I feel guilty because I have it so much easier than many. However, I am becoming bitter after almost two years with no end in sight. My dad begged me to help in keeping him and my mom aging in place - they were both 89 at the time, in a home/property too large for them to manage any longer. I reacted emotionally and quit my job, sold my beloved home and moved 150 miles to live on their property in a trailer I purchased and help with property upkeep, transportation to appts, health management, meals and such. I miss my friends, I miss my lovely little home, I miss working outside the home, I miss autonomy but I do not know how to extricate myself from this situation because NOW whatever decision I make directly affects my parents and I do not want a rift as my 91 yo parents approach their final years. I'm 60 and I thought at this point I would work part-time, travel a bit, visit friends, enjoy semi-retirement. My dad retired completely at age 55! I'm furious with myself that I didn't make this decision rationally, but jumped to "help" when asked. The parents truly appreciate me, yet don't understand what I've given up. I guess this is more of a pity party for myself, but I would like to hear how others have transitioned out of the caregiver role.

"Mom, Dad, I'm getting older. I am now officially a senior citizen and I find that I can't keep up physically with all of the needs that you folks have. I understand that you both want to stay in your home, but I can no longer be the sole facilitator of all that that decision entails. I can help you find help, but I need to go back to work so that I can retire some day. Let's figure out what your most pressing needs are and how to get them met without my being here every day."
Helpful Answer (21)
Reply to BarbBrooklyn
DILKimba Jun 11, 2021
SO MUCH THIS!!! Short. Sweet. To the point. The only thing I would add is have a list of possible things they could do instead.
I am so sorry that you are in this situation. First of all, many of us have reacted with our hearts to our family situations. It’s an awkward and emotional time. Please understand that you aren’t alone in making a decision that you now regret. We live and learn.

I would have an honest discussion with your family explaining how you feel. They may not agree with you. They may feel as if you owe them your life. They may not feel that you sacrificed for them. They are wrong.

Your decision is not written in stone. You can reverse this decision.

Choose an exit date. Start looking for employment again in the location of your choice. Tell your family that you will help them find other sources of care. Discuss all options or better still have a social worker tell them their options. Then you aren’t in the position of being the bad guy. You can be present at the meeting if you like.

Do you have permission to speak to their doctor or hospital for a contact number or email for a social worker? A social worker frequently deals with these situations.

If you continue to stay, you will become more resentful about the situation. You deserve a life of your own. Your family will adapt.

Best wishes to you and your family.
Helpful Answer (20)
Reply to NeedHelpWithMom

Firstly you are completely justified to have these thoughts & feelings.

Let's get rid of guilt here. Others may have it harder, easier, different, whatever. We all have our personal experiences. No need to compare.

I did similar. Stepped in to help. More of a 'living in place' than an 'aging in place' tho. Had my job, stayed in my home but still - felt like I was losing my own life.. my life was in orbit around someone else's needs. At beck & call. With no end date. Lost sight of my own plans. So maybe I get it (even if just a little bit).

I Stepped in. Then I had to decide to step back. When I did, I gave lots of notice, helped find replacements but mostly the change was me.

I had to 'get' that my responsibility was to my own life. To keep earning, head towards my own goals.

To age in place, the responsibility actually lies with your folks to arrange the care they need.

Your care was wonderful & generous. It was a gift. Maybe your gift could change going forward?

Myself, now? I am happy to gift my time to advocate & help find resources instead of doing the hands-on care.

Time for a good honest chat with the folks. "Love you. But need a new plan going forward. Basically, hire some folk. I need to go home, to my own home. But I'll still visit".
Helpful Answer (14)
Reply to Beatty

I will address your question, but some background is helpful, and my situation is not quite the same as yours. I'm 57 y/o, only child, single, no children. I have been my 80 y/o mom's caregiver since last October. I have my apartment, and she lives in her home, which is about a 25-minute drive away. I do not own a car, and I work. She was diagnosed with dementia a few months ago. She has multiple underlying medical conditions. She also suffers from anxiety, depression, and anxiety about taking her medications. Since October there have been 3 ER visits, 2 urgent care visits, a hospitalization, weekly doctor's appointments, and multiple phone calls from her, even in the middle of the night. I have been her chauffeur, secretary, admin, therapist, personal shopper, handyman, gofer, etc. I handle her medication management (she takes, 6, soon-to-be 7, meds a day, and I sort the AM, afternoon, and PM meds for her), talk to the pharmacists, MDs, Medicare, BCBS, EVERYONE on her behalf. I handle her bill payments (writing checks, stamp the envelopes, mail). She refused my offer a few months ago to set all this up with auto-pay. This role is very time-consuming, demanding, stressful, and overwhelming. It is never-ending.

