How hard is this

How hard is this, having to live each day as it comes, caring for our loved ones, never knowing what tomorrow will bring. Not being able to look forward, not being able to arrange anything because you just don't know what that day will bring.

Seeing other people make plans for the coming days, weeks, months and years, but we don't know how to do this because we don't know what that day, week, month or year will be like.

How hard is this not knowing what PSP will do next to our loved ones, how will they be tomorrow, what problems will arise, how will we cope.

How can anyone else ever imagine how hard this is, only the people living with PSP know how hard this is.

I don't want to think about tomorrow as I lay here trying to get to sleep, as quickly as I can, in case I'm woken up later with some event that happens within these walls.

How hard is this?

Hxx

49 Replies

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  • I entirely agree. It's just shocking, can't plan a thing. Some mornings I don't want to get up and face anything, despite now having carers in to get him up in the mornings. I'm driven to tears of despair some days and if I should show that then he has the hysterics of laughter..... I cry more, he laughs more. I'm verging on insanity. Toileting accidents produces the laughter, but now we have the crying also, but this then bubbles into laughter. Can it get any worse I ask myself I KNOW it will. Somehow the coping mechanism will kick in. It's no consolation but hundreds of others are in similar circumstances , I try to remember that.

    All best wishes GW

  • yes it is so hard to plan anything, feed up with this horrible illness, just want to sleep all night, wanting to sleep and not being able too, last night I slept for an hour, sitting watching tv tonight so tired, come to bed then I can't sleep. Lay here thinking about different things, worrying about everything, that has gone wrong, not enough time to do things you need to do. It ends up you have to do everything, feels like you are juggling everything, so many emotions, can't cry anymore there are no tears left.

    The laughing has stopped, the agitation has taken over, how I hate these days when George is so agitated, just want to run away.

    All our dreams have disappeared, all that hard work for nothing, the dreams of traveling and doing what we wanted has gone, PSP is one of the most hurtful illness. Yvonne xxx

  • Oh Yvonne, I know how you feel. I don't understand how one can be so tired and unable to sleep.

    The agitation is awful , I could scream So hard to cope.

    Hugh hug xxxx

  • Agitation is one of the worse things with PSP. Not being able to sleep is really bad, not slept properly for over 2 years, apart from the first few days of getting a break, but only sleeping properly at the beginning xxxx

  • Your last paragraph Yvonne is spot on!!!!! 😓 X

  • Yes the broken dreams and a broken heart!

    Cuttercat

  • My husband has not had laughter but he does have crying. God bless you. It is very difficult dealing . My dr helps me with depression with Prozac and sleeping pills it does help .

  • You said it!!! It is hard

  • No other words, yes it is very ................... hard! My husband has finished his journey with PSP, now it's left to me to survive. Not sure how to,, or even if I want to.

    PSP is the pits!

    Sending huge hug and much love, you are not alone in this journey.

    Lots of love

    Anne

  • Dear Anne,I keep thinking of how you are coping on your own and you are obviously finding things tough. I send my love and hope you can muster up the strength you found when looking after Steve, bet you feel you used that all up.

    Big hugs

    Kate xxxx

  • Got it in one Kate! Also just soooo tired still and all patience has run out, so getting very frustrated and fed up with the whole silly business. As Helen has said, it's very hard and doesn't stop after the end.

    Sending big hugs back and much love

    Lots of love

    Anne

  • Anne best wishes many times u helped us all even when it was hard for u. I know you are now on the other side but so hard to pick up the pieces. Big hug xxx Ronnie

  • Anne so sorry you are feeling low, you need to take things at your own pace, wouldn't it be lovely to all meet up? When we are living with PSP, we don't want our love ones to suffer, then when the end comes, it must feel like PSP has won? PSP stinks . Yvonne xxxx

  • Anne you have given us all inspiration to carry on, remember what you use to say to all of us, you are a wonderful person, you willl carry on , time will heal your pain, but never take it away, but hopefully make it easier. Yvonne xxxx

  • Thanks Yvonne. At the moment sat here in Gran canaria, with my daughter, drinking wine, over looking the sea. Life does improve, or at least you can make it bearable.

