We have seen neurologists, internal medicine and even a psychiatrist.
None of them can tell us why my Mom's Parkinson's is progressing so fast. None of the combinations of medications they give have had any effect slowing down her disease.
None of the scans Xray, US, MRI, CT show anything physically wrong with her brain. All of her blood tests are normal.
Every month it seems she gets more confused, more rigid, more stubborn and generally more difficult to deal with.
My job requires me to be out for extended periods of time, so I really can't come more often, not as long as this pandemic is on.
I keep reading on Parkinsons Dementia and its like....there's nothing you can do....its just a speeding train.
I feel like my degree is useless where it matters the most. I treat patients daily and see them get better, but no matter what I try with my Mom, she just gets worse.
I tried adding extra Vitamin B, it didn't work. I tried making her exercise more to keep her mind and body active. I asked the neurologist to see her, they increased her PD meds, it didn't work. Someone suggested an experimental supplement...it didn't work. I tried increasing "brain foods" in her diet, it didn't work.
I give up....sigh....
End of rant.
Sigh... its hard.
I keep blaming myself for not being able to figure out how to make Mom better. I keep thinking...come on ExVee there must be something I haven't tried yet.
And worse again, whenever I get a call from home about Mom's decline...I keep thinking, they must expect me to tell them something that can help....but I got nothing, no fancy experimental treatments, no wonder drug, zip.
If you focus on her quality of life rather than its quantity you are not giving up. Acceptance is hard. But it is in acceptance that nothing is working and doing more is only prolonging her life that, perhaps, you will find peace for both you and your mom.
Mothers can be the greatest of teachers. She may not have taught you in medical school but she is teaching you now while she is on this difficult journey.
You also wrote on your profile that you have brothers. What do they have to say?
The hardest part for me is the loss of connection. I sometimes ask myself "Am I doing all this for them or for me?" but I guess the answer is "you just do".
Best medicine might be your company (if covid permits) as in my case it brought my dad around enough to feel reassured amidst his confusion, frustration, and inner turmoil - not all the time (and not often enough, sadly), but it was valued from both sides whenever that window was open ever so slightly.
1) my mom won't recognize me anymore.
2) mom would already be dead.
Sigh. But. I wouldn't be the first person to go through this...so ...yea.
We can't fix old age and infirmity especially where dementia and mental issues are concerned. Medical science is still in the middle ages when it comes to the mind, let's face it.
Hang in there and I will too. What else can we do? 🤐
In my Mom's case some medications help with the rigidity, but then she has more "outbursts" ...but then the medication to control her erratic outbursts slows her down and brings back the rigidity (**facepalm**)
Trying to treat a disease where a person has to take two medications with the exact opposite effect is really frustrating...especially when its your own mother.
NOT EVERY ONE CAN BE CURED.
The best thing a doctor can do for the patient and family at that point is to stop subjecting them to MORE, more treatment, tests,
At some point telling them that the quality of life is better than the quantity of life.
I wish more time in medical school was devoted to Hospice and the incredible value it can bring.
I am going to get off my soapbox now.
Now the time is to talk to your mom and more importantly listen to her and ask HER what She wants.
You have done all that you can, now be a son, hold her, tell her that you love her and thank her for all she has done.
I wish I could offer some consolation, but know that you are not alone, either as a son or a doctor. In some ways, it's a humbling experience...we can put people in space, but we can't conquer some diseases.
If you have faith, leave it in the hands of your higher authority. If you do not have faith, can you find acceptance that this is out of your hands, even though you are in a healing profession.
Sending you a long distance hug.
Parkinson's has no specific single test to diagnose it. It's diagnosed thru the process of elimination. All the scans and bloodwork are meant to eliminate other possible illnesses. Could PD be an incorrect diagnosis?
You treat and maybe even cure people of various disorders. There are some you won't be able to help clinically. Your mom is one of them. You can, however, help her live a life of dignity. “Treatment” doesn't always mean medicine. Compassion, understanding, her knowing you are there for her, can also contribute to her well being. So don't be dismayed. Don't give up. Continue to advocate for her care. Best of luck.
I am not a specialist, so I have to trust their expert opinion.
Most of our visits end with some form of the phrase: "the patient has Parkinsons, although, it usually doesn't progress this quickly"
Why I guess my Mom was one of the rare lucky few with rapid progressing Parkinson's
It might be better to focus on making loving memories with mother while she is alive. Please consider NOT "fixing" her and just enjoy the time together. Play her favorite music when you are together. Watch movies she enjoys together. Bring her flowers and treats. Keep in touch via video and audio phone conversations when you can not visit in person. She will enjoy your visits and you probably will too,
I have no experience with Parkinson's, only my mother's dementia, which was likely vascular. The one thing others and I do mention is that each person's journey with dementia, even those who have the same underlying condition, is unique to that person. They may share some symptoms, behaviors, physical manifestations, but not everyone has the same timeline, nor do all experience every symptom. Some progress quickly, others slowly. I would imagine it is the same for someone with Parkinson's.
This web site mentions some of this:
https://www.webmd.com/parkinsons-disease/guide/parkinsons-disease-progression
The second section, "What Makes PD Hard to Predict", more or less says what I wrote in that last paragraph.
There is a possibility that she may have another underlying condition that isn't apparent. Those with dementia may have what is called mixed-type. This makes it very difficult for family and/or care-givers to manage or deal with, as they certainly aren't going to follow any strict path!
You aren't a god, you are only human, with training to help people. You can only do your best to help your mother, the rest is out of your control. If your siblings are blaming you, not just looking up to you for the answers, then point them to the web site above. Even if they aren't blaming you, they might be able to learn or better understand if they read this page as well.
Please don't beat yourself up! You all can only do your best to help her and keep her as comfortable as possible now.
I am presuming you are an MD.
Do you get diagnoses and treatment right 100% of the time for 100% of your patients? Likely no. I believe that medicine is a combination of education, experience, and knowing you are on a journey of discovery not knowing the outcome 'all the time.'
Sometimes, it is not giving up; it is giving into a serenity within. Shifting to a universal trust of 'what is,' may give you a new 'presence,' 'present time,' and openness to letting go of a control which is no longer serving you or your mother. Perhaps meditate, give yourself some psyche, mental, psychological space. It sounds like you are so ingrained - so close to all of this that you need to shift - perhaps to your heart and out of your intellect/mind, even for a few minutes ... at a time. Turn on some disc music and let yourself go.
hugs!
sorry to hear you/your mother are going through this.
parkinson’s...
i think like everyone on this planet, our health is also related to how much stress we have.
parkinson’s unfortunately gets worse with time, that’s clear. but also stress, can make symptoms worse.
does your mother have things to look forward to?
we all need magic in our lives/some hope/something that drives us forward!!
big, big hugs from me,
bundle of joy
If things are just getting to hard for the family to handle, then it might be time to either hire full time help to assist her, or find the appropriate facility to place her in. I wish you the best.
Thanks.