A couple of weeks back I posted on here and deleted it as I was proof reading it over and over to make sure I didn't upset my Mum who posts on here and also I don't want to look like I'm feeling sorry for myself. So I'll try again after editing it almost daily.
My Dad suffers with PSP as some of you will already know. My mum and dad still live in Buxton, Derbyshire and I have lived approximately 30 miles away in Sheffield for the last 8 years, my Dad hasn't been well for about 3-4 years? I work full time, times are quite hard financially for me as they are for a lot of people my age (I'm 33) so I can't afford an awful lot of time off. Up until recently I was visiting and taking my Dad out on an almost weekly basis, which of course is nice for me and him to spend time together and also gives my mum some time off. I've not been able to go over for a few weeks and as I work in Sales, with Christmas approaching I can't see this getting any better. I also don't have my own transport.
I just wondered if anyone on here has been in or is in a similar situation and if you can offer me any advice? Sometimes I've thought about quitting work and going back to help them out but my Dad put so much effort into getting me on my own 2 feet that I know he'd be upset underneath it all if I did that.
Any advice would be much appreciated.
Thanks
Dan
Written by
DanRiley
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Daniel, your mum has just said it, what a lovely son you are, I am sure that they now you are there for them, but like I feel with my children, you must live your own lives, and just be there when you can, I am sure your mum and dad understand that. Your mum is a lovely person, and we are like best friends, we just want the best for our children, and for you all to be happy. I bet both your mum and dad are very proud of you. Yvonne xxxxxx. Daniel will show this to my children and get them to reply to you xxxxxx
It's hard to explain but I almost don't want to have a life separate from my mum and dad, before I left for Sheffield I was very involved (perhaps almost to the point of annoyance). Me and my Dad were inseparable in the local pubs. I just feel kind of guilty that when he's suffering I'm over here living a separate life. I hope that makes sense?
Dan I sure my children feel the same as you, but we have to take one day at a time, and just think when you do meet up, how you will feel, to be with your mum and dad, does not matter how old you are, your mum and dad are always there for you, so enjoy the time you have together, which makes it more precious. You children always worry about us, so I think we did a good job of bringing you all up, my children phone me so many times a day, I am sure that your mum and dad are ok, and look forward to your visits when you can get there. Dan look after yourself they now you are there for them. Yvonne xxxx
All other things aside, I think I understand what you mean in not wanting a life separate from your parents. When it's a good relationship, there can be a wonderful satisfaction in the closeness between adult kids and their parents. I was fortunate that way, myself. Thanks for reminding me of that.
Hi Dan, I live in South west Turkey and am sole carer for my partner who has had PSP for over five years. Since late April he goes to private day care two days a week, 10-5, giving me a bit of time off which is usually spent doing all kinds of things that are impossible to tackle when he is at home. My first husband is Turkish and the father of my only child, a daughter who is your age. She moved out here a month ago to help and also try her hand at self-employment after a couple of hectic years working and living in Manchester. She has already made a huge difference to our lives. Prior to her arrival I had been dithering over buying a wheelchair on the grounds that Chris would not get any exercise once we got a chair. She took one look at the difficulties in 'walking' him and, the day after her arrival, we went out and bought a chair. She heaves it in and out of car boot and pushes it (no mean feat as with Chris it weighs about 90kg in total). However, our circumstances are vastly different to yours. You are still close to your parents and talk to your Dad daily. In an emergency you could be with them quickly. I am worn out with caring so much of what my daughter does compensates for this especially when it comes to making decisions. Also her move fitted well with what she wanted to do next in her life. If you are building your life in Sheffield then I am sure your parents would want you to continue creating your own path whilst also being nearby and in contact. We all suffer from the 'could I do more' feelings but I have slowly come to terms with 'I am doing my best'. it seems to me that you are also doing your best, and as long as that continues you have to try to accept the situation.
get dad reffered to your local hospice they usually have a huge bank of volunteers rog has someone come for two hours a week to play cards they will take people out also.make a self refferal to social services, they will do an assessment and be helpful, what i have learnt with this illness you have to be very proactive and it is exhausting.
Hi Dan, one of our son's lives in Suffolk, we are in Kent. Work and family keep him from visiting often but every 6 weeks or so he comes for 24 hours. A couple of weeks ago he arrived by train at 12.45 one day and caught the 1pm train home the next day? He doesn't ring us daily, in fact not always weekly but with two restaurants to run and two small children I don't expect him to. If I ring him he is usually working or sorting out the boys while his wife is at one of the restaurants. When he does ring, however, the calls always last over an hour as he tells me what is happening in his life. We both love to see him but understand his situation. We know he loves us and would like to visit more often. He gives us both lots of hugs when he is here. In his business, as in sales, Christmas is a very busy time but he hopes to bring the family down for a day in November to exchange presents and have an early Christmas. For years we have had a family celebration in November, even before PSP.
