hi all, very very sad to be here. Myself and husband got married 1 month ago, then this week my world came crashing down, my Dad has a diagnosis of PSP looming, just needing confirmation. Can't believe how we've gone from such a high to such a low - I was writing my wedding speech telling everyone what a wonderful Dad i have - now I'm thinking about what I'll say at his funeral.
This question seems so selfish and minor but I just don't know what to do......
We had planned to take a honeymoon later in the year - and had a 6 week adventure planned (we'd never been on a big holiday before) prob around Oct. I straight away that is no longer a runner - mentally the guilt would kill me and I'd worry being away that long. Dad is 79 - he's prob had symptoms starting about 2 years ago,becoming more noticeable in the last 8months - intermittent falls, difficulty getting his words out, altered walking and a constant fuzziness. He's still walking, doing small house DIY and eating ok. Mum is 77 and I'm the only child.
My husband over the last week has been my rock,he is so supportive, already looking up houses for us to move closer to my parent while I'm going through the grieving process. I am finding it hard already to workout a balance - when I'm constantly talking/crying about Dad I feel guilty I'm affecting us as a couple, but when I laugh or chat about other stuff I feel guilty or disrespectful for Dad. I think my husband is thinking we could go for a month instead - I just don't know, it's hard even to motivate myself to go out for a bite to eat and switch off for an hour.
My Mum will say she's fine, to go live my life etc, but I want to be here for them. I want to spend as much time with them and create happy memories as I can before Dad deteriorates significantly, but I also know this could be our last chance to have a holiday as a couple for a while. what do people think, what's realistic? It's all so hard as I've no idea how he will be in another 4 months.
Also is it normal when you first come on here that reading the posts makes you so very very sad? I know it's early days but does the constant knot in your stomach go away and are you able to find happiness with other friends/partners away from PSP?
I love my parents so much, and want to help them in every way I can as they were always there for me, but I also want to show my husband how much I love him and also start creating a happy life for us too. Will this be a constant battle?
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catherine_h
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I'm so sorry your dad is living with this devastating illness. My 3 sons supported me for 6 years before my darling husband finally left us. The first few months were a time of adjustment when they would ask me if they should go away or not, our middle son is in a band and travelled abroad a lot. My husband had been told he would survive 5-7 years after diagnosis and I told the boys they should not put their life on hold. Instead they should live their life to the full and then come and tell their dad everything they have been doing. They visited often and were with me a lot during the last few days. You still have time to make happy memories. If your parents know you were planning a honeymoon it won't make them feel very good, knowing you have postponed it because of them. If I was your mum I would tell you to go, have a great time and take loads of photos to show us. I appreciated the way our boys spoke to their dad as they would have done before the diagnosis. They wouldn't have been any help to me if they looked miserable when visiting. Two of our grandsons were born after the diagnosis and I have lovely photos of my husband holding them and smiling down at the gorgeous babies. You know how this will end, but there can be so many good things before it does. There will be time when you get back from your honeymoon to help and support your parents so I hope you go on the wonderful trip you want.
Go and have your honeymoon. Don't let psp run your life. Of course you are upset, but it's truly not the worst thing that can happen. Your father is 79. The median survival post diagnosis is 7 years. He could easily make a normal life expectancy. The prospect of losing a parent is scary. It's a major life event, but it is in the natural order of things, after all.
It's great that your husband and you are willing and able to be close and be there to help down the road, when your parents will need you. That's a wonderful gift. There will be many ways you can support them. Meanwhile, there's no reason at all to feel guilty about being happy. Wouldn't your parents want you to be? If you can't get out from under this fear, I hope you will find a counselor to help you work through it. You can make a happy life with your husband, make good memories with your father, and be strong for your parents too. These are not incompatible goals.
