this one is for all the family members and carers!!

Hi everyone,

i'm new to the site and have had wonderfull feedback regarding my dads illness, this site is a great support for family members and carers to let of steam, and share views. its alright having leaflets etc from the psp site but nothing beats experienced views and its a comfort to see in this awful dilema we are not alone.

ive read loads of heart breaking blogs and yet some give me a glimmer of hope that dad mite not be as bad as i thought, theres always someone worse off than yourself. there dosent seem to be a lot of people discussing how they cope as carers and how the trauma of this illness it affects the family. i wanted to say it has tore my family apart, a once close family we are in greiving, all bikering, i feel we are all in turmoil, walking on eggshells and brushing it under the carpet and some members shirking their responsibilities making it harder for others to cope . i also find it hard to switch off from my dads illness and have been accused of neglecting my own family, i took this as offensive how can anyone be jealous of someone who is ill what they would do to be in your shoes. but have come to realise my instant family are growing up and they need mum too, i just need tips on sharing my time and not let my emotions get me down. i feel like i am heading for a break down sometimes and it is only my dad who keeps me going i do hope i get some feedback as to how to come to terms with dads illness and how to balance my time with everyone, as at the minute i seem to be upsetting everone and feel i can't do right for doing wrong.

love to all the carers xx

33 Replies

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  • Hi kades

    I too new to this site often just reading and not commenting. My Mum was diagnosed PSP August 2011, now resides in a care home as Dad could no longer cope with her at home and unfortunately it's no better knowing she is being cared for properly. We visit daily but she has spells in hospital too with constant UTI's. Following a fall from her wheelchair she had a broken hip. Now have a matching pair after last years one too. She now completely unable to weight bear. Her neurologist has given 3 years max but says the way she is going could be six months to a year. We as a family feel so helpless and in her eyes don't care, but we too are living this nightmare every hour of the day. I totally agree how hard it is to cope, balance your own lives with work etc. But we all try to take it in turns to visit Mum and support Dad as he too is suffering. Take each day as it comes and if you have other family you will find as time goes on you will all slot into the caring roles together.

    Not much help I know but don't be afraid to ask for help. We have always been a close family and never asked for outside help for anything but there comes a time when people you have never met before become that lifeline.

    I wish you and your family well x x

  • how long did your mum have the illness before she was diagnosed? just wondering with you saying how long the neurologist gave her? as i am wondering what stage dad is at i have looked on the psp web i think he is stage two. we think he has had it for 3 years. he has double vison, a little dificulty writing, fluid on the lungs but gp said this is not aspirational pneumonia it is heart related. he is slow walking but able bodied, his speach ok, he gets a little forgetfull during conversation, eating ok, breathing bad, sleep patern a little wiry. he does the gym twice per week and pysio. he is 73 and gone from active to dependent on his family and his biggest worry is becoming unable to wash himself and incontinent from a dignity point of view, i have discussed with him maybe we cross that bridge when we come to it and if need be we get someone in to help him bath so his kids dont have to do it for his pride.

  • dear Dibber - all that you say is so true. 3 weeks ago my mum went into a nursing home. She has been gettign unwell for 2 and a half years, and I lived with her for 9 months before things became too difficult a few weeks ago. The last few weeks have been so sad, that she is there and I am in our home, a lovely flat that I bouoght especially for her needs. But as you said, there comes a time when we have to recognise what our loved one needs and what we need. XXX clara

  • hi dibber, yes my family are so proud they won't ask for outside help but yet out of 5 of us there only seems to be 2 of us doing anything. it is hard with work, my own family my kids are resenting my quality time with my dad, my partner cant cope with my inability to cope if you like. my brothers and sisters are selfish and inconsiderate of other peoples feelings and it is so very hard. my dad god love him you can tell he knows there is tension and he must feel a burden i have had it out with family members to do there share and theyve just fall out with you. i have come to terms with the fact that i can live with myself knowing i am doing my best and spending quality time with my dad and if others just want to get on with their own lives and not be put out with dads illness then sod them i hope they can live with their selfish actions when he has gone.

  • Hi kades, Coping with this disease and watching your loved one slowly fade is something you can never be prepared for, no matter how strong we think we are. I've learned that if I vent too much people only pull away or want to tell me what I should or shouldn't be doing, so I've learned to keep it in---not sure that's good for me in the end, but I have no choice now really. I understand what you mean that your partner can't cope with your inability to cope---I've had the same reactions from other people. No advice for you really except that I've just learn not to show my emotions as much. It's not easy, though. I cry a lot in the shower. Hang in there and know there are others dealing with the disease---and the effect it has on our own lives.

