Hi there. It is my first day at this site. I read some of your posts. Finally felt that i am not the only one who is suffering on this planet from psp patient. He is my father. He was diagnosed by psp since 2012. He fell many times.last one he broke his hip bone.dr. replaced it .. he cant walk unless by walking aid or wheelchair. The thing is that i always feel guilty when i scream, shout on him.sometimes he getss on my nerves. He always do the opposite of what should be done. I feel that he is intending to do so to seek more care and attention.. however me and my mother are there for him 24/7 with no breaks..at the end of the day i cry .. feeling anger depressed and frustrated and i just wish to die. I cant bare it any more. Is he intending to tease us all the day ? Plz answer me..
Please . I need help.: Hi there. It is my... - PSP Association
Please . I need help.
Mia,, Take a step back and put things into perspective....Yes there are times when frustration and real anger grab us all We yell ,curse , look up and wonder what we did to acquire these circumstances ...But then look at your Dad ...think of his regressions and how he is totally dependent on others..do you think thats how HE wants to go out ? My wife has had PSP for 3-4 yrs ...diagnosed 2 yrs ago formally ...I am her only caretaker ..as our boys are busy raising their family's and one lives 1000 miles away....I get very little help from anyone with her care ....and lots of Friends that aren't really friends have disappeared..cause they don't know how to interact with her anymore. A couple of real good friends do visit fairly often and take her for a walk. What good would bitching about the afor-mentioned circumstances do to make this situation better.....His condition is temporary ,and when he's gone you have to look in the mirror and still love yourself. So my insignificant advice is to have the compassion and love for your father and get thru this endeavor. when he's gone celebrate his life and be proud of being there for him ..and hope that if you needed the same accommodations someone would love you enough to do exactly the same .....peace /out ...jeff
Thanks jeff.. i always need someone to remind me that he is helpless now so i can start over again to cope.. i will try to keep it in mind when i get angry.. i have one sister that doesnt offer any help exactly as friends you mentioned.. i always tell my mum " you & me are in this together.. no body feels anything about what we are going through".. i feel what u say and hope you can keep the love and compassion to your wife.. thanks again
Mai , We also have relatives..(her sister) and nieces and nephews that we have been extremely good to over the years, and we get nothing from them which just enforces the fact that you can ONLY depend on yourself in these times . My wife is 65 I am 67..married 45 yrs....42 or so of them more than I could have ever imagined ....so to now have to take care of her is just part of that journey.....she is getting very stiff and ,loosing portions of her sight. Her right leg is way turned out and she will most likely be in a chair by the 1st of the yr...I still make her walk every day until she is tired ...we live in Colorado...She has had an appliance made to stabilize her leg ...like a plastic boot ...It helps but is not that comfortable. My goal is to make another DAY ..no desperation ...just want her comfortable,with no pain ..and to know I love her ...always . You know ..this disease is not fair..and for the mostpart neither is life ..but you play the hand your delt....I hope your dad ..who sounds like he's into this thing a bit farther than my wife , is not in alot of pain and knows how much he is loved ...My wifes brain is still very alert ...emotions and reasoning are not ....My thought s are with you ...
Well said Jeff.
Please share.
Could not find any if your posts.
NOT,
Thank you...I just recently started to want to talk about this situation ...thinking my perspective might help the many people( Children mostly) of the PSP victims . Children have ,and should have, a way different perspective on these situations . Yes, we as spouses have the major role ..if we are able ..and thus far I am ....hopefully our children can assist and complement our tasks and duties,and ours do ...for which I am grateful .I employ a cleaning person ..period ...floors br's dust and vacuum ...the rest I do. She comes every 2 weeks...Children have a different set of responsibilities ...to their spouses and families that should come first .Then mom should get whats left of the energy.....I really feel that anything more than what I do is a gift...NOT a duty of the 2 boys we have ...who are extremely close with their mom. I have sympathy for Mia . but more for her mother ...just how feel.
