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I hope to heaven I don't live as long as my mother is although I might but likely would still be in better shape as I take care of myself. However I have witnessed so much sadness visiting 2 AL facilities and 2 SN ones since 2013 not to mention numerous hospitals.
Of course AL ones were far preferable to SN in terms of conditions of residents yet there still were aspects of sadness as residents aged differently.
Now I am content with the present facility in terms of staff and overall conditions of the facility yet there is a resident who is very mobile who walks all over and enters other residents rooms taking their TV controllers along with whatever else one has to figure out has gone missing.
It all makes one feel that there might likely not be alot of grace with aging not to mention that I certainly do not want my children to experience what I have been through.
You make a very good point about the people being like living tortured statues. I can't justify how it's allowed that every cutting edge technology, treatment, medication, procedure, and every heroic measure will be taken to keep some ancient statue alive who is completely out of it and spends their days tied in a wheelchair crapping themselves. Yet some younger person who's life could be saved or improved gets nothing unless they have the best insurance possible or they are rich. It really is disgusting and tragic. Also, you do not have to put your mother's care needs before yor husband's. He's more important. Let hospice put your mother in a hospice facility.
Thank you for your response. My mother is actually in a facility, and I made the choice to stay near her to manage her care and make the end of her life as comfortable and loving as possible... So I must admit this is my choice, made clear-headedly, based on certain circumstances I don't need to go into. I suppose my expression of my frustration of being away from my husband is less a need for an answer, as a reflection that there is no easy answer. I am torn between people I love. And endless treatments have made my mother live far longer than I expected. But I made the commitment by choice, so probably good for me to own that, also.
On the other side of the coin, look at Sister Jean who is 102 years old, Loyola Chicago matriarch and college basketball icon.
She just wrote a book "Wake Up With Purpose!: What I’ve Learned in My First Hundred Years". I've seen recent interviews with her, such a delightful intelligent lady.
I think the Sister Jeans are very rare. My father was a very rare example of a 90 year old. People like them are unusual exceptions. Visit a nursing home sometime. There are plenty of them and every one is jam-packed with elders who have no quality of life at all. Most of them are as wicki100 so rightly described - tortured statues.
No, you are not alone. I have seen this mentioned here before by more than one. My mother lived to 106 so I was caregiving till over 80. She did what she chose in her retirements, travelled, volunteered -and didn't take care of her parents. The last ten years, particularly, of her life I was centered on her care - mostly at a distance but it was still very stressful. It certainly has taken a toll on my health and raised my stress levels. Then there was another 2 + years settling her estate while I got even more behind in the things I had to do for me. I was so relieved when it was over.. Then dd got cancer and in the middle of me getting the house ready for sale to more south which is better for me, sig other has been diagnosed with cancer and is on a list for a knee replacement. I want a holiday!!!
My goodness . So sorry for all your troubles. And hope things go well for dd and sig o. You do need a holiday . Take care of yourself as well . I hope you get to move south .
I agree that people are "living" much too long. Their lives SUCK. They are not happy. They are barely existing. It's pathetic, sad, horrible, etc. My mom did nothing for herself. Very content to sit in her chair and watch tv and have as much done for her as possible. Even when she was able to do plenty for herself. Never heeded my advice for taking better care of herself. Never cared about eating better for her health and well being. Never cared about losing weight. Never cared about being active. It made me so angry that she just let old age wash over her without even trying to improve her situation.
I have learned what NOT to do. Everything she did. And did not do. I am taking care of myself so my children will not be faced with a decrepit mother that won't live her life to the fullest and do what she can do for herself. I used to say I'm never going into a nursing home but after caring for my mother I say B.S. to that. I do not ever want my kids to take care of me. I want them to live their lives as is their right, their due.
At my age, my parents were having fun, traveling, etc. They were not tied down to caregiving. My mom has NO clue what it was like to care for her. She thinks stopping at her mom's once a day to give her an insulin shot was a big deal. OMG it does not compare to caring for someone with dementia. In your own home. Even now that she's in AL, I still have to coordinate so much for her. She mixes up her dirty and clean clothes. She doesn't put her trash where it belongs. She just can't keep track of virtually anything. But she mostly has no idea of what she is not capable of. Thinks it's fine. Except sometimes she knows she's really confused, etc.
Good luck to all of you reading this in putting caregiving in it's proper place, taking care of yourself, etc.
My other big fear …..If I do survive the current round 3 of parental caregiving , will I have anything left in reserve to give if my husband would need me to care for him ? I would want to care for hubby as long as I could . I’m hoping there’s another reserve saved just for spouses.
I feel you on this also. My husband is almost 80 and he just called me and let me know he needs a catheter procedure and I can't be there (he is in another country visiting family), because I'm the only family member willing to care for my mother in hospice. I can't believe my 98 yo mother is coming before my husband... And yes pacemakers are... In my case ... Harmful. My mother would have led a full and happy life and died in seconds at 92 without her life alert and pacemaker the next day. Now she's kept alive, tortured by coughing, incontinence, bend half over, suffering from CHF and essentially drowning in her own fluid. We have to step revering life at all costs. Enough already.
