Hi all, I was debating posting this on the depression or family part of this website but thought here would get a better response.
I have PMR and my son cant get his head around it.
Normally very, very close he's now become distant, not very talkative and seems to be avoiding me in certain situations.
Everythings fine via email/text but when we get together he cant even watch me get in or out of my/his car. He says he doesnt like to see me limping or struggling, it upsets him
Id like to have an in-depth discussion about my illness but he wont. He says (quite cruelly) that hes not interested in knowing about it and quote said yesterday "its just one day nearer to your dying" which I thought was a very odd thing to say.
Hes not an unkind lad and this behaviour is very unusual. I think he thinks PMR is going to shorten my life and hes just counting down the days or something.
Any help as to how I can approach this without upsetting him?
Thanks
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Wow - this is a difficult one! Your son is frightened of loosing you. Won't he sit down with you and talk to you? PMR is a nasty illness but it usually calms down and then goes into remission - it doesn't "kill".
tried to tell him that. no, he wont sit down and discuss it at all, says hes not interested. (thats his way of dealing with it, by being unsympathetic).
It's a pretty tough situation that you find yourself in and made even more heart breaking that someone you love and care about seems to be struggling to accept your illness. In a freaky sort of way I can relate to your situation, right from the off I couldn't understand this illness and felt that I was entirely alone,I had such pain but didn't want to make a habit of complaining. My wife eventually told me that she disconnected emotionally because she could see the pain in me but couldn't take it away.
Maybe that's how your son feels ? Somewhere inside he will be suffering from seeing you in pain,the mum he loves who has always been there for him now struggling with this terrible disease ?
My advice would be to write him a letter and try to explain what this illness has done to you,how it makes you feel,the everyday pain etc,and who knows ?he may just begin to understand a little more.
I do hope that you find a way to reach him,those who suffer with this terrible disease need others that we can turn to when needed.
what a good idea. thanks v much for taking the time to reply
"Any help as to how I can approach this without upsetting him?"
Yes, go to FAQ's and send him the link to the You Tube video 'You Are NOT Alone" specifically made for family, friends and work colleagues. We had found that what you are going through happens quite often especially with auto-immune illnesses.
Just send the link and ask him to watch it. It might just work for you as it has for others.
You don’t say anything about yourself in your profile, but do you another family member or friend of the family who maybe understands your illness a bit better and could talk to your son.
I think some children have a tendency to expect their parents to remain the same as they always were…and find it difficult to accept it when they aren’t. When that happens, you sometimes need a mediator to help.
i didnt think details about myself were relevant to my query. no there is no one but thanks for replying.
The only relevance is where you are living…there may be different agencies available in different countries, and whether you live alone or with other members of family, or have other medical issues ….no other ulterior motive for asking.
This is really hard and I can relate to your problem. I have two adult sons, and not to stereotype, but I think sons have a much more difficult time dealing withdifficult emotions involved. I’ve had some success with writing letters. At least I feel I’ve communicated information. Doesn’t always mean you’ll get a response, but it allows them to read in their own time and in privacy, not as intense as a face to face confrontation. Please keep us posted. I know this site isn’t for family therapy, but family issues certainly can pile on the stress and stress has caused me to flare. I think it’s helpful to see if others have useful tips.
There you have it. He is clearly afraid of losing his strongest most reliable person. He perceives you as so powerful and omnipotent that he believes that you are allowing this catastrophe to happen. I am sorry that this is so painful, your son has clearly regressed into child mode. Perhaps he would agree to have a few sessions of therapy with you to help him to come to terms with your illness? He is terrified.
He thinks pmr is one step nearer your dying... he is very afraid of losing you and can’t bear discussion in case it confirms his worst fears. To watch a loved one in pain is distressing & frightening for him & clearly he’s at a loss coping.
How well controlled is your pain? you don’t say where you’re up to in your pmr journey & how you are at the moment. If pain is an issue then addressing this may help your mobility & quality of life and in turn he can take a more positive outlook on your pmr and hopefully on your relationship. Hope you find a way through. Best wishes.
It often happens that the people we are closest to have the hardest time dealing with a change in our health. The first thing to get your head around is that you are not responsible for their feelings. Even if it's one of your adult kids, they have to come to terms with reality in their own time and in their own way. You can't force it and you can't hasten it.
What you can do is help them to feel less helpless. Give them specific tasks to do that you now find difficult. Ask them to scrub the tub or flip the mattress or change the lightbulb in a ceiling fixture. Have them bring something down from the attic or up from the basement. Give them a shopping list and have them haul it all in and put it all away.
Others have given you many ideas as to how to deal with/ help your son. But I have latched on to your statement ‘he doesn’t like to see me limping or struggling’….
Did you used to be in less pain on a higher dose of pred? Are you on enough pred now?
What lovely comments you all make! I am not very good at showing sympathy, so I think I can understand your son's reaction. Getting him to help practically is a good idea, but avoid getting dependent on him by asking too much as this will provoke a negative response. Try to get him on his own for example go out for tea somewhere, then gently introduce the subject and try to get him to open up. Clearing the air can only help both of you.
You haven’t said how old your son is and I think that is very relevant. He is very frightened of losing you. Perhaps you could just say that this illness doesn’t kill people, it just makes them feel very poorly. He needs to talk to someone, if he can’t talk to you. Maybe he has a friend or relative he can be encouraged to confide in, or a professional counsellor.
I have a feeling that he is suffering from some pretty mixed emotions as he is harbouring the fear he may well inherit the condition and has gone into an avoidance/denial mode. Avoidance and denial is a phase of the bereavement process so in a convoluted way he is demonstrating that you matter to him even though the condition is nasty but not a killer. I think he needs to see you enjoying the parts of life that you can and hat will demonstrate that a condition does not define you.
