July 7, 2014

My Mother's IPF

I am one of thousands of baby boomers who has an aging parent.

I am, by no means, my mother's caregiver. But I am her closest living relative and therefore I am responsible for her, and for her care.

Being related to and involved with my mother has been a bumpy ride for most of my 50+ years, for a variety of reasons. As difficult as the adventures with my mother have been, the events of this year have been the most unexpected and serious of all. At 88, this past winter, my mother was diagnosed with Idiopathic Pulmonary Fibrosis, an incurable scarring of the lungs. (http://ipftoday.com)  IPF can have several different causes, or no cause. One possibility is that my mother's IPF was caused by rheumatoid arthritis. Regardless, the devastating effects of this disease are monumental and numerous. I can't believe what it has done to her and I know that she can't believe it either. She is completely shocked and very confused by the disease's sudden effects on her entire life.

The initial symptoms, which she first noticed in January, were shortness of breath and a dry cough. Since then, it has been revealed that the left ventricle of her heart is enlarged. She also suffers from serious edema, (massive swelling of both legs.) In January, she was able to walk with a cane. Soon she needed a walker and by late spring, she couldn't walk at all. Now my mother, a former dancer, cannot even stand up. She is forced to use a wheelchair to get around, even within her apartment. And she needs help to do everything: dress, shower, brush her teeth, comb her hair and eat. So I hired a geriatric social worker who helped us find a live-in nurse. And now we are employers and we had to obtain worker's compensation insurance and we must file quarterly taxes and make payroll each week. It's amazing.

The part of the situation which is most baffling to me is my mother's simultaneous rapid mental decline. She has always suffered from depression, but now it's far worse. We've always experienced mood swings, but now they are much more pronounced. She's struggled with executive functioning (decision making and planning) for ages, but now that's non-existent. Her vocabulary is jumbled and her voice is barely audible. Plus, often she doesn't make any sense at all. And sometimes, she is without speech. My mother is presenting like a patient with advanced dementia or Alzheimer's (which she may have) but I cannot find any information online linking the two conditions. And none of her doctor's have diagnosed her with either Alzheimer's or dementia.

So I am posting this article in the hopes that others with knowledge and experience will share information and help my mom and me, and anyone else who is interested, make sense of IPF and apparent (but possibly unrelated) dementia. Please post if you have information to share. Thank you.

1 comment:

bswsoccermom said...

I did find this posting from 2011 by a woman who's screen name is SALLYJUDE:
I was wondering if any other caregivers out there have noticed a decline in their patient's mental faculties in the end stage of IPF. I have noticed a lot of very strange comments, short term memory loss, inability to make decisions, loss of reaction time when driving, etc. in my husband in the last few months. It appears to be getting worse and I was wondering if it could be related to the lack of good oxygen flow to the brain or if this is something totally unrelated.
My husband was diagnosed with this disease approximately 7 years ago and it appears from what I've read here and elsewhere that he has exceeded the usual life expectancy. However, his rate of decline has increased in the last year and he is referred to as "end stage". The doctors still say they can't give a time frame as it varies so much from one person to the next. In some respects, it would help to know how much time together we have left and in other ways it's best not to know.
Thanks to any of you who can provide any insight!
Posted on 05/07/11, 10:52 pm