How do carers keep sane?

Hi all

I care for my dad with my mum!

I'm new to this site!

I hate PSP as I'm sure you all do!!

I'm sooooo tired and angry and upset and feel nothing but utter frustration that I cannot help my dad and can only watch him deteriorating

Of course we help dad with walking, dressing, showering, toilet visits (constantly), eating etc but why is there no bloody medication?????!!

Why doesn't anyone seem to know about Psp?

Why don't the authorities help more?

How do you get carers at home when you dont actually want them? You need them but you don't want them to look after the person you love cos they might not do it right?!!!

How are you supposed to look after yourself (like I keep being told) when you haven't got time??

Sorry I'm sooooooo frustrated!!

X

23 Replies

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  • How do I keep sane? Accept any help I'm offered and live a life again. I realised the reason I wasn't coping was because PSP had taken over my life. It consumed every minute of my day and night. I was caring for my darling husband 24/7. I cried a lot, was exhausted all the time, irritable, sad, angry and in total despair. I have a faith and screamed out to God one night, why are you doing this to us, where are you? I could have easily driven us both over a cliff.....I'm a coward though so don't think I would have done. I woke up the next morning and it hit me that the only person who could change the situation was me. At the moment PSP has no cure, no really effective medication. Bar a miracle! C was not going to get better so did I want to spend the next 7 years or so getting more and more grouchy, exhausted, isolated. I realised it was horrible for him seeing me irritable and upset. He kept apologising to me which made it worse.

    Things are very different now. We have Crossroads sitters in twice a week when I go out to lunch with friends, C goes to the Hospice for 5 hours another day, I go out two nights a month, have groups of people here twice a month. Tuesday's and Thursday's are days we don't have people in and if it is fine, I take C out, even if just for a walk in his wheelchair. I always ask C if he wants to go anywhere and his thumb goes up. Since PSP we have met so many new people, made many new friends who didn't know C before PSP and he is far more alert when others are around him. He gives them a very firm handshake and he gets kisses from lots of women.

    I keep an eye on carers who come in to shower C until I am confident they are really caring for him but now we have the same few and I am confident they are doing as good a job as I do.

    Yes, it's hard still but I am a far happier person than I was before accepting help. We all cope in different ways when this thing hits us but that's all I was doing before, coping not living. Now life is better for both of us.

    Sending you a big hug and hoping you can get out and have some fun sometimes.

    X

  • Thank you for your reply!

    You are simply amazing with all that you do and you should be very proud of yourself!

    We've had a hospital bed delivered today (downstairs) omg that should make life easier!!

    I can only wonder when Psp will stop overtaking my every thought......and I totally get the cliff thing!! Although that isn't the answer!

    It's all sent to try us and what don't kill ya makes ya stronger....so they say

    Thank you for your support

    I neeeeeeed it

    X

  • Yes PSP doesn't only take over our thoughts, it takes over our houses. C has a hospital bed downstairs and it's a great hit with the grandchildren (supervised). They love having rides up and down and if they sit in front of pillows at the head end and raise the head and foot end they love it; "Nanna B, can you squish us in grandad's bed?".

    I hope your dad likes it.

    X

  • That made me smile, thx u!!

    Grandchildren are such good fun and their world is so wonderful!!

    First night tonight for dad in the new bed! Mum next to him n maybe a night in the sofa for me just so as I can see how we get on x

  • Sorry, I think you have just asked the 64,000,000 dollar question! If you ever find the answer, let us all know. We are desperate for it!!!

    Until then, what do you do? Rant, kick, scream and use this site as much as you can. We KNOW how you feel, may even be able to offer some advise, occasionally. Take each day as it comes. Concentrate on the things your father can do, not what he can't! Educate yourself about PSP, so you can teach the doctors and anybody else you come across.

    Most if all, ACCEPT that help, for your father's sake! What good are you and your Mum going to be, if you collapse under the strain? ZERO!!!!!!

    This is a very cruel disease that we all have to live with and get our loved ones through, you can only do your best. You have already proved you are up for the task, by contacting this page. We will help you with this journey your Dad is on, you now have loads of friends, who know exactly what you are going through, understand the disease completely and are more than willing to listen and help you!