Keep in touch
My mum is strong woman. Lived a hard life and she is a housewife so it is ok to be home all the time. However the daily routine- starting 7am from breakfast to toilet to changing diper to washing and cleaning then again at lunch the same thing- just kills her.. she screams alot too.. she says she cant take it anymore .. she sometimes gets out to take a breath and come back.. i try to help as much as i can but sometimes due to my work i am not here.. or lets say i ran away alot more than her..
Like Jeff said it is very frustrating but put yourself in their shoes. Do you really think they want to be this way dependent on us. You need to get help are there any carer's you could get into help. They are a godsend to my mother and help us tremendously
Take care x
York please can you tell me what carer do exactly so maybe i will look for someone.. thanks x
We have carers in 7 times a day. My mother can no longer walk so carers come in first thing in the morning to hoist Mam out of bed and wash and dress her giving her breakfast and making sure she's comfortable. They return later in the morning for personal call to check on her needs come back again at lunch then another personal call then they come for her tea call then another personal call then come to put her to bed at night. It has taken a lot of stress of us and my mother who may I add did not want carers think they are a godsend
I would certainly try to get some kind of help which in turn will help you
Hope this helps take care
Ok york i get that ..the thing is that my dad still walks, with difficulty, but walks and i fix a condom catheter for him. I change it every couple of days.. and drive him by the wheelchair to the bathroom so he can clean up.. so there is no fixed times for my dad for anything toilet. Food or bath.. added to that the stubborn pattern he deals with.. that is why it is so frustrating.. maybe at later stage carer would give me help.. thanks.. take care
Hello MaiSalah,
Your post has just made me cry, it's so typical of the feelings we all suffer with when caring for a loved one with PSP. I hope I can convince you that it's so frustrating, also very annoying to try and do everything right in an impossible situation!
My husband has been diagnosed with the dreaded PSP and I hate every minute of it, but I somehow cope because I care about him, I'm sure you will find the strength too.
I'm always losing the will to live when having to deal with day to day problems, but trust me you will somehow get through this, because you love him.
Are you getting all the help you are entitled to? Do you live in the UK as there's lots of help out there, you just can't do it on your own! Contact your Dads doctor or specialist, unfortunately you have to push for help but it is there if you fight for it!
I'm thinking of you and your Mum....
Love and hugs....Pat xx
Patriciapmr.. your words really made me feel better already..i always say to my self when you get angry ..go take a break and then back to kiss him as a way of saying sorry.. the impossible situation as u said is the exact word...and i live in egypt. Unfortanately i dont recieve the help i need but i am trying to search online and so i found this site.. as for my mum.. i am praying for her so she can hang on there. She is 64 yrs and has her own medical issues as well... thanks again pat.. hope you always have the strength and love to cope..xx
😘😘😘
MaiSalah I read you post and felt sorry for you, we are going down this long hard road, we can only take one day at a time. I don't think our loved ones do things to upset us, they are unable to tell us what we want the hear. We all scream and shout, because we are tired, take it in turns with your mother, to have some time for yourselves, not sure what help you get in your country, but hopefully there is something there for you both to get help so you can have some rest from this horrible illness. Sending you a big hug. Yvonne xxxx
Yvonneandgeorge .. just your word" we all scream and shout because we are tired" made me feel calm and peace.. as before i read your posts i already started to hate myself saying where the love you had to your father gone.. now i understand .. thanks xxx
I know who you feel at first I wanted to slice my own wrists. I thought my aunt was messing with me some times yes sometimes no I didnt think it was funny. But as time goes on you see most of it is real for them. My Aunt explained it to me like this she said just trying to raise her arm is like trying to lift 500 lbs to her They can not help it just put your self in their shoes and think to your self what if that was me, you will look at it in a very different light , what if you were the one with PSP and your dad was taking care of you how do you think he would treat you. the same as you are him . Just breath drink a beer or a glass of wine and really think about what they are going through, and their is no hope. no meds and no cure. Its hard and very exhausting but its just what you do when you love someone so love them why you can.
Hugs Kryste
Dear friend,
Please read my posts as well as others and be reassured that your frustration is so familiar to many of us.
