I would like to hear from those of you who chose not to be a primary caregiver. Explain why you made this decision and why you feel it is the right choice for you.
Please chime in if you did try caregiving in your home or moved into their home and later stopped being a caregiver or if you are a current caregiver and considering making other arrangements for them.
This is not an inquiry about why you are a caregiver in your home. Although, you could start a separate thread for that if you like.
I do understand that in certain situations a person does not have the opportunity at the present time to place their loved one in a facility, even though they may like to.
I realize that some people do not have the resources for an assisted living facility or have not yet applied or in the process of applying for Medicaid for a nursing home. I have also heard that not everyone is even eligible for Medicaid. Some people have to become wards of the state. It can be a time consuming process to prepare for placement.
There are some posters that feel that adult children are solely responsible for being caregivers to their aging loved ones.
So, I think a post that addresses this topic may be of interest to our readers and we can learn from each other’s viewpoints. Hopefully, we will support one another as well.
I certainly respect any and all caregivers, no matter what choices they have made. This post is not meant to upset or offend anyone. Blessings to all of you. 💗
We were taught early in life that we were each responsible for our own financial lives. Our parents' led by example and prepared for their old age.
Thus, when it was clear mom could no longer live alone, we found a good Independent Living facility. After a stroke, she needed Nursing Home level care.
It is not a matter of forgiving them. It is a matter of not forgetting what they did and ever putting myself in the position of being the brunt of it again.
I had a brief in person conversation with my Dad in October. It was enough to trigger me and make me realize that any amount of time spent with him is too much.
My mother is not allowed in my house. When I was going through an incredibly ugly separation and divorce 5.5 years ago, I found out she was going through my mail and possessions, taking things she felt I did not deserve, listening to my answering machine and reporting to my ex what she knew about my finances. There was far more to it. She knew what my ex had left, had a conversation with him about him getting the kids and the house and her supporting him in that before ever thinking to check if I was ok.
I am Mum's POA for everything, but nothing would convince me to provide any degree of hands on care, daily check ins etc.
I am not a bad person, but the way my parents have treated me throughout my life you would think I was a monster. They were pillars of the community, nobody knew what it was like at home.
It’s true that nobody knows what goes on behind closed doors. I don’t blame you for keeping the door closed to your heart. There is no need to reopen wounds.
I’m so sorry these things happened to you. Nobody deserves that kind of treatment or abuse.
There are many reasons why people simply cannot care for their parents. I certainly understand yours!
As always your posts are on point and genuine.
Hopefully, your post doesn't turn into a hate-fest where martyrs come out to tell us why we're 'horrible' and 'wrong' and 'going to hell' for not honoring our parents the way the bible tells us to. Let's hope.
Nobody can walk in anybody else's shoes to feel our 'whys' ......some parents are sweet & kind & easy to care for, while others are the polar opposite. That's 'why', in a nutshell, methinks.
She spent large periods of my youth in bed. I asked her at 10 if she was dying. At 16 I taught myself to cook and spent every day cleaning the house. I was striving for some sense of normalcy.
At least she bought a LTC policy. That will expire in June. She is in AL. I try to advocate as best I can with her health issues. I feel I have done more for her as a daughter than she did as a parent.
She is very overweight which is only exacerbating all her health issues. At times I can feel as though I could lose my mind when thinking about how her health or lack of it will play out. So I have to mentally detach. I still try to get her to doctors she needs to see. I moved up an appointment with the eye doctor at her insistence. Then because she is having chronic back pain she wanted to cancel it. I insisted she go as it is not that easy to get these appointments. There was no change in her eyesight from 6 months ago. I truly feel as though she never knows best. There have been times I wish I was never born but I try to get a positive perspective.
I would guess those were all enough reasons although there are countless more.
I am obviously raising my family. Our house isn’t big enough to bring in another person. My kids would have to switch rooms & my daughter and mom would have to share the bigger room. I have thought about that but it wouldn’t be fair to my kids especially my daughter. Both of my kids play sports and it is quite a time commitment, they have practice 2-4 nights a week and games on the weekend. We would have to give that up.
It would mean putting life on hold and putting my parents first and I will not do that. My husband and children come first. My parents didn’t raise to me think I owe them something. I kind of wish they did because maybe they wouldn’t feel obligated to pay my bum of a brother to help out around the house! He’s lived there 15 years and hasn’t worked but 1 year in his life, they’ve provided full financial support this whole time....and my parents pay him to do things like paint a room and fix the fence! So yes I do not feel I owe it to my parents. They raised me to self efficient and they have always said they don’t want to be a burden. They have never once said their children owe them, never thrown it in our faces all the things they did for us and how they raised us.