Relax. Be happy. Be in love and plan your honeymoon. I wish you all the best. Ec
Yes Catherine go on your honeymoon, as Bev said tell him all about it when you come home, with lovely memories, to share with your mum and dad, this will make him happy, seeing you both happy. Yvonne cxxxx
Poor Catherine, Certainly go. You are still in shock. It is difficult news to take in and one must be prepared but there are usually times when things are adjusted to . We call it "the new normal ". I'm sure your parents will cope as we all do. We were the same age as your parents when diagnosed. We had planned a big holiday to Costa Rica and birthday party to celebrate Chris' 80th. We went ahead with both. It brought a poignancy but didn't stop the pleasure.
We have three grown up children.They get on with their life and will be there when needed. But mainly I need them to keep us in touch with the real world, to talk to and cuddle their dad. Life goes on.
I agree with the posts already written, its hard not to worry , I have three daughters , each one has a life to live , we are always happy to see them , and let them do the things they enjoy. Knowing they are there when we need them is a comfort, at the moment thats enough... I'm sure your mum will tell you the same thing, don't feel guilty and don't neglect your husband , , you'll need his love and support as psp progrees....Brenda.
Following on from my reply to NannaB I have put my life on hold since my Dad became ill, do I regret that? No! However I'm not married and no children so slightly different! My parents are my world and I love them more than I can explain! Would I suggest you do what I've done? Not necessarily, no!! Do, what feels right for you! X
So sorry about your father. My husband has CBD and we have two grow girls thay need to carry on with their life. But thay do still support me. You need to go be with your husband. You have time to still help your mom. You don't need to change your whole life I don't want my girls to let this hurt there marriage and I'm sure your mom would not like you too either. Love Jenny God bless your family.
In m opinion since your dad just got the diagnosis go on your honeymoon/trip. He will need your help in the future for sure and you'll be glad you took the time to do your trip.
It is a little disheartening to read some of the posts but at the same time you get some idea of where your dad COULD be heading, everyone will progress slightly different. Use the info you get here to make your dad as comfortable and safe as you can.
As for a constant battle, no. There will be trying days and decent days but this is a journey that will end, as all do eventually.
Please don't sit and mope go on your honeymoon and enjoy the experience.
The best thing for your dad is to act normal tell him all the news you have. Be there for him (I will sound harsh... but he will appreciate a happy daughter not a sad one). And you need to keep going and take each day as it comes or you will make yourself I'll. Worrying and being upset will not alter the situation only make you a prime candidate for antidepressants.
By the time Brian (partner at that time) got his diagnosis he was wheelchair bound. But it never stopped us doing things.... we even got married... 18 months before he passed away...both sides of the family still did all the stuff they wanted ie holidays and more. Nobody will think badly of you for living your life and you can do that and still be there for your dad. And you will be all the more able to cope when your help is needed (how ever many years down the line). Shout rant and rave about the situation but please live life to the full now whilst you can.
Enjoy your honeymoon and take lots of photos to show your dad when you get back.. hope this helps Jane xx
Hi Catherine, my husband has PSP at a much more advanced stage than your dad. My two sons live 200 miles away, one with a wife and family and one with a girlfriend and dog. We don't see them that often, maybe every three months but they keep in touch and tell us what they are up to. I wouldn't expect them to not carry on with their lives as normal and we love to hear their stories when they ring or Skype. I would advise that you go off on your honeymoon and enjoy every minute of it, I'm sure it's what your parents would want that too. I know the worry and guilt are difficult emotions to deal with and counselling can help you to come to terms with your feelings and help to understand yourself, the hospice provided great counselling for me and helped tremendously.
I hope that you come to a decision that allows you to go off and enjoy your honeymoon, your mum and dad will cope fine whilst you are away.
First be reassured you are going through every emotion as we all have. Don't ever feel guilty - your Dad knows how much you love and care for him and the thinking about the funeral is a natural response. It's just your way of coping.
I'm the one with the condition - I have Cortical Basal Degeneration - very similar to PSP.