Also, my mom and I do not have a good relationship. We never have. She was a cold, mean, emotionally abusive mother. Now, as a senior, my mom is demanding, negative, difficult, and complains constantly. Despite our strained relationship, as a Christian, to "honor" my mother, I assist her. She often says how thankful she is that I'm her daughter and takes such good care of her. I feel resentful and manipulated.

To respond to your question about how others have extricated themselves from this role, I know I need to take a step back. Caring for her has taken over my life, and I'm no longer focused on my goals. I am consumed with stress and distraction due to her needs. I remind myself that my mom lived a full life. I do not owe her my life. This is what I have done:

-I've retained an agency for her escort and transportation services, for all of her appointments. That is a load off of me, and less time I have to spend with her.

-I limit the phone calls I place to her to one a day; a check-in call at 7:00 am in the morning. Any updates of anything I have to inform her of, I do so in that call.

-I set boundaries. I remind her I'm working, to limit the calls she places to me during the day. She has not stopped completely, but she does not call as frequently.

-I limit my visits to her to once a week. Any/everything I have to do for her at her house, or errands, I take care of during that visit.

-If you can control or operate any device in her home remotely, do so, so you do not have to deal with it. My explanations frustrate her, and she's lost the ability to grasp certain things. For instance, she's fixated on the thermostat and has anxiety about how to operate it. She calls me to tell her where to set the target temperature, despite me telling her she decides. It is a dial thermostat (I have removed the smart features), and not hard to operate. To save my sanity, I will set the target temperature and lock it.

-I have her groceries delivered to her. I order items frequently from Amazon and have those delivered to her.

-There are further steps I have to take to transition. I see her cognitive decline. It will only get worse. I have to get my ducks in a row, with POAs, before her decline is so advanced she will be deemed incompetent. I will meet soon with an Elder Law attorney. I can see necessary placement in MC in her future. If it is not affordable, in-home care (which she refused a few months ago, but with the proper POA, or legal guardianship, the decision will not be hers to make).

I feel ill-equipped to continue this caregiver role, (I am not a nurse, social worker, or professionally trained with dealing with dementia patients) and I do not want to continue in this capacity. I want my life back.
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Reply to Naimka

These responses have been overwhelmingly helpful for me. Thank you all for the support and solutions. From these comments, I am coming to understand that making decisions and taking actions about my own life does NOT mean that I care for my parents any less. I am moving forward with speaking to my parents to let them know I love them dearly and deeply but we need to make other arrangements. Thank you all very much.
Helpful Answer (12)
Reply to Shickey99
Naimka Jun 11, 2021
I forgot to mention that I also have the pharmacy deliver her meds to her home. No more trips to Walgreens and standing in line to get her meds, then taking the meds to her. I pay a few bucks to have same-day delivery by courier (my payment card is on file with them), or no-fee shipment in about 3 days. It is worth it. My time is valuable.

And, the fee for the escort/transportation service is $25/hour. Also, well worth it, considering the many hours driving to/ from her house, taking her to her appointments, sitting with her, (and ignoring her constant complaining the whole time), and the cost of a ZipCar (I don't own a car, and public transportation is too slow).
You don't have it easy. In fact, you have one of the harder issues. You gave up your life and livelihood to accommodate their unreasonable expectation of living out their golden years in their own home at the expense of your life.
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Reply to lkdrymom
sp19690 Jun 9, 2021
Eexactly. Are these elderly parents this selfish? It seems like it.
There's nothing "easy" about what you've done or are doing. Giving up your home, life, job, friends, and life plans. That's not easy.
Perhaps it's time to have a serious talk with mom and dad, and let them know that you're not getting any younger, and that you now feel it's time for you to get your life back. Will that be hard? Of course it will, as it's very obvious how much you love your parents. However, it's now time that you love yourself just as much, as none of us are guaranteed tomorrow. The last thing you want to happen is to get to the end of your life and look back with lots of regrets.
I pray that God will give you wisdom and discernment as you go forward.
Helpful Answer (9)
Reply to funkygrandma59
lkdrymom Jun 11, 2021
The sad part is no matter how old the OP is they are still younger than their parents and their parents will only see that. I remember my grandmother yelling at my 65 year old father "Just wait until YOU get old". He replies "I AM OLD". But she was older so that was all that counted.
I understand the concept you have that you have it easier than some others (some dementias are really nasty and some people are really nasty without dementia!) But, it is still a lot you have sacrificed to "allow" them to "age in place." They are NOT living independently if they need you to do all those tasks. Keep in mind also that those tasks are going to increase with time, doubly so because you are dealing with TWO parents. One person cannot provide the proper care for two people as their needs increase, AND all the other tasks you are currently shouldering.

I hope to stay in my own place as long as possible, but if/when I need help to do that, I will HIRE help. It is NOT my kids' duty to do that for me.

