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

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.

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

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.

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

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.

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.

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.

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.

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.

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!

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 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.

I completely understand every word of this essay!

Hello EO,
First I’m sending a you very big virtual hug. I’m so sorry you’re struggling and you have every right to feel what you do.

The other posts are correct. You need to contact social services, elder care, and start researching memory care facilities.

It will be difficult at first to deal with the guilt. Your mom sounds like she is a travel agent in guilt trips. If she’s in a facility she will complain but eventually will adapt. Plus you don’t have to deal with her guilt trips everyday. Right now you’re so resentful (as you have every right to feel) you are losing sight of the joys in life. You may wish to consider therapy.

Your siblings need to keep their comments to themselves unless they are going to help you find a facility or pay for home care or help in any way. So disregard them (it can be tough) and make decisions to help your parents and yourself.

In the end it will be for the best to have them move out. You need to have a quality of life which right now you can’t have because of them. You deserve to have your time and be free.

If the money is available to put them in assisted living, and it won't bankrupt you, send them to assisted living. There are beautiful places where they will be well taken care of and you can maintain at least some of your lifestyle. I've been taking care of my mother for 10 years and you will not get less angry. How you respond to the guilt thrown your way is up to you. If your parents or siblings don't have any practical alternatives that include their participation, then they have no right or reason to pile guilt on you. Put your parents in assisted living, go visit often, bring gifts and give your love that way.

If the money is available to put them in assisted living, and it won't bankrupt you, send them to assisted living. There are beautiful places where they will be well taken care of and you can maintain at least some of your lifestyle. I've been taking care of my mother for 10 years and you will not get less angry. How you respond to the guilt thrown your way is up to you. If your parents or siblings don't have any practical alternatives that include their participation, then they have no right or reason to pile guilt on you. Put your parents in assisted living, go visit often, bring gifts and give your love that way.

I’m not having to give the same level of care as you, but I feel much the same way. 91 year old Dad lived In his home 51 years until this past September when I finally convinced him he was not safe alone and he reluctantly agreed to move to AL. He has a lady friend in another apartment (together for 15years) but mostly he is alone. He uses a scooter and rarely his walker, so his mobility is terrible. He just spent two weeks in the hospital for a UTI and sepsis, and pretty much refused to work with PT to gain strength, so now he is in rehab for who knows how long. He knows he needs to put some effort if he wants to go back to AL, but I am afraid he will end up in a nursing home and shrivel away in misery. When he was in the hospital I was almost relieved that he was declining, hoping that it would be the end. It is hard to watch a man who was so smart, so capable, turn into a baby. I feel guilty for feeling that way, and guilty for convincing him to move out of his home. I know how you feel.

I hear you as well. In my case, the biggest part of the problem was that elder was in complete and total denial that she needed any significant help. Here are some examples of what I experienced and there were many, many more:

Elder: "Is it too much to ask that you should pick up my pills? YOU won't let me drive."

Reality: I not only "picked up pills" but I called doctors to find out what she was supposed to take, communicated with pharmacist regarding same, worked things out with pharmacy when elder damaged one of her scripts and it could not be used. I also made sure she took meds, I hid the ones that she tended to want to to take too much of, etc.

Elder: "I need a few things from the store."

Reality: I did all shopping, portioning, cooking, dishes, etc while elder complained and said that my food gave her diarrhea. (For the record, she had already had stool incontinence issues before I ever cooked for her. I don't think my cooking made anyone sick!)

Elder: "I leak urine once in a while - I just need a pad."

Reality: Urine incontinence. Ongoing accidents and refusing to change wet clothes. I cleaned stool from the carpeting as well. Smear marks from stool in bathroom from her inability to manage bathroom independently or clean up after herself.

