Why don’t others understand

Just something Mum and I are discussing

Why is it no one fully understands our situation (when I say our, I mean everyone) on here!!

Obviously the answer is, because they are not in the same situation (thankfully)

But don’t you find it annoying/irritating that friends (most of) don’t get your situation? We do!

I know life goes on, but this is a rather big bug bear of ours

How bout you? X

68 Replies

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  • I DONT KNOW

    PERHAPS ITS BECAUSE WE PUT A GOOD FACE ON TO OTHERS WHO DONT HAVE PSP

    LOL JILL

    XXXXX

  • Bless you Jill! Good to hear from you! How are you doing? X

  • Hey Jill, you sound great! How are you? Lovely to hear from you.

    Lots of love

    Anne

  • Good to hear from you too Anne, how are you these days sweet lady? And as you said good to hear from sweet Jill as well. Hugs to you both!!

  • Nice to hear from you Jill xx

  • PS. I HAVE PUT YOUR NAME FORWARD AS CHIEF BLOGGER OF THE YEAR

    LOL JILL

  • Jill how have you done that? We could all support Tim! He does a great Blog of what it is like to actually have this. I would voite for him and anyone who has ever read his blog would. Certainly people on this site.

    Marie x

  • I agree with you people just look at me and say you look so good you know that saying looks can be deceiving well that is MS and sometimes I think people think your making everything thing up.

    They just don't get it.

  • If a lot of the medical profession haven't heard of psp , and we have to explain to any one we come in contact at hospitals , dentists , etc. What chance do we have trying to get( Mr Average) to understand the problems we cope with each day. Progressive supernuclear palsy needs more publicity . Maybe stop useing (psp) and use it's full name .I've noticed people listen and seem more interested when I say" progressive supernuclear palsy".....Brenda xx

  • Well said and a VERY good idea and so true....They do stop to listen when I say the full name and not just PSP.....It raises the hair on our skin but it's just a bunch of letters to others....

    AVB

  • I like that idea... even though it's a mouthful.

  • Ps..I also carry a brief note in my purse .with symptoms and what to expect , also who to contact in an emergency, ..Brenda. .x

  • Amanda I think friends, tend to steer away, I think they tend to say oh you look well, you think to yourself I wish I felt good, I am bloody tired, but what is the point of saying anything, even family say oh you are going through so much, we feel sorry for you, but never come and visit, by family I mean brother sisters, it's hard, because if it was one of them, I would be there. Yvonne xxxxx

  • I know what you mean but i. Do have to say my sister do get it but I do see there part to I try to stay positive but as you know it’s easier said than done. Because really they don’t need to hear the negative especially the sister that lives far away because I know she wants to help me but it’s hard for her being far away and having her own issues. But she does call me allot.

  • Totally agree Yvonne x

  • So agree you become invisible

  • Yvonne you have hit the nail on the head! It hurts like hell that people avoid you. Sadly that happens after you are alone too. Maybe because people are afraid you are going to be depressed and want to talk about what happened? I really don't understand it to be honest. I have had a friend who vanished but came back but another who was there when I needed support has vanished. I haven't seen her since before G died! I have phoned her a few times and asked her if she fancies going out for a coffee but she always has an excuse. Last time I thought if she makes an excuse again I won't ring her again. She did, and I didn't!!

    I can only think she falls into the category of people who think you will only talk about the person you have lost.

    So I have been trying to make new friends but it's not easy! Sad isn't it?

    Love and hugs to you.

    Marie x

  • I have one friend, this is what happened we went out for lunch and a ride. Which Would’ve been fine but I was in the car alone time which is not a good thing because my legs got stiff. When we got back to my house my legs gave out good thing my older son was home to help me out of the car. She has come over to my house a few times but not to go out to lunch which is kind of sad. The other day she came over and said oh you and me and my husband should go out to eat. Which is fine but I would rather just go out with her. I think she is afraid to go out alone with me. It’s sad. Something similar happened to my mom when she was diagnosed with cancer she had to supposedly good friends but when she was diagnosed they never called again people thought they were going to catch it

    I don’t understand people

  • You know I think she is scared you might fall and she wouldn't know what to do? I can understand that too because I constantly worried about my husband falling. It is a big responsibility if she is alone with you? So take her up on that offer of going for lunch even if it does include her husband.

