They had their turn. How our situations are "unfair"

I completely understand every word of this essay!

I so know what you are saying.

Mine left WI for their "vacation" home in FL for 9 months a year, returning to WI in summer when the weather was nice. They spent their time boating, fishing, golfing, antiquing, lunches out, long drives, etc. etc. 1300 miles from their family. Never had any elder care responsibilities. They returned to WI full time when they got sick: dad with CHF/kidney failure and mom with dementia.

Tried to take care of them at home but it was my brother and me full time, waiting on a very demanding dad. Mom completely useless since she had lost all memory and any ability to plan or complete any household tasks.

Dad passed away in 2019 after a VERY rough year waiting on him hand and foot. Mom was moved to memory care immediately, since I was the only sibling with an extra room and bath and I had just retired at age 69. But spouse who is younger and still working was not about to have his mother in law live with us. He barely knew her since I married him later in life. We had also just finished caring for two other sick elders.

Enough of the "elder care." I don't want to spend the last 10 years of my life, during my "carefree retirement," playing nursemaid to sick people who failed to plan for their own care. What were they thinking? If we are lucky, Mom's money won't run out. If we are not lucky, we'll be on the hook for that expensive care, and none of the estate will come to me after her passing.

Get social services involved and welcome aps to investigate. I wrote in previous posts that aps and social services are here to help and are not there to judge you or get you in trouble. You are doing the best you can with what you have and they will notice that. Dementia is the main reason nursing homes and memory care facilities exist and continue to stay in business. There are good facilities out there, you will have to do some homework and check reviews. I’ve made it clear to my parents a long time ago that if they become demented or have excessive physical care requirements that it’s time for placement. Certain boundaries will never be crossed and they totally agreed. I told them to imagine having your kids wipe your bum when we were never allowed see nudity of any kind (loving but strict and didn’t spare the lash). It’s one thing to care for a spouse but very different when it’s someone who raised you and scrutinized everything about you. Mother is still living independently and seems to have mellowed (since father’s passing 6 years ago) but is “uncomfortable with my life choices” as she tells me.

I hear ya sister!! I’m in 100% agreement with all of it and have felt all of those emotions so no shame and guilt from me. I have even wished for the passing on so I could be free. Even a hospital stay sounded glorious. I actually got my Christmas wish — she went in for 6 days over the holiday. Hallelujah! You obviously need a complete break for a week to see if you can find yourself again, find your positivity, find a renewed energy. Only with a clear head when you are feeling your best can you make the best decisions for yourself and your LO. Drop the guilt and find your strength. It’s in there somewhere!

Yep, I made the "choice" to take care of my parents at home. Out of all the "wonderful" options I had, this is the one that seemed to stink less.

Now, the next time an innocent man is about to be hanged, I will remind him that it was his "choice" to hang because he could have chosen the electric chair instead.

Sorry, I'm feeling kinda sarcastic today.

You have my sympathies.

Everyone's situation is unique. How much responsibility or blame lies on the elderly we care for is sometimes obvious and sometimes not. We are all flawed in some ways, and perhaps aging accentuates or creates new flaws. For some, they perhaps have always been difficult in youth, and the entitlement/selfishness in old age is just more of the same.

Like other responses here, I recommend you move them out. It's difficult in the short term, but better for everyone, including them. Look at it as a way to save everyone out of the toxic environment, and preserve whatever good feelings and memories that remains intact. There may be none at the moment, but with time (away from caregiving) you will be able to reclaim what you once had.

I often wonder what I will be like in old age. Will I become lifeless or make everyone miserable around me? Will I lose my sensibilities and make unreasonable demands on my children? Will I allow age to slowly rob me of my values and commitments to my loved ones? Will I become a walking zombie, like so many elderlies I see in the park or those who are barely alive in nursing homes? Life's greatest challenge lies in the final years. Old age isn't easy.

I dare not hope to be amongst the lucky few, who die in their sleep with their dignity and character intact. I've seen too much.