    Lots of love

    Anne

    Ps. You are right, PSP did get the better of me, but oh boy, did I give it a run for its money. That I will never forget.

  • You sure did Anne, you were very strong, and you made us strong with you, enjoy your wine and the nice weather, raining over here. I am sure things get better, but it is only a while ago, it takes time. Yvonne xxxx

  • I AGR EE WITH. WHAT HAZS BEEN SIAD

    LOL JILL

    XXXX

  • Yes it is. Something we will never forget?One of the most cruel ways to die. There are others equally bad though. Nobody knows about any of them until our loved ones develop them?

    Heady of course you want to live. You are one of my inspirations. One of these days we will meet! Not bringing the eye candy though!! 😁

    Lots of love and hugs to you. Same to everyone else battling this themselves or with their loved ones. What am I doing up at this time? Hate going to bed that's what!!

    Marie x

  • What... no eye candy?

  • Tim no way! Not going to be arrested for kidnapping an innocent! 😄

    Marie x

  • Yeah, what's wrong with eye candy!!!

    Lots of love

    Anne

  • Ridiculously bloody hard Helen! It's take every bit of strength we have getting through each hour and I hate not knowing what will happen?! Best thing really is to live for today but how hard is that?! Hugest hugs x

  • Hxx

  • I'm with you on this Helen, as is everyone else I'm sure.

    I don't live with my Dad so I'm able to go home at the end of the day but he's forever on my mind, waking up in the morning with a sense of relief that there's been no phone call in the night.

    It's my 50th at the end of the month and I've had to cancel any plans for a party, how can I plan that in advance, I'm exhausted and always emotional.

    It's a horrible disease & oh so sad.

    Sue xxxx

  • This reminded me so much of myself when I was helping my dad. When I didn't get a nighttime call I was surprised and then when I thought he would be ok there was a call. I would have that horrible feeling when the phone rang. I had to change the ringtone since it gave me a feeling of panic.

  • So very true. People don't always want to listen either they ask if your ok and we just go ok thanks,there is no point explaining as they don't and wouldn't understand how our lives gets turned upside down as well.

  • Hxx

  • You summed that up perfectly Helen. I took a gamble at the beginning of the year and booked a family holiday in a holiday cottage that has been converted for disabled use. As the day grows closer I am more worried than excited as I know I have all the gear I need at home that won't be there. Upside is I will have the family to help out but I will be doing all of the things the carers normally do so not sure how much of a so called holiday this will be. I know they say don't book to far in advance but trouble is all suitable accommodation will be taken. Double edged sword comes to mind.

    Other than that I feel there is little to look forward to as our world grows smaller and smaller.

    Love Kate xxx

  • Thats why Chris being in nearby Home worked so well. I had a break from the regular night and morning things. I cope alone and it was good to be relieved of it.

    The big benefit you will get is the company. They will also help with feeding etc.

    I do hope it works well for you, Kate.

    love, Jean x

  • I AGREE W U`111

    lol jill

    xxxxx

  • I'm up in Yorkshire in mid June, Jill. Hoping for some sunshine. Are you going to get up there ?

    love, Jean x

  • Yes smaller and perceived friends have scattered

    Cuttercat

  • Dear Kate and Fellow Members:

    This is the first time I've replied to a post. I appreciate all that everyone shares on this website - it is extremely supportive and helpful.

    My husband of almost 42 years has CBD and PSP with Parkinsonism. When he was at long last diagnosed he had been retired (totally unwillingly) for a year. It took 2 years to get the full diagnosis from Columbia Neurology in New York and MGH Neurology in Boston. Both excellent neurologists! When we got the initial diagnosis of CBD we realized my husband eventually would need hands-on care 24/7. I retired on June 30, 2014 to be with my husband. We were very fortunate to be able to sell our Connecticut home (very reluctantly and sadly) and move in December 2014 into an independent living apartment in a lovely "continuing care retirement community" (CCRC), in Massachusetts near my dear childhood friends and our son and his family and my sister and brother in law. They are nearby - 1.5 hours away by car, other son and his family accessible in NYC by car. We love the area and fell in love in 1974 in Cambridge, MA so feel like we are back in much loved, very familiar home territory.