  • hi rosemarie,i suffer from depression have done for years so i am very emotional at the best of times, but i know what your saying i never let dad or my family see me cry. my dad is my world nothing i do for him is ever a burden, i think my mistake is putting the rest of my family on the back bolier and focusing on dad to the point i am becoming obssessed. i can see friends faces thinking all i talk about is my dad, my kids teenage and adult get annoyed with me say i am leaving them out. i've got to learn to switch of and share my time equally your so rite no one can prepare you for this thank x x

  • Hi kades

    Mum was diagnosed last year and he reckoned she had had it for about 3 years then. She had had mobility probs for 3 years prior to that following a fall (pins and plated in ankle) then june last year she had a knee replacement. This dislocated and was replaced again. She fell while in hospital and being treated for uti (femur fracture and hip replaced) She was still at home at this point but became so demanding, shouting and physically difficult to manouvere for Dad she was in November put into care. By new year her neck had muscle ridgity and now she constantly head down. Eye sight is practically zero glaucoma in right eye and nothing to help. Does have difficulty swallowing but still eating normal foods, albeit severe weight loss she now put onto suppliments, carers can't force her to eat or drink. Her brain has deterioated so much that she doesn't have the ability to reach out and take a drink or food anymore, she mostly depends on others helping. Unfortunately any kind of trauma mum has had that's when we see the deterioation. The only drugs she is on is quietiapiene and daily antibiotics for her uti's. Also calcium tabs for the osteoporosis. Neuro says this is a quietning drug to help with the shouting but not much help. Sinimet was removed after a few weeks because the drugs don't mix, but we thought there was a increase in the mobility. Mum now can't be moved without 2 carers she's like a puppet just hanging from them. Before her last fall (another hip replaced) she was actually walking very slowly with a frame and dad right behind her she actually falls backwards quite regularly. She's had dvt needing daily injections til june. Now totally immobile we worry for the future.

    Mum has days of not talking but she does hear just sits with eyes closed all the time.

    Sorry to waffle on but so much has happened in such a short time, we constantly on edge for the next hospital visit. I think the Neuro is concerned with the constant infections and severe weight loss that's why he has given such a short time. Glad your Dad is having some physio. Does he pay privately for this? Mum has only had short sessions at the care home but she really needs intense physio but the carers don't help really with this.

    I wish you all well x x

  • hi dibber, let me ask has your mum had it for 3 years or 6 in totall , she seems really bad. there is an agressive form and a slow form the psp specialist said dad has the slow form. dad pysio is all on nhs,he has gym twice a week free, speach therapy, all mobility aids etc through ocupational therapist, weve been blessed really with so much help when i listen to your story. you don't seem to have much help at all and the thing is people dont know the illness, our gp isnt great but hes now clued up as he has a patient, our pysio and OT had never experinced it but there clued up now. dont be afraid to be pushy to insist on the best care for your mum, ask your gp for botox to keep her eyes open insist dont let him fob you off. you must be devastated seeing your mum like that bless her and all of you. dads now got fluid on lungs due to heart know it sounds awfull but i hope before he gets to the late stage he dies with his heart and not suffer this dreadfull illness

    take care let me know how you go on xx

  • please investigate continuing NHS healthcare, you shouldnt have to pay for all the care. xx

  • Dear Kade,

    Is there any way that you could have someone come in for a few hours a day or during the week to assist with your Dad? Sounds like you need a few hours to yourself, and you are resenting the reticence of other family member to spell you from time to time.

    My husband (80) is in the last stages of the disease, still mentally 'there' but getting increasingly difficult to understand. What I felt that I could share with you is that I have come to recognize that not everyone has the capacity to deal with such a debilitating illness. I have seen grown men-- who have not seen my husband in several months--break down and cry at the overwhelming sadness of seeing someone who was once so vital, now so incapacitated. I have watched my sons struggle with their own grief as they watch their father's decline and know that they would rather be anywhere else than having to watch him deteriorate. To their credit, they have mastered the urge to 'run' and have been empathetic and caring. Not everyone can do this......it is too painful... and some lack the fortitude to see it through. Perhaps this is the case with other members of your family and not just selfishness.

    You cannot neglect your own growing family. As a parent, now 77.....I would find it inexcusable if my kids neglected their children and spouses. Your Dad would not want that either. If anyone is to be short-changed it would be your Dad. Remember, this can go on for years and years. With good care, falls are avoided and aspiration pneumonia can be staved off. On the other hand, a sudden upper respiratory illness could take him in a week. We just don't know. Our family was advised that my husband would probably not live out 2010, and yet in spite of inexorable decline he is still basically 'healthy' while completely helpless.

    Have you tried calling a family conference and truthfully setting out your frustration and anger about being overwhelmed with the responsibility and desire to see your Dad cared for and loved during these last terrible years. Bring a calendar and have everyone assist in drawing up a schedule in which they all participate in sharing the burden with you.

