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My mom has severe RA and has chosen not to receive treatment for it. This choice comes out of fear and distrust of the medical profession. Over the years, she has become more disabled and in more pain. She will not take any prescription medications. I am her eldest child, her only daughter, and the child who lives the closest. I have had many frank and tear-filled discussions with her about her choice and the many alteratives to it, but she's made it clear that this what she wants to do. The last time I visited her, she told me that the RA has even been a gift, because all of the time she spends in isolation in her home has brought about spiritual feelings and insights (kind of like a monk in a hermitage). She has a husband who cares for her. So, I have done the only thing I can do, which is to accept her decision and try to be a supportive daughter in the ways that I can.
The problem is this: Every time I talk to her, I go away feeling bad in some way. I think her chronic pain and isolation have caused personality changes. She can be quite irritable and judgmental. She has a lot of fears and negative feelings about the world. She has way too much time to ruminate about things (me). I feel that I should visit her more often, but I don't want to, because of how I feel when I'm with her (and sometimes, long afterward). I feel terribly guilty for not wanting to spend time with her. It's just so painful! I have tried different things to make the visits more bearable, such as watching a video series together so we don't have to talk, but even that was a chore; she got enraged once when I ran late because of a doctor appointment (even though I called right away), and extremely frustrated another time when I needed to reschedule. It's like she's forgotten about the common things that happen to people when they're engaged in the world.
You guys are my support group. How do I handle this guilt? How much obligation do I have? It feels like having an alcoholic parent–you love them and want to have a relationship, but what they're doing is so harmful…both to themselves and their loved ones.
Sierra
[user=1037]sierrra[/user] wrote:
The problem is this: Every time I talk to her, I go away feeling bad in some way.
I feel that I should visit her more often, but I don't want to, because of how I feel when I'm with her (and sometimes, long afterward). I feel terribly guilty for not wanting to spend time with her. It's just so painful!
How much obligation do I have?
Sierra–
You have some legitimate concerns here. My husband and I have had similar difficulties with his parents (both deceased now). There was a time where we didn't see them. However, we did want our children to know their grandparents and so we re-established a relationship. For the kids, this was truly the best. My father-in-law developed Alzheimer's and my husband and his brother took care of him (they live close). He died almost 2 years before my mother-in-law. Those 2 years were very special and I'm glad things worked out at the end.
However, my concern for you would be how this situation impacts your health. Since her husband (I'm guessing not your dad) is able to take care of her, I'd probably limit my visits. This sounds selfish, but your obligation is to yourself. Verbal abuse is not a good thing and should be avoided. Try not to feel guilty. It is not your fault that she has RA, refuses pain medication, and is therefore irritable
All the best in resolving this situation–
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
I'm sure that's a very tough situation for you, Sierra, and I am so sorry. Trudi gave you very sound advice, sometimes once you've done all you can it's better to just back away for a bit.
Hang in there……..kim
Sierra,
I second Trudi.
Maybe a frank discussion explaining this to your mom and how you love her but you can't bear her harshness toward you and must, for your own sake, see her less often might cause her to try to be nicer?
Stay in touch with cards or short phone calls.
I'm really sorry you have to go through this. It is terribly selfish of your mother to do nothing to help herself and then make everyone else around her unhappy.
Susan
Sierra – I am not sure that having a frank discussion with your Mother will get through. If your Mother was capable of understanding that, of having that much self-awareness, she probably would not be the type to become “enraged” about you running late…..that's about needing to be in control, a complete disregard for the other person and an inability to recognise anyone else's “rights”. And, from what you've described, I would say her choice not to have treatment is likely to be a great deal more than fear and distrust of the medical profession. People's choices in life give them a 'pay off', however strange that pay off may seem to the rest of us. Your Mother's decision certainly has ensured her a great deal of ongoing attention.
Guilt is an extremely corrosive emotion – and one that is ALWAYS followed by resentment. It's not a pleasant (or a healthful)way to live. Perhaps you could focus not so much on your obligation/duty (which makes it seem like you are being dragged there kicking and screaming), rather on what you choose to do – i.e. 'I choose to visit my Mother because it makes ME feel good as a daughter even though I dont enjoy my time there'. And, when you dont visit, make it because you choose not to. That can be a more empowering way to look at it.