It's pretty obvious that we haven't figure out a good way to die. The only thing we know is to prolong our physical bodies. I know there are exceptions, where there extraordinary individuals who manage to live active and meaningful lives into their 90s and beyond. But for the rest of us, we need a solution. Personally, I am not ruling out euthanasia. It's not as bad as it sounds. We all will need to vacate the spot we have here on earth. If we can choose how to do so, death doesn't need to be messy, prolonged, and haphazard as it is now. We might be able to leave with some measure of grace.

I feel for you. My mom died peacefully in February at age 96 after years of what you are describing (me the only one willing to step in). While I was sad - and still can be at times - I am at peace knowing I did everything I could and that now she is in heaven. I realize that much/most of my grieving occurred over the many years I cared for her. Now, it is such a luxury to be able to put myself first for a change - and believe it or not, hard to do. I have so much time that I did not have before, even though I am months into going through all her stuff. It has been an adjustment, but in a good way.

Again, no easy answers. Just wanting you to know I totally sympathize with you. I still check into this forum, try to respond to certain questions, and am trying to figure out how I can use my skills to best advocate for elders and their families. I have moved on, but I have not forgotten.

I was where you were at. I started looking online at facilities, read their reviews, asked friends on Facebook for their experiences, and investigated the ratio of caregiver to resident. My mom has vascular dementia, so we looked for reputable MC facility. It's been 5 months now and what a difference! My mom gained weight, made friends, and I've come to trust the staff. It's been hard since we can't see their surroundings due to COVID. The first 14 days she got their were awful for me more than her. Trusting the staff to take care of her after I've taken care of her for over 3 years was tough! However, time after time, the staff showed themselves to be trustworthy...not perfect, but trustworthy. Checking into the training requirements for facilities per state is helpful as well. My mom didn't go willingly, and she still wants to go home, but she fought me on this even when she was with us. She still has her sad days when she's with us or in MC. What she has more of then before is good, happy days.

Sadly, I know exactly how you feel. Why do some of us get stuck as caregivers while siblings skip thru their lives like nothing is wrong.
I have come to hate the woman who my mother has become. Dementia has taken away a strong independent person and replaced her with a whimpering, self-centered life sucking old woman.
Like you, I am tired and resentful. My 60s so far have been a big disappointment.

Oh boy when I read your post I thought she is me, only I don't have the courage or even the clarity to articulate what you've said. Everything you wrote is pretty much exactly how I feel on all counts. I even had the same thought earlier today, 'she's had her time', time to be the age (and ages) I am now and have been, totally free to be herself, and a chance to age naturally on her own.
For the last 18 years I've taken care of Mother, and her dementia of course has gradually worsened over time. I worked all day at an extremely difficult and lonely job only to come home to care for her for hours. I couldn't come home after a hard day and just chill out for a few moments as people do, I came home to a second thankless job. Sometimes I would sit in the driveway and cry thinking about how tired I was and what I had to face when I walked through the door. And yes to anyone who's reading this, I am having a pity party, sorry, but at times it's all I can do to fight the frustrations of caregiving, to remember that I once had a life as a separate person.
ExhaustedOne, I, and I'm sure there are many others understand your letter. Even though we don't know the specifics of your life and of your Mothers, maybe it helps to know someone else has an inkling of what it is you're going through. I sure hope it does, I know it helps me.
To continue on with my saga, along with my Mother's incessant needs, and her health issues there is now a stage one possibly going into a stage two bed sore that I'm trying to help her heal (any suggestions from anyone?, I'm using powder, coverings and weight changes), and it seems to be getting a little bit better.
I micro-manage every aspect of her life, only to be met with resentment and resistance (how dare I tell her what to do), but it is necessary. It's seems almost inhumanly possible to continue on like this, yet I go on and on.
Most family have passed on, friendships have dissipated. I had to quit my job early because of Covid (thankfully I was close enough in retirement age) so I could continue with my Mother's care. And how true she's not ever going to get better, it is all downhill from here.
And the relationship between us has changed, all I feel now is a warped cynicism of Mother and Daughter relationships, often thinking when I see a younger version of myself out with her Mother, 'quick get out now while you can'. People are always saying to me (that is when I used to see people before Covid) 'she's so lucky to have you' but I don't feel so lucky to have her, which makes me feel guilty. And yet I'm sure people who are reading this know how emotionally complicated caregiving is. There is plenty of resentment, guilt, anger and frustration, but there's also compassion, moments of love and some good memories. But then there's Covid, and nowhere she can go even if I wanted her to which truthfully has become a more common thought.
The feeling of being the world's biggest idiot is always there, to have gotten myself into this situation, I mean no one I know has done this or would've done this ever.
And there's the assumption by quite a few that I'm Mother's little helping angel. It's repulsive. I didn't know Mother was going to be a super senior and live to be 96 and perhaps well beyond (more guilt inducing thoughts) I might of done things differently if I'd had a crystal ball.
And the kicker in all this is that my Mother was always very narcissistic and neglected me when I was a child (for example she encouraged my brother to give me LSD and a myriad of other drugs starting when I was twelve (think whole family acid parties), gave me away to an eighteen yr old man when I was 13 because and I quote "I thought he could raise you better than I could". Many many other areas of neglect but yet through it all she managed to instill in me as a child that I should be taking care of her and not the other way around. I guess it stuck. My thoughts are with you EO