    Lots of love

    Heady

  • Thx u heady!

    I'm gonna use this site now for all the help I can receive and offer likewise!

    I'm in constant touch with the Psp association who I simply couldn't be without and have raised £150.00 in funds and am desperately trying to raise awareness!!

    Big hugs

    X

  • Well Done. We need lots more like yourself, to raise money and get the PSP name out there!

    Lots of love

    Heady

  • Hi, Just like you I get angry and frustrated at times and W is still in the early stages. I wonder how I will cope/manage further down the line like the guys on this site are doing, and who I admire so much. They give helpful advice and are so caring towards each other. So keep posting as I will be doing. Good luck, Nanny x

  • How do we manage? Good question! With a lot of difficulty and a lot of love!

    We are still in the early stages but it seems to be creeping up on us toooooo dam fast!!

    I'd say it takes 2 peeps 24/7 to cope but I'd like another 2 of us!!

    It's constant and there's no let up!!

    But it's a million trillion billion times worse for the person with Psp!!

    X

  • It's terribly hard and the NHS doesn't seem to care as there aren't many of us. I may be being cynical but I think they just want us out of the way. I have to look after myself - no joke. But I do have one or two political connections I am pursuing. Had I not personally succumbed, I probably wouldn't be bothering, which is terrible but just human nature, I suppose. I'm so sorry for your situation. There really isn't any medication. Vitamins B1, 6 and 12 do seem to help motor function a little. Other than that, sleep personally makes me feel much better. Keep well.

  • Awe bless you!!!

    How are you? How long have you had Psp?

    Do you live alone?

    Agree sleep is a great medicine! Does me the world of good lol

    I will look into the vitamins thx u!!

    X

  • I think it's something you are born with. I have had so many weird physical conditions since I was in primary school, it's fairly plain to me. It spiralled out of control when I was 36 but I kept a lid on it for quite some years. Last year, when I was 48, I knew I couldn't handle it anymore so flew back home to die. I don't have much of a family but my brother, the only human being I really care about, if you see what I mean - he is my only close relative still alive - lives in London. Meanwhile, I am signing my way onto charity work if someone will have me.

    I do live alone. Don't like it much but there you are. Vitamins unfortunately won't get you out of the hole. Ask your GP for palliative treatment. Definitely won't hurt!

  • I do think we, the benighted, have PSP from birth but there is some trigger that puts a mildly irritating condition into overdrive, in my case an unexpected and unwarranted divorce. I do live alone. When I was OK, I thought it a great idea to live in the boondocks after twenty years in London. Big mistake. I have just emerged from the worst episode I have ever had and would rather not describe it and am miles away from anywhere.

    Astonishing. I am 50, look under 30, but am dying. I dare not go out because one of my friends told everyone in the tiny village where I live what's wrong with me and because they all think I'm a student or a troubled young writer, I can't even wheel myself to the pub without attracting hoards of sympathy, which I don't like.

    Be that as it may, when I was in Hong Kong last year, I was given a course of intravenous vitamin B1 injections and, remember I'm no doctor, my walking and motion skills did certainly improve.But that was me - I have no idea whether it works for everyone (and, of course, I don't know whether it "worked" for me as I made loads of changes in my lifestyle around then).

    I hope things don't get worse for you.

    Love,

    Tim

  • Hey Satt, I'm sorry to hear your dad has PSP. It really is a bloody horrible condition! For everyone involved especially our loved ones. I've been caring for my mum for just over a year and been through a LOT of hurdles, much the same as everyone on here.

    There IS help on the NHS and from the COntinuining healthcare/personal health budget team but it's knowing who to contact and what to say and tbh to nag like buggary! Think all healthcare professionals dread me turning up with my notebook full of lists and questions !

    Also there are many different meds to try and manage symptoms. What are the main problems your dad is having at moment? Ie, swallowing/saliva/continence/stiffness etc. and we can suggest medications that have helped for our families.

    If you want any advice on getting help in home/funding/meds/OT support in home etc just ask ! We are all becoming PSP oracles.

    Best wishes to all of you xx

  • Hi Kelly

    I'm very sorry to hear about your Mum! It's beyond awful this Psp and sooooo cruel!!