I had that exact discussion today with my BFF. She took excellent care of her Mom, at beginning with some chores, shopping, driving her to medical appointments. Mom had heart surgery some years ago, but already in her 80s, then developed cancer so more care was required. The point is for 15 years or so Mom had excellent care and her old age was peaceful and she was protected and well taken care of both emotionally and financially. She claimed she did not need so much. The truth about silent generation (parents late 80 and beyond) they are not so silent. My GF life is in turmoil now and she probably will not have peaceful and secure old age.
Exactly . My FiL had late in life bypass surgery, only reason he’s still with us at almost 89. Heart is still good . Everything else is falling apart. They aren’t silent . My husband and I say that as well . Hubby is afraid this will go on for years .
No. It's because of my excellent care my mother is now 98 and still going, 4 months into hospice, and now they're telling me I could be another 6 months. Medication and a pacemaker allowed her to survive past the Independent part of her life to loss of independence, at the same time giving me years of anxiety, and robbing me of trips with my husband and tens of thousands of dollars as well as a relationship with a sibling. I really don't think there's a day that goes by without me thinking at least 10 times about how I'll never put anyone through this and I would much rather live a shorter life than put someone else through caring for me the way I care for my mother while she is depressed and angry at her reduced state. All the medications she took kept her alive and seems like a miracle at the time but in retrospect I think we keep people alive far too long only to suffer. Meanwhile we're suffering caring for them during the best years of our lives. That said duty and love prevent me from abandoning her and I feel I'm doing the right thing. But I hope to never put anyone else through this.
I echo your sentiments. No way am I doing this to my family.
My mother had a pacemaker implanted in July. She was very tired and the aide checked her pulse and found it was very low. The aide called 911. My 94 y/o mom went to the hospital where the doctors said her heart could not sustain life and she would die very soon. She did have a DNR. The cardiologist said she was a candidate for a pacemaker. My sisters and I were prepared for her to die and did not want her to have the pacemaker, We felt it was her time, a death from CHF would be a natural end to her life. However my father (who is feebleminded but does not have dementia) was her next of kin and we had to put the decision to him. He did not want her to die and overrode the DNR. So here we are now with her a miserable shut-in alone with 8 hours of aides coming in daily and with my dad's living arrangement now in flux because we are trying to get him into a SNF facility shortly. My mother can go years like this. There is no quality of life anymore. I visit out of a sense of obligation for 30 days every other month and my sisters check in on her and run errands but there is nothing to live for anymore.
Midkid So sorry for your loss . That is so sad about your brother . I have tears 😢. Does he live alone ? I guess he’s not answering the phone either ? If he doesn’t live alone , has anyone talked to someone else that lives with him? Especially if he lives alone, you could ask for a wellness check . It’s so hard on you worrying about him too . Have you left any messages , texts or even a note at his door saying he did nothing wrong and you want to help ?
Now that my mom has passed, I am hoping against hope that my YB will finally get some therapy for the stress-induced depression & anxiety he had as a result of 25 years of CG for first, both parents, and then 7 years of just mom.
He's really a mess and no one can talk to him. I know he has massive guilt and he doesn't NEED to. He didn't do anything wrong!
The fact that he had her apartment completely gutted and trashed, except for the few things that were mementos--within 48 hrs of mom's death. The rest of us sibs just looked at each other with 'uh oh, he's finally lost it' feeling.
I have not spoken to him since Sept 3rd. 5 months. I have gone to the house and they won't let me in. Trying to respect his grieving process, but more concerned about his overall mental health.
He felt like a terrible CG, but he wasn't. We did worry, all the time that he'd have a heart attack--or a complete mental shutdown. His health is terrible and not likely to improve. Caring for mom and dad was an amazingly gracious effort, but it came at such a cost!
My hobby is genealogy, and it was interesting to see how one generation related to the next. Back in the 1800's, farmers had 15-20 children to help on the farm. If a son got married, he and his bride would live in the same house as his parents. If a daughter got married, she and her groom would live in his parent's house. Eventually after time the males would leave their parent's house and start their own farm, having 10-15 children.
Whenever an older parent would lose a spouse, they either stayed on the family farm where the sons would take over, or help out if they already had a farm of their own. Thus, the older parent would live on for many more years, not unusual in my family up into their 90's. There were many hands to help, their own children, grand-children and great-grand-children.
Today's society is more spread out. I notice in my family tree that when a grown child moved to the city in the early 1900's and married, families were much smaller 1-6 children, or no children at all. Those who spent most of their adulthood in the big city didn't live as long as their siblings who stayed on the farm. Plus less hands to help care for them.
Plus the elder parent living on the farm kept themselves busy, helping as much as they could. They weren't sitting in a rocker on the front porch, they were tending the gardens, etc. There wasn't TV back then, so family was entertainment along with gossip :)
Imagine today trying to tear away a cellphone or computer game from the younger generation long enough to even set the table.... [sigh]. Us baby boomers, and thereafter, aren't going to have it easy, unless we have saved of that rainy day big time.
