I need to vent (thanks for listening)

I thought I was handling things pretty well but today I lost it. My husband was diagnosed with PSP last month although it was hardly a surprise. He is still mobile with the help of a walker but has become totally useless as far as contributing to our relationship and household. I have been tasked with shutting down his legal practice and it's overwhelming. I also care for my 93 year old mom with Altzheimers. She often spend her day close to tears but can't explain how she is 'sick". But once we get her some Adivan she starts to surface.

Today I lost it when on top of everything (not all being listed here) I find my husband is being sued for malpractice. He doesn't even know about it and is unlikely to care. I'm at my wit's end. I don't know how I can deal with more stress.

I'm also wondering when this disease might have begun. Most of his career he was the most ethical and careful attorney you could imagine. This is the second law suit (that I'm aware of). I'd been critical of his business decisions for the last 5 years and some of this may go back even farther. Does anyone really know how long this desease incubates prior to diagnosis?

26 Replies

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  • I have wondered the same thing how long when looking back I see signs. Sorry you are having a bad day. My husband has not walked for two years now .He can't do anything for his self it is hard to have to take care of everything. You do need to vent.

  • Thanks. I feel better already.

  • I think my husband had signs of the illness at least 3 years before being diagnosed, he can't do anything for himself, and is in a wheelchair. Maybe he was the same and made wrong decisions in his job, how can they bring a lawsuit, he is terminally ill, more than likely won't be able to go to court, just seems pointless. Big hug Yvonne xxxx

  • I wonder...but I do agree...

  • I'm a firm believer PSP starts rearing its ugly head long before it smacks you up side the head.Iv done a lot of thinking of when little thing could of been a sign of it .So in total years to date for my husband I think it could be as long as 11 years but he was finally diagnosed in 2013.

    Dee in BC

  • Yes Yes Yes

  • Hi

    My pal and I were talking about this at the weekend. It was her 60th, ten years previously on her 50th we took them away on a surprise trip to Prague, Rog had not ' been right ' for a couple of years prior to that. Two days after our return he was found almost catatonic in a corner at work, he was 58 never worked again and now is probably towards the end of his journey, we take it day to day.

    It sounds like you are doing what we all have experienced, trying to do it all, also like you a double whammy elderly infirm parents who rely on you.

    Not sure if you are in the uk, there are lots of avenues to pursue, folks on here are a mine of info,

    There will be calm after chaos I promise.

    We have sunshine here today bonus!

    Julie X

  • Firstly welcome to the site and I really feel for you having your husband and mother both suffering very very dibilitating conditions, and threat of prosecution for malpractice. When Ben was struggling to hold his job down before he was forced to retire early, his thinking and responses were not always as they should be and I'm sure his customers were perplexed. I'm sure he made lots of errors of judgement. I too wonder when my husband, Ben, started to display symptoms of change in his personality. I can think of a few instances years before diagnosis that weren't usual for him. Very subtle changes but nevertheless different to his norm. I suspect it was at least 5 years before, this disease must take a while to develop and damage nerve endings. Keep venting and using this site to gather information and support, it has proved invaluable for me.

    Love Kate xxx

  • My husband up and quit his job...I did not even know of it for several days....he said he kept falling of the steps he needed for books on high........I thought he was having ministrokes when his attempt at conversation was not right.....then I found within the Parkinsons site, a thing called PSP.....oh my

    AVB

  • Welcome.

    I relate to all you say about your husband and how difficult it is. I don't know how I would cope with mother as well. I trust you get practical help ?

    The malpractice threat is a blow but his condition should explain things ?

    In our case I am sure, on looking back, that there were many "odd" and out of character behaviours that were first signs of PSP, going back years. He was diagnosed Sept 2013 but about 10 years previously I made him go to Alexander technique classes because he always "fell" back into his chair It didn't change. I was reading recently that its a classic sign..

    He also ran his own company and made some erratic decisions.

    It creeps up slowly I think.