I also don’t have the patience for it. I will never deny that. I just don’t. It’s not in my blood. I don’t like repeating myself. I’m always in a hurry. And I need my space! I could not bring one or both of them here. After about 2 days of company, I’ve had enough and I need my space and I need my regular routine. So I could not handle having my parents here full time. Not gonna happen.
If they lived near by, I would absolutely help them. I would have no problem running errands, cleaning the house and making dinner once or twice a week. I wish they did live nearby so I could help them and not throw it in their faces the way my brother does.
And I couldn't imagine living in a house where the temp would be at 82 degrees year round. I prefer the temps to be one step away from snow. Who wants to live in a hot flash 24 hours a day.
Oh I helped with the logistical things that needed to be done, and that in itself was stressful enough. I wanted to scream if I saw one more doctor's waiting room or fill out another set of paperwork. I hated driving my parent's car [yes, it was my father's Oldsmobile], it got to a point of major panic attacks which I still have years later.
My parents never needed to care for their own parents as they lived far away. Thus, my folks had zero idea how tough it was. My Dad's parent's had my Dad's brothers, their wives, and a gaggle of driving age children. Big difference when there are 15 people helping vs just me.
Great responses!
Most of you know that I did try caring for my mom in my home. It wasn’t the right solution for me. I had to find out the hard way. Siblings can complicate matters as well. So, if I can spare others from reliving my pain I feel like it is worth a discussion.
This discussion also helps me to realize that I am not alone in how I feel. I thank all of you so very much. You have helped me more than you know. Hugs! 💗
It’s hard when people don’t have the same internal body temp. I am like you. I get chilly too! I love to warm up my feet on my husband’s calves while in bed. His body is always so warm. Good thing he loves me because I have warmed my feet up on him for 41 years! Hahaha
MIL and her daughter (daughter lives 1K miles away) .. are very close, talk on the phone generally at least once a day if not more usually. And the daughter's requests, some of them ill conceived, a lot of them, and not realistic .. were flying in and landing in my lap to step to, routinely and arguments as to the validity of same, went unheeded. It's a no brainer.
The daughter can't/won't move here, and the mother wouldn't move there for her daughter to care for her. It's a no brainer.
Not wanting to spend the next decade or more of my life, in service to the situation . that and I want a life of my own to direct as to how I see fit .. I'm just not that selfless.
That and also a lesser factor, but nonetheless a real one. We are the only local offspring to what would also be my dad and my mother .. and I didn't want to set the precedent .. this is what one can look forward to ... Dorker will step in and take you in .. and take care of you.
And my life for the next 20 years or so, be that of a c'taker.
(I deleted like 3 paragraphs describing the dumpster fire of trying to care for my in-laws. Just TMI.)
Anyhoo, I could basically see the in-law trainwreck coming and it WAS going to land in our laps no matter what. My 1 BIL and his family also lived nearby and he is a nice guy but only does things when you ask him - not proactive and pretty clueless as to actually solving problems. The other BIL lived in AZ and sent money unsolicited. Then there were 2 stepbrothers who lived out of state, but because their dad (my SFIL) was such a d-bag to them their whole lives, they weren't interested in helping but gave us permission to do whatever it took. SFIL never gave anyone PoA even after I made it clear I would allow the county to take guardianship over him and that he'd have no control after that. I guess he didn't believe me.
Since we ran our own business I had the ability to work on personal things during the weekday (read: calling social services, doctors, etc). I worked on caring for and eventually placing my in-laws for a solid 1-5 years almost non-stop while trying to do my job and raise my kids. I said I was "lucky" and this is because the family gave me carte blanche to make decisions and do things without resistance or questioning even though I was not my MIL's PoA (my husband and local BIL were). Every day I sent out emails and texts to the family (including the step brothers) so that EVERYONE knew what was going on, the effort, the decisions, the costs, EVERYTHING so that NO ONE could ever say, "I didn't know..." Every day that I did the smallest thing, they were notified.
The adventures with my in-laws taught me (the hard way) about aging, dementia, Parkinsons, how to take the cars away, dealing with social services, guardianship, nursing homes and what it looks like when people do not prepare realistically for their decline and exit. It taught me that in no way was I interested in hands-on caregiving for aging parents. That's why I love this forum, as imperfect as it is. If people find it at the right time, it's an enormous help and blessing to others.
She detests all women.
I am not clinically trained.
I have no interest in giving up my life to serve others.