You mentioned how the elders would still help to do what they could on the farm . I don’t understand the sitting in the recliner all day long doing nothing these days . Even if I had to sit a lot I would want to be doing something to help . Help with a meal . shred lettuce, whatever I could do sitting , fold laundry, something .
I'm waiting for BurntCaregiver to show up here! She's great. Time to buckle up, buttercup, because, caregiving is impossibly hard to do, especially if you're not trained in it, not paid, and it's not your profession. Step back from the madness, take care of yourself, get off the roller coaster of madness, the mental whiplash of one day everything is ok and the next minute everything is awful. There are a lot of ways to untangle ones self from this, it ain't pretty, it ain't always "nice", or if those are not acceptable alternatives....call the funeral parlor and pick out your casket. The mortality rate for caregivers is something like 60% or higher. If this is not a group you want to die for, better do some hard thinking and step back. I do not write this lightly. I do care for those who care, but given what I have gone through over the past four years, I hope that folks will take care of themselves and not die to keep caregiving, because, we're good people, we want to do the right thing, we want to be good caregivers. Weeellll.....sometimes....that ain't always possible, given the circumstances we have to deal with. I totally respect each and everyone who is on this road, incredibly hard, thankless work. I am in no way disrespecting those who have chosen how they are handling their situation. I do want folks to be able to say "enough is enough" and be able to step away and say "No More". I know I will have to do that for my husband. It will not be easy to do. I don't want to do that, but....it will come down to the reality of how horrible dementia is and how I am just one person in this storm and can only do so much for him.
I took care of my folks for a decade.I knew I would outlive them but I had high blood pressure and high stress that I worked to keep managed. My Dad died 5 years ago and my Mom died last month. since then, my blood pressure has calmed down (no need for meds) and the constant pressure has released. I grieve but I am more relaxed and peaceful.
Every single carer I know has died before the person they are caring for, although not a child from caregiving for their parent. However, I have known caregivers looking after their parents who end up divorcing, lose all of their savings and/or significant physical and/or mental health issues. All because they made a "promise" that they could care for their parents, even when they aren't equipped to do it. They worry what their parents want rather than what they need and avoid getting any help or putting them in a facility that would be a better solution for their needs.
My own mother has needed care for over 20 years and if I had decided to be her primary caregiver, I never would have met my husband, had kids, enjoyed a rewarding career and life. She has now been in a nursing home for 3 years and is slowly dying. She is not my mother anymore but a husk of a person who can only lay in bed. Even in this condition, people sometimes criticize me for placing my mother. If I were looking after her, we all would be homeless, I would be divorced and never be able to support my own kids.
As people live longer, not because they are in good health but due to intensive medical and pharmaceutical interventions, this will continue. I know I don't want to live like my mother as it isn't living, it is only surviving.
Yes, my parents are dying in tiny bits and pieces. A neighbor of my parents recently asked me how my parents were. I said as well as 94 y/o people could be. She replied that I was so lucky to still have them in my life. I flipped out and told her I hoped I was dead long before I reached this point and that there is a difference between being alive and living . I feel bad that I couldn’t reply that yes I felt lucky. But I just don’t. I won’t be grieving either of them by the time this is over, which will probably be years from now.
There are research studies that state that caregivers do indeed suffer significant medical consequences from their work. Everything from depression & suicidal thoughts to untreated cancer’s & cardiac issues. Then again, lots of professions carry medical consequences…
But when caregiving for a parent there’s something fundamentally unnatural about the situation. Why would someone that spent years protecting & supporting (ideally) a child, turn around years later to impose suffering & detriment to that same child just because they’re an adult now. If you know you’re hurting your family, but do it anyway just because you can, what message does that send? How can someone justify the damage to another’s health & future in exchange for their own current comfort & well being as a fair trade?
What really fascinates me is coming global population collapse as a result of the increasing size of the aging/elder demographics. Meaning the dependency ratio of those working & producing is inverted to those that are retired & dependent. Younger generations are increasingly tasked with elder care, reducing their own economic output & limiting their ability to develop their own families & shortening their own lifespans due to the nature of caregiving. It’s already occurred in Japan as well as a few European countries.
No one seems to question just how much of the “labor shortage” is due to people being forced into family caregiving. And the Baby Boomers have barely begun to enter into dependency/retirement. They’re already the most resented generation in history… imagine what it’ll be like when they’re in their 80s.
I gave up my career to become a caregiver & I’m far from alone. I’m in my mid 40s, and thanks to having become a caregiver, have no inclination to live past my 60s. None. I would much rather die than put any other human through what I’ve endured caring for my parents. What little I have saved won’t be confiscated by a greedy nursing home. I’ll be prepared to end things before any of that happens.
In that sense, caregiving has been a blessing. My eyes are wide open to realities of aging & the realities of the dystopian industrial complex we call medical care.
