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I have just spent over ten weeks battling with hospital, social workers, care homes, etc. who gave me contradictory information on my mother's needs and prospects (NPD and dementia plus now refusing to eat), all while on anxiety medication and trying to recover from a bad bout of flu. There have been times when I - admittedly a bit of a melodrama queen - wondered if I might just drop dead from the stress before my mum goes. She is finally in a nursing home now but I still have to visit, sort out her belongings, look after her finances and sell her apartment, while offering a part-time home to my brother's teenagers while they are homeless after a bitter divorce. I don't seem to have a life of my own any more.
I read a lot of the replies to your post. So many of us are in the same boat. Feeling like we aren't only trying to go up stream, but have lost both paddles long ago. I can tell you my story, but it's the same basically as everyone else's. My advice though, is to get help. I go to a therapist weekly now to learn to deal with stress. I journal my feelings. I'll also admit that I take meds for anxiety and depression. When you feel all that you are dealing with is too much, get help. Talking to people on here is great therapy, but I know I needed more professional help. And it is starting to help. Everyone deals with things differently. This is what I needed. Find what you need, and follow that.
Nursing home placement time for loved ones to save your life. Sorry, forget about any inheritance, so what good would it be if you suffer health problems yourself and unable to enjoy life with this money?? Let his money spend down go to Medicaid eligibility. He lived his life. Don't let his health issues and his life take yours, too.
Yup , Also retirement money is meant for just that, retirement, including nursing home if needed . I get annoyed when people complain that their inheritance is being wasted on a nursing home . No one should expect inheritance .
I definitely have the same thoughts, there is only 16 years age difference. Needless to say life has been difficult more often than not. If you are a person of faith, hang on to it tightly, it truly helps!
You're definitely not the only one. I'm so envious of anyone who can look at this experience in a positive light. I love my mom dearly and will be devastated when she's gone but over the course of the 17 years that I've been caring for her I've pushed my nervous system to the limit, had suicidal thoughts and developed a life-altering GI disorder, in addition to giving up a great many positive opportunities. People say "At least you'll have no regrets when she's gone." But I have so many regrets now. I regret keeping my promise to never put her in a nursing home. I regret not spending every penny of her money on agency care and getting her on public assistance sooner. I regret sacrificing my own health and sanity for hers. I worry that when she dies I will fully collapse, physically and/or mentally. I am still bound and determined to make room for joy in my life: I have friends, travel, make art. But being her caregiver is hands-down the most self-destructive thing I have ever done.
it's so hard (maybe impossible) to simultaneously, take good care of oneself AND take good care of one's elderly LOs. we human beings tend to favor one or the other. we can't focus on both. i don't know anyone in this galaxy, or any other galaxy, who succeeded.
no one is going to rescue you. please rescue yourself. YOU have been/are amazing towards your mother.
My mom has had round the clock caregivers since last summer. She is steadily declining - vascular dementia, failure to thrive, heart issues, paranoia and acting out behaviors. Has had 2 behavioral health admissions - the first one led to the 24 hour caregivers. Psychiatrist is very good and meds help a lot but she is not a 'zombie'. Prior to last summer, my sister and I alternated "Mom" days. She needed cuing/hands on help for breakfast, taking AM meds, getting dressed. Unsteady on her feet but refused walker. Hygiene poor but insisted that she managed just fine. And take her to our house for dinner and socialization. Draining - not much positive in our relationship. Now I am the second level of caregiver - deal with medical issues, address changes in condition, provide education and support to the CGs, etc. Sister manages all issues related to the aides, and home repairs. Brother manages the money. She's nearly 92, so some sort of issue every week, now. I can be grateful she is not coming into my house anymore. I do visit her, but she is usually not inclined to talk to me. I am finally recovering from being exhausted by her needs and her anger/untreated depression. Got a puppy last fall, keeps me active and laughing at her antics.I do have an autoimmune disease that started when she was coming to my house, and it continues...meds help somewhat. So it can get better when you are not the direct caregiver anymore. I am happy that I am starting to do what I need.
So happy that you see a much brighter future, Little Orchid. You are a caring person, very much deserving of a good life. You wrote a wonderful testimony of how it looks to withdraw to a different level of caregiving and thereby: reclaiming health, sanity, and a future. You are living a better life, and can see that things can even get better in the future. Think of upbeat things to which you can treat yourself, such as your wonderful little puppy! Drives out to see spring in bloom, small trips to new coffee places or shops, a movie out, a community ed class: the list is endless and you are deserving of all the life enhancements that you can think of!