I think many elders don't get it how much help they really need. Sometimes, they don't remember (or maybe choose not to) how many times they issue mandates to caregivers in a day. I think mine was so scared of what would happen to her if she could not stay home that she minimized things in the hope that somehow it would become true? It didn't help that we had a meddler who reinforced elder's belief that it really wasn't that bad, etc, etc, and that I was exaggerating the problem to justify putting elder in a facility. Sad as it was, I couldn't let anyone's feelings hide the truth: elder needed 24/7 care and that's where she is now. The only other alternate solution anyone could come up with (including the meddler) was for ME to try harder and get more "efficient." Really? My life had already become a prison. Looking back on it, I don't know how or why I survived.

People did not live this long in prior generations, unless they were of extremely sturdy stock. As a result elderly children are caring for ancient parents. I don't think anyone planned for this. Add to that, loss of income which effects your social security, missing adventures you could have had only to be unable to do them because after caring now you are the old person.

Medicare provides respite placement so that caretakers can take time off. Make use of this.

You are absolutely correct it's not "fair". It is, however, the way things are now. (((Hugs)))

I so get it ! I have had the same holiday wish everyday for the last few years. I have had enough. I don’t even have any other family to help me. No one. My bright side is she doesn’t live with me, but all the calls, visits, begging I have to do pretty much consumes all of my time and energy.

I am so done! I want to run off and never come back.

Dear ms snowflake,
life is not fair. Leave. are you waiting for their money. Are you living in their home free while their money is paying mortgage and bills and probably groceries. You are not the only people who are put in position to take care of their loved ones. Both my parents are deceased now. You sure sound like you do these things in the most loving compassionate way. Put them in a nursing home on medicaide. get your siblings to give you a break.

I hear your pain and frustration. I understand the anger. It did seem like a Sunday visit was about as much as my parents did for theirs. We are now completely caring for them daily! We were fortunate that dad had the finances to buy I home on our street. Now that he is alone and 94 hrs old, I am his caregiver. I am lucky at this point that he still can take care of showers and toilet by himself. But when he’s sick it’s all me. I have showered him and wiped after a bad mess in bed. I am angry and resentful that he ( who has $) won’t let me bring in help. Even part-time. So I have put my foot down( thanks to years of therapy) and I will make his meals, clean his bed and clothes but I will NOT clean his house or him! Their stubbornness and selfishness is the worst. I am so sick of hearing how poor he was and how hard life was. No joyful stories. It’s like his beautiful family never existed! Only unhappiness. He tells me I don’t understand. No apparently I don’t understand anything because his presence makes me depressed. He is here every evening for dinner and the minute he walks in I feel the air getting sucked out of the room.
sorry so long. I guess it’s the end of the year venting! I won’t even get started on COVID isolation. That’s a whole different story! Take care and happy new year to all the beautiful souls who unselfishly care for others without getting the appreciation we all deserve 🍾🥳🤪

Do you or any of the others have POA of the parents? It definitely sounds like you are getting tired of dealing with everything, I hear ya loud and clear.  A lot of people are dealing with what you are and have no help.  It might just be time to say enough is enough and find a good Elder Attorney and see what options you have in placing your parent.  Don't feel guilty and do NOT let the parent make you feel guilty.  Not everyone is cut out to handle all of what you are doing and it WILL only get worse as time goes on.  Even during this virus crisis, places can take in patients, they will just test them, quarantine them in a separate area before putting with the rest of the patients. (at least that is what they are doing in my area).  This way YOU can take care of YOU and be your parents "child" again and not the tired caregiving person.  Its hard asking the parent OR reminding them to do things that they don't want to do because, well they just don't.  I am guessing the parent has dementia if they have to be reminded of stuff.  Like I said, things will only get worse and equipment might be needed to lift the parent in and out of bed, etc.  So it might be beneficial for both you and parent to become that again (parent/child) and let a facility take care of her 24/7 where you can either visit thru a window or "dressed in all gear" to visit shortly.  I wish you luck and hope things get better for YOU.

My older sister felt this much more than I did. When Mom first started needing a little help, I was 3,000 miles away and working full time. The only sister to retire early lived only 15 minutes away from Mom. She did have issues with it. I remember her telling me that she did not take early retirement to spend all her time taking care of Mom. She urged me to retire and move to help her. About 2 years later, I did. I did not do what she did, though, and put everything into caring for Mom. I started out with boundaries. No more than 2 half days per week, no housekeeping, no personal hygiene.