    Do share with us..

    love from Jean x

  • YES. This is not unusual.

    My husband G was diagnosed in 2013 with Fronto-Temporal-Dementia, but that diagnosis was overturned over a year ago to PSP.

    If you read the literature it is not unusual to mis-diagnose PSP with FTD or more commonly Parkinsons.

    However, In late 2011 into 2012 my intelligent Principle Chemical Engineer with a Mensa score of 150 got added to a 'suckers list'.

    Move forward a year just prior to diagnosis and he had lost all of his cash savings of 40K. One of the scams involving the selling of carbon credits was investigated by Surrey Police, the others were all what is called 'bucket shops' where they scam your money and disappear.

    The hardest thing for me to do was get him away from his computer and these predators, but now, he does not have a computer, cannot use the remote control or any gadgets.

    I am telling you this so that you know your are not alone.

    With regard the law suits I guess you need legal advice with medical backing of your husbands condition. Can they complete these law suits if your husband no longer has full capacity? Have you got registered Power of Attorney. Seek advise. Its hard, we all know this, but you must try to take care of yourself.

    Stay strong.

    Pam

  • Thanks for your advise. Last year, before diagnosis, but as suspicions were growing, we went to an elder-law attorney and hopefully, have the right documents in place. Since I'm now beginning to uncover some of the damage he did to his business I'm trying to figure out how to stop future damage. He still has access to credit cards and on line bank accounts. My task list keep working through all the crap - but one step at a time.

  • I feel for you, I've been through the worry of G still in charge of money, computers etc. If you can register power of attorney it will help to monitor what he is up to and you can make alerts with the bank so they let you know of any unusual activity. I did all of this and it helped. I also got an accountant involved, but that cost a lot more money !!!

    G is now completely dependent on all of his care and so has no contact with money, decision making or anything else. Its so sad but it is actually easier in a way, as I don't have the worries that you are now facing.

    The toughest is I have to do absolutely everything and then care for him too. I can't even have a conversation with him. But I am in a much better place, in the weirdest of ways and we muddle through each day, with the support of Marie Curie night sitters and CHC with day care 3 days a week.

    Hope this helps too.

    Pam xx

  • "But I am in a much better place, in the weirdest of ways and we muddle through each day" I had to repeat what you said because that is so how I felt....

    AVB

  • Well Said, Pam....150, eh? you gotta admit that before PSP he was a brainiac! My son has a 132...not mensa stuff but wow so smart....My husband probably had about a 130....even up to last year he was giving me directions to my inlaws in Arizona (we are in Arkansas) ....He never lost his memory only his ability......

    AVB

  • I suspect my wife had PSP about 2-3 years before obvious physical conditions started to appear (occasional forward falls and masking of face). But earlier she started having more behavioral issues. She would be more compulsive and speak out irrationally when in the past she would never do that.

    Oddly enough, our neighbor who lived right behind us and was our best friend developed FTD about 2 years after my wife was diagnosed with PSP. He was a big time lawyer with a big firm. It hit him fast and he ultimately had to retire. I don't believe he or his firm was ever sued. Seems like lawyers would have some form of insurance protection for those types of suits? He ended up passing 18 months before my wife died, who died last July.

    Hang in there darling,

    Ketchupman

  • Yes. I am turning it over to his malpractice insurance. Thank goodness he did that right - back when he had all his faculties.

  • Absolutely km! some form of legal insurance!

    How are you?

    AVB

  • The shock is wearing off. Now back to the grind. One day at a time. Right? Thanks for all the support.

  • Hey Andrea! I'm doing OK. Getting ready to go on 11 months without my Kim. Some days aren't so bad, but some days are almost unbearable. It's hard to predict when it will hit me. I guess I do it to myself at times. The most I dwell on things about her, the more I start to get emotional. How are you doing? I'm sure you're probably still in the numbness phase. I've been cleaning out closest and taking carloads of Kim's clothes to our church for their mission work. She had sooooo many clothes. As a hair stylist who worked in a shopping mall, she was always coming home with something that she bought on her lunch hour. Good thing I had a great paying job, otherwise we would of been in the poor house and seeking clothes from our church. :-) Well, take care and drop me a line from time to time.

