I posted this in the "whine" thread earlier....but I think it might be deserving of it's own thread, for those who want to complain or contemplate the issue, and also to share tips on how they got their parents to accept outside help. This seems to come up a LOT, all over the forum. This is what I wrote (slightly edited):
Why is it that so many aging parents don't see how exhausted and stressed out their caregiver children are? Why can't they see how much work this is? Or do they just not care?
I mean, just reading around in different threads - it's not just dysfunctional families, it's ALL kinds of families.
Like, why DO parents insist that their kids should and must be able to do the work of several paid workers? EVEN WHEN THEY HAVE THE MONEY TO PAY?
Why do they get so upset and resistant about allowing paid - or even volunteer - help come in to actually HELP their children?
Why do they insist that their kids be totally available to them, sometimes 24 hours a day, without allowing anyone from outside the family to spell them off?
What was all that "I don't want to be a burden" b.s. for, anyway?
My mom was like this even before her mind started going downhill. So it's not just dementia. It started with me driving 350 km every 2-3 weeks because she refused to hire someone to rake the lawn. (But she'd pay my gas and feed me that weekend....which all cost a lot more than hiring someone!)
I am really grateful for home support. I could NOT do this without them. But it was worse than pulling teeth to get my mom to accept even a minimal amount in the beginning. She still gripes about them coming in, even though they are 10x more patient with her than I am.
If it's payback for raising us, well.....it's not like our parents never got babysitters, or put us in daycare, or sent us to summer camp/granny's house so THEY could hold down a job and/or get a break.
debdaughter - No worries. Peritoneal (PD) is the one done overnight at home. Mom could not manage it at home anymore - she was too confused, plus you have to be scrupulously sterile about it, and she was getting careless. Hemodialysis is the one where you go to hospital or a clinic 3x a week, and have some blood sucked out of you by a machine that cleans it and puts it back. Check - puts most of it back. I think you always lose a tiny bit. You can't do it at home unless you are very wealthy! Enough to have your own machine and a couple of nurses, at least, and a nephrologist on call at all times....plus I'm sure you need to have emergency equipment on hand. (Not sure, don't know too much.) I don't know when mom's dementia started....mom has been good at hiding it. Certainly before she moved here 3 years ago, though I don't know if it was before or after starting PD. But it took a deep nosedive when she switched hemo.
My childhood was very similar to yours, except that my mother is bipolar and my middle sister is schizoaffective. My mother lost a lot of blood when she gave birth to me and had to get a blood transfusion. She got hepatitis from the blood. She was hospitalized for the first two months of my life. My grandmother took care of me during that time. My mother never bonded with me. She resented me. She acted like I was out to get her, which I wasn't.
My mother has been drinking every day since she was 15. She was very manipulative. She played my two elder sisters and I against one another.
When my parents were together, my mother was unhappy being a housewife, so she swallowed a bottle of valium and was sent to the hospital. She survived.
My parents divorced when I was 10. I was living with my maternal grandmother at the time. One day, my dad came over when my grandmother was out working. He told me that my grandmother didn't want me living there, and took me to his mother's house. My father told my maternal grandmother that I didn't want to live with her anymore. I didn't know. It was almost summer vacation. I lived with my father and his mother for a couple of months when my father told me that girls should live with their mothers. He took me to my mother's place where my sisters were living. I was still only 10 at the time. I had to beg my mother to take me. She refused. My father took off and she had no choice. I didn't see my mother often. She was out, going to graduate school and then teaching. She came home late. She never talked to me. When she passed me in the hall, she called me names. My sisters and I each did our own laundry, cooked our own food, washed our own dishes, ...
