27th Mar2011

A JD update – Insert snazzy title here

by Dutchcloggie

After my outburst in the previous post, it might be time for an update on how JD is actually doing. I can not think of a catchy title so I have done away with it.

In the past 2 weeks, things have taken a down turn. JD is once again struggling with walking, having very little balance and co-ordination.

Our trips to Holland and Paris have had to be cancelled.

I have re-applied for carers to help with dressing her in the morning as I no longer feel comfortable holding her up whilst trying to walk. My back is struggling. Also, JD is unable to correct her position so when she slides off the chair in the bath, I am unable to lift her on my own. This is potentially dangerous. So after 3 months without carers, I am bringing them back. It is something I really do not like doing as both JD and I feel it as an infringement of our independence and privacy.

Conversation is also going downhill. It is basically a lot like it was last year in October. Back then, she ended up in the hospice for over a week. So after discussing it with the MacMillan nurse, we decided to try what worked last year: a very high dose of steroids.

The deterioration last year was very quick and mostly the result of swelling of JD’s brain tissue, rather than actual tumour progression. This is also why the deterioration went so fast; swelling can be really sudden and fast. The steroids helped reduce the swelling and JD recovered reasonably well.

With the brain tumour having grown and new ones on the scan, the chances were that this time, it is not swelling of healthy brain tissue that is causing the problems, but actual tumour progression.

We tried the very high dose of steroids in the past week. if the deterioration was due to swelling, we would expect improvement. Unfortunately, this is not the case and her problems have not been reduced*. This means it is actually the tumour causing the problems and that means there seems to be very little left to do.

The question now becomes: how fast will all this go? I do not want JD to go into a nursing home so I want to care for her at home. I am not sure I can deal with her actually dying at home in our own bedroom so I am keeping the option of her going to the hospice at the very end open. But until then, I want her at home.

But how long will that be? This cruel disease means that sometimes things go downhill really fast, only to the stagnate for a while and then it can be over in days. Because it depends on where the tumour is actually located, patients can be lucid, walking and talking only days before their death.

So it can be weeks, months. So planning the care required is hard as it can change in the space of a few days. I have ordered a hospital bed, even if we don’t need it yet, just because it can take a while to sort it out.

This post should have some kind of conclusion but it is just an ongoing thing. Keeping you all updated on how things are going.

* however, having said that, it can be difficult to notice the tiny changes. Like this afternoon, JD seemed to be more stable when standing up. Maybe I have judged it too soon and more time is needed.

One Response to “A JD update – Insert snazzy title here”

  • >Hey there…sending hugs to you from Canada. I understand your frustration. As a carer as well, albeit to a benign BT sufferer, I completely understand your anger and frustration. I followed the carfluffle on the Yahoo group and wondered if anyone had directed you to BrainTrust which has a group specific to carers. The conversation is very frank and to the point. I've seen posts like yours and they were all greeted with respect, understanding and caring. If you aren't already over there, I encrouage you to check it out…many carers with lots of good experience.Regardless, know that you are doing the best that you can and if you need to vent, then do so…it is your right!Danielle

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