I have it easy, but...How have others transitioned out of the caregiver role?

I commend you for doing all you have done. I've done it for a year n thank God my mom lived up the road from me but one day she fell n broke 5 ribs n on top of that her knee gave out n couldn't walk. I let her stay in rehab n she will till she swaps to long term. It was to hard for me n I know I don't want to do it anymore. My siblings all understand as they don't want to move n take care of her. I'm legally blind n have my own issues so this is the way I transitioned out

I am in the same position, and I can definitely relate. I’m glad you are finding your way out. Although I wasn’t asked, I saw that my mom and stepdad needed help. She has multiple myeloma and was struggling with infections and kidney problems. My stepdad has very early dementia and other health issues. I retired five years ago and was traveling and staying in spiritual communities. Seeing the need, I left that life three years ago and came to a rural area on the east coast to stay with the folks and help them out. Since that time my mom has broken her hip and suffered a mild stroke, but is able to get around the house without assistance. I am pretty much chief cook, “bottle washer (I do the cleaning), chauffeur, secretary, gardener, secretary, personal assistant, and medical interpreter. They refuse to seek outside help.
While I had somewhat come to peace with putting my life on a shelf for a while to take care of them, a recent medical issue brought some clarity. I will need shoulder surgery in the next few months, and it became obvious that my mother would be unwilling for a friend of mine to stay with us to help me (and them) after the surgery. I have realized that I’m not getting any younger (I’m 55), and I need to take care of myself as a priority.
My first step will be staying with some friends after the surgery, to get the help I will need, and to give the folks a trial run of what it will be like without help.
After that, we’ll see what happens, but I look forward to seeing how your separation works out.

Anyone who tells you that you have it “easy” is not worth listening to, and that includes your own inner critic!

I’ve got to the stage where I look at the language on posts like this. For example “when I thought about the sacrifice my mother made”. What sacrifice? Having a baby that she wanted to have? Or “your mother bought you here”. How much did you cost? Was the ‘sacrifice’ that you were too expensive? (OK I’ll admit that last one is a bit snotty)

And “I promise you that if you hang in there you'll be at peace and you'll be glad that you did without regrets”. How are you going to live up to that promise, Benton? What are you going to do if it doesn’t work out? What will you say to God about that?

Lastly “You have the right to have your opinion and I'm not judging you either. But I would never turn my back on the one who loved me enough to keep me”. This isn’t even a ‘therapeutic lie’. It’s blindingly obvious that you ARE judging and condemning someone who doesn’t go along with your ideas of right and wrong.

Moonboots to you, Benton!

Hello,
Myself and my brother was caregiver for our. My mother lived with me so I became the primary caregiver. I would say that it has to be in your heart. Not one time did I question myself for the position that God allowed me to be. I went through caregivers anxiety because it was new. But when I thought about the sacrifice my mother made and the smile she had on her face when she saw me was priceless. I refused to put her in a nursing home. She would sometimes tell me how thankful she was for me taking care of her. Everyone is different. I don't comprehend your question or reasoning.

I feel as though you're not saying it but you've loss your freedom and that means more to you than caring for your mother. I get it I didn't have a casual life of my own either. But the JOY I felt caring for my mother. And I would do it a thousand times again. I have no regrets!

Your mother bought you here. I don't understand. It's sad and I feel sorry for your mother because I know she feels it and terrified as to what's going to happen to her. You have the right to have your opinion and I'm not judging you either. But I would never turn my back on the one who loved me enough to keep me. God will bless you! Honor thy mother and father! That means through sickness too not just in good health.

Call Social Service for direction as well as her insurance coordinator. Their job is to ASSIST you in getting the help and equipment that she needs. Also A Place for Mom. I Know it's scary but I promise you that if you hang in there you'll be at peace and you'll be glad that you did without regrets.

Good luck to you.

You are such an angel to do what you did for your parents. But I do think that you need to think it over a little more now. Can you talk to your elderly parents and explain how you are feeling? I am sure that your parents are so grateful that you are there to help them but what about your life and needs. I hope you make the changes that are right for you and your dear parents.

They died and now I’m free.
I’m not a quitter, I’m a person of my word.
One day, all of us will need care~
#GoldenRule

As described by several others, you can transition from doing all the hands-on care-taking of parents and property to helping arrange hired help. If your parents have the financial resources to do so, they might be able to stay in their home for virtually the rest of their lives.

If they lack resources, they will need to make other decisions about where to live. You love them and can help them make these arrangements, but you do not need to do everything yourself.

Accept that it will likely take some time to find the right people, especially for personal or live-in care, and there may be a few "misses," but eventually you may find just the right kind of person to take over for you.