I stopped seeing my father when I was about 11 because I found out he had sexually abused my eldest sister. When I was 12, my eldest sister went to live with friends because she was scared of my middle sister. Then, it was just my mother, my middle sister, and I. We moved to another house. I lived in the closet because it had a lock on the door. My middle sister was a lot bigger than me. She would have violent outbursts for no reason and beat me up. So I lived in the closet and came out only when she took her daily showers. Her showers lasted for about two hours because she has OCD in addition to being schizoaffective. I was terrified of my middle sister. Things got a little better when my middle sister was institutionalized. My middle sister returned a year later, looking drugged and a lot calmer. I left and got married when I was 18. My ex was my knight in shining armor. At about 35, I saw my mother for the first time in 15 years. I found out that she and my maternal grandmother thought that I had called my father to take me from my maternal grandmother, which simply wasn't true. All those years that I could have been living with my grandmother and not my mother. It still makes me cry when I think about it. I loved my grandmother so much.
Anyway, thank you for telling me that you love your mother. For many years, I hated mine. I didn't see her for 15 years. I've seen her several times after that for a couple of days each time. I now have a better understanding of her. I can feel her pain.
I would not expect your mother to understand what you went through or even what you are going through. My mother has no idea how horrible things were for me when I was growing up. She's an alcoholic, so she never will.
I find that many people who have never had kids don't really understand what it's like. They will talk about having nieces and nephews and babysitting. But it's not the same. Of course you might be different. We are all different. But I thought you didn't understand because you seem to be complaining a lot.
I've been through a lot. At first I was very angry, and I complained a lot. But after getting inflammatory bowel disease, these things don't bother me. I was recently bedridden for a year and then for a half year about a half year later. I've been healing for the past eight months. I'm just happy to be able to walk again and go outside. That's what I say to myself every day. I'm so happy to be healthy and alive. I remind myself, and things don't seem to be a big deal.
A psychologist might be able to help you get over your past and handle your present situation.
I will be deleting this post. I don't like talking about my family in this way. But I thought you should know.
I have been through Al-Anon and counseling several times over the years. I will never say no to more "talk therapy," but that's all it is. I feel the same about the forum and other writing, and I am much better writing out my thoughts than speaking them - it's all a form of "talk therapy." One is not much different from the other, and not all psychologists are good at what they do, either.
As for handling my present situation, everyone around me - doctors, nurses, social workers, home support workers, friends, my brother - tells me I am doing an amazing job. Just because I have feelings about it all, that doesn't mean I'm not managing well. Just because I have feelings doesn't mean I won't weather the storm and come out a better person for having done so, either.
After 49 years, what I really need is for the chapter of my life where my parents are in it to be over - harsh as that sounds - and to move forward into healing my relationship with my brother and living my own life. I will not abandon my mother while she is so ill, and especially now, when she has so little time left. My mother has less than 6 months to live and requires full-time care. But I've done the bulk of my grieving, and I'm ready to move on.
One important thing I learned through Al-Anon and counseling is that keeping family issues hidden or secret is how they fester inside you and inside the family, like an infected wound. You tend to think you are alone, and then other people tend to think they are alone, too. Keeping it "in the family" is a hallmark of my family. Pretending everything is fine, never letting anyone outside the family know how bad things really are....I no longer live in that lie, and I haven't for decades.
I believe in being open about my family troubles because it helps me get my feelings out instead of stuffing them down inside, where they start to affect my emotional and even physical health. It also helps me access the social support I need from other people.
I also believe being open about my family troubles may help another person deal with theirs at some point. This is something I learned to do in Al-Anon. In Al-Anon, we all learn that we're not alone, and that helps us get through the dark times. For this reason, I strongly urge you not to request deletion of your comment. Our family of origin stories affect us for the rest of our lives, and those of us who have been through difficulties will spend the rest of our lives healing from them.
My mother has chosen to live in darkness, all her life. I chose to live in the light. I cannot bring her into the light, as she refuses to come. I refuse to get sucked back down into her darkness this second time around. There, in a nutshell, is where we clash.