Oh poor you, My heart goes out to you. He just wants you to be fine fit and healthy forever. Children do have a hard time coming to terms with parents not being as well as before. I remember one time expecting my mum to walk somewhere with me and she was struggling, even though she had mobility problem all her life, she then pointed out she was 72 years old, it suddenly struck me how awful I’d been to expect her to walk the distance I was expecting .
He will come to terms with it eventually, don’t expect instant results but it will happen. I think it’s best not talk about it as it’s obviously upsetting him, he knows, he just wants it go away.
While I can not offer any advice all I can offer is my similar experience from my daughter in her twenties who lives with us and is a very kind and empathetic person in many areas of her life. It is very strange how she has reacted as far from offering any help or even just once asking how I am, she behaves like she is just annoyed and irritated by me. I do show an interest in her life and try not to complain but like you I struggle to move around and do spend a lot of time talking to my wife about it and the way forward with treating it. Interestingly we were talking once about some elderly people - I am in my fifties and don't regard myself elderly though I do feel it increasingly with this illness - she talked very strongly about her fear of aging and how awful she said being old must be - my wife and I were very positive about being old and how some things can even get better such as appreciating what is of value in life but she got very worked in the talk. I am wondering if it all does come from fear of their own aging so they put a wall up? I haven't found trying to ask her to help does works as she looks very grumpy when she does - I feel these things have to come from them. Perhaps it is just a case of time and trying to show them you love them. I do think what others have said about getting them to understand how bad and debilitating it is would be valuable - though I feel we have told her but that just aggravates her more!. Like you said and others, that he is more than likely scared of losing you and feeling insecure in his own life. Often how people respond is down to where they are in their life and how happy and stable they are - perhaps things aren't too good with him at the moment? Try not to let his reaction to you get you down, he will probably sort out his mixed up feelings in time as it tends to get in a viscous circle if they know you are feeling negative about the way they are behaving. Have ended up giving advice which didn't mean to do! As I've read so many times and again think others have said here - you can't change what others do, only how you react.
I have a son that treats me in a similar way. Totally ignored when in his company and not trusted to look after his children (8 and7). Fine on face time. He doesn’t wish me dead just ignores me
Good that you have FaceTime, but nothing beats real human contact, does it?
During lockdown I built on FaceTime by sending small items like packets of pens, magazines and so on to our grandson. I don’t know how much he understood of it ( he was only three at the time) but it made me feel I was more physically present. Similarly I’m becoming the person who sends cards, flowers, beer even (!) to adult children and friends whenever I have an excuse….lets them know I’m alert !!
Also I find that my children love it if I can tell them about things I’m doing/reading/ watching on TV. I think it makes them feel more confident about my ability to manage, and less worried that there’s something they should be doing for me.
Sorry, I’m sure you know all this!
Good luck, i hope your relationship with your son develops along positive lines 😊
I think your son's remark about your being one day closer to death is very revealing. What we hear and what the other person has said are often miles apart; you (as a vulnerable sufferer needing love and understanding) heard it as a cruel, insensitive remark, whereas probably your son is in shocked denial about facing up to the reality of your illness and was speaking truthfully out of his fears for both your futures. He will be all at sea as to how to respond, our children can react with sympathy/compassion and want to know all about PMR (this can also change with time!) but also resentment and anger and would rather try and ignore it.
Emails are good connections, it takes the pressure off him to produce an instant reation and as you were very close I'm sure his kindness will gradually take over from his fear. Just be yourself, a conversational email with a bit of background on PMR and how you can understand his reluctance to deal with this change, and I like the suggestion from GG about maybe having a practical role to play which will help him deal with the more disturbing mental reactions he's going through. It's just another way back to being close again. Gently does it. Good luck.
Others here have made some relevant suggestions. I particularly like the idea of writing a letter, or texting him as a way to communicate with him to inform him of the “PMR”basics, followed by how you are managing it. The better you feel with the dose of pred you need, the more he can see his mom functional, which hopefully leads to more decent rapport between you both when together organically.
Everyone responds to the news that their loved one has a chronic illness, differently. The early months are particularly challenging when you are adjusting to a “new normal”, while mourning the loss of your old life. You may have ideas how others react, even expectations about their support, however there’s no real guarantee how they will respond. You cannot control their response/feelings, only how you will react. Over time, when our loved ones learn this condition is not fatal, and can be managed, they are more able to accept the adjustments you may need to make.
My husband was naive and just thought I needed to exercise more in the 5 months before I was diagnosed. Meanwhile as time marched on, and the symptoms worsened, I worried more that it was something more serious. Not a good scene for two newlyweds who had just retired and bought a house together. Eventually, though, it got much better.
My best friend, who I’d assumed would be a great support, was awful, and jealous when I changed my eating habits/lifestyle and lost 30 pounds (she is overweight). I could no longer deal with her criticisms and sarcastic remarks so after a year of trying I ended that friendship. We who have PMR need to avoid such stresses if possible.
When I got Covid last May my adult son LOST IT! Panicked because he knew I was immunocompromised. My daughter, although worried, remained calm and checked in on me daily (by phone of course). Two adult children, two different responses, but both showing their love and concern in their own way.
You are in a difficult spot for sure. If/when you do get to a place of face-to-face discussion about your PMR, perhaps a professional could help facilitate. They could meet with you separately and discover common ground between the two of you, and help you both find a way to share your feelings in a genuine way. Please remember that the ways things are now, is not how they will be forever. Hope is important on this journey.
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Is it PMR, or GCA or neither? 
Rheumy - grrrrrrr!
"Yes, you really did say that"
Azathioprine? Latest offering from rheumy