Find comfort that you now have many friends who are available to listen and help you and your family. We are here for you.
I pray for courage and patience every day.
God Bless.
Your friend,
Rita
Rita . Thank you.. i already relieved when i joined this site.. thanks for your support and prayers. Xxx
Dear MaiSalah,
All that I have to add to the earlier posts is, be kind to yourself.
The relationship between parents and children is naturally of a different kind to that of a husband and wife and I feel this is sometimes overlooked. One chooses to share your life with ones spouse and hopefully build a great life together and have depths of experiences to rely on when times get tough. This is not necessarily the case in regard to children. Certainly you don’t get to choose your parents.
You have already demonstrated your love and/or kindness towards your Mum and Dad by helping your mother to cope with a very difficult illness. A common thread on this site is that the behavior of those with psp can be so challenging and tiring, occasionally tempers get lost, even with those who have had long loving marriages.
This disease would try the patience of a saint, both for those with it and those caring for those with it, so please be gentle with yourself, just do the best you are capable of at any given time, then you need have no regrets.
Very best wishes to you all, Jerry.
Agree with all. It is important to empathise with the sufferer but also to accept yourself as a human being. It is incredibly hard to accept they are not being deliberately difficult. Sometimes they are.
We all do our best. Don't load yourself with guilt. I say to my husband I am angry with PSP and we will tackle it together.
But we all have melt-down times. Move on. Stay loving. Laugh when you can.
Good luck, Jean x
Dear MaiSalah, please don't blame yourself. We have all been there. I think the hardest lesson I have had to learn is that sometimes my guy can cooperate and sometimes he JUST CAN'T, and he's not being stubborn or cantankerous, his brain isn't working the way it used to. And it comes and goes, so it's impossible to prepare for when a little persuasion might be all you need and for when you'll be suddenly jammed up against total resistance. That usually happens for us when the situation requires fast action - to prevent a fall or spill or breakage, or when my arms are supporting him and about to give out, or when we need to be at an appointment on time. I lose my temper so often it's just shameful. I try every day to do better, and often fail. Sometimes I think that my need to become a better person is why I am where I am. It doesn't explain why he has to suffer so - he's a good person through and through already. Hang on. We do understand. Peace, Easterncedar
Thanks easterncedar.. i will consider that he CAN'T when he get stubborn.. it might help me back then.. and yes you are right about the situations that requires a fast actions..it really gets me so nervous.. u just made me understand more about what i feel.. thanks xx
Hello Mia I know just how you feel, you have come to the right place, my husband has CBD and has fallin many times also in fact this past Sunday he went into the garage and just fell. It's not easy being a cargiver but you are not alone. They can get very stubborn thinking they can still do things. You need to take time for yourself if you can take a walk or the mall talk to friends. They need us to be strong for them. My thing is I go for a massage once a month it's very relaxing maybe you can get someone to come in and just be with your dad. You need to be able to re-charge. Good luck and we are all here for each other.
Marg.. let me ask you .. is that normal that when i tell him.. dad plz put your arm on the arm rest. He raise his arm.. and when i tell him here is your meds.. he said no meds and when i say ok no meds he say get me my meds!!! And it is repeated every day over and over and over.... uhhhhhhh.. same conversations everyday.. i really will consider the massage break.. thanks xxxx
Hi Mia unfortunately that is the norm my husband says the same thing day in and day out. Why do my legs hurt and can't I walk or why can't I ride my bike anymore. It's really not easy. I get the same thing with his meds every night I get I don't take this pill and what is it for? Do the massage thing you will love it I go to hand and stone. Keep in touch. God bless
Marg
Yes, very normal, sorry. But it will change, as soon as you get used to it!
I yell and scream too. "He always does the opposite" and I know they can't help it but it is frustrating. Hang in there.