    Ketchupman

  • I will do that...I am off to Arizona to take care of my parents in law for a couple of weeks...talk about accrued possessions! And worse yet,.. my mother in law wants to give it all to me! I am not a trinket type person and am trying to get rid of my own useless stuff...So goodluck to the both of us! What sort o f profession are you in? and how's that condo on the beach? How's your dad?

    Your wife was a hair stylist eh? my hairstyle consists of me putting a headband in my hair.... ;) I have curly doesn't-want-to-be-bothered-with type hair....Shave it off! hahahaha

    I will be back around June 7th. Bruce and my anniversary is on the 6th we got married on the same day as his parents....it sort of just worked out that way....they will be married 69(+-) years and we will have been 32 years!

    I hope you have a good Memorial Day....I will be staring at the walls or trying to convince my elderly parents for a change of life style.....doubt I will get very far....It's ok....I wouldn't want to leave my home after 20 years of living somewhere either! Maybe I can help them retire some of their shoes or something......ugh!

    AVB

  • Kim and I were married on June 6th as well. 35 wonderful years. Last year I was able to take her to our little Baptist church where we first met and were later married. The preacher let us in and pushed her down the isle in her wheel chair. I played her a tune on the piano as well. :-) I had actually played one song in our wedding right before she walked down the isle. I now regret not playing that same song at her funeral. Instead I played a song that she had always told me she wanted played at her funeral called "Pass It On". The song I played in the wedding was called "Brian's Song".

    Have a safe trip!

    DAN

  • Dear bsilverman. So sorry that you have all this stress laid at your door. Do ring your GP if you are in the UK. Tell them that you are at the end of your tether and in need of some support.

    As to the PSP diagnosis, my husband was told that he had Parkinson's in 2003. In 2011, I read an article about PSP. I asked the Neurologist if my husband had it and was told that he didn't, because it would have progressed more rapidly. I kept asking and in 2013, they did a brain scan and diagnosed PSP. I think he had it from 2003.

    I know how hard it is to be a carer and you are a special one. Sending you a big hug. Be strong and hammer on any door that you can to get help. X

  • Get a lawyer Get a lawyer Get a lawyer....Those are the only words of wisdom I have for you....do not try to do this alone or even with someone within the office.....

    I am sorry for you and all the things you must go through....Remember that your husband cannot do it anymore and with PSP comes apathy ...he doesn't care anymore can you imagine not being able to care anymore.....? and all we can feel is that it is an afront to us! My dear get some help for your mom. if you are in the US, you can call Area Agency on Aging and they can help you set up some help. Then ask your husband's neurologist for home health care ....people will come to your house to help with mostly physical therapy and the like. But as he needs more , they will be able to provide more......then if you think you might need it, get some counselling ...you need to know there is no guilt here. Your husband can't help it... you can't help it... the only thing you can do is help him through it...So I pray that you maintain your health to help those who need you...get some time in PSP free! make sure that your mom is taken care of without you having to do all of it and get some sleep, good nutrition and just time for yourself....you need it to help your loved ones; you need it for you...

    Goodluck

    AVB

  • Hi I thought I was stressed!! That is alot to deal with a hell of a lot good grief! x

  • Hi I'm new to this site too, February 2016 my 76 year old Mum was diagnosed with Parkinsons but last week it was confirmed as PSP. Talking to her she feels she had the first symptoms in late 2011 so around 6 years before PSP diagnosis. It seems it's often missed or misdiagnosed, in fact prior to diagnosis she was asking her GP for a referral to a specialist for about a year, but her symptoms were dismissed initially as age related. Finally she paid privately to see a Neurologist who diagnosed Parkinsons, which has now been confirmed as PSP.

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