    Maybe she could visit you at home sometimes? Then you can have a chat together to make up for having her husband there when you go out?

    Marie x

  • I don’t understand them either 😥 x

  • Friends, the old ones scattered like roaches. Gone. But one or two new ones have been made. Wierd how the people you think will be there are not and the ones you would lest expect are. I hate it because I'm still here. I still exist. Alas we are forgotten.

    And, yes, Yvonne, I will never forget this and will pay back so many others in the future. No family either.

    Cuttercat

  • I think most people do care, yet it’s difficult to feel empathy and sadness always. I think it’s sad and even a little scary, especially when others cannot really do a lot . I think if you reach out to others and ask for their support, you may be pleasantly surprised . It’s just all too bad and too sad for others to even imagine.

    I am thinking of you and pray your days get easier and brighter.

  • Thank you x

  • Satt, we had this very discussion concerning my daughter in law ...

    My son had a family meeting because his bride was feeling slighted from us (me and my other kids). She came in at a time when we were not very welcoming and she was not very understanding....and how could she be? The only person she experienced dying was her grandma; of natural causes. It's been 7 months but still PSP has claimed another victim, our relationship with the the newest Birke. We did not know that she was feeling this way and frankly I did not feel that we had been excluding her emotionally but that does not matter. However, after writing the next paragraph , *I see how she could feel this way because we did exclude her ....

    ...So I said that two things need to happen, 1) We, the family, need to start over in developing our relationship with each other and be more aware of her needs as well as our own. and 2) She needs to let us approach her. *She has a tendency to talk loud and long about herself and pretty soon you have to shut her off because it is exhausting .....my son says she does that for the same reasons introverts shut themselves off.....I told him that a good way to monitor ones own "voice" was by limiting it to 3 minutes before giving it up to the next person in the conversation.....(of course you can see by my writings , that is difficult for me as well...hahaha?)

    It was a good talk . Hopefully we will learn, and grow and contribute to each others joy....

    Love ya ,

    Andrea

  • I have to tell you know something my husband as my mother would say as a gift to gab. He has great things to talk about but there are times you need to limit yourself I’ve gotten it to the point of rolling my fingers around in a circle and sometimes he gets it and sometimes he does get it or you could do the cross in the neck well that’s good for a husband and wife but not for anybody else to do. But as you can see by my writing I also have the gift to gab oh well maybe it’s rubbed off on me LOL but everybody has to have there time to get there feeling out there.

    It’s not just your family

    Good luck.

  • Indeed ssdw!

  • Bless you Andrea x

  • Because they can't bear to see ! We shield them.

    I have good support from children and friends but since Chris got worse I have given him a drink when they are there so they see what I mean by choking. That has been enlightening for them.

    Now I am old I realise how much I didn't understand when my parents talked.

    Its how it is. I am very lucky with my friends - who step forward.

    love, Jean x

  • I’m pleased you have good friends jean x

  • Hi Amanda

    Because they have not lived through it like us.

    Can you understand a Venezuelan woman who walks though the forest at night when predators such as poisonous snakes are out as she crosses the border to trade so she can feed he children? She never knows whether she, in that female group, might die that night and her children loose her? They run other risks too with the border guards... not shooting.

    I have met such people, they shrug as we do and say, "I do what is necessary."

    My family cannot understand because they chose distance rather than feel the pain we are suffering.

    We do what is necessary. No-one can really walk in our shoes as we do.

    It is sad, but I accept it.