I get through the clashes by complaining about them to someone besides her, because complaining to her is pointless at this point in her decline. I complain openly here. I do it because it's safe and anonymous, so no one in my real life knows the things I say. My mother's dignity and privacy are protected, and her feelings are spared. I'm not ashamed of complaining or venting here. When I do it, I am freed from the weight of all those negative feelings, and then I'm still able to give her the best of myself.
I've actually been very happy in my adult life. I settled near my father and stepmother in my mid-20s, found "home" and "community" here, and so remained here after they both died. I came through a near-death illness myself over 10 years ago, and the result was a positivity and an enthusiasm for life that was practically blinding to others. However, the day-to-day presence of my mother and her darkness since I moved her here in 2015 - thinking I could care for her as I had cared for my father and stepmother - has brought me quite a lot of unhappiness. I can nail it down to that moment, when my happiness started to unravel.
When I tell you there's nothing I can do about that, I'm not trying to reject solutions or attitude re-setting. Me - I have moments of happiness, and I have zero doubt that I will be happy again. I'm telling you the problem is not me, it's my mother. When she is gone - again, this sounds harsh, but it is what it is - I will be free from the burden of coping with her darkness.
I'm not ashamed of feeling that way, either. The reason I settled here and not near her is because I didn't want to be around her way of existing. The reason I brought her here is because I knew it was the only way she would get the kind of care she wants and needs in her final years. And to be blunt, if I hadn't brought her here, she would be the kind of person who would wither away in weakness and frailty, refusing to admit anything is wrong, refusing to admit a need for help - then fall down or have a stroke or something one day, and suffer alone on a floor until someone found her or until she was dead. Or my brother would have put her in a care home, where the loss of privacy and solitude would have hastened her decline.
None of this signifies a lack of love for my mother. She is not a monster. She is a human being with a terrible burden of her own to carry.
I regret bringing her here sometimes. But on the other hand, I don't think I would change it. Without this experience, I would not have the resolution over my family history that I am now gaining. Without this experience, I would not be on the road to rebuilding my sibling relationship. Without this experience, I might still be terrified of my impending orphanhood, instead of looking forward with excitement to my future alone.
Any good therapist will tell you that you can't ignore your feelings or pretend they don't bother you. They'd tell you that you have to experience them, move through them, in order to let them go - otherwise they will keep chasing you until you finally let them in. That's why changing my attitude isn't the answer. I can't just pretend the feelings don't exist. It's great that you can push your feelings aside and force a positive attitude on yourself, but I think experiencing all the feelings as they are - even the negative ones - is where true depth and personal self-awareness is gained.
I thank you for sharing your story, and again, I urge you to leave it in place, in case there is someone else out there who needs to know they are not alone.
There is too much sugar-coating of caregiving, and too many saccharine statements by so-called experts to the tune of "Of course we all want to the very best we can for our parents, and make their final years as lovely and comfortable as possible." In our culture, we are pressured to take on the burden of caregiving and pressured to pretend that it's a joy and not a burden. And I think the more we bow down to these expectations, the more difficult we make it for others to honor their own truth and come to grips with their own conflicted or negative feelings about their parents or about caregiving.
I'm in the same spot as you Dorianne - I'm unhappy with the fact that I moved here to help my mother, yet I don't think I would change it if I could. Leaving her to fend for herself was really not an option for me. I am looking forward to a life that does not revolve around her needs, but right now like you I'm committed to staying the course.
My children have told me that they will care for me in my old age. Of course that may never happen. I might die before my husband. But when I read your posts, I get upset because I don't want my children to feel the way you do and complain like you do. I know I wasn't a bad mother, but that doesn't mean my children won't think I'm a burden.
I can't live in a nursing home or similar facility. I have an autoimmune digestive disease and am on a very strict diet. There's no way a facility will be able to accommodate my diet. I've told my children they can hire someone to help out. My FIL hired someone to help out with his wife. My ex hired someone to help out with his mom. But I will still need to live with my children if my husband dies first.
