This is my first posting on here as my wife was diagnosed approx 2 months ago, but we're certain she had this condition unrecognised for years. The biggest challenge by far for Jen and for me is handling her very extreme depression and horrendous anxiety. She's suffered this on & off for many years before the diagnosis, it would come suddenly without warning, often lasting several months, then mysteriously suddenly switch off again as she'd feel relatively well again, but all the while her balance and ability to walk was deteriorating. Since diagnosis her depression has now got so bad I'm finding it almost impossible to handle, and exhausting 24/7, with no other help I'm at breaking point most days, virtually begging the local elderly care team for some respite help, but don't get any further despite them apparently having numerous meetings discussing her needs. She always runs out of the valium and sleeping tablets too soon as she's begging and screaming at me all day to give her more to ease her anxiety, it drives me to despair because of this. Has anyone have any experience of how to best deal with this scenario ? I'm absolutely dreading how I'm going to be able to help Jen as her condition gets worse.
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Sparkle57
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Hi Zerachiel, I've just followed the link you sent me, it was really good clear and straightforward advice, exactly what the SOAMHS care team dealing with my wife's care package could have told me about ages ago 😕 I think the problem is in dealing with so many different specialists in many different fields & departments that it all becomes hugely confusing at times as to who's supposed to be doing what, and when. Thanks for the info.
So sorry about this difficult situation. A good new psychiatrist could rethink her medications and manage the depression/anxiety. Valium is actually highly addictive, so it’s no surprise she is so desperate for it. There are likely other medications that would be more effective for her condition. However, weaning off Valium after long term use has to be done slowly and carefully and is best done under a psychiatrist’s supervision.
Thanks Martina, I just remembered after my posting that Jen's diazepam was recently changed to a new one called Lorazepam, which I was told was supposedly less addictive and apparently longer lasting. Unfortunately it hasn't proven particularly effective yet in calming her down for long. She's been on Zolpidem for sleeping, was supposed to be short term but unfortunately it's proven essential in order for her to get any sleep, or me, so doctor's decided to keep that going or situation would become impossible to handle at home. She's been on Lamotragine and Duloxetine for years now, after huge trial and error through psychiatrist, it was re-look at recently and they decided to just up the Lamotragine further.Now here's the surprise, whenever she's suddenly popped out of severe depression episodes (always amazed me) in the past, which could last several months at leat, she would instantly cease taking the vallium, with NO WITHDRAWAL symptoms at all, this would surprise even the doctors.
She would also start having a glass of wine, or g&t in the evening's again.
Dear Sparkle 57Welcome to to the site no one wants to join but where you will get friendship and support.
It sounds horribly challenging currently. Agree with previous posts do not be put off asking for help no one can cope alone. Dealing with a diagnosis of PSP on top of the depression is really hard. There is help out there keep trying - I know how hard that is when you are exhausted but go to GP, Neurology, a review of your wife’s medication sounds essential. An OT assessment - to get right aids may also help your wife’s depression and lift your workload a little
Carers support , respite for you both is so important,
Thanks Tippyleaf for your kind support, you'll see in my reply to Zerachiel, that I've now looked at some rather useful info regarding exactly who to get into regarding the right help, something I'm very surprised I wasn't given sooner. 👍
Valium has been found not effective here in the US for people with PSP. You really need to request new medications for your wife. And be sure they wing her off as it's very addictive. It does nothing for depression. And not one person could possibly take care of someone with this disease it truly takes a village. I would start with her neurologist making them help you to come up with a plan for care. If you have palliative care available they are helpful until she becomes eligible for hospice care. I know aids can be costly but hire one for a couple of hours a day to give you a break. Please don't try to weather this storm alone as it will leave you physically and mentally depleted. Hope you can find the help and resources you need. Best wishes
Thanks Steph, see my reply to Martina above, regarding my wife's seemingly miraculous and bizzare immunity to long term addiction to certain drugs when the depression suddenly switches off after many months - but craves it absolutely when really suffering mentally again. The Neurologist hasn't been able to explain the nature of this longer term on-off pattern yet, but then they're still finding out much about pap I guess.
Depression is part and parcel of PSP for most patients. As others have said, Valium is not the right medication for her. Get a referral for a neuropsychiatrist, he or she will know the best meds to manage the depression and anxiety. There is almost always respite help available. You can't be there for your wife if you're not there for yourself. You must be your own advocate... be 'loud'. The squeaky wheel gets the grease.
My wife was also initially treated for anxiety and depression with a drug called Trintellix and along with cognitive behavioral therapy it seemed to work. This situation went on for two years until we got the devastating diagnosis of PSP. We have continued with Trintellix and while she still gets anxious it is somewhat manageable.Do you have home care, and access to exercise and social engagement programs where you live? These programs in my experience have been very helpful.
In UK my husband has a Community Matron she is brilliant. We have a Mental Health nurse from LLAMS team, linked to a psychiatrist he has anti psychotic medication respiradone and Memantine for depression. Your GP can make referrals for both these services. Matron can make referrals for OT, they come to the home take bloods. We have a care package. It was horrendous last Dec and I did e mail Head of Adult Social Care with the Local Authority. I wrote to the GP and did contact LLAMS Nurse daily because I couldn't manage his behaviour. I was at breaking point like you. Tim is right you must speak out. There will be a carers center near you they will help too. X
I must look into possibility of getting a Community Matron, it seems that after the havoc brought about by Covid every area of health and socialservice has been hit with massive shortages and delays. Back into the battle tomorrow for getting the essential assistance. 🙏
I am so sorry that your on this journey. My husband was well managed with Cymbalta and Zyprexa for his depression and psychological issues and then given a prescription strength decongestant for sleep. I would encourage you to ask for different meds. There is a better cocktail out there that will work and will not create the roller coaster effects. Blessings and strength for you!
Hi I'm new to this wonderful site and read the many helpful tips offered. I was diagnosed with PSP in February after being misdiagnosed with Parkinsons 4 years ago. It certainly is an awful disease and one that I and my family grapple with on a daily basis. When I was diagnosed with PSP my husband and daughter convinced me to look into Medical Marijuana available by prescription in Victoria Australia. After discussing with my Neurologist and GP I began taking 0.5ml twice daily; a combination of THC and CBD. The use of cannabis is highly regulated by the TGA and my GP prescribes a month by month script. I've found that my anxiety and sleeplessness at night have improved markedly since taking the cannabis oil,and my mood in general has also improved. It unfortunately hasn't done anything to help my balance and pain, but to have some relief in the above makes life somewhat easier. Also as Cannabis is plant based it is a natural product and allegedly not addictive. Maybe it might be worth your investigating. Good luck
That sounds great Lara, so glad it's worked for you. I've been thinking recently about my wife trying it again, certainly worth doing so as medication doesn't seem be helping thus far.
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