As you say your husband has been your rock - so has mine. The thing is from my perspective, I wouldn't want my husband to change any plans. He had 2 golf breaks booked - and god we went on for weeks - first he was going then he wasn't - all because he was worrying about me. But he needed to go and I felt to get away from the constant worry about me and my daily conversations about my symptoms.
You still need to try and keep normality as much as possible. You need that trip for both of you and your Mum and Dad won't want you to miss this trip you've been looking forward to. Just think how you can share the trip with them - Face time or Skype to stay in touch
Don't beat yourself up - you sound like an amazing daughter and wife x
Life must go on and everyone's journey is different. Think of the postcards you can send the photos, memories to share with your parents on your return from honeymoon, they will be able to get pleasure from your travels too.
Hi Catherine - congratulations on your wedding! I am so sorry to hear about your dad. I am a relative newbie to this site in terms of posting, but I am also the daughter of a PSP sufferer, 4 years this year. In the early stages we took mum and dad on holiday with us (with their first grandchild 😊) as they were still waiting to get a firm diagnosis and Dad was still mobile and had a high degree of independence. We created some fab memories that I will never forget those times.
There is no question that you love your mum and dad and as an only child I can imagine your feel a great sense of responsibility in looking after them. However, you are newly married and this is an exciting time for you, forging a new life with your husband.
Are you able to talk with your mum and dad about this? PSP progresses differently for everyone, and it's taken 3.5-4 years for my dad to get to the point of being bed bound and dependent on everyone around him to do everything, even interpret his needs (he can't communicate any longer). I pop in to him and mum twice a day during the week and sometimes at the weekend (balancing an 8 year old, full time job, husband and house!) but call everyday to make sure they're ok and mum has everything she needs.
Given your dad is two years in, it's still early days - which is fab and gives you time to create some more memories with your mum and dad - but also means you have time for your honeymoon. There are loads of ways to stay in contact now, Skype, FaceTime etc. You've said he's still mobile and doing DIY too - that's great, I think it's important to try and stay active as long as possible.
I think it's normal to cry a lot, I still do, even more in fact, it really doesn't take much to set me off....! Try not to bottle it up, you will need the release, and if you have someone you can talk to, a friend or counsellor, then do so.
At the end of the day it's your decision, you have to do what is right for you, but as things deteriorate your mum and dad will need you more. In my view, take this time now, enjoy yourself, stay in touch with your mum and dad, they will take joy from knowing you are having an amazing time. When you come back if your dad is still active, maybe even think about a nice long weekend with both your parents and your husband.
My dear, I agree with everything everyone has sais, YOU have undoubtedly noticed that no one has told you not to go on honeymoon.....
It is so important for you to lead your own life, and share your happy memories later with your parents... I know that I do, I'm a psp-er myself with a doting husband, and three grownup sons, all living abroad. So we don't see them every day ,but thanks to modern communications we can if we chose to. I would hate to be the one who would be hampering them with their future plans, just because I have PSP . They should go on living their own lives, like YOU should, and then tell me all about afterwards. It would only make me feel worse if they would stop doing something just cause of me.
I know this won't be easy, but believe me, your parents would feel awful if they knew about your thoughts of not going.
Wishing you lots of luck and "bon courage " in your decisions, and ,.....
Hi Catherine, I am also quite new to this site but everyone gives such good advice do read and listen to them all. My Mum has now been diagnosed a couple of years and initially I felt just like you, with the knowledge of the 7ish years left, I felt like I should stop doing stuff just in case. However after the initial shock, you will get used to it (sort of) and then you know you have to keep going with your own life too. All aspects of your own life, work and play. That 7 years sounds harsh initially. But it is measured in years not weeks or months so you do have time to live your own life and build lovely memories with your parents and still be there when needed.
Enjoy your honeymoon, make the most of the time, I had a week camping in the rain in Norfolk!