Cuttercat
Hello Mia... I have read all the responses to your original post. Unlike many of our friends on this site who are our caregivers, I have PSP...diagnosed 3 years ago. Many of the posts here can be difficult to read, but I do so with the understanding and appreciation of just how difficult it can be for all the caregivers. I do this while I still have the presence of mind to do so and hope that I'll be able to retain some of the concerns and frustrations expressed here by so many and even by my own wife. As the disease progresses, I can only hope that I will a good patient... there is no guarantee. It is just a difficult for those of us afflicted with PSP. This is a life changing disease. None of us... patients and caregivers alike asked PSP to hang its hat at our door... hell, most of us had never even heard of it before. Rare disease you read... rare its not so rare when it happens to be you. PSP wreaks havoc not just with the body, but also with the mind. Mood swings, depression, agitation, apathy are but a few behaviours this disease spins. I can go from 0 to anal in three seconds flat and back to "normal" again. And oh yea, my normal is not the same as or yours, your spouse's or loved ones... every day becomes a new normal for me and others... try explaining that to doctors, caregivers nurses and the like. This PSP journey is going to be one hell of a ride and none of us want to get on, but we're all here. When things get so difficult that you think that you can't go on, step back and breathe... tomorrow is another day and it will always bring a new perspective and sorry to say... new challenges. Get your rest, take care of yourself and remember that you're not alone. Never underestimate the importance and value of prayer, and when the load you carry becomes to heavy for you to bare ask the Lord for strength and even to carry some of what burdens you.
Thank you, daddyt. I can't tell you how much it means to have your perspective. You are giving a voice to many of our voiceless loved ones, I believe. I appreciate all the folks with psp who write here, weathering the wordstorm from us carers. It must be terribly painful and alienating always to hear from those on the other side - we are the vocal ones, I'm afraid. I am grateful for and admiring of those who stick with us and speak up.
"Mood swings, depression, agitation, apathy are but a few behaviours this disease spins. I can go from 0 to anal in three seconds flat and back to "normal" again. And oh yea, my normal is not the same as or yours, your spouse's or loved ones... every day becomes a new normal for me and others... try explaining that to doctors, caregivers nurses and the like. "
That all rings so true.
Keep it coming! Love and best wishes, Easterncedar
Daddyt.. your words made me cry. I felt my dad- who i used to know- is talking now.. and i am sorry if your read some posts that may hurt you.. we writing here to help each other and then can help you, and u never know we might be in your place later on hoping that we find someone to understand and be there for us. Thanks again and be strong and hang in there 🌷🌷🌷
MaiSala... Thank you for your concern. I'm very thick skinned and refuse to let PSP define me. I'm trying to give voice to those who no longer have one as easterncedar has said. There will come a day when I will no longer have that same voice. It's important for me to know just how the caregivers are coping and to appreciate how they're feeling. I want to keep that I mind and try to be the best patient I can be, as I journey down this winding road called PSP. We are all on the same team (:
Blessings to you and your family.
Hello Maisalah,
I'm so sorry to hear about your father having PSP.
My father too has this awful disease and is 64 years old. He was diagnosed about 3 years ago, but symptoms started showing up before that.
My father has had terrible mood swings, is extremely stubborn, and would loose his temper a lot. I've been where you are now, frustrated and angry as well as ridden with guilt, for saying mean things and shouting back. But you must remind yourself that this wasn't what he wanted for himself or for you, and that he is not in control anymore, the disease is. This helped me a lot and (often) keeps me from getting mad.
Also now We have a carer (during the day) And I have to say that it has made all our lives easier. I have a better relationship with my father now. We actually look forward to spending time with each other daily (I do not live with my parents). Also it gives my mother a break and she can sleep and rest.
I feel like time is precious and at least this way we can spend quality time together. If you can find someone to care for him for even a short time daily, that would help you and your mum cope. Cause unfortunately this disease only gets worse..
God bless.. Big hug to you and your mother
Much love,
Zsha
Having help at home has made all the difference for us. Oh how delightful a routine can be!
I will keep that in mind easterncedar.. thanks.. my love xxx
I read you post and feel so much the same my dads moods can be terrible . I read alot of people saying it's not them it's the illness . But what if he wasn't that nice before ? my father lives alone and rellies on me more and more . I feel like calling his Dr and saying I m not his career he's alone and see what happens ? I have my own young family to think of .
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