant daughter at age 54!!!! Children grow up & become independent...
.elderly parents become mean, abusive & more dependent.

Look for ALF for him this week. Hugs 🤗

As you can see you are not alone. I take care of my mother who is 75yre old with dementia. We had some good times mostly bad, but the one thing I could say about her is that no matter how bad things got, that woman could find something positive out of any bad situation. Now she is so negative I want to hang myself from the raffers in the garage.

I didn't have kids and at times I wish I did, other times I am gald I didn't. Who would want to put anyone through this?

I too see other people's parents who planned for their end of life care and become somewhat envy. My father did not plan for his or my mothers. I think his plan was for me to take care of them. My dad is gone and has been for four yrs and I miss him very much.

Taking care of my mother is not commendable it is just what I should do. And I am so mad at the world, my mother, my dad, at this disease I could scream.

I lost 10 yrs due to my own illness and just when I start getting better I have to take care of my mother. Put my life on hold?!

If that isn't enough my BF of 15 yrs is telling me today he feels alone! It breaks my heart that he feels alone and so do I.

I don't think I want to see old age!

If it wasn't for this forum I don't know what I would do. There is a weird comfort knowing you are not the only one going through this. This place has answer a lot of questions & has given me ideas on what I can do to help my situation.

But as my dad would say, "this to shall pass".

Don't base having or not having a child on how you react to your father.
Sorry so long, I just needed to vent

I have vowed to take good care of myself, maintain my preventive medicine, invest in long term care NOW (I’m in my 40s) keep my real estate as long as I can. Because I do NOT have children, and there won’t be a “me” for me, when I reach my mom’s age.

My mom had a plan, and I’m pretty sure it was me, but as she gets older and in her current state, she pretty well resigns herself to “well I know MissusR will do it,” “I know MissusR will be there,” so chores wait, symptoms get denied and ignored until, “I just cant take these symptoms anymore,” and it takes work to get her well again.

I won’t be the kind of person who ages and resigns to circumstance. I know I can’t control everything in the world, but there are a lot of things I can at least try to improve my odds against turning out like what I’m seeing now. I have to.

I take care of my 92 year old Dad and it is really stressful. He has always been mean to me since I was a teenager and continues to do so. He doesn't appreciate the things I do for him and the time I put in for him. But he has taught me something I will use later; I will NEVER be a burden on my kids as he is to me. If I get to be like him, I'll stop living.

I agree with you it’s obscene what people are made to go through. My mother had Alzheimers and took it all the way to the bitter end 17 years in total.
My father had lung cancer and was kept going for months past the time he should have passed. He was just a bag of bones under a blanket sucking on oxygen waiting to die. Literally waiting
my husbands aunt is 92 and has been battling cancer. She has been in hospital more than out over the past year. She is going home tomorrow because she wants to die in her own home.
Why cant the medical profession and families just accept that people die from old age. Not cancer or lung cancer or Alzheimer’s but plain old age.

How my view has changed? Assisted suicide should be made legal in all 50 states, and should be expanded to allow people with dementia to die on their own terms, not when the disease takes them to the bitter, ugly, and inhumane end.

Guess we have to make the best of what we can. Things are changing around - slowly, but they are changing. Look at the last 25 years..

I would have to agree with Polarbear, however, medicine is all about "saving lives", not so much about quality of life. Medicine is science that wants to push the boundaries, the "go beyond the limit," "beat death." "How can we make people live longer?" Who ever said I wanted to live longer?

It is my belief that we all are owed a death, a good death! Not a death that leaves us not knowing who we were or who was our family. Sigh! I will have a good death when my time comes!!!


Just my 2 cents!

After witnessing the amount of general denial about aging and preparing for our "end game" I have learned what I think a "plan" is: that you've saved up for the time when you will transition to a senior community of your choice. I will have all my ducks in a row, even giving my heirlooms to family before I pass so you can experience that moment with them. I have taken a sacred vow to execute my plan BEFORE I "think" I'm ready/need it. This is the only way the plan really works because if/when dementia or cognitive problems invisibly creeps into my life, I may never get to execute my plan, my way (see the movie "Still Alice" starring Julieanne Moore). I have also already told my 3 sons that I don't expect them to sacrifice their lives to care for me and my husband. I happen to have a lot of longevity in my family, a bunch of very hardy Italian-American immigrants. My senior relatives mostly have dodged dementia up until their early 90s (8 kids including my mom, the baby at 90) and they all made it to 90 with all their marbles. But I hold no expectations and I practice not fearing. Mostly, my Christian faith gives me hope beyond my physical end, so it is not final and I don't have to fear the unknown. I believe that God can bring good out of bad, and also gently teach us something while enduring the bad and the suffering. We never stop learning. My purpose for being commenter #410 is to encourage everyone to be realistic and do not romanticize your sunset years -- if fact, plan on worst-case scenarios. And, be brave, have a wise and thorough plan, and execute the plan early. FYI I'm not in any way judging anyone who chooses to care for LOs themselves. You are saints. Blessings to all on this forum!

I realize that I never want to burden my daughters. It’s too big of a job for family members, emotionally or physically.