She has the funds to pay for A/L and that is where she is. As is my step father & his wife. Do a lot of running around for them as it is now.
I have paid my dues, taking care of my husband, aiding my father & cousin, I am
done.
As the daughter who did everything for her parents, I found I was not a caregiver. I didn't like having to be there for someone 24/7. Actually, Worried's response is how I felt. I don't have kids at home but I was in my mid 60s caring for a 20 month old grandson who I had since he was 2 months old. And he was going to Nursery school in a few months. Freedom back! Nope, I needed to take Mom in. I didn't want to do this. I have no patience. I didn't like the person I had become but just could not be "up" about the situation. My house is a split level and just not conducive to caring for someone who can't do stairs. I literally had to gate Mom in at night so she couldn't wander the house.
NeedhelpwithMom wrote my sentiments exactly. I was the oldest and the daughter. I feel that all I have done was care for somebody. I gave up working for 3 years in my mid 40s because my teen daughter had a baby at 16 so I cared for him. He was a preemie. I had my youngest at 35 so I was still raising one of my own. Oldest finished high school and went on to be an LPN and RN. She has done very well. Then my nephew. This is an ongoing thing. I hate the thought that I will be overseeing him for the rest of my life. Working on that. Then I babysat my other grandson (same mother), then Mom. Now my oldest grandson has epilepsy and can't drive so we drive him because his Mom has to work and schedules are not the same. I just want my life back where I don't have to worry about anyone but me and my husband. That when we make a decision to move or downsize that I don't have to think, "but what about nephew and grandson?" I have had to give up doing things with friends because I was caring for someone. Then there is my youngest brother. Now divorced and retired doing his own thing. My other one did raise my nephew, believe me he wasn't easy, and now dealing with a MIL who spends her money on scams. Its a horror show for my SIL and its effecting her health.
So, it comes to, what can you as a person deal with. What are you willing to sacrifice. Because once u taking caregiving on, its really hard to get out of it.
My mother had said for years that she couldn't live with me. I think she thought she was being hurtful. Did she not realize that there was no way I would ever have her live in my home?
In Oct 2018, she was hospitalized for 17 days, then rehab, then LTC in a SNF. Prior to the hospitalization, she lived by herself (I was the "Dummy Daughter Driver"). She had someone in to clean once a month. She refused any other paid help (she needed someone to help her with showering).
As I've written on here before, it was very difficult for me for just the ~6 hours/week I had to take her places. She and I didn't get along, and she made sure I knew how my time wasn't worth anything, how I had "something wrong in the head," etc. Society expects us to put up, shut up and offer it up. I refused.
I went to see her as little as possible when she entered the NH. Of course, I was called a lot by the facility. Only a few times did I actually make it to the 1x/week visit.
I can't understand how anyone would live with an elderly parent who needs caregiving. But then some people must have had a very different relationship with their parents. I would never put my husband through it!
His mother is still alive and refusing to leave her 2-story (plus basement) nightmare of an old house. He is one of 2 sibs not living in the same area as their mother (3 do live local to MIL). One of the daughters would expect only the best for her mother, and I can foresee her expecting the other sibs to chip in to hire help for her mother. We will not contribute to that. MIL got an unexpected inheritance, and blew much of it in travel. She made her choices!
Some of us did caregiving much longer than we should have, until we broke. Others recognized earlier on that it wasn’t working and wisely nipped it in the bud before it got too far out of hand. I wish I had done that!
I continue to be impressed with how all of you express how this has effected your lives. I am grateful to all of you for sharing because as I said before it helps me to know that others were in the same boat.
Some of us were drowning, sinking fast and struggling to keep afloat but in the end survived.
Some caregivers are so young and caring for parents, grandparents, aunts, uncles, cousins, friends...I’ve read many different circumstances of this site.
Personally, I feel like kids who are forced to help care for their parents is the absolute worst. It seems like a form of child abuse to me.
There was a young woman from COA that came to my house that told me she cared for her dad since she was 6 years old! Her mom made her help. Poor kid having her childhood robbed from her like that.
Some caregivers are older themselves with health issues of their own. Think of the caregivers who developed health issues due to the enormous stress of caregiving and some have even died. That is truly heartbreaking.
Your transparency has made me feel safe sharing my heartbreaking moments because I know you have walked in my shoes. I am so very proud of all of you for helping others. It has encouraged me to do whatever I can to help.
I am very glad that I learned of this forum through a social worker, especially when I was a shut in caregiver but equally important dealing with the aftermath emotions. There is joy in feeling gratitude. It lifts my soul.