Go on your honeymoon seriously; enjoy life when you can; my wife has PSP and we're not really doing all that good- time for the damned hospital bed. One does the best they can and reality is life goes on. Acceptance is the hard part and there's no cure or around the bend. Just be supportive of your Mom and whatever assistance you can give-do so with an open heart. Ben
So sorry to read about your distress. It is understandable - I was diagnosed with PSP in October 2015 and went into a deep, deep depression for at least 3 months. i felt so ashamed (yes, ashamed) that I forbade my immediate family to tell anyone else. Eventually, I dragged myself up and began to face up and to try to live again which, with the help of my husband, I have managed to do; my main problems are a) with mobility and b) inability to write legibly..
The point of telling you this is to say that,, although both our adult children were told about the diagnosis, I would have been horrified if either of them had let the news affect their lives to any extent: it would have increased my sense of shame and, yes, guilt. . One, daughter, lives 2 hours drive away, the other, son, lives and works in Plymouth. We are very, very close to our daughter's 5 children who often come to stay - not all at once !!!. Each of them (age range 18 down to 7) has just accepted that Nana can't walk very well and have strategies to "get her going.''. They seem to regard it as a natural part of having ageing grandparents.
So, a rather long winded why of saying that you must put your marriage, your new husband and your own strength first. Your parents must be aware of your love and concern for them but surely they would not want you to let it affect your own life adversely. Go on your Honeymoon and enjoy it, do but also enjoy your relationship with Mum and Dad, let it enhance their lives not encumber it with knowledge of your distress.
Do keep in touch with this wonderful forum,
Ann
Wow... so sad reading your post but I do understand where u are at. My dad has had PSP for a year or two now but previously was diagnosed with basal ganglia disorder. It's so hard to be HAPPY and enjoy where u are at when your parents are going thru such hard times. One thing I know is my dad would want me to LIVE AND ENJOY LIFE and for u that would be my advice. This condition is so frustrating and unpredictable but don't put your life on hold either.
thanks for all the replies - this site really is great to vent your thoughts. I've read over and over your posts over the last couple of months - and when I was going through a period of acceptance and feeling more level headed we went ahead and booked honeymoon, we're due to fly out next week. I will be away for a month - China (2week adventure trip), hong kong and then Java for beaches and temples. Had none of this PSP crap started I would be bouncing up and down and shopping galore to get set, but if I'm honest it has been hard to get motivated.
I've been home to parents every weekend, and a night each week to help out with tasks. Accompanied them to medical appts, and got Dad referred to PT and SLT (starts PT next week). I've given Mum contact details of support groups, and advised her to discuss finances etc with solicitor given Dads changing status. She also has public health nurse number if she feels she needs help. We've started Dad on some home balance/strength exercises and I've ordered him a new recumbent bicycle to keep the legs going over the winter, as getting out for walks gets more difficult (he hates getting wet, always did!). My husband is a carpenter so put together a new table for Dad to work away on his train set, and I've helped start it off with layouts and tracks etc. The freezer is loaded with food and relatives are on board to help with lifts etc as Mum doesn't drive. Not trying to prove "being a good daughter" but sometimes helps to see logically that your doing as much as you can. I also brought them a 5day break to the west of Ireland which had some nice memories but also tough moments. I also got to capture some nice photos, videos and voice recordings - thanks to posts on this forum.
I am anxious about going but I've realised and through a bit of counselling that I now need some time to be with my husband to nourish our relationship too. Mum is adamant I go, and to see me and hubby happy will make her happy, that she doesn't need to be worrying about me on top of everything else. I think reality has hit her over last few days as we have had some hospital appts, and she has become teary which makes the going all the harder. But in my heart, and in my head I know they are very much aware of how much I love them, and I've done all I can within my limits and the braver decision is probably to go and try as hard as I can to enjoy the highs of life, aswell as experiencing the lows. Dad is of the opinion sure why wouldn't she go, and I know when I show him photos of me in far flung places like the great wall of China, or Buddhist temples in Java, he will be proud of how his love and support over the years has given me these opportunities.
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