If you are expected to take care of her, then it has to be with your rules and she better understand that. My mother has dementia so most of the time doesn't argue, but when she does, I let her know in no uncertain terms that she must do what I say. I tell her I love her and that she must listen to me because I am taking care of her. She can't be alllowed make my life any more miserable than it is by being obstinate.

Assisted Living time. Why in the world would you feel guilty? My mother just went into A.L. 2 weeks ago. She visited the facility 5 xs. She picked it out. It’s 2 yrs. old and beautiful! It’s the Ritz Carlton of facilities. One week in and she’s complaining vehemently that she’s being held captive there against her will. She’s miserable. She wants out and wants to go home.
When she had a full time live-in care giver in her home (who was wonderful) she was complaining vehemently that she was being held captive against her will, etc. She didn’t want a care giver. She wanted A.L.
My husband and I feel ZERO guilt.
The nursing staff is watching over her & knows what to do.....we certainly don’t.
If your loved one is going to be unhappy wherever they go, or there’s better care for her elsewhere....do it. Get your life back and visit often

I have been where you are. You don’t owe your parents your life. Guilt is keeping you stuck in a situation that is effecting your mental and possibly physical health. Your unhappiness will flow down to your parents even though you don’t say anything. They need to be somewhere they can be taken care of and be safe. Let the guilt go.

I just wanted to say how much I appreciate this site. For years I thought I was the only one that struggled with caregiving. All of you help me realize I am not a bad person for struggling with parental care.

ExhaustedOne, I'm so glad you asked this! I often feel this way but I have not able to articulate as well as you. Hugs to you and all the warriors out there.

My mom also refuses to shower nowadays. She came from India to live with me when she became very forgetful in her senior facility there. She wants blazing hot weather (not possible in the northeast now) and I'm so terrified she will get sores etc.

I am thankful my mother never wanted to be an imposition so she went to a home. They take excellent care of her and she is actually happy for the first time in a long time. She has company. She has her medicine regularly. She has regular meals. Her only complaint is she can't eat all the food they provide. She is sleeping good because of chair exercises they do. The point is a home is not so bad. I wouldn't feel guilty even if she asked for me to take care of her and she was in a home. I know I couldn't do it. I don't have the training or mental skills to handle.

CarlaB wrote:

"Overall, I agree with what you've said, but I want to respond to a couple of points. One is the idea that you can't provide proper care while being resentful. I don't know why people assume that, because I don't believe it's true. My mother was quite happy with the care I provided for her, and I was damned resentful, and she knew it too. Which leads me to my second point. Do our parents want us to be unhappy, resentful, miserable? No, of course not. But it's a trade-off they may be willing to make. My mother told me: "I know you feel trapped, and I wish you didn't feel that way." Notice she didn't say "I wish I didn't have to do this to you." Because she didn't have to, but she chose to. Reducing her expectations for the lifestyle she wanted was not an option she would consider. Trapping her daughter in a life of misery and bitterness was unfortunate, but acceptable. To her."