I agree. It’s a huge problem . People are living longer and need help longer. It’s not really living longer . …. It’s dying slowly
I also worry about my adult childrens’ ability to live the life that they want to live due to the burden , as you described , put on their generation because of the growing number of very elderly .
I have also thought about how I hope I realize when it’s not worth living anymore and how I can check out at that time .
Omg, yes. I dread it. Especially since I have no sibs or kids or SO. And considering that there's Boomer phobia, I anticipate not being welcomed at mosy facilities. This caregiving has been tough, but we do it because of love.
By its very nature - caregiving requires energy that you would normally be expending in another way right? Hopefully on something that you would prefer to do with your time. Even for someone that actively chooses the caregiving role - it takes a lot of time and energy to take care of another human being. If you take someone that did NOT choose to become a caregiver, but was effectively drafted or forced into the role (or even worse is caregiving for someone who was their abuser in childhood.) you can multiple that energy consumption exponentially - because they are realistically taking care of an emotional vampire who sucks the very life out of them.
I think back to when I became a mom. My baby needed me to do everything for her. 24 hours a day 7 days a week. My needs were secondary. I was exhausted. And I was young, healthy, and full of energy. I was ready to take on the world. My body did not ache when I got up in the morning (or longer). I could spring back from a couple of hours of sleep much more quickly. I could eat on the run and not pay for it later. I could jump up and run to the rescue over and over again without giving it a second thought to my own health.
Now in the caregiver role (and I am technically quaternary(?) is that the right word for 4th in line?) I'm twice the age as I was when I became a mom. My SIL and BIL are primary live in caregivers and DH and I are back up. They are 24/7 hands on (when he is home, he is in rehab right now) and DH and I are backup, all things emotional, technical, conflict resolution, transport, doctors appt etc. I am the youngest and the healthiest to put things in perspective (and at this point the only one working full time, DH recently had to take a leave of absence for his own health reasons, as did BIL). And we live an hour away.
Caregiving for us has been occurring over a span of 8 years. In that time - while I certainly cannot say that *some* of these things would not have happened whether we were caregiving or not - BIL, SIL and DH have had to have MULTIPLE surgeries between the three of them that all could be directly related to caregiving duties. Additionally - stress directly contributes to our health - that is a known fact. All three have had multiple NEW health issues that are directly related to stress incurred from caregiving.
In our case- we are unfortunately among the caregivers that were drafted and in the "service" of FIL who was a narcissistic abusive father to both DH and SIL (and quite frankly still is). So for both of them caregiving is incredibly stressful and triggers a number of mental health issues that for both of them were mostly under control prior to the onset of caregiving.
As far as myself - I can tell that it is impacting my health - far less than the others for sure. Because I do my best to avoid him as much as I possibly can, but also because he does not have the ability to get inside of my head and inflict the mental attacks that he can on them. But I can tell you that every single time we have to engage him, I either get a preemptive migraine or end up with one before it is over with. He is combative on his BEST days. I have been on migraine preventatives for years and my migraines are almost completely under control except for certain triggers that I can control (light sensitivity for example). But he is most certainly a trigger that I cannot control.
So absolutely - caregiving drains your energy and impacts your health even under the best of circumstances if you have a wonderful, appreciative, loving person that you are taking care of, who never asks anything of you and makes life a joy. And we all know that what I just described rarely happens. Being responsible for someone else on its own is stressful. But you are not alone in how you feel.
Way2tired, neither of my parents needed to help take care of their own parents, so they couldn't understand the pressure that grown children are placed under.
I remember having a chat with my Dad about how tired I was as I was the only one helping [no siblings, had no children].
I had to remind Dad that when his Mom was his age [Dad's family lived many States away], Dad would fly out once a year to visit, and send money. That when his Mom needed help she had nearby two other grown sons, their wives, and a gaggle of grandchildren old enough to help, and they did. So it didn't all fall on the back of just one person.
My mother has always been an anxious, impatient person. She's gotten worse w/age and I'm less tolerant than I used to be. We'll see who drives who nuts first.
Way, your FIL should not be in an AL. The name says it all, they assist. By law they cannot make Dad do what he doesn't want to do and they don't have the Staff to deal with it. I am surprised you have not been told the AL is not the right place for him.
I suggest you find a nice Long-term care facility that takes Medicaid. Yes it will be expensive, but they maybe able to talk him into getting a shower and having him change diapers. About 2 or 3 months before his money runs out, you apply for Medicaid.
Your husband has a good attitude, if Mom won't be cooperative, then let the State handle her. And he needs to tell her that. Do not take her in to ur home. I think u have enough on your plate.