    I'm very interested in learning more about Nhs continuing healthcare and will be calling the neurology team about this today although not sure if that's the right way to go about it!

    My dad is very wobbly like a jelly, love him!

    His walking is very poor and we mainly use the wheelchair now!

    My dad is bordering on incontinence and therefore continually needs the loo!

    His mood is very low, no surprise!

    He now takes ages eating I think it's where the brain is really having to think about lifting the spoon to mouth!

    He complains regularly of back pain!

    Basically as I'm sure everyone here knows my dad is not the man he was! And now needs round the clock care!

    It is literally ripping my heart apart!!

    Thank you in advance for any advice you can offer and big hugs to you and your dear mum

    X

  • You poor dad, sounds like a story we are all familiar with on here unfortunately.

    By all means try the neurologist as first port of call. Mums occupational therapist, physio and neurologist are all based together in a NHS/charity hospice which makes things a bit easier. Ask them about any aids you may need to help with your dad like shower chairs/alarms on the bed etc and more meds to help with symptoms. They also should be able to advise about social help although you will need to speak to the social team in your area. We allegedly were meant to have a social worker coordinating everything but it's been me doing it all tbh so I find a diary and to do lists invaluable! Mum has to see many different departments. Mum now has a personal health budget which your dad may be offered but you really have to state how bad things are to get funding support, especially as most have never heard of PSP!

    I catheter mum most nights and she wears tena pants each day to safeguard against accidents. I also self referred mum to the continence advisory service who provided advice help and resources, they have been great. This is where I'm afraid Google becomes your friend and you may have to start sorting out a few referrals yourself.

    Mum also saw physio about her pain and was prescribed morphine and paracetamol solution (easier to swallow) for pain and has had two rounds of acupuncture which have helped no end! Again you may have to nag the Neuro or GP for referrals!

    Mum also has an assigned Parkinson's nurse who oversees meds to try and help with muscle stiffness. Mum is on benolodopa/levodopa although I know there are a few more drugs they use also. Mum is on a high dose to stop stiffness but she is now reaching stage where really struggling to walk.

    Mum is also on half a sertraline and one amitryptyline a day. Both are mood enhancers and the Am helps with nerve pain and can aid sleep. Unfortunately she's on a large number of tablets a day as she has other conditions too and swallowing is increasingly becoming an issue so she wants a PEG fitted in the short term. Something your health care workers will bee to discuss with your dad at some stage to hear his views on it. Mum eats slowly too as chewing is difficult and hand eye coordination (especially as the eyes cannot look down) means a lot of food goes awry !

    Mum also has nebulisers for cattarh and meds for excessive saliva and a new inhaler for COPD etc but it really does take a lot of organising by family to keep them as comfortable as possible. You will definitely need help for your dad and so having care help in the home is a necessity, it can be exhausting caring for someone with PSP. Your mum will need breaks too and I find mum wakes several times a night and this can be very draining.

    I hope some of this helps ! And again if there is anything else I can help with just ask, I feel I live and breathe PSP and spend most of my time reading about it so I'm like Wikipedia!

    Love to all of you xx

  • Bloody hell kelly your poor poor mum!!

    Equally I feel for you too, it's soooo hard isn't it?

    I forgot to mention a few things, I read everyone's replies yesterday to my mum who ended up in tears but some good came out of this because she has finally agreed to get a carer in to start with 2 hours a week, of course we won't be going anywhere at first as we will be keeping our beedy eyes on the carer ensuring my dad is treated with utter respect!

    We will have to pay for this because I believe to have carers in the uk you cannot have savings of over £23k!

    Mum and dad haven't got much more than that (again makes me bloody sick) they've worked like dogs all their lives and end up having to pay!

    Anyway 2 hours a week will mean I can take mum out for a coffee and just have some "us" time which by God we need, if we don't, something will crack!!

    Omg so much to say but so difficult and time is against me as dad is about to wake up!

    Big hugs

    And thank you!!!!!

    ❤️

  • Hey Satt! Sorry for the delayed response, I tend to dip in and out of this site delivering on my moods and tiredness.