Carla - Oddly enough, in thinking about this discussion, I've been reminded of what happens in forums when parents dare to say they have regrets about having children. You are just not ALLOWED to express those thoughts, even if you do so completely anonymously and away from your children. If you DO express those thoughts, you are jumped on and attacked as a selfish, unloving, uncommitted, bad parent! Which is so often the opposite of the truth! So even when people love their children and are committed to the path they struck out on, they still go around thinking they must never, ever admit to wishing they'd made a different choice in life.
I think it's a little bit like that - admitting you don't love caregiving your parents, or don't like it, or wish you'd made a different choice....some people look at these sentiments and automatically assume that we hate your parents, that we want to put them in a home, or that we're in it for the inheritance, or whatever else people accuse us of. So to me, it becomes even more important to admit that I don't love this, and that I regret this choice sometimes, and all of those things....because it's important for others to know they're not alone.
soccer - I don't know, it changes daily because of the effects of renal failure and dialysis. Based on the stages, I'd say THIS WEEK it probably ranges between severe and very severe. And we got here quickly - because of renal failure and dialysis, it's progressed much more rapidly than "normal" dementia, which is what I was told to expect.
Subduedjoy - I appreciate that you feel insecure about your future, and I understand that it makes you uncomfortable to read my posts. But your situation has nothing to do with me and my mother. I have no power over you, your relationship with your children, or your life. Please stop taking what I say about MY life, MY mother, and MY relationship with my mother personally. You are making my feelings and my outlook about you, and have made some wrongful assumptions about me in the process.
One thing I've learned over the years is that whatever makes me uncomfortable is usually the thing I MOST need to unpack and examine. I suggest that you examine what's going on in YOUR family life that makes you afraid your children will feel what I feel about caregiving, and what many of these other commenters feel, despite your good relationship with them. Address it with them NOW in order to prevent that outcome. And maybe keep in mind, if you can get past feeling defensive about being a mother who will need caregiving, that there are some valuable things being said by caregivers here and now - things that could help you in terms of what issues may be expected to arise, and what you may need to get a handle on in advance.
debdaughter - I honestly don't know if mom had dementia before dialysis, because she lived in another city and has always had a tendency to hide things. It's possible. But the renal team members have all told me it's not unusual for elderly people on in renal failure and on dialysis to experience the onset of dementia, and that it's not unusual for renal failure and dialysis to rapidly accelerate the progression of dementia. Edit: in my mom's case, the nephrologist believes each one may be affecting the other, like an endless loop. My mom's growing refusal to eat nutritious foods is caused largely by her mental incapacity, but her poor nutrition causes her mental capacity to decrease further - the nephrologist calls this development "metabolic derangement."
"But when I read your posts, I get upset because I don't want my children to feel the way you do and complain like you do."
It's pretty obvious to me. If you don't understand my last comment, then maybe you just need to stop reading what I write.
Pertaining to this forum, I know I have to look ahead and prepare for my own care. I had read somewhere, ages ago, that parents do themselves a disservice because they assume their kids will care for them in their old age. They don't plan beyond that. We all know here that can't always happen. Childfree types know there's no one to care for them so they have to plan.
My kids actually want to take care of me. At least they say they do. And if I choose one over the other, the other's feelings might get hurt. My children have seen my ex's mother take care of my ex's father and their aunt take care of my ex's mother. Neither of their grandparents had dementia. My eldest has seen her MIL take care of her mother, who had dementia. So it's not a case that they don't understand what they would be getting into. On the one hand, I'm looking forward to being with my children. On the other hand, I'm concerned about burdening them. But then it might never happen. My husband might outlive me, though I don't know if his daughter would take care of him or how she would feel about it. The best I can do is to eat lots of veggies and good fats for my autoimmune condition and my brain.
I had my kids because I wanted kids. Kids are great!