Thank you. Yes the anxiety builds due to the fact that we know FIL needs to be moved and that he will be angry . As far as MIL ….. After taking care of my narcissistic mother I could never ever take MIL into my home. MIL is another self centered controlling person. All she ever cared about was bragging to friends . When my DH went away to college and decided that that school wasn’t the right fit after all, during his first year he wanted to transfer schools . MIL ( and FIL , they were still married at the time ), told DH if he switched colleges they would not help pay because she already told all her friends and it would be an embarrassment if he left . WHAT kind of parent would do that ?? Not helping pay is one thing , he could get loans . But to actually try to force your kid to stay at a school where he wasn’t happy to save face is unbelievable. A parent should be supportive of a child’s quest for education . When we were planning our wedding , she got angry because she wasn’t getting things her way and said she and FIL and DH side of the family won’t be coming. My DH and I met in high school so I was aware of her college stunt . So when she pulled this threat about the wedding we had enough and eloped instead . We weren’t going to put up with her ultimatums . To this day she acts like we took something away from her. She fails to remember that she said she wasn’t coming . We didn’t talk for years . Then I suggested to DH he may want to have somewhat of a relationship if he’s afraid he would regret it later . Totally up to him . So he did. Fast forward , She was hounding my married son about having a child because she wants to show pictures to her friends . He avoids her like the plague now . MIL also was hounding my daughter as to when she would be getting married , so daughter avoids her now as well . The woman bear crawls up the stairs in her house . Refuses to sell and get an apartment . She’s 86 and her way is the only way in her book .
Yes I feel exactly the same way. I have a lot of stress because I don’t know whether my 94 y/o father will get on Medicaid and be finally admitted into a nursing home where he is in rehab right now waiting for a room in the SNF wing. There is no rehab for him because he is too weak to stand. He had colon cancer, afib, kidney issues, mild cognitive impairment and is in diapers. I am scared to death I will have to bring him back to his home.
i have a 94 y/o mother with a pacemaker and mobility issues. With my father in the rehab, she now lives alone in her home. She is a miserable person who lashes out verbally at her two paid caregivers and her daughters. Miserable being around her.
On top of that my two sisters do not talk to each other, will not be in the same room together, and I have to play the go between.
Yes I definitely think I will drop dead any day now. Some days I think it would be a blessing.
So sorry for the heavy load you have. Have you told the rehab/nursing home that you can not take care of your Dad and he needs to stay there ? Maybe they can help him get placed permanently .
Way2tired, I feel the same way. My parents lived to be 95 and 98.
I am in my mid-70's and am having similar medical issues [inherited] now compared to when my parents had the same issues that started in their mid-80's. I owe this all to stress.
Yup . I looked at pictures of my parents when they were my current age . I most definitely look older and feel older and am less energetic than they were at my age . My DH is in the same boat as me over his parents . He’s aging worse as well and DH is having same health issues as his parents start at an earlier age . So far I only have high blood pressure and high cholesterol that I know of. High blood pressure is not well controlled due to anxiety which makes it go up and down like a yoyo . It scares me which just makes more anxiety . I’ve already had the eye doctor find a hemorrhage near my optic nerve on a routine check up . He was very concerned because of family history of strokes in my family . Neither my or my DH parents took care of their parents. So I believe there is a direct correlation .
Sorry you are feeling this way and for the loss of your parents. Now all the stress with FIL. What's not going well at AL?
If you are feeling like he's going to outlive you, you are burnt out and need to take a BIG step back so you can take care of YOU. Start today. Get hubby on board cuz he's probably feeling the same way.
Thank you . FIL very demanding of our time which we severely cut back on visits which he’s mad about . We can’t stand the stench in his room . We do not take him to our house or out to restaurants anymore . We now started not answering all his calls . He has dementia but therapeutic lies don’t work .He’s been uncooperative with showers , toileting since he got to AL despite all the times we talked to him about it . Sits in his filth and saturated Depends until they leak . Afraid the AL will kick him out or to memory care . Being put in MC will make him livid . FIL is still very intelligent but has no reasoning left , must be vascular dementia . Acting just like my mother did. He wants to go to independent living . He thinks he doesn’t belong in AL. He barely walks , barely dresses himself .
I constantly had this fear when I was a caregiver for my parents.
It hit a peak after my dad died and mom moved in with me. As her Parkinson’s disease progressed, she required more and more care.
I was losing weight that I couldn’t afford to lose from not being able to eat due to stress.
My blood pressure shot up. I was sent to a cardiologist due to a racing heart.
Lack of sleep is awful and I wasn’t sleeping well.
I quit my job to care for my mother full time. I missed working so I became depressed. So many things contribute to our mental and physical health issues.
No doubt, caregiving is the toughest job I ever had.
I lost my best friend last year. We had been friends since high school. She and her husband were taking care of his mom. My friend had a stroke and died.
It’s not unheard of for a caregiver to die before the person that they are caring for.
Best wishes to you. Take care of yourself. Sending you hugs! My dad died at age 85. Mom died at age 95! I spent many years as a caregiver.
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Of course AL ones were far preferable to SN in terms of conditions of residents yet there still were aspects of sadness as residents aged differently.
Now I am content with the present facility in terms of staff and overall conditions of the facility yet there is a resident who is very mobile who walks all over and enters other residents rooms taking their TV controllers along with whatever else one has to figure out has gone missing.