    After 11 months of fully caring for my husband by myself - he had an increasing number of terrifying falls, head gashes, ER visits and stitches. I became completely exhausted and was hospitalized with pneumonia. Long story short, the retirement community team, comprised of RNs, director of physical therapy, social worker and longterm care physician met with us and encouraged respite care for my husband in the attached longterm care licensed nursing facility while I recuperated. During my recuperation the nursing facility fully assessed my husband's needs and strongly prescribed either 24 hour care in our apartment, or stay in the longterm care facility. After doing a "bottom line" financial comparison I realized that the less expensive and most supportive option was for him to stay in longterm care. His brother, who lives far away in Wyoming, came to visit at this time (December 2015) and he and our whole family supported us in making the extremely painful, agonizing, hardest decision of our marriage. My husband agreed on the condition that he have his own private room (comes with with wheel in shower, sink & toilet with commode seat.) At the time he was in a shared room with a man, sadly afflicted with severe Alzheimer's who woke my husband numerous times in the night with either wanting to chat or violent outbursts of rage. A private room thankfully was soon found! Fortunately we have longterm care insurance which helps defray part of the cost of the room and board. Medicare only covers the nursing facility ' s doctor's care and his prescriptions, not room and board, thus it is very expensive to maintain both of us here - me in our apartment and him in care. We both agree, however that it's totally worth every $ of our retirement savings. I get him out of the nursing facility every day, we have dinner every night in the lovely dining room of the independent living building, attend concerts, movies and lectures there together, have friends and family visit in our apartment, go outside on the lovely flowered terrace overlooking the beauteous marsh, river and trees in nice weather. I take my husband out for car picnics as I can no longer transfer him in and out of our Jeep by myself, or push him in his wheelchair myself as I developed a hernia doing so for 18 months, which required surgical repair this March. With the help of PT, I'm going to find and purchase an attendant-controlled battery powered foldable wheel chair and a wheelchair accessible car (not a van) so we can seize each beautiful day to the fullest together and with our dear family and close friends, while my husband is still willing and able! I thank God that he is blessed with complete stoicism, patience and maintains his subtle, wry sense of humor despite losing his work (accomplished environmental lawyer), his ability to walk or live his right hand, arm and leg, and his ability to read (major beloved occupation!) Now he enjoys listening to books on a special tape machine from Perkins Insitute for the Blind, through a Federally funded program. He is sad about losing his ability to get on the floor and run around with our three young grandchildren whom he/we of course adore! In addition he's lost his ability to hike (climbed Mt. Kilimanjaro and Mt Rainier and many of the highest peaks in New Hampshire's White Mountains), kayak, row, swim and sail. We had dreamed of enjoying all these things, traveling and working for Habitat, after we retired. Not to be. But we are blessed by being able still to be with family and friends. Close relationships are critically important and supportive. They literally help us survive day to day.

    You all are right - these are extremely cruel conditions and take all we have to give. More on that another time. I am planning to write an article describing our/my experience in hopes it may help others - just at the starting point. Writing to you all has helped me to look back and summarize the months of dreadful, painful adjustment.

    Kate, we have found it extremely helpful to hire a carer (A CNA here in the States) from a local Home Care Agency to do the morning toileting, shower, shaving and dressing when we are away from home with family and/or friends. This relieves a good deal of the heavy care pressure from you and family members. Then they can help (if their backs are strong!!) with transfers for toileting, napping and bedtime if needed, or you can hire the carer to be there all day and evening til your spouse is settled in bed. I give my husband a "bird bath" on the bed on a waterproof, comfortably quilted bed pad and change him, adding 3 Attends (found to be the best!) pads to the Depends diaper or pull-up, put on undershirt folded up at his waist so it doesn't get wet, tuck him in and he sleeps all night, albeit with heavy snoring and alarming diagnosed sleep apnea! (He can't tolerate a C-Pap machine.) I sleep next to him when we're away so as to help if he needs something.

    Be sure to take your raised potty seat with handles, or commode chair for toileting and showering. We use it for both without the removable bucket. And of course wheel chair, scooter or walker.

    Hope these recommendations prove helpful to you. Having assistance is a critical key to a happy, successful trip, so you and your spouse and your family can fully enjoy the holiday and be relieved of a major part of the hands-on- caring stress and not come home drained and exhausted. It's not inexpensive, yet worth every penny!