    Warmly

    Kevin

    xx

  • Wish there was a sad button instead of like x

  • Makes good sense Kevin! How are you and Liz? X

  • Hi

    We're good at the moment :)

    I am having a bad typing day - the cat is jealous of the keyboard and keeps walking all over it!

    Waiving n hugs

    Kevin

    xx

  • *-* meow

  • She has taken to sitting, and sleeping, on my desk. She is a rescue cat. It took a year before when would stay in the dame room as me. She would run off in terror if I walked in. Now she has taken up walking on the keyboard if I don't pay her enough attention.

    She managed to write 'Poooh' the other day. Which is really what I wanted to say in that email, but it was impolite.

    Smart cat.

    Waiving and hugs

    Kevin

    xx

  • hahaha....I can just see your cat 'typing'! My cat locked my keys in the large cap position I think she fixed it because for years , the keyboard would not be fixed!

    Pets , can't live with them.....can't live...with them.. hahaha

    ;)

    Andrea

  • What a poetic comparison

  • I always wanted to go on the stage. But my mother wouldn't send me to RADA. If only she knew, what a brilliant actress I would become, without their help. I guess everyone on here, is in the running for the Oscar!

    Lots of love

    Anne

  • Agree totally Anne, how are you? X

  • Been on a bit of a downer recently, but coming out the other side now, life is starting to have a bit more meaning now.

    Lots of love

    Anne

  • I've been thinking that I need to extend those invitations to my family and friends, too -~ they can't read my mind!!!!😄 I know- crazy - but people do love to help and will drop everything to run to the store or come stay with Jack while I run out .

    I often wonder why no one ever asks me any questions - I wonder if they are afraid they will make me cry!?!?! That's kind of funny. But, I have done the same thing - I saw a friend at a wedding after she had tragically lost her daughter and I Failed at the encounter. I couln't speak and ended up avoiding her the rest of the evening. Just what are the social skills needed? Who tells you this stuff?

    On another hand I think people think we are "sad" and we are not. Which is also confusing for them.

  • The disease has been going on so long that people forget and go on with their lives. No one asks if we need help. I have two caregivers that I pay directly and that's my social activity now.

    Cuttercat

  • People just don’t get it because they don’t see what we see and don’t feel it. Not that I want anyone have what we have:(

  • We have been quite blessed with friends of my parents. When my mum was diagnosed, she had been falling a lot and had broken bones often, so her friends asked what was wrong. Once we had the diagnosis we told them. Lots of them seemed to prefer to ask my sister or I rather than our parents, almost as if it would be to difficult to talk to them. We had info from PSPA which we gave out and told others quite bluntly, so they would understand. Some have fallen by the wayside (I think they don't want to be in the way) others have been great. Taking meals round to eat with them so mum doesn't have to go out, sitting with mum while dad goes out etc.

    It definitely helps to tell and be clear, my daughter has recently been diagnosis on the autism spectrum, and most of our friends and family are surprised. Unlike boys with autism which are easy to see, girls hide their symptoms well, especially in public, so at home we got all the difficult behaviour that eventually led via the doctors to a diagnosis. But we hadn't told most people about her negative behaviour, so their was no sympathy and surprise at the diagnosis.

    If people don't truly know they won't be able to help. Also some people just can't deal with stuff, and will be unable to be sympathetic whatever. x

  • I agree. Its important to give people the opportunity. How they deal with it is up to them.

    Some surprising reactions. People who were not particularly close have been really supportive and others disappear. x

  • Hi JA10

    I hope it all goes well with your daughter.

    You must have a lot to deal with.

    Best

    Kevin

  • I am often told "you are always smiling" ....and yes on the outside I am ... but no one really knows the desperation and turmoil going on inside. Looks can be very deceiving. Jx

  • Hugs to you zeberdee x

  • Returned with thanks Sarah. Jx

  • Absolutely Zeberdee! Spot on! X

  • My mother-in-law definitely has NO idea of what it's like. She calls on a weekly basis to enquire how much longer this 'ridiculous situation' is going to go on. She hopes very much we have a DNR order in place for my dad, and "how much longer did you say he's got?" She hopes he will "pop off soon" so that we can have a rest. Needless to say, she's got short shrift on many occasions. One hopes she never finds herself in a similar situation.....

