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.
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.
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".
Your profile states: "I am caring for my mother Mom, who is 91 years old, living at home with age-related decline, anxiety, cancer, depression, diabetes, hearing loss, incontinence, urinary tract infection, and vision problems." Does she do all her own hygiene care? You state that you "help with property upkeep, transportation to appts., health management, meals and such."
Do you do the cleaning? The laundry? Outside chores? What is "such"? Can your parents stay alone, or does someone always have to be there? What do you think would happen if one or both of your parents required a lot of hands-on care? Do they have the funds to hire caregivers? Live in a facility? Could they become Medicaid-eligible?
Are there siblings anywhere in the picture?
As the others have already written, you CAN get yourself out of this predicament, and you don't have to be your parents caregiver. Did your father realize what you would be giving up? You state they are appreciative, but do they really realize what they are doing to you?
Why are old people living so long now? I don't get it. You have 60, 70 and sometimes 80 year olds trying to do it all for their 90 and 100 year old parents. All the sacrigice and what are these parents sacrificing for their now elderly children? Not much from the sound of it.
When they were children, their households were multi-generational. It is normal for them, that's why they expect us to step up.
Please don't think them selfish.
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.
What I may do is say "I have been here now 2 years and I don't see where you can remain in the house for the rest of your lives. There's just too much upkeep and you have too many needs. I am just one person. I think you and Dad would be better off in an AL where you have help 24/7. I have found I cannot do it all. I realize that I need to get back to work. I need to look towards my future."
And u do need to get back to work because of your SS earnings. At 60, full retirement for u is 67 to get 100% SS. 62 you get 75%. 70 I think its 135%. SS only goes back 35 years from when you start collecting. If in that 35 yrs you didn't work 10 of those years, your SS benefits are based on 25 years.
Your parents can age in place because you are doing everything for them. TG you have only put 2 years into this. You may just need to say "sorry I can not do this any longer." Then show them that you do everything for them. They are no longer independent. If you want tell them that you miss your home, your friends. That you need a life of your own.
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!
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.
Now I have the house to take care of AND schedule visits to see them. (At least I know their medical needs are cared for properly).
I don’t think anyone understands what I gave up to do this. But after 2 years I’m finally beginning to accept my decision and think about how to move on personally while still supporting them.
Not easy. Hugs to you. Hope that knowing you aren’t alone helps!!
if you are able and interested, I’ve shared my story previously on here. We all need a good pity party now and again!
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.
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.
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.
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*
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
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.
If this question doesn't apply directly to you, it may to some of the others on this forum.
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).