My sisters and I all made very clear decisions about what we would and would not do for Mom. We drew those lines in the sand. We still wondered if caring for Mom in our 60's and 70's would prevent us from ever seeing 80. All 4 of us swear we will not do this to our own kids. That is something that I hear over and over again from those who have cared for parents/aunts/uncles.
Each of us needs to prepare for our own older years while we are still in our middle years. Those who do not should be prepared to self-care until they move into a medicaid facility. It simply is not fair to inflict the burdens of elder care to "children" who are themselves aging. Even though I did much less than 2 other sisters, I can't believe how much easier life is now that Mom has been gone almost 2 years. If you think you are too old to be taking care of your older loved one, you are undoubtedly right.
Use trained personnel in facilities for your loved ones; care instead of doing it yourself. That's what they are there for, to care for ones no longer able to care for themselves, however expensive is becomes.
I can see that. I have done caregiving since I was 17 with my grandparents. I didn't want to do it, but was forced to do it. Everyone else lived so far away, and I was supposed to stay only till I finished Uni. It went on for 13 years with my grandparents health declining with ChF and Alzheimers. I could not leave them. I didn't get to pursue my dreams, work, travel and get married. I vow to never do it again, and my parents too are getting older. I was told to get out of the place I lived in after my grandfather died ( grandmother died three years earlier). I did so much for my shtty family and they threw me away once my grandparents died. They always complain and sht talk about me as a failure. How was I supposed to pursue my goals in life if I have to watch your father 24/7? He can't be left alone with his mid to late stage Alzheimers ( he was violent, spits at you, hits you, talks sht and follows you all day and all night) Imagine that for 5 + years. It drained me that I had panic attacks and can't sleep due to his sundowners. Even though they are gone, it all lingers. I look up at the sky once in a while, and think I am better off dead then alive. It just hurts to be here and exist when I feel nothing.
That’s tragic. I’m so so sorry . Please go to counseling . Take your life back . You did nothing wrong . It’s difficult , but try to move forward . You deserve a better life than you have had.
Way2tired: A discussion ensued when my mother cried about elderly friends and talked about her elderly ailments among other things. I, an elder myself already when I was caring for and living with her, asked her "How many more good years do I have?;" caregiving is tougher when the carer is an elder themselves.
You are not alone. My Mother died in 2018, but there were many times I feared I would go before her. It was so many years of stress, exhaustion, sadness& throughly overwhelming. I don’t want to live to be 94 years old, bedridden, total care & with dementia.
No you are not! I have Fibromyalgia which is a chronic pain syndrome. Four and a half years ago we started seeing cognitive changes in Mom. Even though my sister was living in my mom's house, no one was being realistic about her care. Mom wasn't getting the help she needed so I took over her finances. Then she wanted me to manage her medical care as well, so I moved her in with me four years after I lost my husband. Barely over the grieving process and getting my life together again, I was taking care of my Mom. Mom has been living with me for three and half years. Her health has continued to decline during that time. Last summer we got the official diagnoses of moderate Alzheimer's with vascular dementia. This past Holiday season she collapsed twice due to low blood pressure problems and went to a long term rehab. Center. I felt like I was near death after the Holiday Season ended. At the completion of rehab. She was invited to look at the memory care unit of the facility. In February, we moved her into a memory care unit apartment. She hates it, but I can no longer carry the burden of caring for her physically and financially. She will eventually need to go on Medicaid. Another nightmare as far as red tape. Plus her house, which my sister and her family have been living in, will have to be sold when Mom goes on Medicare. Another pain in the *** I will have to deal with then. I am struggling with communication with caregivers in this new environment, so still trying to understand who to talk to about what problems. I visit her four times a week, but will slowly try to pull that back. Hopefully soon. Have made the apartment as comfortable as possible and continue to decorate it with my own money because all of Mom's money goes for care costs now. Still trying to get my Fibromyalgia back under control and trying to get my life back in order yet again. This has been a nightmare. I love my mother dearly and so have undertaken the very arduous and, for the most part very unrewarding role, of taking on her care and making sure her needs are met. What really upsets me is the state of medical and aging care in this country. The whole system is about ready to fall off the cliff and no one seems to be addressing that in government. Now we have politicians threatening to take away social security and Medicade programs! I don't even recognize my own country any more! I still truly worry that I will not make it....that I might die before my mom. I have been reflecting on this truly devestating disease of Alzheimer's and other dementias. The cruelest characteristics of these diseases is that they last for years slowly taking away everything that makes life worth living in the first place and I worry that this is what I will face in my elderly years. I would much rather drop dead of a heart attack or massive stroke. I just pray when the time comes for me it happens in the blink of an eye. Mom is so afraid of dying she will not agree to DNR paperwork being filled out. This could get so much worse before it ends.