When I felt resentment for being bogged down in my full time caregiving days, it totally drained me both emotionally and physically. I had severe bouts of depression and anxiety. I truly feel like the weight of the world has been lifted off of my shoulders.
You know, I feel many of could write a book on the topic of caregiving, right? For those of us who have chosen not to be in the middle of the chaos any longer or perhaps never started caregiving in their home to begin with, I lift my glass in celebration 🍾🥂🍻🥃🍹🍷🍺🍸.
We tried to manage as best we could with mom living with us, but her paranoia was so bad that she couldn't sleep, and I would be up half the night with her and up early every morning to check her blood sugar and give her insulin, feed her breakfast, etc. I also have children at home. It got to the point where I was hardly sleeping, barely eating, and was on the verge of a meltdown before I was finally able to realize that we needed to do something different, and started researching care facilities.
We found a good facility and ended up moving her there, where she lived until she passed early last year. Having a team of caregivers rather than trying to go it alone made a world of difference and I think was the best decision for both myself and mom. After a certain point it gets to be just too much for one person.
Know what you mean about not being able to sleep and eat. Happened to me too. Plus I am like JoAnn, really sensitive to smells so the toileting issues and diapers really got to me and I lost my appetite.
When my mom was in the hospital 2 weeks ago, I was seriously contemplating bringing her down here if the doctor said she would live longer and have a good quality of life. It would mean sharing a room with my daughter. Only way it work is if the kids switched rooms because my daughter has the small office sized room and my son has a large room. My husband would agree to it no problem. But it it isn’t going to happen. My daughter is at a difficult age and needs her space. She doesn’t want much to do with her parents or grandparents these days. Having to share a room with her grandma would be very detrimental I think and I have to put my daughters well-being first. And I truly believe that it’s because of all of you that I have this understanding. A few years ago, it would not have occurred to me how something like this would affect the entire family and all the sacrifices we would make. And I know that it would affect my relationship with my mom. I love her and love spending time with her but I need my space. For the last 20 years, I have had “me time” at night because up until 2 years ago, my husband has always worked nights. I have always had the luxury of having a few hours at night to veg out in front of the TV or take a 2 hour bath or just do whatever I want. He’s on day shift now but goes to bed at 9:30. Kids are in bed at 8:30 and 9:30 and once they all in bed, it’s my time. It’s been this way for 20 years and I do not do well when my routine is interrupted for more than 2 days. My
mom doesn’t go to bed until at least 11pm so she would be out in the
living room with me and I know I would get annoyed by and be resentful.
I also know, thanks to this site, that my moms health will not get better. It is all downhill from here. So while she doesn’t need hands on caregiving, she can do all her ADLs, it won’t always be that way. She does need help with some things because her hands are weak and she has mobility issues & uses an electric scooter so we’d have to deal with loading the scooter up and getting it out and going to get the car & drive it up to where she is. We’d be dealing with making sure the battery is always charged plus having enough batteries for the oxygen tank and honestly it gets tiring. It is a lot of work. I know I would become resentful over all the time and effort it takes. And because of her breathing and mobility, we wouldn’t be able to take her everywhere with us, she would have to stay home and I would feel bad about that and she would too although I know that she would prefer to stay home a lot of the time but I know she would still feel bad not going with us. And obviously she’s going to continue to decline and no doubt I would be up late, up early, always worrying, caring for her would take over my life and neither of us want that.
I’ve never been able to understand why some people are willing to sacrifice so much for parents who have already lived a long life & got to enjoy retirement & be grandparents. It just doesn’t seem fair to be and I can’t make sense of it. I understand that there are people who, for a variety of reasons, feel obligated or who were groomed a certain way. And some people honestly believe they have no choice.
It just really isn’t fair to put your life on hold and sacrifice years of retirement and miss out on a lot of things with your children and grandchildren, so that your parents don’t have to go in to a nursing home.
i look at my parents and.....yes at 71 they are in worse shape then some who are 91. But they have lived long lives, they both retired early, I think both were 55. They had the same jobs for 30 years, they got to raise their kids without dealing with aging parents. They were empty nesters for a few years when my brother was incarcerated. They did take care of my grandma (dads foster mom) for 2-3 years before it became too much and she went to AL. Since then, they have gotten to travel and live the retired live even if they are in poor health. So I can’t find any good reason why anyone would miss the chance to take family vacations, miss their children’s sporting events and other activities, or miss spending time with their grandchildren and making memories.....because they are taking care of someone who got to do all of that already.i don’t think it will ever make sense to me. I can understand making some sacrifices but too many people are giving it all up and for what? We all deserve to live our own lives.