    Good luck. You all need each other to stay strong. It is a long road.

  • Mira, just read your reply and you have said so eloquently and it echos a lot of my situation. Frank will be 90 this week, and always manages to give a big smile to his visitors, I have found, through this site, there is no "uniformity" with PSP and we all cope with different aspects of the disease. The advice you have given is terrific.

  • hi mira, sorry to hear about your husband i hope he finds comfort in his late stage of the illness how long has he had it? my family are hell bent on no outside help and at present we could manage amongst ourself the ones saying no help are the ones not doing there bit. I know maybe they cant cope but nor can my sibling and i have tried to have a meeting only to get excuses and turns into a row to the point half of us dont talk anymore. later in life bathing and toilet etc may become an issue with dad his dignity he wouldnt want family doing that. i have said well if that time comes we can get carers to help and your family can enjoy the good times. like you say this could go on for years we are 6 months diagnosed already falling out and shirking the responsibilitys. i am making a concious effort from today to share my time equally so i dont miss out on my own family. its all happened so quick i cant get into a routine, i started a new job and was completing my degree when dad was diagnosed dad saw me graduate and i have lots of memorable moments and its not about qauntity its about quality

    thanks for your advicexx

  • your stories are heartbreaking, and all I can offer is sympathy My husband is in a wonderful care home, where I can visit each day and the time spent together is is better than when I was coping at home with him. Please try to get extra help, my first port of call was Social Services who gave me good advice and helped with a care package until Frank had to go into care. Thoughts are with you.

    x

  • Hi kay, the OT and physio said to dad the other day he should consider outside help if not at present for the future as when your family become your carers you lose your quality family time. dad refused so we have to for now respect his wishes i think his generation and in particualr irish catholic you look after your own and care homes to him and social services etc are taboo.

  • so glad your Frank is in a good care home Kay, same with my mum, although I am sad, I know she is looked after and we can enjoy our time together. xxx

  • hi a;;

    i hav ePSP too and probably have the slow version ( my neuro sort of agreed that i t migh tbe the case)

    as i have since diagnosis been falligng so much but no more broken bones

    i am now iin a ground floor apt with my partner and have got the LPA in place too

    i am down to 5 falls a dya on ave (much bette rhtan 25! and am GOOD

    (if the weathe rwere better)

    i have had a carer comign in since i dJAN 2011 and find it is great ot go out and have someone to talk to outsdie the family and she is v supportive of me

    through th edirect pahymens system of the local council it si possibel to start with a few hours and build it up

    it gives everyoen a break and i am so prone to fallign when i carry anyhthign btu still reclessly trhy to do things around hthe home

    and then fall over or throw myself fwdss!

    my eyes r v dry and i cnanot wear my contacgs any more - a great sense of loss fo appearnance as i am v shor tosighted and my specs r not a scomfortable anyway

    but i

    and nwo hav e a g reat bahtroom wih a bide t as mhy bpwels and urinary problems r gegtign worse

    the loss fo dignituy is v hard to cope with and i have got as an addditonal aspec tfo gthe LPA tha t i do nto want peg feedign if i cna no longer eat or swalllow

    and no resuscitaiton etc

    no liqujids to keep me going when i can no longe rdo anyhtign for myself and cannaot communicate

    and i feeel better now for having done all thsi

    but it has beeen v hard ot face it AND move at ag 66

    more to follow

    lol Jill

    :-)

    ps those of u new to the site knwo my typigwn si v dyslexic nwo

    and my handwritign was one fo the fir st major probs for me

  • hi jill , i think in time dad and the others may realise a little help like direct payments etc is a good thing. dont worry about your writing its fine its great that you are able to use this site and comunicate with others, dad cant control the mouse anymore or see great. i want to introduce him to the site however i am wary as myself being on here have come across some inspirational stories and some daunting ones where i question myself am i ready for the gory details. so i would worry if dad got information he couldnt handle. he says he wants to know everything and i think he should some famiy members are saying no dont frighten him, he knows breifly but not how he could end up. when i get him leaflets he choses not to read them so i think he is new to the illness and in denial hell read them when hes ready. id love to take him to a psp meeting but id be afraid theyd put the fear of god in him with all the uspetting stories. how did you cope with this jill xx

  • Jill, I enjoy your insight and help as you pass on the PSP trail. Don't worry about your spelling as that is minor compared to the great information you share with us all.

    Jim P xoxo

  • Jill, you are just wonderful how you cope with this illness and seem like such a strong, resilient woman. There are incredibly tough decisions to be made with PSP and hopefully, with you having a much slower version, it won't ever come to that for you.

    All my respect and best wishes,

    Cate.