It all makes one feel that there might likely not be alot of grace with aging not to mention that I certainly do not want my children to experience what I have been through.
You make a very good point about the people being like living tortured statues. I can't justify how it's allowed that every cutting edge technology, treatment, medication, procedure, and every heroic measure will be taken to keep some ancient statue alive who is completely out of it and spends their days tied in a wheelchair crapping themselves. Yet some younger person who's life could be saved or improved gets nothing unless they have the best insurance possible or they are rich.
It really is disgusting and tragic.
Also, you do not have to put your mother's care needs before yor husband's. He's more important. Let hospice put your mother in a hospice facility.
She just wrote a book "Wake Up With Purpose!: What I’ve Learned in My First Hundred Years". I've seen recent interviews with her, such a delightful intelligent lady.
Visit a nursing home sometime. There are plenty of them and every one is jam-packed with elders who have no quality of life at all. Most of them are as wicki100 so rightly described - tortured statues.
I have learned what NOT to do. Everything she did. And did not do. I am taking care of myself so my children will not be faced with a decrepit mother that won't live her life to the fullest and do what she can do for herself. I used to say I'm never going into a nursing home but after caring for my mother I say B.S. to that. I do not ever want my kids to take care of me. I want them to live their lives as is their right, their due.
At my age, my parents were having fun, traveling, etc. They were not tied down to caregiving. My mom has NO clue what it was like to care for her. She thinks stopping at her mom's once a day to give her an insulin shot was a big deal. OMG it does not compare to caring for someone with dementia. In your own home. Even now that she's in AL, I still have to coordinate so much for her. She mixes up her dirty and clean clothes. She doesn't put her trash where it belongs. She just can't keep track of virtually anything. But she mostly has no idea of what she is not capable of. Thinks it's fine. Except sometimes she knows she's really confused, etc.
Good luck to all of you reading this in putting caregiving in it's proper place, taking care of yourself, etc.
But I will NEVER allow another recliner in my house !! Already told hubby he’s not allowed to get one .
I would want to care for hubby as long as I could .
I’m hoping there’s another reserve saved just for spouses.
She took excellent care of her Mom, at beginning with some chores, shopping, driving her to medical appointments.
Mom had heart surgery some years ago, but already in her 80s, then developed cancer so more care was required.
The point is for 15 years or so Mom had excellent care and her old age was peaceful and she was protected and well taken care of both emotionally and financially.
She claimed she did not need so much.
The truth about silent generation (parents late 80 and beyond) they are not so silent.
My GF life is in turmoil now and she probably will not have peaceful and secure old age.
My mother had a pacemaker implanted in July. She was very tired and the aide checked her pulse and found it was very low. The aide called 911. My 94 y/o mom went to the hospital where the doctors said her heart could not sustain life and she would die very soon. She did have a DNR. The cardiologist said she was a candidate for a pacemaker. My sisters and I were prepared for her to die and did not want her to have the pacemaker, We felt it was her time, a death from CHF would be a natural end to her life. However my father (who is feebleminded but does not have dementia) was her next of kin and we had to put the decision to him. He did not want her to die and overrode the DNR. So here we are now with her a miserable shut-in alone with 8 hours of aides coming in daily and with my dad's living arrangement now in flux because we are trying to get him into a SNF facility shortly. My mother can go years like this. There is no quality of life anymore. I visit out of a sense of obligation for 30 days every other month and my sisters check in on her and run errands but there is nothing to live for anymore.
So sorry for your loss . That is so sad about your brother . I have tears 😢. Does he live alone ? I guess he’s not answering the phone either ?
If he doesn’t live alone , has anyone talked to someone else that lives with him?
Especially if he lives alone, you could ask for a wellness check .
It’s so hard on you worrying about him too . Have you left any messages , texts or even a note at his door saying he did nothing wrong and you want to help ?
He's really a mess and no one can talk to him. I know he has massive guilt and he doesn't NEED to. He didn't do anything wrong!
The fact that he had her apartment completely gutted and trashed, except for the few things that were mementos--within 48 hrs of mom's death. The rest of us sibs just looked at each other with 'uh oh, he's finally lost it' feeling.
I have not spoken to him since Sept 3rd. 5 months. I have gone to the house and they won't let me in. Trying to respect his grieving process, but more concerned about his overall mental health.
He felt like a terrible CG, but he wasn't. We did worry, all the time that he'd have a heart attack--or a complete mental shutdown. His health is terrible and not likely to improve. Caring for mom and dad was an amazingly gracious effort, but it came at such a cost!
Whenever an older parent would lose a spouse, they either stayed on the family farm where the sons would take over, or help out if they already had a farm of their own. Thus, the older parent would live on for many more years, not unusual in my family up into their 90's. There were many hands to help, their own children, grand-children and great-grand-children.
