I have it easy, but...How have others 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."

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.

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".

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.

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.

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.

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.

I don’t see how you have it “easy.”

My parents did not move in with mom’s parents when they needed more extreme help. Mom’s parents went to a nursing home. Dad’s went to an apartment when the farm got to be too much to even live on, then to a nursing home. My parents never considered moving to either of their parents’ homes at the sacrifice of their own, nor to move their parents in to their house (that would have been a disaster). My parents helped, certainly, and quite a lot, but never to the extreme of giving up their own established lives, jobs, homes, retirements, and futures. Their parents did not expect that of them, and would not have asked it of them.

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!

Been caregiving for my mom for 10 yrs now. She got me at the worst possible time in my life when I was most vulnerable. We just lost my dad and my sister. She was living 350 miles away, and I helped move her a few doors down from us when she sold their house. She had very poor eyesight at the time and needed someone to take her around and her eyesight only got worse. She was 85 yrs old when she moved here and now she’s 95. Now she has metastatic breast cancer in both breasts and a litany of other health problems. If I had my senses about me at that time after losing 2 family members, I would have arranged different living arrangements in Assisted Living close to my house. She did NOT need a house of her own that we take care of! She is at the end of her journey now, on hospice, but it’s been a long 10 yrs for me. I have given up a lot and that includes my health. I have stage 3b NHL and I’ve been treating for 4 1/2 yrs now. Please consider what the ramifications are when being good-hearted in assisting a loved one for the rest of their time on earth. It may be a long journey and one with seemingly endless acts of giving. I have spent my entire retirement caring for her. I started at age 60 and I’m going to be 70 soon. This last part of her journey is not easy. This is the suffering part and it’s not going to be easy for either one of us. Hospice is wonderful. But most of the caretaking still falls on me. I am so tired.....