When I was growing up I was lucky enough to be be envied by many of my friends because I had such "cool" parents. In fact, several of my friends came to live/stay with us at various intervals because they had fallen out with their parents and mine were always there to lend an ear.
What I'm finding hard at the moment is that my lovely friends and people that my Mum and Dad helped as youngsters over the years (and believe me there were many) are all incredibly upset about Mum having PSP and want/need regular updates on "how she's doing?"
What do you say?
Dad and I have talked about this and about how it now feels necessary to be absolutely honest with people but god it's hard.
My Mum's god-daughters want regular updates as do many of my friends and I'm really struggling to know what to say to them. It seems that so many of my conversations are now about Mum's illness and as much as I try and talk about something else, these people also need to "talk" about it and tell me how sad they are and how important Mum has been to them. I love and appreciate that but I don't know how long I can keep talking about it all.
I've tried the "sadly she won't get any better" in response to "hows your Mum doing, better I hope?"
I've tried "she's not doing so well I'm afraid, that's the nature of the disease" and as for when people tell me how "well she looks"......I have no answers, they have no idea.
I was thinking of sending an email round to those who keep asking (out of love I hasten to add) just saying that I'm finding it really difficult talking about Mum and that if there is anything of significance to report I will let them know but that I find it too upsetting to constantly talk about it.
What do you think???
Your wise words would be greatly appreciated
Written by
Katet68
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Yes, a general email with promised updates as necessary to all concerned can be a big help to you and to them. Folks want to show concern, but if you just tell them that this is how you want to share the information because you can't handle it otherwise, they will understand. You might also give the ones who are able some concrete suggestions of how to help if you want some. If and when and how to visit, respite visits for you and your father, food or whatever - or if you need nothing but to be left alone. Don't be shy about telling people exactly however it might work best for you. Hang in there, Love and Peace, easterncedar
Thank you Easterncedar, I'm sending out the email this weekend. Sadly most people are not near enough to offer physical help but I"ve thought of some other suggestions...x
Oh Kate, I really don't know!!! I know how you feel, when people ask me about S, "how is he" how's he doing". What can you say, " that he wet himself three times today" "had a good night, only up four times"" didn't need to change the sheets last night!" " has only fallen three times this week". " had to teach him how to pee again yesterday". No of course you can't say any of those things, it's just the normal time honoured reply, " he's fine". " well as can be expected" and all the rest. Don't know if this is right, but it does keep people quiet.
Nothing is easy with this damn disease. I suppose the answer to your question, is do what ever you think is right. Each person will happy with a different type of answer, the secret is finding which one they want and need and that you feel comfortable saying!!! If you are not in a good place, when you are asked, I would just go with " as well, as can be expected". Most people will recognise that is time to change the subject!
Lovely Heady, wise words again.....I have tried the "as well as can be expected" but some people are just so insistent on details. I'm going to send the email and offer to update every couple of months, that way they might back off a little.
I think some of it is people don't like to ask Dad and I understand why but I don't need to to keep going over and over it either.
thank you for your kindness xx
Kate, I agree with easterncedar. I also found that saying something like "well, you know, it's a progressive disease and it lives up to it's title" satisfied those people who wanted genuinely to express their concern but I felt did not really want a detailed answer - certainly not the type that Heady amusingly caricatures, nor even the more bland "her arms are getting more rigid by the week."
They might be re-assured to hear something positive as well, if you can manage it : "... but she is still able to enjoy outings and her mind is as clear as ever."
In general though, I think the sort of "bulletin" envisaged by eastercedar is a good approach and should satisfy everyone.
Thank you Christopher. As you will have seen from my other replies, the "email" is going out particularly after this week when I've had several well meaning enquiries
I agree with Barnacle and heady just give a short answer as good as can be expected and won't get any better. I find it hard to when people say to me oh! Your Sister won't know any better if you don't manage up this week!!! Also when they say she is looking good when she can't speak or feed herself! Hang on in there and call the PSP help line for a chat I have done this many times to off load or ask questions or just cry and have a good chat they are wonderful and really help. Take care God bless.
A thought. .I know it is difficult to answer questions regarding your moms illness
I have the same issue with answering our friends questions. There is a website called caring bridge that you can join. On this website you can write a weekly update on how your mom is doing. This makes it easier for you and they can read the updates and leave their thoughts on the site for you and your family.
I would want them to know that it is pay back time! Time for them to give energy, rather than them expecting input. When I was caring for my mum, I found that friends and even family fell away. Perhaps you can encourage them to be in touch. They could easily educate themselves about PSP, that way they would know what to expect, and learn too how to improve her quality of life through brief visits or emails or letters sharing their news. Your mums world is shrinking and getting darker. Those people your mum took the trouble to love might now repay her by taking a few minutes here and there to share a bit of their own world with her in whatever way they can.