Most people don't think about it until it is too late, but one should always begin care-giving with clear boundaries. You need only do what you agree to do. Don't let anybody tell you that it is your "duty" to sacrifice yourself for a parent. It is not. Your parents' well-being is primarily their own concern. After that primary responsibility, it is a family concern. No one person should allow themselves to be "stuck" with Mom or Dad. That is not fair to anyone.

Find your boundaries, state them clearly, then live by them and with them. If your parents really cannot take care of themselves they will need to find residential care that is within their budget. Good luck getting your feet on the ground and your back up. The others in your family will be a bit taken aback when you quit. Quietly remind them that it is no more your responsibility than theirs. Then keep quiet. Leave the room if you need to, just don't get caught up in explaining or you will lose.

People are living a lot longer than they used to and hang on despite chronic illnesses. All my grandparents died suddenly in their 60s and 70s. We went to the hospital to say goodbye after a stroke or heart attack. That was the norm.

There was no warning for anyone of this new longevity. How many close to or over 100 year olds are in the news getting COVID shots? A lot!

It’s nice to have our elders around more years, but it’s been a painful and expensive surprise for all of us.

Imho, our situations are apt to be "unfair" due to medical science. In days of yore, no doubt age 73 was considered quite elderly, e.g. because there are now newer and more advanced ways of treating illnesses. So where does that leave the caregivers? Angry, bitter and more, but if we hang on to these mindsets, it is going to be counterproductive to life itself. Prayers sent.

Dear Exhausted,

I'll take a leap and say that I think we're ALL exhausted. The subject of 60+ y/os taking care of our 90+ y/o parents, as a result of improved medical and health improvements in our parents' lifetimes, is the ELEPHANT IN THE ROOM. This reality might have been anticipated 50+ years ago, but it wasn't, so here we are (us on this forum). I work to maintain optimism despite my age and exhaustion, that within the next generation or so, American society, culture, politics, and economy will significantly become more adaptive to this reality.

Reading this and all the responses has also really helped me to see I need to make a change in my mother's care also. It will be 4yrs in April. My father passed and my family and I moved in to their house over night. Sold our house. Mom is declining, but still very physical, angry and violent at times. She also argues and fights me to not shower, change clothes, and wash fecal matter off her hands. She insists on trying to do all herself. But she doesn't. She says, she's not dirty. That I am. And she pulled my hair and punched me in the face on Christmas eve, because I was trying to take off a soiled depends. I went to bed crying. Yes this is not the person she was when my parents were younger and we would talk about never putting her/them in a nursing home. But this is hurting me and my family. I'm 56 my youngest daughter is 13. And I've missed a few things in her life this past yr. And she gets very upset when my mom gets angry with me. So I hope we have helped you. Because you helped me. I promise next week I am taking with my brother to find a place for my mom. He and his wife have not helped at all either. And they promised they would when we moved here. Prayers and good luck to you.

If it gets to the point where you can't properly care for them, then please send them to an old folks home. No one should be forced to care for their parents for 10-15 years as they progress into late-stage dementia and begin acting strangely and unreasonably. You need to set down some ground rules, and if they start complaining just walk away and ignore them. Old people just complain and complain and complain if you let them. You sound like a very passive person, who needs to start standing up for yourself. They may be your parents, but if they act like children, then treat them as such. They'll quickly learn to behave or be forced to endure something unpleasant.

Bottom line, they never had to endure this, so they can't understand it. "Well, I raised you for 18 years!" Yea, but you didn't have to do everything for me for 10-15 years straight. Even then, children tend not to complain as much as old people do. Old people can be toxic to your health, and I fully understand what you mean by just being tired and underappreciated. They can easily take things for granted. My only recourse with my toxic aunt was to cut all ties with her and say, "Good luck and I wish you the best." I sent her to an old folks home and you know what? It felt good. I gained weight, had next to no free time, and lost a lot of wealth-building caring for her. It's just not worth it.

Whoever told you life was fair?