So sorry . I do hope you get your own health under control and get your life back . And all you said is very much how a lot of us feel . I took care of both my parents for years, Dad died of cancer . After Dad’s death Mom’s dementia got much worse. I had to put Mom in AL a year after he died, as she would refuse care , bathing etc . I can totally relate as I had the same resistance from 3 of 4 siblings who did not think my mother needed AL. I was the one looking after her , siblings complained that AL was a waste of money . I reminded my siblings of the years of free nursing care that I gave to both my parents , and the personal earning potential that I sacrificed by working only part time with frequent leaves of absences. And thousands of dollars spent over the years of my own money on food , clothing etc to avoid hearing grief from my siblings that I was spending Mom and Dads money . I managed being a caregiver for a long time but it got more difficult . It’s not easy being a caregiver even when they are in a facility. The effects of caregiving are cumulative and often not realized until considerable damage has occurred , physically , mentally , financially etc . I totally agree that we are headed for a cliff as far as getting the help we need and fear that my children will be burdened . My husband and I have saved decently for retirement ( saved more than most people ) but I still fear it may not be enough if we were to both need placement . We looked into long term care insurance years ago but it was too expensive as we were putting children through college . As you, I fear that we are all headed for a cliff as health care costs will only go up . I agree with you as well that our government is off the rails. They want to raise the retirement age again . Not everyone is healthy enough to keep working at 70. There is an easy fix to social security. Right now SS savings are only taken out of yearly earnings up to $160,000. Anything after that no SS is taken. I have read multiple times that if the cap was raised to about $200,000, It would fix SS for a very long time ( I forget what year ). Raising it would only affect 1% of the workforce. Politicians muddy the waters by telling (all) people that “the other party “wants to take more money from your paycheck “ in order to get re-elected . This has been going on for decades. It’s disgusting how these politicians are misleading to get re-elected . Why can’t they work together for viable solutions? Because they are power hungry and some of them are so old we have politicians in both parties with dementia . I should not have spent my own money on caregiving . And I regret giving up salary that could have put towards savings for my and DH care .
I am making my health a priority. Getting those check-ups, the follow-up treatments, taking medications correctly... Also trying to be wise about lifestyle choices - getting enough sleep, eating healthy, having "time out" so I can relax... - are as important as the "medical stuff." If we do those types of things better, we have a better chance of not only outliving our seniors that we care for, but living a good life.
No you aren't, and having those thoughts is a red flag that you may be taking on more than you can handle. Seek counseling, and get connected with a local social worker or your state's aging department to discuss your and their options. Ask for any help that is available for you. If you can, discuss your situation with your parents and let them know that you cannot handle their care on your own. Their basic choices are in-home caregivers (family or hired or both), or moving to an assisted living/memory care/nursing home facility. Much depends on their finances. It's your choice. If you are not able to perform their caregiving tasks, you need to be honest with them and with yourself. Your responsibility is to oversee their care and make sure that they are being cared for, but not necessarily to be the primary caregiver. All the best to you and your family.
No, you aren't the only one. I started taking my own health seriously over the last couple of years because of this very fear and the, in my mind, certain knowledge that if I kept going at the rate I was, my parent would bury me. The fact is, they can swallow you whole with their need. The stress on a caregiver is so tremendous you almost can't quantify or qualify it. To me, the ONLY answer is to take care of yourself the best you can. If that means making sure you see a doctor, take a walk, get some time alone, etc. then it has to be done.
I've been in many, many modes over the years with caregiving. I'm the "designee" in my family for this work (and it IS work, 24/7 in fact) and during that time I've felt many times I'd be outlived by the LOs I care for.
It's about the toughest work I've ever done BUT is being made better by me taking care of myself and introducing the idea into my mind that I'm worth that care. I'm worth it as much as the person I care for. In fact, I'm worth it even more. They have lived their life and are very old. It's my turn now to take back some of my life. Self care is so key. Best of luck to you.
Just to let you know that my mum died on Saturday, so I *have* 'got my life back', and am working through the roller coaster of emotions that come when a narcissistic parent goes. Regret, relief, sadness, frustration, etc. I want to thank everybody here for their support and advice, which I have found a real lifeline.