Ask around at churches about people known to them who might be looking for long term living situations and a modest salary in exchange for doing the things you are doing now. If more intense personal or medical care is needed, appropriate help will need to be hired for that care

You should talk to them about it and try to come up with a solution.
Maybe they could get a Live In?
Maybe they could just hire a Caregiver to come a few hrs a day?
Maybe you could check out a Senior Apartment they can both live in together?
Prayers

Shickey99: I did see your update of 8 hours ago. I am glad that you are making other arrangements. So even though it may be a moot point that you'd quit your job, et al perhaps you can find other employment. Take care of yourself, while, at the same time, loving your parents.

I can understand that your main issue now is ‘how to extricate myself from this situation’ without upsetting your parents, who thought that everything was going nicely.

My suggestion is to develop a crisis rather than waiting for one to happen. The crisis forces you to stop what you are doing, and forces everyone involved into realising that the future needs a different approach. At age 91 plus that’s true anyway – you can’t care for two aging parents, a large house and a property for the next 10 years. Propping things up with in-home carers is just postponing the inevitable for them, and solving nothing for you.

How to develop a crisis? Lots of ideas, mostly medical. My first idea is to find a ‘moon boot’, and say you’ve broken your ankle. The doctor says you have to stay off it as much as you can for 3 months, and it will never be strong enough to continue doing the jobs that are required now – let alone in the future. Those moon boots look very convincing!

Your 'emergency' needs to get you some sympathy, provide a good reason for starting again, and stop you being blamed for changing your mind.

I can relate with you completely. The past several years have little by little become completely revolved around my parents. I went from every 2 weeks, to every week to every other day. I did not give up my home although they wanted me to sell my home and move in with them. I might add that they have absolutely no room for me or my belongings. So I travel 45 minutes to their home from mine. I have lost touch with many friends and my hobbies have taken a back seat. It's hard to start a project with just one day in between each visit to my parents. They too don't see or understand all that I have given up to be there to do all their chores. I have tried to get outside help but my mom with dementia refuses. I actually wrote to this forum myself at the end of my rope. I finally had an agency come out and they agreed to hire them for one day a week. I was ecstatic!! That lasted for one visit. I planned on being there for the first few visits until they were comfortable with the "outside help" But my mom insisted that she could only come out when I am there and no other time. That completely defeated the whole point of having someone there when I wasn't. I finally let them know that I could only come twice a week from that time forward. A lot of responses I received were letting me know that my constant help was enabling them and not letting them see that they do need help. It has only been the second week now and I have a lot to do when I am there.
Thankfully you have your own space. Is home care something that they would go along with? If so I would certainly try that first. Cut back on the things you do for them. Once home care is in place, is it possible to move back to where your life and friends are? My parents are also late 80's and 90. I am 63 and completely worn out. Maybe a caretaker could live on the property where you are at now. Regardless of the advanced age of our parents, I too see no light at the end of the tunnel. This could still go on for year's to come.
My thoughts are certainly with you as I know exactly what you are going through. Good luck with whatever you may be able to set up so you can get your life back!!!!!

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.

This is a sad situation and it is why I keep preaching over and over again that every adult must have in place certain wishes and requirements made known to everyone involved. It all sounds so wonderful to jump in and offer help but no one ever thinks of down the road and what could yet come - then it is too late. Or guilt steps in. Anyone - before you make promises and commitments, do your research and think out of the box as to how you would handle different situations if they arise. Not every promise can be kept - often out of very logical, valid reasons. You made a bad mistake and you are paying for it dearly. You realize you must not and cannot continue this mode of living your life - it will cause deep resentment, bitterness, and problems for you - don't let that happen. Sit them down and try to make them understand the effect on you. Set new boundaries and you stick to them. Perhaps you can hire a caretaker or better yet, they could both be placed into a suitable facility together. If money is rough, there is help but it requires researching and time - but it can be done. Do not continue - live YOUR life NOW before it is too late. They had their turn. Now it is yours.

It's very hard to get out of believe me! I gave up everything when my mother moved in with me over 5 years ago. It wasn't my choice but she had been at my sister's house and then my sister died so she automatically came to me. I should now be enjoying retirement and having fun but I am trapped in a situation I can't get out of yet. I have said that I will carry on until I am almost 66 next April and then things must change. It won't be an easy transition but has to be done for my own wellbeing physically and mentally. Good luck.