It may also be helpful to separate your feelings for her – i.e.'I love my Mother and I dont like her behaviour'.That can help us make sense of very conflicted feelings around difficult close relationships.
Sierra, I so feel for you. I hope you can find a way to love and nurture yourself in your life and find a way to accommodate such a difficult parent. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Has you mother tried anything for her pain like acupuncture? It releases endorphins, which not only help with pain but also mood. It doesn't hurt, and some people , like me, would come out of my appointments feeling very relaxed and ….well, zen. If her arthritis hasn't been treated, massage therapy might actually be too painful.
My illness has isolated me as well. I don't have a husband to help me, but sometimes I wonder if that isn't a mixed blessing as i am forced to get up and do things for my self. I know this helps me stay more active. It is challenging to remain positive when I'm in constant pain, and the frustration I feel when people want me to do things that I really shouldn't do. The problem is that I (and all of us chronic sufferers) get real good at masking our pain; what our family/friends don't see is the payback we feel the day or days after an event, when everyone has left and we're alone again. Maybe some of your mother's anger is about not being able to do the things with you that she would like, but somehow that anger is getting transferred to you. I'm no psychologist, so I'm probably way off. I'm just relating how i feel when family visits. I love it, but I also dread it because I have to clean better than usual, cook or go out to eat, both of which are stressful, etc. It's very difficult and I usually end up with some pretty mixed emotions. So far I have been able to hide those feelings, esp since i know how difficult it is for my family to visit. But, if I had no anti-inflammatories or pain meds, I don't know how I would be – I don't even want to think about it!:angry:Pretty scary, I imagine! You're absolutely correct in thinking that these health problems change personalities, usually for the worst.
Don't take it personally when your mother seems angry at you. I know it's tough, my parents are starting to need help but won't admit it and get angry when I help anyway. These chronic diseases rob us of so much; it's not just jobs or social life that we lose, it's family relationships as well that get hit hard. Dig deep for that patience, but allow yourself to be angry or hurt by her words /actions. If you can't talk to her about how she makes you feel, talk to a friend, or us. We get it probably better than most. Good luck,
mean as ever, linda
When I'm having a bad day I always warn my kids ahead of time that I'm in a crankypants mood. It takes away some of the tension.
[user=40]Kim[/user] wrote:
Well, it's nice to see Miss Crankypants back. 🙂
I second the motion! 😀
Peace, Maz
[user=1037]sierrra[/user] wrote:
You guys are my support group. How do I handle this guilt? How much obligation do I have? It feels like having an alcoholic parent–you love them and want to have a relationship, but what they're doing is so harmful…both to themselves and their loved ones.
Hi Sierra,
I have a loved one who has chronic progressive MS and has chosen not to take any medications to slow progression, too. I went through a period of sending all the info I could find on infectious causes for MS and all of it was ignored and he just told me he didn't have time to look at it and that his neurologist stated flatly that MS was not caused by infection and to stop pursuing that idea. That and failed early drug trials have stripped him of both his dignity and will to fight. It's absolutely gut-wrenching to be a witness to this and my sympathies go out to you.
The way I have dealt with it is to look within at my own tendency to be a fixer or caretaker. It was a big life lesson for me, but it brought me to the realization that I can only offer information and it's entirely up to another to determine for themselves if it resonates and they want to use it or not. We all have to take responsibility for our own wellbeing, in whatever shape or form we ultimately choose, even if that means not making a choice.
As for dealing with the emotional side of seeing a loved one suffer, I've been thinking about your comparison to alcholism, which is considered a disease. Albeit a chemical addiction and possibly genetic component, too, there is also a behavioral component, which likely is triggered by some fear-based belief system (e.g. the need to numb one's self out in social situations).
I think I have just had to step back in my family member's case and accept his decision not to get any form of treatment and to stop trying to fix that. Sounds like you've aleady reached this point, too.
The question is, how does one deal with the guilt, seeing the other person suffer and feeling helpless to do anything? It's a perfectly human reaction to this kind of thing and I just have to try not to beat myself up that there is nothing I can do to alter the other person's choices. I've decided to just love them as they are and to have as much compassion as I can. However, there's a line between compassion and enabling, I've found in my own situation, because (as in alcoholism), the dysfunction arises when everyone dashes about (in guilt) trying to fix things to keep some balance and harmony, totally ignoring the cause…the addiction (to fear).