  • Wow! Strange behaviour! Mother in laws eh?! X

  • I am shocked!

    Nothing much to say to that... Except perhaps to tell her your considering a Euthanasia Clinic... and would she quality test it.

  • BRILLIANT!!!!!!!!!!!!!!!!! You've made my day!!!!

  • hahahaha Kevin your'e so mean....hahha

  • I find it really disappointing to say the least that because mum is in a wheelchair she is either ignored or patronised. Having said that.... I took her to the theatre on Friday night to watch forbidden nights (loads of muscle bound men) and they were searching bags for alcohol. When it came to us they looked very sympathetic and said 'we know you wouldn't have alcohol' hahaha in we went, bottle of wine and two plastic cups, two very tipsy and excited women not only front row seats but free wine also 😁

    We have finally found a plus side 😍

    Sending hugs your way xx

  • Brilliant Sarah! Well done to you both! 🍷 x

  • Hi Amanda

    It used to bug me when they don't bother i.e. Family but I now look at it that I owe them naff all and nothing to thank them for it's there loss not ours

    I think it's fine as when we all message on here at least we are talking to people that know what's what

    Hope all are doing ok

    Take care

    Sue x

  • I love your style Sue, owe them naff all 👏👏👏👏👏 x

  • Same with my lot. I think one brother and his wife cannot cope with illness and my other brother doesn't quite get it. Every few weeks I get a text asking how we are doing.

    The nieces and nephews make a little more effort and email occasionally. I ignore them all now.

    Liz's sisters do come and visit, but they get so distressed about he state.

    My neighbours are far better. They always ask how we are doing and all of them have offered shopping ad said call them at any time of the day or night if we have a crisis.

    Ah, well.

  • For me, this aspect causes a second level of anguish about th the condition. I’ve come to understand CBD and am perpetually grief stricken about it and what it’s doing to my mom and family... and then you have someone else that comes along and makes a comment that shows their complete lack of understanding about the circumstances (usually about behavior), and that causes me (different) pain as well.

    I can’t tell you how many times that I have to tell PT and OT professionals that their goals for improvement aren’t fitting with the condition. The latest PT person has been telling mom she has had a stroke (left side) and no matter what she says to him, he doesn’t believe her. And yes; I have a very easy to understand single page description of her condition in her care book (which I’ve highlighted the most relevant issues), and every week I review it with them in person and am constantly telling them how something is a direct result of the condition (like not being able to forward plan causes great anxiety in my mom when there is a change in routine - and that she’s not trying to be difficult when there is a new cadre of aids). I’ve gotten to the point that I just giv3 up trying to make others understand.

  • I feel like that too, sick of telling ‘some’ people the same thing time and time again

    It’s psp which stands for progressive supra nuclear palsy, then running through yet again, what can happen, I often tell people to go on to the pspa but I feel like saying I’ve told you this 3 times already!! Grrrrrr

    X

  • Well professionals should understand.

    When I get a new carer in I do a quick verbal.

    Two headings:

    Risks and their management

    Care method (different from a care plan - its how Liz likes it to be done.)

    All said with a welcoming smile. Most of them get it after a few gentle corrections... Some don't and never will.

    Like you we are locked in a constant battle to keep things working.

    I tink most carers get battle fatigue from time to time.

    Wishing you the best of it.

  • I like that: care methods. Some can get really locked into the care plan - and completely miss the boat.

  • Because PSP is so rare and misunderstood even by medics.......you have to live with it to know what it is.........best luck x

  • Generally people are involved in there own lives and don't like to listen to p

  • •people with problems. We live in a very selfish world. 💛🙏

  • I know exactly what you mean I do have people once in a while who do care but they are not always around. It is very frustrating.

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