    All best wishes to you and everyone reading this long epistle!

    BHill46

  • Hi

    You know I just wish I knew how long the journey will be. How stupid is that, none of us know about our own mortality let alone someone with PSP!

    I am devoid of any form of anticipation of enjoyment now which involves taking Rog into a gathering of friends and family, not for any other reason than the sheer exhaustion trying to cover all options, continence, choking , spraying everyone with his drink, access and the inability to totally relax.

    He still tells me he wants to go, but I always ensure contingency plans now, lunch out on Saturday with family, yes I'll make the birthday cake , but have told wise daughter where it is as last time we were in A/E for six hours !

    Have the best weekend you can

    Julie x

  • I wish I knew too Julie, how long this journey will continue, I'm sure lots of us do?!!! X

  • Oh Helen you have just summed up my feelings,frustration, sadness so eloquently. No one else seems to get this. If one more person tells me how lucky I am I will explode!!! A journey without direction we can control and such uncertainty.

    Your post makes me remember I am not alone in this journey. Together we will survive the horrors of PSP.

    Heady I feel for you, there are so many days I just wished this journey was over but then as you point out we have a new journey and new challenges to face.

    Take care everyone as we all tackle another day

    Xxxxx

  • Why does anyone tell you you are lucky ?

  • Or what a great job you're doing, and don't think I could do what you're doing! Ring any bells? Xxx

  • That makes me want to scream !!!

    xxx

  • Yes lots of people say that x

  • Tippyleaf I don't understand how anyone could possibly think someone with PSP or their carer could be lucky? Do these people know what they are talking about?

    Marie x

  • Helen,

    Your message is heartfelt to me . I am my wife of 46 years caregiver.....she has had this shitty disease for 5-7 yrs ..diagnosed for almost 4 yrs. All that you stated above is 100% valid ,and equally depressing. As you know some "friends" that see this condition we battle are no longer friends , they choose the other couple they once knew and reject the differences in this couple . And some people that were acquaintances have become closer to you and accept you for what you have become ....hooray for that transition . NO-ONE knows what we are going through and I'm not sure that's a bad thing. I don't need a shoulder to cry on I need stronger legs to stand on. There are hundreds of us trying to make "that" person comfortable, peaceful,clean , full, and able to minimally meet each day. Thats my focus ,If you are a loyal,loving partner and are going to see this thing through ,it should be yours as well.....my wife quit teaching at 62 because she had trouble speaking ,yes travel, vacationing, were in the plans ...I was totally pissed for a while about the uncertainty of our and MY future ....but it passed and I take 1 day at a time and make her the priority and look at it as how can I feel sorry for me when she is the real victim . For every situation that causes me frustration she has "that" situation " of I can't feed myself, I can barely talk, I can't bathe myself etc. etc. I cant go from pt.A to B.....My inconveniences are 20% of hers ,my work load is more than when I had a full time career ....no-one ever said life was fair ...but it is life ...keep up the love and strength ...jeff

  • Thank you Jeff, I will see this through, we will do it together, and I know that whenever I feel pissed off or down, C would be feeling that twice as badly and probably nearly all the time.

    Day at a time is all we can do

    Thank you

    Hxxx

  • Jeff

    How very well put that was. So very very true too. As for friends...well I would never have believed how alone you become. When your loved one dies you will be alone again! People who were kind to me when my husband was ill have now actually vanished! Unreturned phone calls the lot! If I were not going through this I would struggle to believe it.

    Marie x

  • Oh how I know. Heartbreaking and so true

  • Sending hugs. ❤️❤️.you may feel alone but you're not. We are all here. And it's ok not to be ok.

  • Helen everything you've said is spot on, but as Heady has said when they're gone you have new and difficult things to cope with, we can't win I'm afraid, this disease has to be the worst I have come across! I'm missing Keith so much, I would do absolutely anything to have him back with me, I feel so lost and empty, I thought I felt bad enough when he was alive but the feelings I have now are so different from anything else I have ever experienced 😞

    All I can say is take one day at a time, take deep breadths, you will manage somehow...

    Love and hugs....Pat xx

  • Thank you Pat

    Hxx

  • So well said

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