    Im Glad your mum has agreed to some help, it's a necessary evil unfortunately and after looking after mum every day and night bar a few hours a week for only 8 months I was utterly ruined. I'm still exhausted now even with help so better to get the wheels in motion sooner rather than later! And a few hours to had a coffee and feel like a normal person not just a carer is invaluable.

    A personal health budget is when the government give people an allocated amount of money to spend on care needs. I do think it's unfortunately linked to savings ... But you should still investigate further! Plus there should be day centres/hospices you can utilise if only for a few hours. And all equipment etc should be available from neurologist and occupational therapist for free. Get as much help as You can !

    Finding appropriate help can be difficult too, I found agencies unsuitable but have hired a good friend with a caring nature and another recommended person. But even then it's difficult to let someone care for your loved ones, especially as You will probably feel they aren't being as attentive as you'd be yourself ! But you'll get there, and then you can focus on quality time together rather than being tired or irritable because of stress etc

    Stay strong !!! Attend friend and family days with association too, they can be good and also local group meetings, let's you all know you're not alone xx

  • Awe thanks Kelly for all your help

    I shall look into all of this tomorrow

    X

  • Sorry Kelly what is a personal health budget

    I am a great believer in lists, calendars n diary's lol, got a memory like a fish!!

  • I think the B vitamin supplements do help a little with movement. Have you asked your GP for palliative meds like Xanax? Helps me but, of course I am not a doctor. I am very far gone and have been through everything. If you need help and I'm still here, do contact me.

    Watch out for the incontinence - that is really dreadful.

    This is not a geriatric disease, by the way - I am 50 and it kicked in in earnest when I was 36.

    Keep well,

    Tim

  • Have read all the replies and just want to add how frustrating PSP is for family caregivers as well as for the person who has to endure the disease. I have a sister whose husband has Huntingdon's Disease. It is genetic and her daughters have the gene. They have become very involved in fund raising for research, raising thousands of dollars as well as awareness of the disease. THE PUBLIC as well as THE MEDICAL PEOPLE know very little about PSP. It is rare, I have read 1 in 100,000. I live in Montreal QC, Canada, Population approximately 3,000,000. Therefore maybe 30 people have the disease in my area. Therefore not much, if any, money going for research. I also believe

    that many people are misdiagnosed. My husband is now using a feeding tube which has its own problems. He is in a wheel chair, and has a hospital bed supplied by the Government. He no longer has volume in his voice and is very slow to speak. He still has the words but can't get them vocalized. We have to wait (patience). He is becoming rigid and must be lifted from chair to bed etc. I have government care every morning but must hire private care for afternoon and evening care as well as night checks. It has become very expensive. He has a compulsion to try to remove a wet diaper by himself and in doing so well pull out his peg tube. This has happened several times and it involves a trip to the hospital to have a new tube inserted. Last time I was told we would have to start paying for the tube, another financial burden this disease brings.

    My husband was diagnosed 5 years ago. He is still strong and is still aware of everything that is going on. He enjoys going out especially when it involves family and our very young grandchildren.

    I have health problems of my own and am older than my 72 year old husband. Since he had the feeding tube placed in April my family made sure that I was no longer the major caregiver (I can no longer do it ). I am grateful for the caregiving, but I worry about the expense. I have begun to have more of a social life now that I have more help and I try to hide my grief and sorrow in front of my husband. He is trapped in his body and he knows the prognosis. No treatment, no cure. He has a strong will to live.

    I will pass on the message our diagnosing neurologist gave us.

    "Good Luck and Save your Money. You will need it" My advice GET HELP. You can't care for your loved one alone. As Mother Therese told her nuns "Take care of yourself first so you can take care of your loved one who needs you". Also tell everyone you meet about the PSP disease. Most have never heard of it. My family and I are determined to keep my husband home as long as possible. WE believe that he will not do well in a full care nursing home. However if anything happens to me he will need to be placed. This is not the retirement we had planned

  • Omg valbri

    That has made me cry!

    I understand every single word you have said and thx u for sharing with me!

    I'm very sorry about your husband, life is so bloody cruel!!

    So not fair!!

    I do tell everyone about Psp (I'm slightly obsessed)!!

    Big hugs and sending lots of love

    X

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