I understand. My dad went to live with my brother last year and he asked for my help. I left my job and home to live with his family and help care for dad for 6 months then contracted coronavirus on a visit home to my own family. At that time I decided to move back home being so weak myself and having health issues after corona. I think he may resent my moving back home as that leaves more for him and his wife to figure out care for dad but I didn't feel like I could live with my brother forever and give up my family life completely for any longer. It's hard though. I'd like to go visit and relieve them sometimes and understand this is hard for them as well. I plan on visiting soon for a weekend but my brother doesn't think my dad is even able to travel to his home again to visit and doesn't seem to want dad to leave his home at all. I think he'd like dad to forget he ever lived anywhere else. I wouldn't mind caring for dad in his home for a few weeks at a time to give them a break but I don't think my brother wants that either as it would be harder for him. It's easier for them to keep him in their home but I have my own home so it wasn't an easy decision but I have no say so in the care of my dad other than if I wanted to go live with my brother again to help them. I care for my dad and my brother but I decided I am not in good enough circumstances to just leave my home for longer and no matter how well you get along with family it's hard leaving your own family and home even for well intentioned help. So I decided it was the right time for me to move back home. I will go visit and relieve them when I can and am able to though.

I retired at 55 and moved in with mother after my father passed in August. It has been a "360" adjustment for me. I am still settling my father's estate and downsizing/ decluttering their home for some of my things. I am learning the only way this will work is if you tag team with someone else having them come 20- 25 weeks to give you a break. She is also paying me a monthly salary to supplement my income. Our elder care lawyer thought that was fair. She is 86 and in fair health. I just turned 59 and we made an agreement when I turn 62 she will go into a home or have a caregiver come in. Also, she is encouraging me to take a vacation. She thinks she would enjoy respite care for a week while I am gone. If you are in a situation to get some extra help it may work for you. I had to establish my boundaries with my mom and it has not been easy but we get over it and move on. Good Luck to all!

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.

Shickey99, do you know your parents' financial situation, specifically whether there is likely to be an inheritance (and, importantly, whether there would be anything left if they had to spend several years for care in a facility)? Do you have siblings? If you have realistic reason to believe an inheritance would cover your own needs as you get older, then this can give you more liberty to take care of your parents, as long as you obtain the help needed to keep them safe. If this is not the case, then you certainly can't be apologetic for needing to return to work to finance your own future. However, even if your parents have the financial means, you shouldn't let them "buy" your future from you, meaning that you sacrifice your own life by spending years taking care of them such that you are too old and worn out to enjoy your own retirement. On the other hand, you are not taking care of them solely to "earn" your inheritance.

If this question doesn't apply directly to you, it may to some of the others on this forum.

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.....

Shickey99, you have every right to wish you'd made a different decision than the one that seemed clear at the time. I don't have any better advice for you than what people have already posted but I hope you get out from under that burden very soon. You have many years left to do what you had planned to do. Hang in there.

You know it truly is not a pity party, but more of grieving. I understand. I brought my Mom from her home in another town about 4 years ago to live with me. She enjoyed the "vacation for awhile" and for the longest time never asked to go home so I didn't bring the subject up. BUT, the longer she was here, I observed so many ways that she at 92 couldn't go back and live by herself. So, I felt that living with me was the only solution. She had no friends or family there, the neighborhood were newer people she didn't know, crime rate was growing, so if she had stayed there, I would have had to hire someone to come in and be with her; neither of us wanted that.

She is very independent in the house with her walker for 96. And most of the time we get along. Early last year, I gave up my job ( really high-stress, 50+ hours/wk ). As I started collecting retirement, and with the pandemic, I stayed home and became the full-time caregiver to my mom. Most of the time has been pretty good.. we love TV and watch it most of the day. However, I've gained weight, out of breath easily and definitely out of shape. If I am not right there in the same room, Mom goes to look for me. She won't eat unless I eat. If she gets a cookie, she brings me a cookie. She looks to see when I get dressed in the morning, and then copies that... she is unable to do most activities and looks to me, "her twin", for all attention/entertainment. We finally got her house sold last summer; most of the time she remembers that.

My daughters want me to have the caregiver come in a couple of days a week so I can go somewhere or do something. But at $20/hr, 4 hour minimum, that's $80 for me to go find fun somewhere. I don't want to go to the movies anymore, as we watch so much TV. Oh and I am planning a short cruise for us next month, because we can both do that pretty easily and enjoy it, and especially a peach daiquiri with whipped cream and a cherry!

BUT, I am starting to be really bored and more irritable more often, and am seriously thinking of going back to work. I miss the income, I miss some of the socialization, the independence. And I keep in mind the future, if and when Mom's medical/mental/physical state were to decline and she would need an ALF/NH.

I've needed and wanted to do this and for the most part have enjoyed having Mom here, but you are so very right, it has been a lot to give up, for her (hear all the time about "her" home) and for me. What I do know is that I never could have moved back to Mom's town and house. I had my house and could not give it up. So, I do understand about her missing her house; it's just that I used to feel like she cared more about her home, than me.