Today's society is more spread out. I notice in my family tree that when a grown child moved to the city in the early 1900's and married, families were much smaller 1-6 children, or no children at all. Those who spent most of their adulthood in the big city didn't live as long as their siblings who stayed on the farm. Plus less hands to help care for them.
Plus the elder parent living on the farm kept themselves busy, helping as much as they could. They weren't sitting in a rocker on the front porch, they were tending the gardens, etc. There wasn't TV back then, so family was entertainment along with gossip :)
Imagine today trying to tear away a cellphone or computer game from the younger generation long enough to even set the table.... [sigh]. Us baby boomers, and thereafter, aren't going to have it easy, unless we have saved of that rainy day big time.
The mortality rate for caregivers is something like 60% or higher. If this is not a group you want to die for, better do some hard thinking and step back.
I do not write this lightly. I do care for those who care, but given what I have gone through over the past four years, I hope that folks will take care of themselves and not die to keep caregiving, because, we're good people, we want to do the right thing, we want to be good caregivers. Weeellll.....sometimes....that ain't always possible, given the circumstances we have to deal with.
I totally respect each and everyone who is on this road, incredibly hard, thankless work. I am in no way disrespecting those who have chosen how they are handling their situation. I do want folks to be able to say "enough is enough" and be able to step away and say "No More". I know I will have to do that for my husband. It will not be easy to do. I don't want to do that, but....it will come down to the reality of how horrible dementia is and how I am just one person in this storm and can only do so much for him.
I was away from AC forum for a while, so sorry to hear about your Mom.
My own mother has needed care for over 20 years and if I had decided to be her primary caregiver, I never would have met my husband, had kids, enjoyed a rewarding career and life. She has now been in a nursing home for 3 years and is slowly dying. She is not my mother anymore but a husk of a person who can only lay in bed. Even in this condition, people sometimes criticize me for placing my mother. If I were looking after her, we all would be homeless, I would be divorced and never be able to support my own kids.
As people live longer, not because they are in good health but due to intensive medical and pharmaceutical interventions, this will continue. I know I don't want to live like my mother as it isn't living, it is only surviving.
But when caregiving for a parent there’s something fundamentally unnatural about the situation. Why would someone that spent years protecting & supporting (ideally) a child, turn around years later to impose suffering & detriment to that same child just because they’re an adult now. If you know you’re hurting your family, but do it anyway just because you can, what message does that send? How can someone justify the damage to another’s health & future in exchange for their own current comfort & well being as a fair trade?
What really fascinates me is coming global population collapse as a result of the increasing size of the aging/elder demographics. Meaning the dependency ratio of those working & producing is inverted to those that are retired & dependent. Younger generations are increasingly tasked with elder care, reducing their own economic output & limiting their ability to develop their own families & shortening their own lifespans due to the nature of caregiving. It’s already occurred in Japan as well as a few European countries.
No one seems to question just how much of the “labor shortage” is due to people being forced into family caregiving. And the Baby Boomers have barely begun to enter into dependency/retirement. They’re already the most resented generation in history… imagine what it’ll be like when they’re in their 80s.
I gave up my career to become a caregiver & I’m far from alone. I’m in my mid 40s, and thanks to having become a caregiver, have no inclination to live past my 60s. None. I would much rather die than put any other human through what I’ve endured caring for my parents. What little I have saved won’t be confiscated by a greedy nursing home. I’ll be prepared to end things before any of that happens.
In that sense, caregiving has been a blessing. My eyes are wide open to realities of aging & the realities of the dystopian industrial complex we call medical care.
It’s dying slowly
I also worry about my adult childrens’ ability to live the life that they want to live due to the burden , as you described , put on their generation because of the growing number of very elderly .
I have also thought about how I hope I realize when it’s not worth living anymore and how I can check out at that time .
I think back to when I became a mom. My baby needed me to do everything for her. 24 hours a day 7 days a week. My needs were secondary. I was exhausted. And I was young, healthy, and full of energy. I was ready to take on the world. My body did not ache when I got up in the morning (or longer). I could spring back from a couple of hours of sleep much more quickly. I could eat on the run and not pay for it later. I could jump up and run to the rescue over and over again without giving it a second thought to my own health.
Now in the caregiver role (and I am technically quaternary(?) is that the right word for 4th in line?) I'm twice the age as I was when I became a mom. My SIL and BIL are primary live in caregivers and DH and I are back up. They are 24/7 hands on (when he is home, he is in rehab right now) and DH and I are backup, all things emotional, technical, conflict resolution, transport, doctors appt etc. I am the youngest and the healthiest to put things in perspective (and at this point the only one working full time, DH recently had to take a leave of absence for his own health reasons, as did BIL). And we live an hour away.
Caregiving for us has been occurring over a span of 8 years. In that time - while I certainly cannot say that *some* of these things would not have happened whether we were caregiving or not - BIL, SIL and DH have had to have MULTIPLE surgeries between the three of them that all could be directly related to caregiving duties. Additionally - stress directly contributes to our health - that is a known fact. All three have had multiple NEW health issues that are directly related to stress incurred from caregiving.