I do hear back from people who say they definitely wanted kids, though. And for sure I've had people try to convince me that I HAVE to have kids....I don't really tell random strangers, lol, so mainly friends....especially around the time I got my tubes done (they were trying to talk me out of it). It's funny how often their argument ended up being, "But who will look after you when you're old?" As if that's some kind of guarantee. I dunno....it just seems kind of selfish if that, in particular, is your rationale for having kids. (And yeah, it does seem like quite a risk to plan your entire old age around that. If my mom had only had my brother, or if I'd died that time I got so sick....she would definitely be in a care home right now, probably against her will.)
Anyway....yeah, I think people like you and I hear about people's regrets because we make it safe for them to talk about it. It does seem to be mostly other parents jumping down the throats of those who express second thoughts.
Seems to be the same way with caregivers. I do find tremendous support from people who've decided they can't look after their parents at home - I'm pretty sure they've already been through all the arguments in their own heads, so they "get it." And of course, lots of people who caregive at home understand that kind of caregiving isn't something everybody can do. But whenever I see someone make a comment about how people who don't caregive at home are selfish (not just here, but also in other threads), it's invariably someone who is doing it/has done it themselves.
Anyway, we've been cooking salmon a lot, cooking with avocado oil and with coconut cream, coconut milk and coconut oil. I was thinking that my FIL might have Type 3 Diabetes, and I was merely hoping that the good fats would reduce his brain deterioration. It turns out that they have been helping his brain to function better, a lot better :) As for myself, I've been having issues with word finding, spelling, and pronunciation. The good fats aren't helping me. But my issue is with inflammation and gut dysbiosis, so I guess that's to be expected. So I've been working on using diet and supplements to reduce my inflammation and add good bacteria, but it's a slow process.
Please don't be offended but are you going into menopause? Those same symptoms happened to me when I started and I know they are documented problems of "the change of life".
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Dorianne,
You are/were smart to recognize that having children is not for everyone. Why have kids when that's not part of your life plan. SO many people would have been better off NOT having them (possibly our folks included but we're happy we're here!)
My parents were alcoholics too, divorced when I was 5. I always felt "in the way ". When I married my ex, I didn't want kids either. (I was codependent with my dad-he controlled me). I had to go to therapy and Al-Anon for a long while to get him out of my life so I could be "normal".
The man I married was chronically depressed (I didn't know-I was only 20). We decided when I was 32 it was now or never. We had a baby boy who turned out to have a higher IQ than either of us! He was in the gifted and talented program all through school. He was going to be a research scientist......that is until he got hooked up to OxyContin then heroin. That was 10 years ago.
He has graduated from college with honors but I doubt that he'll ever use his degree in BioMed. It's such a shame and I'm heartbroken. I sacrificed everything so he could have the "normal" childhood I didn't. We don't talk, most of the time, he has a hair trigger fuse and I hate fighting. I've had to let go of the one person I wanted to hold onto for the rest of my life. It's incredibly painful.
Would I do it again?
That really depends. I don't have a crystal ball to see the future. But, if I knew that he would get "clean" and we could have a relationship, then
yes. I'd go through what I've endured (10 years of hell).
If he will be a "junkie" 😿 all his life and we'll never repair this, then no. The price of having him is too high. Janice Joplin sang a song, "Take another piece of my heart now, baby."
Between his addiction and my mom's Alzheimer's my heart is sawed in two.
Most days I try not to think about him. I have nothing in my house to remind me of him. It just hurts too much. If I do think of him, I'm in self preservation mode. A closed heart can't be hurt.
But I do pray for his addiction to end and visit me before I die. God does amazing things but crossing someone's free will isn't one of them. Son will have to want to quit. I have offered any kind of help but have been turned down.
Having kids is "like a box of chocolates, you never know what you're going to get."
I've been treating my migraines successfully with diet, hydration, supplements, and sleep. I also avoid bright lights.