Diary of a Bad Daughter?

Today my blood pressure was so high, I was having trouble concentrating. When my Project Manager asked me was I OK, I was a bit surprised as I wasn’t aware that anyone could tell I wasn’t quite right, but she is blind and she ‘sees’ things that no one else sees. She can pick up a mood or vibe in an instant. So when I blurted out to her I think my BP is high, and all of the issues relating to that rise, she said, ‘go home and write it all down, whether you send it to your Mom or not, write it down.’ Did I mention she is also a trained psychotherapist as well as a brilliant IT consultant?

So, here goes.....

My Mom lives in the USA and has been having health issues for about 5 months now. She has not been up the stairs in her house for 5 months; she has been sleeping in one of the guest rooms in the ground floor. She lives in a huge 2 story house and the stairs are very steep and narrow so she is not keen on those steps at the best of times as she tumbled down them and cracked open her head years ago.

Her issues started with swelling of her joints which was eventually diagnosed as Rheumatoid Arthritis (RA).  Her Father was bedridden for years due to RA prior to his death; I remember his hands being knotted claws. She was unable to use her hands, or walk or anything due to inflammation of her joints and was in such terrible pain she would ring me crying. This put a huge dependency on my Step-Dad to do everything for her. Normally this might not be such a burden but he has colon cancer and has been having chemo for 2 years. He has been so ill he can barely function himself.

I’d often have Mom crying on the phone because she said she felt so bad that Tom was doing so much for her when he should be resting and healing.

Then she began having such pain in her knee they sent finally sent her for an MRI and found a torn meniscus so she had that repaired.

She got a new RA specialist and they wanted to put her on medication which was to cost $300 USD a month. She had to send forms to the doctor for them to send to Medicare for approval, and after 3 weeks Mom’s friend Melissa finally persuaded Mom to phone and make an enquiry on progress rather than just sit in pain and wait. She found out then that the forms had never been received so she had been waiting in vain as no progress had been made. So the forms get sent in and she starts having treatment. The treatment was prednisone which is a steroid which is known to potentially cause osteoporosis, especially if taking large doses. However Mom already HAD osteoporosis and was diagnosed years ago and given medication to help strengthen her bones. The problem is she never took the medication as it made her nauseous. So instead of going to her doctor to discuss alternatives, she just stopped and ignored it. Now 10 years on this decision to ignore her health has had dire consequences.

Basically, with the prednisone the inflammation went away but then she started having intense back pain. Her primary care doctor (the same one who said she was being overly dramatic about her knee when in actuality she had a torn meniscus) told her there was nothing wrong and gave her a muscle relaxer and sent her home. She lay in bed for weeks unable to get up without assistance, not even able to get up and use the loo. Eventually he orders an MRI and she was found to have a fractured vertebra. So she has a procedure called a vertebroplasty where they inject a form of cement into the spine to fuse the vertebra under x-ray imaging.

She went back home and back to her bed. Then she had another instance of intense back pain and then a 3^rd episode shortly after that. All 3 instances were from a new, different vertebral fracture. All 3 were repaired the same way.

Then her various doctors actually started speaking to each other and realised she had osteoporosis so should not have been on the prednisone in the first place as that was causing the fractures and rapid deterioration of her bone mass.

They also picked up that she had arrhythmia which her primary care doctor said he wasn’t concerned about. But she woke with her heart racing and ended up back in the hospital thinking she was having a heart attack. It was the arrhythmia. She had a new cardiologist consult and they were very concerned about her heart rate and did a procedure to shock her heart back into rhythm.

Medicare will not cover the infusions she needs for the RA. And instead of just spending the money for a year treatment from this disease that leaves her sobbing with pain and unable to function independently she has decided to remodel her bathroom.

Whattttt?!!

That caused me a lot of confusion. Then when I rang home and spoke to my stepdad he told me he was having surgery tomorrow to blast the last nodule in his liver. Mom then casually told me that she had a friend to take him and sit with him. Naturally I assumed that she is still unable to get out of bed. And then I hear that she had asked another friend to drive her on a 4 hour round trip to get her hair done today?? How can her sense of priorities be so skewed? This is how she pays back the months of devotion from her husband?

I then remembered when she was in such muscle spasms and I suggested she try acupuncture as I have had brilliant results from acupuncture when I have had back spasms. She said she was unable to make it there as she could not get out of bed. Yet the next time I spoke to her she told me she had my stepdad drive her to get a mani pedi! How can her vanity be more important than feeling better or supporting her husband?

I am so frustrated with her. I was so cross when she told me about not taking any treatment for her osteo 10 yrs ago when diagnosed and then when I hear all of this other nonsense I want to grab her and shake her.

My mother and I were pretty much estranged for years because of her inability to acknowledge the damage done to me as a child, damage which she denied for most of my life and when confronted said ‘well I knew he tried things on with me and my sister but never thought he would do anything to you’. My mother lives in a land full of rainbows and unicorns, never should anything ugly intrude into her imaginary world.

Is this a trait typical of all southern belles? Remember Scarlett O’Hara and her ‘Fiddle-dee-dee I’ll just worry about that tomorrow’? My Mother actually says that too.

Did I escape that gene because I moved away at the earliest opportunity? Or is my love of the ganja my own method of escape?

Basically now she is not getting out of bed except to groom herself for people who never see her, and she is still taking nothing for her osteoporosis. I ask her questions about her treatments and get a vague response. I ask her things which I would think she would be asking her doctors herself, like how long does she have to take the injections (nevermind that answer as she stopped taking them) and how long before they start to strengthen her bones and what is the success rate of the medication and and and and…..she just has no idea and doesn't seem to care.

I spent hours reading up on various treatments for her arthritis, I recommended reading material, I suggested dietary supplements and changes which have been proven to be successful with other people. She tried none of them.

Then I ask myself, is she depressed? Well apparently she was put onto antidepressants as she was getting hysterical over everything constantly, and this was before she was ill. She was convinced she was going to be a widow a second time and I guess I thought that as Tom has finally almost reached the point where he may be in remission she would be less distraught. But she isn’t taking those meds either.

One of the best things she can do for her osteoporosis is exercise, even mild exercise would be better than lying in bed all day. If she does not keep her muscles functioning it will be even more stress on her already fragile skeletal system. Lack of mobility of her joints will also cause more issues with her RA. She needs to get out of bed and try and get active. She says she is not in pain, so I am not sure what is causing this lethargy.

I am finding it very hard to understand how she thinks, the way she is dealing with this situation. I can’t understand not taking ownership of her own health and I certainly do not understand the self-centred way she is treating her husband at a time when he needs to be preserving his strength. But then again, I have never understood the way she approaches life as if in a dream world.

I guess my lesson in this is that it is not relevant whether I understand her; I should just try and offer her love and support. She is who she is, and at age 70 she is not going to change. It just feels as if she has given up. I do not know what else I can do to pull her out of it, to make her want to get better. I don’t know what to do with my anger at her, at the situation and then at myself for allowing her to cause me such stress and distress by her actions. My kids are all stressed and worried about her as am I. The girls are in the middle of exams and need serenity. I nearly walked out on my job to fly to the US when she thought she was having a heart attack.

I do not understand depression and if that is the cause then maybe it is all beyond her ability to care. Maybe I am too hard on her. Maybe I am not hard enough on her.

Maybe….just maybe it will all be fine if we can all relax and trust that all will work out. Or is THAT living in a dream world too?

At this stage I just don’t know, all I know is that I just don’t know. Ya know?