End of Life Choices

My dad had strong opinions about what he wanted at  the end of his life. He told us he was unhappy about the effects of pain pills on his cognition and yet the pain became difficult for him to bear.

He was not in a hospice as he had planned. Though he had applied, there was no space available in hospice, and as his health deteriorated he was admitted to a hospital.  His palliative physician in the hospital was very sensitive and checked on his wishes at every decision point to make sure that he understood the effects of his choices.

I can still see the doctor in my memory, practically kneeling at his bedside in order to be close to him and to communicate better. When he decided to refuse intravenous liquids and nourishment she was there with him to point out the implications of this choice and make sure he knew the result of this decision.

He had a peaceful death that was marred only by the fact that he had contracted MRSA in the hospital and so we all had wear gloves and gowns to see him in his last days.

We were relieved that he was able to make his own decisions even at the end.  It meant a lot to him to be in control in dying as he had been through his whole life.

Dad at Niagara Falls, Maid of the Mist

Based on my reading recently he had a "good death" because he was in control, comfortable, had trust in his care providers and his beliefs and values were honoured.  He knew that the time had come and did not feel there was anything to gain in prolonging his lifespan.

This link is to an article titled How Doctors Die.  It is obvious that more knowledge of healthcare has a huge impact on the choices you make.  I had never before thought seriously about my own wishes but this article helped me to start thinking.

Post Surgery

They haven't called me back yet with an appointment to get the stitches out.  I am  worried because one toe looks sort of iridescscent in the purples and blues and it is puffy, so I am going to see the GP tomorrow to get an opinion.

It actually hurts more than I would think it should 6 days later.  We got a transport chair to wheel me around which should help now and possibly in the future for those events that require a lot of walking or waiting in line.  I have resisted that idea for a long time but it seems sensible now.

So I will keep in touch and as usual hope for the best

A Past Foot Surgery

You may have guessed that it is always the feet.  If you have trouble under the ball of the foot and with the toes that's the forefoot and it is very common in RA.  When I had the first foot operated on it stopped my limp which is great because limping can affect the alignment of the hips and hurt the knees.

It's been 10 years since the second foot was "reconstructed"  That's what they call it.

It is not an elegant solution but was very effective.  Function matters more to me than looks and not many people actually look at your bare feet unless you live in a warm beachy area where sandals and flip flops are the norm.  My RA has lasted a long time though and with all of the better treatments we have now, fewer people have the joint damage you often saw 20 years ago.  Plus the technique has improved so your toes end up straight. It is said to be more "cosmetically acceptable" to patients.

The last operation was not really successful so it was redone.  Who would think that you could have 3 forefoot reconstructions?  It's day surgery but 6 weeks no weight bearing.  I actually bought my own crutches.  They're called platform crutches and good if your hands are weak.  Your forearms takes the weight.  Here's the link to a sample picture - they are hard to visualize

http://www.walkeasy.com/shop/product_details.asp?ProductCode=410

I ordered them from a home healthcare store. These are so much easier to use when your hands are weak  and your joints are damaged.

Clinical Studies

Anxiety was the main reason that I started reading medical journal articles.  It's almost like an amusement park - you're up, then you're down.  There are so many complications I have read about that I don't have.  As a patient usually watchful waiting is the best idea for me.  So goodbye to cachexia and amyloidosis for now, not to mention interstitial lung disease.

The last study I read appears here http://www.ncbi.nlm.nih.gov/pubmed/22709490

A study of the prevalence of sicca symptoms and secondary Sjögren's syndrome in patients with rheumatoid arthritis, and its association to disease activity and treatment profile. 

CONCLUSION: Among the 307 RA patients, 28% had at least one sicca symptom. The estimated minimum of prevalence of sSS in 307 RA patients was 3.6%. Secondary Sjögren's syndrome was not found in RA patients treated with biologics such as TNF blockers.

Well I wish that conclusion about not seeing Secondary Sjogren's in patients treated with TNF blockers were accurate in people outside the sample that was used.  Really, I want it to be prophetic.  But it's just another dip in the RA roller coaster.

Could they be implying that it prevents the onset of Sjogren's Syndrome in Rheumatoid Disease? That would be a good reason to tip the balance in favour of biologics for RA treatment if you ask me for my opinion.

Sjogren's is unpleasant to deal with, treating the symptoms is costly and it also adds limitations to one's life.

Not the Feet of My Dreams

At the risk of being too literal, I elect my feet for the "Achilles Heel of RA" trophy.  For the past 30 years, day in and day out they keep on giving.

They were the first sign of RA - I could neither get a diagnosis or walk without a limp.  By the time things improved the feet were beyond hope of wearing "nice" shoes.

                                         thehomemaderenegade.blogspot.com

Yes. my feet are trapped in bad shoe jail.  I became resigned/somewhat accepting but still feel socially handicapped with sensible shoes.  I went to Walking on a Cloud (shoe store) 20 years ago and they quickly steered me to the "elderly shoe section" where I found shoes even less stylish than this pair known as the Lady Pillow-Back. Doesn't that sound glamorous?

You'll find me every day wearing my sensible New Balance shoes, and now I have even gone to velcro closings.  I was going to say it doesn't bother me now but even in this post I wince at the words velcro and shoes in the same sentence.

I'll never be a rheumanista because I choose function over fashion. In my own mind I'm glamorous. Just don't look down.

Caregiving? Not Revera!

My mother is quite disabled and has been living in an expensive retirement home for the last 5 years.  She is comfortable there on the whole.

It was taken over by Revera Living.  They advertise a lot.  They have renovated the place, cut staff and they raised the fees this year.  Now they are back with a 140% increase in the cost of care.  Originally they gave us one week's notice about this change.  After we complained they dropped back to phasing it in over 3 months at the end of 90 days.  

Only the Landlord Tenant act governs them so residents are only protected from increases in the rent portion of the monthly charges. For the care fees they can charge as much as they want.

My mom's care is much the same now as it was 5 years ago but she is less well.  They want her to pay almost $9000 each month.  And at that price they have homecare help (CCAC) to get her up and dressed each day!!

I would go further and say this is an abuse of the taxpayer. At $9000 per month you would think they could afford the staff time to dress her and not call on the provincial healthcare funds.