Secrets are a big thing in codependent situations…not confronting the real issues and these continue to be a big white elephant in the room until the person hits rock bottom and can somehow start rebuilding a new, honest and fully transparent paradigm for themselves, undertaking a full accounting of their lives and making amends. It's the secrets which keep everyone in fear, because everyone is afraid to tell it like it is. In these sorts of situations…just coming out and talking about the fear can sometimes give it less power. If talking about it is too hard, then writing a letter can sometimes be easier. Revealing the truth of how everyone feels is the only way to let go of guilt, because it's pent up feelings that are at its core and not expressing what is blocking a relationship.
So in some ways, it's two separate issues. Letting go of another person's choices and accepting that, but then also facing the real underlying issues.
You probably know that the pain that drives your Mom's actions is not the real her. She may not realize it, though. Sometimes a person's disease is how they have come to define themselves and it becomes their story, coloring every interaction they have with others….well, if you're in constant, bone-crushing pain, it's little wonder, because it consumes you. But, in every situation, that story is who they believe themselves to be…they live pain in every moment and they become that pain. It's very hard for anyone to wake up to that realization.
Carolyn Myss PhD has a series of audio CD's of her lectures and one of them is entitled, “Why People Don't Heal.” It may not be your Mom's cup of tea, but you might find it helpful. My CD's came as a set and included one a lecture on “Spiritual Madness.” As your Mom has found a monastic seclusion in a kind of enforced spiritual way, she might find this interesting and it may even open her to talking about listening to the other DVD on “Why People Don't Heal.”
http://www.amazon.com/Spiritual-Madness-Necessity-Meeting-Darkness/dp/1564554716
I feel for you, Sierra, and hope some light filters into this situation for you soon.
Peace, Maz
[user=27]Maz[/user] wrote:
The way I have dealt with it is to look within at my own tendency to be a fixer or caretaker. It was a big life lesson for me, but it brought me to the realization that I can only offer information and it's entirely up to another to determine for themselves if it resonates and they want to use it or not. We all have to take responsibility for our own wellbeing, in whatever shape or form we ultimately choose, even if that means not making a choice.
I think I have just had to step back in my family member's case and accept his decision not to get any form of treatment and to stop trying to fix that.
Difficult to do, but so well worth the effort.
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Hi Sierra
I too am an only child and recognise the obligation aspect you are going through. One thing I found with my mother though (she has fibromyalgia and is totally unsupportive of my decision to try every treatment going – especially this one) is that she will not listen to what I have to say … BUT if someone else says it then she listens. I don't understand the dynamic at work in this situation but am thinking perhaps she still sees me as a dependent child and wonders how I could possibly have anything of worth to share with her. I understand the ignoring and saying she doesn't have time – my mother does that too and then wastes copious hours in front of the television when she could be researching her condition as I do. She also minimises the impact the pain and lack of energy cause to her life – saying she is fine and she does her stretches so it isn't so bad. The empty nurofen plus packs in her handbag tell a different story.
I wonder if you lose your hope a bit as you get older. She has had a lot of knocks in her life – emotional, relationship wise, with work and friends. Maybe those cumulative knocks make people put up walls to protect themselves from the potential disappointment if the next 'cure' doesn't work. It is horrible to watch and you must be going through hell to see all this denial. Is there someone who has had success with AP treatment for this condition who could talk with her? And explain the journey they went on – complete with Doctors denouncing the treatment method. The one positive thing I guess is that she has not poisoned her system with the recommended drugs, but that is no use if she won't look at something to halt the progression of the disease.
Sending you a hug from my side of the world – it sucks to be an only child – we can't gather all the brothers and sisters and stage any kind of intervention – we are just lone voices in the dark! Perhaps if you explain to her that you have to back away a bit because it is breaking your heart to see her in so much pain and obstinately refusing to look at options … maybe that will make her listen. Only children have tremendous bonds with mothers so the possibility of you moving away from being with her might motivate her to try something new. Just my five cents worth and again so sorry you are going through this – you're a good daughter to want to help your mum so much and it is obvious how much you love her.
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