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I am new to this. My father has recently been diagnosed with PSP and I was looking for others with experience and knowledge to chat to. He is not in the early stages as symptoms have been getting progressively worse. He has numerous falls, of which some could of been possibly been avoided. This is due to their house being increasingly untidy and cluttered from downsizing from 3 bed house to 2 bed bungalow. He is very reluctant to throw things away ie: newspapers and can get cross and agitated if I try to suggest to do so !!! Is hoarding part of this illness ? He is a proud man who having worked in mental health in the elderly himself is very unwilling to accept any help which is offered to him ... His words ... "I know what is coming so will hold out until the inevitable". This obviously adds increasing pressure on my mother who is not in good health herself which in turn adds pressure on myself. After numerous conversations with his GP who agrees he is not in the correct environment but hands are tied as he still has "capacity" I have been told that it is a case of waiting for that dreaded fall that determines GP can make that decision for him or worse ! Any advice or even kind words will do x

Claire

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  • Hi Claire welcome to the group - sorry that circumstances mean that you are here.

    You will find many people on here who know exactly what you are going through. Your father is like so many sufferers of this awful disease - he is refusing to accept it is changing his life. And you have to stand helpless on the sidelines. It seems that your GP is alert to what is happenning and that is a good thing.

    Clutter is not a friend! I understand your distress about this and watching your parents suffer is dreadful. You are doing the right thing in looking to the future and preparing the ground for what may come. But your dad can still make decisions, unwise though they may be.

    There are people on here who can give you more advice than me I just wanted to welcome you here and to let you know you are not alone

  • Thank you

  • Hello Claire,

    My brother had many falls also when he was at home(also a bungalow). He had a zimmer & a trolley & a grab rail or two fitted. He lived alone at this point and I can understand your worry. We made sure he had a "clear route" to the bathroom from his bedroom &lounge. As to the agitation I think it was his frustration trying to cope with increasing disability and loss of his independence.

    I used to take him for a drive in the car, as his mobility was so poor , perhaps someone could do that for you and you could do a little box stacking quietly.

    My brother also wore a "call " button round his neck and I was first name to check on him.

    Love

    Pollyannajo

  • It's good to know I'm not on my own .... Thank you so much x

  • Hi Claire,

    My Mum has just been diagnosed with psp although she has had it for a few years now. Mum did go through a period of falling and a personality change. Mum became agressive, paranoid and secreative. As much as we tried, turn your head and Mum would be up and walking and falling. It was not until Mum was given certain medication she really calmed her down. My biggest tip for you is to try and get both powers of attorney. We have had so much with Mum and powers that be and much would have alleviated if we had. P.O.A. It was a very frightening time for Mum. Observe any changes in behaviour and swallowing/coughing and give him lots of reassurance that you are there to help. Make sure your Mum is coping and you are coping get plenty of help from community services and get a carers assessment for your Mum. Also apply for benefits such as attendance allowance. Get intouch with psp advice team they are great and will give lots of literature. Good luck, Liz x

  • Hi Clare welcome to the site, it is the best site ever, my husband at the beginning like to save newspapers, he use to say he wanted to cut things out, which he never got around to, this was the early stage, he was very aggressive, it was a really bad time, I felt like screaming, that was quite a few years ago.

    We think the George has had PSP for at least 6 years, we also moved to a bungalow, but he does not do anything now, he does not talk very much, wants to stay in bed until late.

    Maybe you could do as pollyannajo says take him out and get some boxes and tidy them away, I bet you could bin some he would not now, and your mum needs to look after herself, maybe get social services involved, and you in the uk?

    Well good luck Clare sending you a big hug, this is a horrible illness, you can only take one day at a time.

    Love Yvonne xxxxxxxxx

  • hi Claire well mate im sorry that you have the need to find this site with your dad having psp on here you can ask anybody speak to anybody and have a rant and rave to anybody they are all good people on here and always try to be helpful if they can if they do not know the answer to your question they will probably advise you to try someone else or tell you somewhere you can go to get your advice from .

    we have our light heated moments which you need on a site like this which I find makes a change from doom and gloom mate ]] now I have psp I am not going to go into a long bit about whats going to happen in the future but there will be someone on this site that can give you answers and that's what you need at this time mate so we hope to hear from you again before to long and

    then you will hear the history of some of us with psp tell your mum not to worry

    and yourself of course mate because it will get you nowhere and you will still be left with the problem] take care mate peter jones queensland Australia

    psp sufferer take each day as it comes mate

  • Hi Claire, welcome to the site, sorry you have had to find it, though it is very informative. I am not the best person to give advice as my hubby is only 2 years into the condition and thus far has few falls - although he uses both a stick and walker. He is still quite mobile. He does have conversation problems at times, although he is not as bad as he thinks he is, it's a question of making him try more often as he would leave all the talk to me when out and about. We are lucky that our dog is a wonderful Toller - they are fantastically intelligent and highly adorable and loyal. Currently my husband takes him out for a walk - the park is opposite - short though they may be he goes on his own and both GP and Physio encourage this. I know it will make things more difficult during the latter stages of the condition to fit everything in but Saxon is my saviour during all this and I will manage somehow.

    Wishing you all the best and hoping your Dad realises the help that is needed quickly. My husband took a lot more on board after I had a carer assessment - that was the major point when he realised what he was causing in the way of stress and moods - just a thought as I obviously don't know your parents or your entire situation. Take care of yourself too.