In our case- we are unfortunately among the caregivers that were drafted and in the "service" of FIL who was a narcissistic abusive father to both DH and SIL (and quite frankly still is). So for both of them caregiving is incredibly stressful and triggers a number of mental health issues that for both of them were mostly under control prior to the onset of caregiving.
As far as myself - I can tell that it is impacting my health - far less than the others for sure. Because I do my best to avoid him as much as I possibly can, but also because he does not have the ability to get inside of my head and inflict the mental attacks that he can on them. But I can tell you that every single time we have to engage him, I either get a preemptive migraine or end up with one before it is over with. He is combative on his BEST days. I have been on migraine preventatives for years and my migraines are almost completely under control except for certain triggers that I can control (light sensitivity for example). But he is most certainly a trigger that I cannot control.
So absolutely - caregiving drains your energy and impacts your health even under the best of circumstances if you have a wonderful, appreciative, loving person that you are taking care of, who never asks anything of you and makes life a joy. And we all know that what I just described rarely happens. Being responsible for someone else on its own is stressful. But you are not alone in how you feel.
I remember having a chat with my Dad about how tired I was as I was the only one helping [no siblings, had no children].
I had to remind Dad that when his Mom was his age [Dad's family lived many States away], Dad would fly out once a year to visit, and send money. That when his Mom needed help she had nearby two other grown sons, their wives, and a gaggle of grandchildren old enough to help, and they did. So it didn't all fall on the back of just one person.
Ditto with my Mom's parents.
My Dad did.
Taking care of Dad wasn’t a problem unless my mother was in the room.🙄
Taking care of Mom was horrendous .
I suggest you find a nice Long-term care facility that takes Medicaid. Yes it will be expensive, but they maybe able to talk him into getting a shower and having him change diapers. About 2 or 3 months before his money runs out, you apply for Medicaid.
Your husband has a good attitude, if Mom won't be cooperative, then let the State handle her. And he needs to tell her that. Do not take her in to ur home. I think u have enough on your plate.
As far as MIL ….. After taking care of my narcissistic mother I could never ever take MIL into my home. MIL is another self centered controlling person. All she ever cared about was bragging to friends . When my DH went away to college and decided that that school wasn’t the right fit after all, during his first year he wanted to transfer schools . MIL ( and FIL , they were still married at the time ), told DH if he switched colleges they would not help pay because she already told all her friends and it would be an embarrassment if he left . WHAT kind of parent would do that ?? Not helping pay is one thing , he could get loans . But to actually try to force your kid to stay at a school where he wasn’t happy to save face is unbelievable. A parent should be supportive of a child’s quest for education . When we were planning our wedding , she got angry because she wasn’t getting things her way and said she and FIL and DH side of the family won’t be coming. My DH and I met in high school so I was aware of her college stunt . So when she pulled this threat about the wedding we had enough and eloped instead . We weren’t going to put up with her ultimatums . To this day she acts like we took something away from her. She fails to remember that she said she wasn’t coming .
We didn’t talk for years . Then I suggested to DH he may want to have somewhat of a relationship if he’s afraid he would regret it later . Totally up to him . So he did. Fast forward , She was hounding my married son about having a child because she wants to show pictures to her friends . He avoids her like the plague now . MIL also was hounding my daughter as to when she would be getting married , so daughter avoids her now as well . The woman bear crawls up the stairs in her house . Refuses to sell and get an apartment . She’s 86 and her way is the only way in her book .
i have a 94 y/o mother with a pacemaker and mobility issues. With my father in the rehab, she now lives alone in her home. She is a miserable person who lashes out verbally at her two paid caregivers and her daughters. Miserable being around her.
On top of that my two sisters do not talk to each other, will not be in the same room together, and I have to play the go between.
Yes I definitely think I will drop dead any day now. Some days I think it would be a blessing.
I am in my mid-70's and am having similar medical issues [inherited] now compared to when my parents had the same issues that started in their mid-80's. I owe this all to stress.
If you are feeling like he's going to outlive you, you are burnt out and need to take a BIG step back so you can take care of YOU. Start today. Get hubby on board cuz he's probably feeling the same way.
Good luck.
It hit a peak after my dad died and mom moved in with me. As her Parkinson’s disease progressed, she required more and more care.
I was losing weight that I couldn’t afford to lose from not being able to eat due to stress.
My blood pressure shot up. I was sent to a cardiologist due to a racing heart.
Lack of sleep is awful and I wasn’t sleeping well.
I quit my job to care for my mother full time. I missed working so I became depressed. So many things contribute to our mental and physical health issues.
No doubt, caregiving is the toughest job I ever had.
I lost my best friend last year. We had been friends since high school. She and her husband were taking care of his mom. My friend had a stroke and died.
It’s not unheard of for a caregiver to die before the person that they are caring for.
Best wishes to you. Take care of yourself. Sending you hugs! My dad died at age 85. Mom died at age 95! I spent many years as a caregiver.