Anyway, at some time down the road, I do see Mom moving to an ALF, and will have to look at it, that I am spending the time with her now while I can, but will look forward to being alone.... not followed from one room to the other, or stared at, or any other "twin" behavior.

It isn't easy, Shickey99. But we, the caregivers, are older and want lives, too.

Wow! My common-law husband of 17 years were full-time caregivers for both of my parents from May 2018 until they recently passed away.

My mom suffered from Lewy Body Dementia. My dad had a negative/sour attitude most of the time. My mom passed away August 2020, my dad passed away March 2021, & my common-law husband passed away May 2021. My mom was 76, my dad was 83, & my common-law husband was 61. I'm 60...

We had no help or contact from my 3 siblings. After my mom's death, they became greedy, more uncaring, & sneaky with their own agendas. They blamed me for not being able to say goodbye to my mom. Their guilt from being estranged from our parents for years was dumped on me! Then, after coming back into our lives, they only wanted money/possessions from my dad & me. They offered no comfort or assistance whatsoever; they didn't even come to my dad's funeral service.

Several times, like yourself, I felt there was no end in sight. I was tired, frustrated, fussing with my partner almost all of the time. The stress of taking care of one elderly person--let alone two--was exhausting. Pair that with my partner's declining health--from 40 years of smoking/alcoholism--many times I believed I would pass away first!

I prayed constantly for guidance & strength. Hiring outside caregivers for $20-$28 an hour was more of a burden to us. The constant unreliability & training new ones was exhausting! I mostly handled everthing myself. My parents could not be left alone at all. I had no personal life. However, I have many pics & fond memories of my 3 loved ones who I lost in 9 months time.

I would suggest trying your luck with an outside caregiver service. You may find a good one.? Prayer will definitely help! If you decide to place your parents in a facility, try not to feel guilty. You need some respite time for yourself before you crash & burn! Research the facilities first to find one with at least a 4-5 star rating. You can still be in your parents' lives.

God Bless...

LexiAngel

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.

*hugs*

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.

Get in touch with your local Area Agency on Aging and see what services they may qualify for. This may free up some of your time so you can have some free time or maybe pick up some outside work. It might be possible that your parents qualify to have you paid a their caregiver.

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.

Sit down w your father when it’s a good time for both of you, express how much you love and care for them and your glad you were able to help this long to help them remain at home however as your also aging at 60 you need some time for rest breaks, and to attend to your own needs and things you’d like to do, such as visit friends or take a class and ask him to think of some other relatives friends to fill the role part time while you take weekends off ( if nobody comes to mind hire a caregiver) Start with this. It’s an easier transition for everyone than a stark announcement that you can’t do it anymore

You have done a good job letting us know exactly what is missing from your life: a different style of home, working part time outside of the home, friends, travel, and "time off." You also mentioned some of the caregiving duties you perform for your parents.

I have a few questions:

1 - How many hours and days of the week are you caregiving?

2 - Can some of the caregiving tasks be farmed out to others? Ask for help from family, friends, members of faith community, and/or paid help.

3 - How many hours a week of part time work would you desire? What work options are available where you currently reside?

4 - God forbid, if you were sick or injured how would your parents' needs be met?

I ask these questions to get you thinking about how to care for yourself, which is as vitally important as taking care of your parents.

I was the 24/7 caregiver for my 79 year old wife, who was bedridden. I got help from Hospice, but I physically could not handle her when she could no longer move from the waist down. IE, not healthy nor strong enough. I felt completely useless. I got very lucky as the rest of our family came to my assistance for a while. My wife deteriorated further, stopped eating & drinking. Just took the two liquid medications for pain & anxiety as directed. She passed in her sleep.
I feel guilty for having given her the “ Hospice Cocktails” even though I should not. It’s been a month now that I do not “care give” her or anyone else.
I have chronic O/A & probably PAD, as my legs barely & very painfully support me. But the earliest visit to my health care team is a couple months away. I’ve changed my diet, exercise more. Helps some. One thing for sure, it’s very hard to plan ahead when every answer means you become further into financial bankruptcy. I know. I already did that 15 years ago. Lost our home as well.
Be very cautious in your choices. Best not to have a credit card or a Facebook account. I don’t watch the news either. I select what I see from my internet menu. Good luck caregivers.

You are in deep but you can get a nurse to assist 3 days a week to give you some space. I take care of my mother emotionally. I don't live with her but she is always an emotional, dominant mess. She is 83 years old and very difficult to deal with. I set boundaries now because my life is important and I have goals and passions and things that I want to accomplish. You still need friends, fun, travel and your owns desires in life to feel like you are thriving in life, not just living. Your parents are already 91 and they lived a full life and do need you to take care of them but getting someone to help you so you have more freedom may be a good idea.