I was up with insomnia last night and thinking about this post! Carla you are absolutely right that for some parents, they KNOW they are being a burden, and it's a trade off they are willing to make. I even asked on this thread WHY would my mother rather be a burden to me than go to an ALF/MC?

It's crazy the amount of time I have spent feeling guilty, when in reality SHE should be the one feeling guilty.

When the day finally gets here that I am able to force my mom into care, the amount of guilt I will have will be 0.00

Thank you Carla for continuing to post here, I think you have a lot of good perspective to offer and I appreciate it!

I feel exactly as you do......

Exhausted one:

You already gave the answer to your plight: you said: I am "in a hell of my own making."

That is true, you are. Now you can change things.

If your parents instilled guilt in you about their old age care, instead of planning for their own old age, as a good parent would do, then they ARE NOT GOOD PARENTS, ....thus you owe them nothing.

People should not bear children and raise them to be slaves that care for them when they are old. That is why they have an entire profession that gets paid to take care of people...young or old, who can no longer care for themselves.

Your siblings walked away and so should you. They probably saw through the guilt mongering and resent your parents just as much as you do.

If your siblings are truly laying a guilt trip on you, rather than simply walking away, then drop your parents off on their doorstep on New Years eve, and let them take care of their parent going forward. Or, they can take the responsibility of refusing to do so and installing them in a nursing home.

Either you or your siblings can and should use their social security and/or savings to install them in a nursing home. Then go off and live your own lives.

Quite honestly, I do not want my children to wipe my butt or change my diaper. I have too much pride to allow that. That is why I have planned for my old age.

IMO, everyone should.

My children will have their own lives to live, and I want them to live it to the fullest.

I had children so that I could enjoy raising human beings until self-sufficient adulthood.....not so they could be my personal handmaidens when I am old.

Anyone who had children for any other reason are selfish and self absorbed.

Best thing is to just dedicate the time you can in small intervals. Let's say you give 2 hours at a time. Do not let your siblings make you feel guilt. Siblings are good for that. Give what you can and that's it. It is true that we have one life and that you want to have a passion filled life. I do too. My mother tried and did for a very long time, to use me as her emotional care giver. I started to feel burdened but then I set boundaries with her. I was feeling emotionally abused, in a way, and just felt that I could not carry her burdens anymore. She is 83 years old and lives alone and is quite the complainer. Do you! Do what is important for you and dedicate time to take care of her in intervals so you do not feel burnt out or upset about it.

You may just be having a bad day and venting but it sounds as if you are doing something you really don't want to do. If so don't do it. You are an adult and have a choice. There are alternatives. Get a plan B. There is lots of advice here with alternatives: take the advice and free yourself - and your parents and siblings too - into a more appropriate place.

Great post. Pharmaceutical companies and doctors keep seniors alive and miserable for many years but yet with no plan to care for them as they become less and less independent. Seniors refuse to make any plans for their care and wait until they have an emergency expecting and demanding adult children become caregivers. Seems like the seniors should be the ones feeling guilty. Place them in assisted living and work thru the guilt. I’d rather deal with guilt then anger and resentment.

Please give yourself the best gift you can give and get her to a nursing home. AL will help with showering and dressing but not to the level of care that sounds like you mother needs. My mother called me a few years ago and threatened to show up at my house for me to take care of of her. She was my abuser as a child. She told me I would have to call the police if I was not going to let her in. I did my homework and asked police what should I do if she shows up. I was told there are “emergency housing” No one will be put out on the street.
Make some calls today. Tell them about your mental status and how you are feeling so they can see you need help. I always thought AL was only for the wealthy. But I found an AL that accepts my mothers SS income as her payment. She is allowed to keep $80/mo. Her 3 meals are served daily, she has a nurse and an aid in the building 24/7 if she needs help. They do all her laundry and housecleaning weekly.
I can now sleep at night and stopped having panic attacks knowing she is safe with a roof over her head. If your mom has no assets they will ask you to start Medicaide application abs she will be considered “medicaide pending” Then they (NH) will get reimbursed for their payments.