Now I just have to try my best to make the rest of my own life more fulfilled, purposeful and love-centred than my poor mother's was. Seeing the need for that is perhaps the best gift she gave me.
You are not the only one! My parents' health crashed and needs skyrocketed as l just began changing my diet to lose weight, get off t2d and hbp meds. Our cortisol levels surge to enable us to cope with stress, but prolonged cortisol exposure is harmful and can cause the very disorders I'm trying to avoid. You sound as if you've passed the threshold into burnout. It's time to save yourself! I began to ask for help, seeing what l could delegate to family, my parents' friends and church community. I had to let go of the idea that "only l can do this." I engaged agencies to do what l had no energy for, such as house cleaning. I signed my parents up for prescription delivery, auto pay of bills and changes their billing address to mine when autopay was not an option. While drinking from that firehose, l made the best food choices l could when too exhausted to cook--buying grocery store prepared meals, the least worst frozen foods, avoiding fast food, etc. Taking care of me paid off. My weight stayed the same, my blood work was within normal limits. Sure, I'm still exhausted and recovering from all that, but it's easier without the burden of real or potential illness. What can you delegate? What physical or emotional needs do you need met right now? I give you permission to stop, ask for help, and meet your most pressing needs now.
A few days ago a family member had a massive stroke. In part from poor lifestyle choices and the other part from caring for an elder for years with no break or life outside of caregiving. Prognosis not so good.
I took care of both my parents for many years. I was very isolated . It was also detrimental to my own health . I was just beginning to get my life back when had to go into lockdown for Covid. Then we needed to take FIL out of his apartment . The past year , alongside my husband have been looking after very difficult FIL in AL. DH and I are desperately trying for some feeling of normalcy . Now my older sister is in need of care . She has a-lot of health issues and is currently on palliative care . She desperately wants to go home from the hospital and not be placed . She lives with her son , he works . As much as I would like to help , I know that it would be too difficult not only because of her mobility problems , but because I just cannot be a 24/7 caregiver at this time . I’m hoping that I still have enough in reserve if my husband were to need help some day .
You are not alone. I have my 84 yo mother who was diagnosed a few years ago. Moved in with us supposedly temporarily when my dad had heart surgery last year. He passed this past September after 6 months of back and forth hospitals and rehab and now mom is with us permanently. We feel she deteriorated faster in the last year. I question myself everyday if I did the right thing. It’s exhausting. Dealing with the bills, medical insurance etc. , doctors, POA. The list goes on. This is a full time job in itself which prevented me from working for months. Still trying to deal with paperwork to deal with my dads car and their home. Tired of just dealing with all of their crap and resent that they never planned ahead. No help at all from my one sibling. My dad had MS for years. even though I have someone coming in to help with bathing etc. for mom there is still a need for care and I have to change my mom clean her when then aide isn’t here. I just don’t want to do it anymore. I feel like it’s taking years off my life. My mother was my best friend and I love her. I miss her because she is no longer the same. I am trying to do the right thing by caring for her since she did so much for me and my family but am reaching my limits and my patience which is not fair for her. I am nervous because my dad died from complications of a bed sore. So I know that hospitals and rehab do not turn patients as they should. My mom cannot walk without assistance. Have a baby camera so I can see her from another room. I am going to start going on some tours anyway to see what my options are. May send her to respite care for a couple of weeks and take it from there. If my mom was herself I know she would never want to put me through this. Hang in there. We do have to take care of ourselves and start making US the priority too. Like an airplane. We need to put the oxygen mask on ourselves first before we can help others. Easier said than done though.
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Perhaps you have had enough of caregiving. Placement of your LO's may be in order. Take your life back.
🍀🍀🍀
Also retirement money is meant for just that, retirement, including nursing home if needed . I get annoyed when people complain that their inheritance is being wasted on a nursing home . No one should expect inheritance .
I have achieved a great and deep happiness.
when I look at pictures of my siblings that weren’t around I see an emptiness and compounded aging.
🍀🍀🍀
it's so hard (maybe impossible) to simultaneously, take good care of oneself AND take good care of one's elderly LOs. we human beings tend to favor one or the other. we can't focus on both. i don't know anyone in this galaxy, or any other galaxy, who succeeded.
no one is going to rescue you.
please rescue yourself. YOU have been/are amazing towards your mother.