  • Yes Jill, we do all love you so much and appreciate so much how much input and support you put into the blog here. I am sorry that I have not replied as much as previously to some of your messages - I am so pleased that you have moved and hope you are settling in well? Rosemary (my mum) is now in a nursing home which I have found hertbreaking, but it was the right timie. She is actually happy and being very well cared for with lots of positive and jolly visits from us all - family (me!) and friends. Keep in touch with us all and keep us cheerful with your lovely words! :-) Clara XXX

  • Hi Kades,

    I am so sorry your family are struggling to keep things together but to be honest, in the aftermath of the diagnosis, there was, in our experience, a complete devastation and perhaps it just takes time to process things and regroup. Some people take longer than others and what Mira says is so true. Some people cope better than others and we all have our own strategies

    There is no doubt that the burden of caring for a family member with PSP takes its toll on family dynamics and life. In our case, my mum was diagnosed 2 years ago. We didn't have any choice but to pull together as it is just my dad and I who live near one another. I have a brother who lives 2 hours away and my parents have no other family or close friends nearby.

    I feel this lack of local support terribly as if my dad cannot do anything or needs help looking after mum, the buck stops with me. I have 2 young children and work 3 days a week and am in a constant juggling scenario. It seems I am always feeling guilty one way or another.

    What I ended up having to do was to stipulate the times I can be there for my mum. Now that she is in hospital I feel terrible when I cannot visit everyday as only my dad and I visit her! But if it comes down to it I have to put the children first as my youngest is only just 4 and I know that my dad and mum understand.

    I hope things get better with the family and from my own experience, I cope with things, both physical and emotional, that terrified me and I would never have thought possible 2 years ago. The strength comes because you have no choice and it is amazing what you can get used to and deal with given enough time.

    Sorry for the long post. Turned into a chance to get some stuff off my chest too :-)

    Love

    Cate

    x

  • Hi cate, your totally right i have to start saying this is what i can do these days these times its all about guilt at the minute. i work 4 days two days i spend taking dad to all of his appointments etc. the third day is for my cleaning etc and lately dad rings me to come for him again i cant bring myself to say no, so i end up up dropping my plans then in hinesight im exhausted then its a knock on affect to my instant family and spirals resentment. i think as my kids are older teens and twenties my siblings have little kids they think i am superwoman, but no matter what age kids still need their mum. i suppose no matter how much we do when their gone we will always question was it enough i need to take a leaf out of your book and balance my life. thank for the advice xx

  • PLz do not feel guilty

    We all do

    Those who have an illness. And tthe carers

    Lol,Jill

    :-)

  • thanks jill you are living proof of how to get by with this illness, you should never feel guilty for being ill , you didnt ask for this. the fact that your here and spending quality time with your family will mean more to them. i feel bad for moaning i don't want anyone to think my dad is a burden at all i love the bones of him, just finding my feet and learning to cope

    love to all those with psp and their families especially you Jill xxx

  • just lovin' your smiley face Jill

    you are an inspiration to us all x

  • she truly is xx

  • hi

    hes

    but tell that to mh partner

    lol Jill

    :-)

  • Hi Kades My Husband has cbd he is now in a nursing home cant do anything but smile when he is awake and that is not very often any more he is loosing his swallow and has to have his drinks thickened .We have three adult children my husband is 63 they all cope in different ways dont be so hard on yourself you can only do so much it is hard to see someone you love change in frount of your eyes it is such a cruel illness take care . Maryelizebeth

  • hi maryelizabeth, sorry to hear about your husband it must be heartbreaking to see him like tha for all of you , is CPD very similar to PSP?

    your totally right keep strong thats all we can do thanks for your advice

    take care xx

  • I think that the bickering among family members that you mention is quite common among those who are in emotional situations like yours. A friend of mine, a writer, wrote to me describing how she and her sister fought as their parents were dying. She felt that each of them was looking for the other to lean on, to give her strength. I ran this thought past my daughter, with whom I found myself bickering as never before. She felt that it answered her questions about our bickering. Each person wants support from the other, and not receiving it, they get angry, and strike out.

    I hope that by hearing this observation you will be better able to deal with is aspect of your situation.

    My thoughts are with you. Know that this will pass and life will go on - without the love that felt from your father - but I believe it will return to some sort of normalcy.

    BarbR

  • thanxs for the advice in will try that x

  • Kades, Tough dealing with family sometimes. They are often great for support but at times can be difficult to deal with. Maybe if the bickering gets too bad you could arrange to not be with the patient while they are there. If they walk in and bickering starts say politely "I think I need a cup of coffee. Would you mind staying while I go and get one?" and go get one. Just a thought. We must remember that everyone deals differently with a crisis. Some react in anger others become passive, and others become understanding. Our hearts go out to you.

    Jim P

  • thanx jim your comments are a comfort

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