My parents had a glorious retirement: wintering in FL condo, cruises, traveling here there and everywhere, get togethers with remaining siblings and friends and so on. They had sold their house on retiring and moved to a condo, so a lot of the "usual" house duties are reduced (any exterior work on bldg, yard work, etc.) Probably got a good 20 years of fun in before dad's decline. Mom lived 8 years more in the condo, doing her thing, still going on trips to FL, etc before dementia came along. Then she was in MC for 4 years.

My involvement began when dementia was noted (had to learn quick!!!) At about the same time, I was laid off work, so I tried helping her. The 3 hr round trip was a killer! Managing her finances wasn't hard, once I had all bills sent to me. Keeping her in groceries and supplies was a tough job, as she was relying on microwave dinners, but wouldn't buy enough for even a week, never mind 2 weeks! I tried the delivery service once, but she was hard of hearing and those frozen items wouldn't do well being left outside! It would save me the shopping time, but I'd still have to be there when it was delivered.

It all became more difficult after we moved her. It took me 2.75 years to get her place cleared, cleaned and repaired so we could sell it. Very little help from 2 bros. They pretty much disappeared into the woodwork. Even when it was sold, it's still a lot of work to manage everything, balance accounts (2 bank accts and trust fund), calculate/order/deliver supplies not provided, handle calls from facility, doctors, find hearing aid place, etc. SIX years of my "retirement" down the drain. I'm not into cruises, don't need to travel and dislike FL, so I'm not missing any of that, but I couldn't really plan to do the things I wanted to do. The few times I did try to do something, there'd be a call about something. Meanwhile, the house I bought that needs a lot of renovations was put on hold (initially due to finances, but having to juggle everything for mom cut into time I could try to arrange work.) Lived with a 3/4 bath gutted except for a toilet for several years (off master bedroom), the other NEEDS to be gutted and redone! I'm hoping to get this done, if I can find people to do the work before I'm too old and/or decrepit to enjoy it!

Obviously you can't undo what you've done (sold house, quit job, moved) but I would at the very least start talking to them about hiring people to do the needed work (upkeep of house, yard, cleaning, laundry, etc.) You can perhaps assure them that you will be there if they need something, but the manual labor jobs should be hired out and THEY should be paying for it. If possible, take some time to meet up with old friends. Use other freed up time to meet new people, and/or find a part-time job.

If they balk at this, explain:
1) you are single, one income for retirement, which will be reduced due to early "retirement" - you can check on the SS site what your estimated benefit will be.
2) you are getting older, so these "tasks" are taking a toll on you physically.
3) remind dad he :retired: at 55, yet YOU are expected to WORK for them!
4) remind them how much fun they were having for the last 30 years in retirement, yet you are not allowed ANY retirement even at 60!
Helpful Answer (8)
Reply to disgustedtoo
Beatty Jun 10, 2021
I read about a couple that bought land in a beautiful location to build their retirement dream home. The idea being to enjoy it while they were young retirees & could enjoy the beach, bush walks, run some animals etc.

They kept putting off the build while they helped her Mother 'age in place' & then kept her well visited in AL. She was 99 before they knew it & they wrote of finding their own health issues were creeping in & that their bushland dream window may be closing fast, or have already closed.
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This is hard! I just met a lady that left her home/job to care for an aging parent for 2 years. She had no income. She said at the time… she thought she was doing the right thing… but realizes that this affected a lot of things financially and emotionally. She is now stuck in a town without friends and had to take a very low wage job to just to make ends meet. Her situation really impacted me. Jumping in to do what we think is the “right thing” can have many unforeseen implications.
Helpful Answer (8)
Reply to Sunnydayze

My mom was calling my brother weekly begging him to take her out of a nursing home. He did and she moved in with me. Yes, I definitely jumped and thought I was helping... she was so miserable and it was hard to watch.

Now, a whopping 5 weeks later, her mental and emotional health is better, but mine is not. I am 50 and my husband and I *were* official empty nesters last year. We just got to the point where we could come and go as we please (no one at home, I mean).

I have re-arranged my home and life to accommodate a wheelchair, bedside commode, etc. Mom gets aggravated when I insist she do some things on her own, within reason, of course, but she honestly treats me like a maid (and I love her dearly). I hear my name all the time.

I have hired help to start next month so I can continue teaching. I honestly feel like I'm just running out the clock and she will probably end up with my brother and then back to a nursing home.

So, yes. I jumped and if I could go back, I would not have made the choices I did. I feel selfish and guilty, but I also feel that for my own mental health, the current course cannot continue.

Best of luck in your situation. I hope you find some help. It's hard when you feel you are missing out on so much. I'm sure you are worn out.

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Reply to New2This2021

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