  • Welcome Claire but as others have said, sorry you have cause to join us. It is very difficult for everyone when someone is newly diagnosed. It's hard for whoever will be the main carer, hard for their children like you but even harder for the one who has the disease. Suddenly, independent probably quite strong willed people find those around them making all the decisions, telling them what to do, what they need for their good etc. My husband felt the same inside and didn't feel ill. Others were telling him he was staring and he fell over occasionally but to him he was fine. He once told me he feels useless. He wanted to climb a ladder to fix the gutter, he wanted to stretch up and change a light bulb but I and our sons told him he couldn't and he knew he could. As others have said, I think it would be a good idea to take your father somewhere nice and do a bit of a clear up without throwing out too much unless it is rubbish. I find it annoying sometimes when our sons make suggestions in a "we know best" or exasperate tone, as my dad did when I suggested things to him, so even though you can see things that need doing take care how you tell them. To your dad you are still his child however old you are and he is supposed to support you.

    It's good you are around to support both your parents and I think it is important to make sure your mum has access to all help and services. Although it is frustrating I think your dad's attitude is great. He isn't going to give in but has accepted the inevitable. Until the illness progresses he will need a lot of support that is not too obvious; your mum will have to have eyes in the back of her head as he will try to do unsuitable activities. He will put himself at risk, probably many times but that is part of PSP and even if you and your mum sound like a stuck record when warning him of risks, until he is are physically unable to do things, he will continue to take risks.

    Your parents are very fortunate to have a daughter like you who cares so much. When our sons come I really value normal conversation. I want them to make me laugh and add a little light to the day. I tell them how their dad has been since I saw/spoke to them last but don't want to dwell on it too much. They do little jobs around the house and we do gardening together or put my husband in his wheelchair and go for a walk.

    Good times can still happen if we make them happen.

    I hope you manage to "clear a path" soon.

    X

  • Hi Claire as you have read we all sadly welcome you . This is the best site for psp caregivers of which you are now one.....CurePSP.org is also an excellent site. It helps newcomers to the disease answer questions they hadn't even thought of.

    The best thing about the site you are on now is that you have friends who will listen as it gets tough(er). As the others have suggested, find a few boxes fill them with the stuff thats in the way and 'secure' in the trash or if they are of value (My husbands free standing books-no shelf! ) secure in the store room/guest room! My husband cannot throw stuff away but he has gotten better. He understands that things cannot be in his way and has allowed me to clean it up a bit, though I do admit i'm not a good house cleaner...well I digress....Do tell, what is the matter with your mom, how old are your parents, and have you been able to get some home-bound services? I ask this because maybe you can get a geriatric assistant, or someone to help your mom as well as one who would focus on the disorder.

    There are several other things you must take care of besides your parents, YOUR mind,

    YOUR body, YOUR spirit! do not ignore any of these things as you will be hindering the needs of your parents trying to renew yourself!

    Find something good and fun to do that allows you a break from being a carer. Eat right , take vitamins, exercise to learn how to physically help your parents (picking up when they've fallen - use your knees and leverage, not just back muscles!) GET SOME SLEEP! If you are a Bible reader feed your spirit by daily reading. And last but not least pray daily for guidance, strength and joy. You now have a new normal...but indeed it is normal....Because of the love you have for your parents you will do anything for them, and that is normal! Remember that doing anything for them may be asking someone else to do it....Get Help! Youll be amazed at how many services are out there and friends who "don't mind helping!" Seek joy hold on to it.

    Breath healing breaths and know you are not alone in this, new normal,

    AVB

    "Behold, we count them happy who endure. You have heard of the patience of Job, and have seen the end intended by the Lord: that the Lord is very compassionate and merciful ." James 5:11

    "For God has not given us a spirit of fear: but of power, and love and a sound mind.

    IITimothy 1:7

  • My husband is still not accepting the diagnosis although I am pretty sure he knows but just can't face up to it. He hasn't shown any obsessive traits as yet and has become very passive and unable to make decisions. He does however try to do things that he shouldn't and becomes very wobbly on his feet. I keep telling him he will end up in hospital if he doesn't take care but he thinks I am over reacting, maybe he is right. I try to keep the pathways around the house as clutter free as possible so must be difficult if your dad feels protective of his possessions, hopefully a passing stage. Help PSP sufferers is like playing Russian Roulette but you just have to do your best as it is all you can do. Take care. Kate xx

  • Thank you all for your kind words and advice x it means a lot x

  • hi do'nt be scared to sob on friends shoulders and sofa's! xx

  • Welcome, Claire. Sad to welcome folks here but it has been my life line. My husband was diagnosed with CBD, a wickedly rapid moving cousin of PSD. It is at times overwhelming to see him fade. He is often confused, in a wheel chair now, has big troubles with his eyes and hid balance is gone. He was diagnosed in 2013 May. I have bad days and good days, still more good than bad. His personality hasn't changed much. Just can't talk, and doesn't want to try much.

  • Never thought about it but when I came to take care of my Aunt Bev's house I had be make a path to get through it it took me a good 6 months to just get a couple of rooms cleaned out she would try to stand when the garbage man came to see what I was throwing out. I finally had to tell her its not about those things anymore it is about being safe and mostly me I am such a clutz always tripping or stubing my toes which of course she thought was funny and to get her mobil again on her electric scooter in the house so away it went except sentamental stuff.

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