I am finally recovering from being exhausted by her needs and her anger/untreated depression. Got a puppy last fall, keeps me active and laughing at her antics.I do have an autoimmune disease that started when she was coming to my house, and it continues...meds help somewhat.
So it can get better when you are not the direct caregiver anymore. I am happy that I am starting to do what I need.
Each of us needs to prepare for our own older years while we are still in our middle years. Those who do not should be prepared to self-care until they move into a medicaid facility. It simply is not fair to inflict the burdens of elder care to "children" who are themselves aging. Even though I did much less than 2 other sisters, I can't believe how much easier life is now that Mom has been gone almost 2 years. If you think you are too old to be taking care of your older loved one, you are undoubtedly right.
Even though they are gone, it all lingers. I look up at the sky once in a while, and think I am better off dead then alive. It just hurts to be here and exist when I feel nothing.
I am struggling with communication with caregivers in this new environment, so still trying to understand who to talk to about what problems. I visit her four times a week, but will slowly try to pull that back. Hopefully soon. Have made the apartment as comfortable as possible and continue to decorate it with my own money because all of Mom's money goes for care costs now. Still trying to get my Fibromyalgia back under control and trying to get my life back in order yet again.
This has been a nightmare. I love my mother dearly and so have undertaken the very arduous and, for the most part very unrewarding role, of taking on her care and making sure her needs are met.
What really upsets me is the state of medical and aging care in this country. The whole system is about ready to fall off the cliff and no one seems to be addressing that in government. Now we have politicians threatening to take away social security and Medicade programs! I don't even recognize my own country any more!
I still truly worry that I will not make it....that I might die before my mom. I have been reflecting on this truly devestating disease of Alzheimer's and other dementias. The cruelest characteristics of these diseases is that they last for years slowly taking away everything that makes life worth living in the first place and I worry that this is what I will face in my elderly years. I would much rather drop dead of a heart attack or massive stroke. I just pray when the time comes for me it happens in the blink of an eye. Mom is so afraid of dying she will not agree to DNR paperwork being filled out. This could get so much worse before it ends.
I managed being a caregiver for a long time but it got more difficult . It’s not easy being a caregiver even when they are in a facility. The effects of caregiving are cumulative and often not realized until considerable damage has occurred , physically , mentally , financially etc .
I totally agree that we are headed for a cliff as far as getting the help we need and fear that my children will be burdened . My husband and I have saved decently for retirement ( saved more than most people ) but I still fear it may not be enough if we were to both need placement . We looked into long term care insurance years ago but it was too expensive as we were putting children through college . As you, I fear that we are all headed for a cliff as health care costs will only go up . I agree with you as well that our government is off the rails.
They want to raise the retirement age again . Not everyone is healthy enough to keep working at 70. There is an easy fix to social security. Right now SS savings are only taken out of yearly earnings up to $160,000. Anything after that no SS is taken. I have read multiple times that if the cap was raised to about $200,000, It would fix SS for a very long time ( I forget what year ). Raising it would only affect 1% of the workforce. Politicians muddy the waters by telling (all) people that “the other party “wants to take more money from your paycheck “ in order to get re-elected . This has been going on for decades. It’s disgusting how these politicians are misleading to get re-elected . Why can’t they work together for viable solutions? Because they are power hungry and some of them are so old we have politicians in both parties with dementia .
I should not have spent my own money on caregiving . And I regret giving up salary that could have put towards savings for my and DH care .
I've been in many, many modes over the years with caregiving. I'm the "designee" in my family for this work (and it IS work, 24/7 in fact) and during that time I've felt many times I'd be outlived by the LOs I care for.
It's about the toughest work I've ever done BUT is being made better by me taking care of myself and introducing the idea into my mind that I'm worth that care. I'm worth it as much as the person I care for. In fact, I'm worth it even more. They have lived their life and are very old. It's my turn now to take back some of my life. Self care is so key. Best of luck to you.
Now I just have to try my best to make the rest of my own life more fulfilled, purposeful and love-centred than my poor mother's was. Seeing the need for that is perhaps the best gift she gave me.
keep recovering, misskate!! :) :) and saving your life :) :).
Now my older sister is in need of care . She has a-lot of health issues and is currently on palliative care . She desperately wants to go home from the hospital and not be placed . She lives with her son , he works . As much as I would like to help , I know that it would be too difficult not only because of her mobility problems , but because I just cannot be a 24/7 caregiver at this time . I’m hoping that I still have enough in reserve if my husband were to need help some day .