It's weird isn't it - one of Mum's god daughters has categorically told me she doesn't want to know what the symptoms are because she just can't bear it yet emails me to find out "how Mum is". I think next time I'll suggest she has a read on the PSP site and then she'll understand what we're dealing with!
I feel your pain. One of my mums god daughters told me its far too upsetting for her to visit my mum.
I would do the 'general' email. Tell them all that this is a terminal illness and there is no getting better, and that you feel drained by repeating it. Tell them that a better questions to ask would be is there anything I can get for mum, then, how are you doing?... and move on to normal day to day stuff.
Louise, I've had the same thing intact someone this week said they'd "wait to be advised by me as good time to go and see Mum" as they needed to get their head around the illness and they were "struggling" with it......grrrrrrrrr
Maybe you could suggest in this general email to those that feel it is important to tell you how much your mother meant that it would be kind for them to write this down and mail or email it to you so you could read it to your mother or father when a good time appears. Maybe down the road it might be comforting to you and them to have these reminiscences or thank yous. They might bring a smile in a down day, might trigger pleasant memories or conversation, and you could access them in your own time, as you might care to.
That's a lovely idea! I did something similar for Mum not long ago and sadly she just tells me "she can't understand why anyone would love her" but I could keep these messages and thought and add them to the good memory box I'm creating!
You are saying/doing the right things. Telling people she won't improve and PSP is a debilitating and downward disease is about all you can do. How about "She's doing the best she can at this stage of this disease. Would you like to visit her?". One visit and they'll get the message. Jimbo
One thing I did was appoint my cousin as the go to person. He handles a lot the emails since I really don't feel like I want to keep repeating the same stuff. I think people feel that they should say something positive like "Bob is really looking good." When all the does is make me feel misunderstood. What I tell people depends on the person. Some I tell them he has Alzheimer's Disease...or a disease like Alzheimers..that is progressive debilitating and dementing. Or it is like Alzheimer's and Parkinson's..it will get steadily worse until he dies. Anywhere from 7-10 years on an average. I think truth is really the best way to go. Also it educates people about what's out there. Some just downright disagree with the diagnosis...their denial...I don't argue.
Also I would tell someone that it is hard for you to talk about it and that if something different or significant happens you will send around an email. Also give suggestions about how they might help...if that is possible they could babysit? Or run errands for your Dad...etc.
Also giving them the website of the PSP association. Don't try to be perfect, don't try to be nice. Tell the truth.
Tell them to send your Mom a card maybe with a picture of them that you can put up on the wall.
I'm past trying to be perfect or nice - I guess because my profession is "Life Coaching" people expect me to just be able to cope and get on with it. I love it when they say to me, "you're doing so well, I wouldn't be able to cope with what you and your Dad are going through" and I think to myself - actually, we're not! We have to get on with it and we will but it's breaking our hearts and we want to stamp our feet and shout "it's not fair!"
I really hate when people tell me "how strong" I am..or that they couldn't do it. I just say..what are the options? You do what you have to do, strength has nothing to do with it. People really just don't know what to say.
I think I have pretty much withdrawn from people except a couple of close friends.
You seem like a loving intelligent woman. Your parents are lucky for your care and also your father seems like an interesting man. Keep writing,
Oh boy! How I hate it when people say, how well I am coping, how strong I am, how I am a superwoman. This from people I love most! What do you do? Nobody has a clue!!!
I don't want to cope, I hate being superwoman. I just want life to be how it was. S, sort of being in control, but me pulling the strings, but mostly, someone to share life with, someone who knew what I was thinking, feeling, going through.. Just someone being there!
I think I am a bit nastier than you guys. When people ask me about Bob is just roll my eyes and say "HORRIBLE!!!" and then give them a list of bad bad bad things that happen in a day...I see this as "educative" and also a release of bad feelings..(kind of kidding)...but I tend to want to let everyone know that "WE ARE NOT HAVING FUN!". and that I am really really angry about it all and want to travel like my friends and go places together and have someone to talk with and keep me company and worry with me and tell me to be calm....
maybe that is why I don't see many people. Out here, Costa Rica Xpat community , many others also have a sick spouse they are caring for so people can be understanding. I guess it is that time of life. But Still.....
I have had the same thing . you must think of yourself , you have a life . well John had and still is my life .
the tell me I am wonderful one person told me I was STUNNING !!! I don't thinks she meant beautiful lol . she has know me since she was very little .
we belong to a club and the people there were very supportive , they could see what a struggle it was for both upon us m Onuse to tell them thank you I can manage , But I promise I will ask if we need assistance .
I still go when I can and someone always asks how he is . I tell them , Well he woke up this morning , He is ok , But I could tell the truth .
I do also now an again tell them the truth . I think it's important to share the knowledge of what we have learned on this journey , after all it is going to happen to someone else one day and they might then remember my words .
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Can anyone offer me advice on how to do my bit when I live a long way away from my mum?
He asked the question 
Why so different with other people?
