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| Mom, Christmas in Florida, 2008 |
One week past Mom's death. Among the sorrow there is release; there is peacefulness, knowing that she is no longer suffering; and yes, relief that I don't have to endure the agony of seeing her stiff and silent, enduring diapers, pureed Salisbury steak and the endless bingo at the home.
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| Mom, Christmas 2009 |
Now that this image isn't there every day, I'm also remembering Mom as she used to be before she got the disease. This brings fresh sorrow, because instead of relief I feel the enormity of loss. She was so caring; so joyful; so dynamic.
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| Mom in May, 2011 |
What makes PSP so tough is that we're forced to see our loved ones in altered states for so damned long. First there were the mood changes; then the inappropriate behavior; then the dementia -- though not all PSP patients suffer this -- then the incontinence, the rigidity, the choking.
It gathered speed like a tightly wound top. We actually think she started showing symptoms perhaps as early as 2007, looking back; moodiness, strange decisions, wandering. Then, in April of 2008, a tentative diagnosis from a neurologist, and in February 2009 a pronouncement from perhaps the foremost expert on PSP. Time of death: August 24, 2011.
It's hard to blot out all of the absolutely hideous moments. Should I? I should I hang on to them, as part of a whole, well-loved life? I'll decide later. Right now, one by one, I'm excavating nuggets from the good times before our times together were clouded by sorrow, anger and anxiety. It feels good. Trying to encourage the kids to remember, too, especially as they'll have to work harder to dig pictures from their very early years.
I'm sorry about your mom's loss. It has been a long hard road, I'm only too sure.
ReplyDeleteWhat I resent most about this disease is that I'm forgetting what my wife was like before PSP. And I'm afraid our teenaged son may never remember.
If you can recall the good times, treasure them. They're as fleeting as life itself.
Thank you for sharing all that you have about your experiences, thoughts, and emotions during this hard road dealing with PSP in your mom. I have been the primary caregiver for my mom with PSP for the past 2 years and it really helps me to hear about others experiences so I know I'm not alone in this. Especially since this condition is rare. Thank you so much for sharing!
ReplyDeleteIt's been 13 months since my mother, best friend, travel buddy, secret keeper, and cheerleader passed away. My mom and I were lucky. She'd been showing symptoms for about two years, pursuing diagnosis with such persistence. What we found was that far too few doctors are aware of the disease or are afraid to say for sure that it is PSP. Two years of neurologists, Alzheimer's specialists, psychiatrists, and none of them had a clue. Reason being, my mother was a MENSA, skipped several grades, ran a successful business woman. She passed every test they through at her with flying colors "for her age." The problem with this was that my mother knew that she was slipping, knew something wasn't right, knew it wasn't an age thing, and she did not give up until someone, a Vanderbilt Medical Center Neurologist finally said it and started believing her and the family when we kept saying this is wrong...something is wrong and it's not her aging. The reason I say we were the fortunate ones is because even though we had gotten to the difficulty eating and incontinence stage of this disease, my mother and I still shared our traditional birthday weekend at the Grove Park Inn, taking in a concert and a day at the spa. Mom's birthday was March 4, mine March 7. She never lost the fight or zest. Still, my mom's brain meant the world to her, and it was breaking her down to lose that. And, it was devastating to me, my father, and my brother to watch her suffer this. On March 12th, she slipped and broke her hip. The following day, she had surgery. She never woke up. My family and I never for a moment doubted that Divine Intervention was at work. I grieve daily for the plans that we had that will never play out, the best friends beach trip we've been taking with our friends every year since I was 3 (I'm now 38), the 17 times we went to New York, with plans to go to the 100 Anniversay Macy's Parade, and a million other should have beens, but I take comfort in the fact that she never suffered a day of the complete incapacitation this disease was leading to. The only anger I feel is that these stories are not National news. This disease does not have enough funding. There is no treatment, and the trials are too few. My anger is with doctors who, rather than say, I'm not sure what is wrong or I don't know the answer made my mother feel as if it was all in her head. This is unacceptable. More research needs to be done, and at the very least, if you call yourself a neurologist, you should at least be aware that this disease does exist and it is a possible diagnosis. No person should ever have to tell their doctor that they heard about this disease and are curious if it may be the cause of the symptoms they are experiencing. Alzheimer's, Parkinson's, Multiple Sclerosis all get thrown in as possible diseases, but PSP was never thought about until my mother brought it to the attention of a neurologist. Hopefully, the medical community will hear these stories and begin helping families to cope with this devastating disease, because too often, the disease progresses so fast that by the time a diagnosis is made, it's too late to make plans, fulfill wishes, take the second honeymoon to Alaska. There will never be enough time when dealing with a fatal disease, but it saddens me that it takes, on average, 3 years to diagnosis it, and the average life span of a PSP patient is 5-8. Maybe there won't be a cure for a very long time, but surely we can come up with a more timely and definitive means of diagnosis.
ReplyDeleteDottie, you are so right. I'm a health reporter who writes often about neuroscience, and I'm going to see about writing a piece that will spread the word. You're the motivation I needed. I'm so sorry for your loss. My mother was also incredibly intelligent, capable and creative, and did suffer complete incapacitation. It was horrendous. I will post what I write here. I wish you and your loved ones peace.
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