Think of how wonderful it will feel to come back home to your house and she is not there after you get her into a place to take care of her needs. And like others have stated above, they come in fresh on 8 hr shifts. You have been doing 24 hr shifts. Please, pick up the phone today. Get this ball rolling and get your life back! You deserve it! My therapist told me every moment I spend caring for my mother is time stolen from my own life that I allowed. Keep that in mind. I refer to it often.

Good luck!
Keep us posted
Some of us have been in your shoes.
Do yourself this favor today!
Pick up the phone after you read these posts.

Girl you need a big change ASAP! Please do not feel any guilt about what you are feeling. Your parents need other arrangements. Call your local area on aging or social service agency to get their options. Wishing or waiting for them to die never really works out - you need a better plan than wishing for COVID-19! Get some counseling - it helped me greatly. But more importantly get your independence back. All my best to you!

Thank you for having the courage to express what many of us are feeling. My parents were the most stubborn pair you could imagine.
Sister (2 brothers estranged) and I started 20 years ago begging them to seek financial advice, of course they refused and lived life as they wished. We even found a church friend who they could be comfortable with. No life insurance or planning for retirement at all. They sold their home in FL and moved with loser brother to SC. We begged them not to.
Sister and I finally had to move them back to be near us in their last years. Now dad passed last June after many hospitalizations, vascular dementia and a barely functioning heart because he refused to accept the procedures that could have improved his life when he was younger.
Now sister and I are stuck with demented mother who will run out of money and need either more sitter time or move to a nursing home via medicaid. She is difficult and confrontational often refusing showers and doctor's instructions. She has never been kind or nice to sister and I. Mom focuses her concern and love for her sitter, thinking she is a "friend" that is always there. Whatever I am thankful for the sitter too because I am not visiting more than a few hours a week. Mom's needs are met and for now she is in her own senior apartment.
I do her care from a distance handling communication with caregiver, meds and delivery groceries and supplies when needed.
At least we all can learn from this experience and prepare better for our senior years. Hopefully this kind of burden will not be left for our children.
Feel free to let it go and vent to us.
We GET it!
I also pray for peaceful speedy deaths for mom(84) and husband's aunt(92).

Glad you realize the reality of your situation. Might I suggest that you only feel guilty when you accept the claims by others that you are wrong and guilty.

You do not have an obligation to make your parents happy. Nobody can do that for anybody else. You can make sure your parents have a safe environment and that people/activities are in place to maintain their health and safety. As their adult child, you do not have to do all the caregiving or any of the caregiving. You just need to make sure it is completed.

If the current situation causes you so much distress, it is usually an indicator that something probably needs to change: get more help, move them into a long term care residence, get away for some respite.... whatever you need to do to get back some balance. You'll know that you have achieved a better balance when you can get 7-9 hours of sleep daily, regular meals, regular exercise, time with friends and family (other than your parents), and time doing something you enjoy.

Medical science is keeping people alive longer so people living to be in their 90's --is no longer unusual. Living longer with chronic and debilitating diseases. Just wait until they become 100% dependent on you and you have to constantly change diapers and even clean their poo. My mom's Alzheimer's was so bad I had to mange her bowels because if she did not go, the fourth day she would be impacted. Literally stuck in there. So I had to establish a bowel program to go every tues, Thursdays, and Sundays. So your situation will only get worst.

My suggestion is plan on assisted living or nursing home--and consider what you are going through now the "good old days".

"They didn't have to wipe their parent's rear end, plead with them to bathe, deal with the rashes they got from NOT bathing, deal with their complaining, inability to do anything independently or even make their own meals."

You were never made to do these things either, you chose to do them. Time to make a different choice. Off to the MC/SNF she goes. Don't let the door hit her on the way out.

Sounds like you need you time before you crack.
You need to take care of you because mo one else will.

First thing stop overdoing about your parents.

Set back and let the Caregivers do what they're hired to do.

Uneeds your parents are mentally unstable, there is nothing you can do about their choices.

You need to get out and do things fir yourself and leave the parents with the Caregivers.

You really don't have to take a bath every day.

If you are worried about your mom not making it thru the night with her urine, let her wear a pull up diaper at night.

Just try to remember that there are more ways to do something than your way.

Your parents are adults, treat them that way.

Let your parents make their own choices and with them they'll have to accept the consequences, just like you did growing up.

Every one will be more happy including yourself. If you didn't try to run the whole show yourself.

Prayers

i know exactly how you feel/ I was caregivers to a cruel grandma and I was tricked into the situation and I had sneak away from that situation. My family did not want to help but they wanted to be judge mental, cruel and treat me like a prisoner. I felt bad when I left that my mom had to take care of her. What made me so mad about this situation is that it’s my grandmas fault that she is like that and can improve but she wants to be stubborn. What made me mad is that my family was willing to hire a caregiver when I left but not to help relieve me but they don’t have one because my grandma fired them both so my mom has to take care of her. My grandma got to travel the world but she is taking away my mom’s and the family’s last years of life and causing my mom to lose her strength by wiping her butt and do heavy work and I know she can wipe her own butt! She refuses to work to get better but she wants to slave drive everyone with all these extra chores like yard and reorganizing when taking care of her is already hard enough. I just want to yell at her what’s wrong with her because she refuses to get better and won’t work on it and says she gives up but refuses the nursing home and go to the hospital so that they can fix her but she says she gives up but she wants everyone to sacrifice their freedom to take care of her. Me and my sister was talking the other day about how it’s not fair because she brags about her travel and she got to had the freedom to travel and have all of these husbands but she is taking away this freestyle especially from my mom because she is sucking the life out of her. She refuses a caregiver and pretends that she can’t do a lot when I know for a fact that she can. We can’t put her in a nursing home because she refuses and she will be around for many years and holds my mom prisoner like she did me and they give me guilt but I had to deal with racism and hate from her that my mom did not have to deal with and it left me feeling so worthless and hate myself.

she said she is old and she should not have to worry about working out to get better and I want to yell at her so much because she is killing my mom and taking away that time my mom has and my mom is healthy but she is taking away my mothers health and freedom because she is so evil and it sucks because the law down here prevents us from doing things down here because it gives her the right to make the choices. She doesn’t have to go to the hospital is she has the mind to say no, we can’t force her in the nursing home, she has the right to fire the caregivers but it is neglect if we don’t care for her

I hear you. You have the courage to speak up. We are human. And this is a burden. And people can be difficult. I have some help but not enough. I try and get up an hour early about 5 a m just to have a cup of coffee and some peace. Nursing homes are great if you have the money. But most people can't afford it. Hospice helps a little for me. But my husband is fierce in his will to live. So he keeps going. Ofcourse, its 24-7 you know that. You need a little time to yourself. I finally got a little more help 4 hours twice a week. Maybe I can take a walk or shop, just to be normal. Social services help also on a sliding scale. Try and keep up with friends even just e mail or phone. We all need an outlet. Eventually choices have to be made when you can no longer do the lifting,etc. I am almost there myself. Support groups are good if they don't depress you and offer some advice. I didn't find it helpful to me. Seeing people just like me sleepwalking thru life. Get help where you can. And if she has money, get power of attorney to get the help. You sound like most of us, its all pent up with guilt for the feelings and the wanting to do the right thing. What you choose is right for you. Don't let anyone tell you otherwise. You know your limits..You really need a break, just ask the agencies like social services, or granny nanny anything to help. Good luck, I really feel your frustration, you need a big hug!