Don't feel guilty and I wouldn't advise quitting your job and returning home. I know several 30/40 something men who are still at home and if and when your dad does leave you, you would find it very hard to leave then. From what you say, your dad wanted you to be independent and he must be proud to know you are.
You phone regularly and your parents know you love them so live your life to the full. After seeing what is happening to their father I tell our 3 sons to live their lives to the full. Life is too short so while doing what you can for your parents, don't put your life on hold.
When my mum developed PSP, my brothers couldn't cope. One of them didn't even stay in touch. There are lots of things that they could have done to help, without needing to follow us into the bathroom! For example, you can research, look for anything that might help your parents. Sources of support like grants for changes to bathrooms, extra help from charities that offer massage, or day care, perhaps badger social services for more, or better care package. Look into clos-o-mat paperless washer, dryer loo. Your mum will be fire-fighting a lot of the time. You might be able to stand back and see a bigger picture. Your dad may not be able to hold a conversation with you, but hearing your news will brighten his day. If you dwell on what you can't do, it will make you ill, and that will be a further worry for your parents. It is important to them that you remain strong and sorted. Your feelings of helplessness will be alleviated by supporting them in a realistic way. PSP is a terrible thing, and yet it can force you to become closer to your parents than you had thought possible, it will also bring out a strength in you that you might not have known you had...
Hi Dan. Thought i would chip in with my views. About 11 years ago we made the decision to move from kent to essex leaving both sides of the family behind and even now we don't regret doing it. My 2 kids who have both got young children have both said to me that they wish we lived closer because they would be able to help more. My answer is I'm glad we don't because they need to live thier life and concentrate on the kids.
Brians son has said something simular about being nearer and when i asked why there was a long list of things that he and his wife would be able to do for us. For example taking us shopping and helping with the garden all sorts of odd jobs. My explanation to him was we would end up as a burden on you. I said your dad is well taken care of and it would not do him any good feeling guilty because they was putting there life on hold and as brian said they need to look after thier family unit.
I think in a long winded way what I'm trying to say is as much as you feel guilty and upset for not being able to be there as much as you would like. Your mum and dad would feel guilty about you putting your life on hold for them. Keep the contact going and between you all you will find the right balance. Janexx
Dan, I agree with all of the above, especially NannaB. When my wife, Roisin, was in the last three years of her life our son, Rupert, who lives and works in East Africa, phoned two or three times a week. This made all the difference to her life; even when no longer able to speak she would smile and laugh and so obviously enjoyed just hearing our darling boy. His visits home, of necessity only about four times a year, were a great bonus but it was the regular contact on the phone, hearing his voice, his news and his opinions about things in the world, that made her day. We would put the phone on its loudspeaker so that it became a three way conversation; I could hear what Rupert said and go over some of it again for my wife afterwards..
So, don't worry. They know you are present in their lives and there for them if needed.
I don't know if this will help you or not but I have been living 2 continents away for the past 2 years - I am about the same age and you but I just quit my job and returned here and am looking for work here
My physical presence and emotional support makes a huge difference to my dad's life, I can tell that - my mom did her best but it was emotionally and physically exhausting even though we have a helper
It's up to you to decide, people tell me this and I have no idea but they say that later on you don't want to live with the regret of not having tried your best...
Your situation is your own - I wish you all the best, yes it's tough..
That's exactly what concerns me, I may live to regret not being there more. Particularly as I know for a fact if the shoe was on the other foot my Dad would be doing absolutely everything for me and there's nothing he wouldn't do for me.
Still, on the flip side as I said, I also know he'd be really upset if I dropped everything to move back there. I have a half decent job and a long term girlfriend based in Sheffield. It's difficult and it's on my mind 24/7.
Yes, of course life would be a bit easier if you gave up your job and went home to help. But your parents did not have you, just to clear up after them. We have children for the continuation of our species. The fact that we enjoy having our children around, is beside the point.
I totally agree with Formercarer, there is LOADS you CAN do, without giving up you r job and moving home! I struggle big time, with the little things that go wrong around the house, paper work, fighting social services. All this, you could help with. I leave loads of paper work, because I just can't read and understand it anymore. Brain won't work! Just to have someone go through it, leaving little notes of what to do, would be incredibly helpful.
My sister and daughter do some of this for me. My sister keep threatening to move in, but who would I turn to, if she is here all the time, getting just as tired as me? I don't think you realise how much good, a fresh face popping in, even for 5 minutes, helps us carers! My daughter will do this, it's sets me up for another couple of days.
Of course Pat is struggling! But living there full time, won't stop that. (I hope I have this part right, Pat!) your Mum does need you, but she needs you strong, able to step in, when needed. If you become part of the 24/7 team, you won't be! Get more professional help into the house. You provide the back up for your Mum and become the social secretary, making sure your Dad gets out, your Mum has the rest she needs. In other words the normal part of life. This you can do, obviously do do. Carry on!
Thank you for that Heady, you are exactly right with what you said, we want Daniel to have the best life possible as all parents do. He's a great support to both of us by simply caring as much as he does and we wouldn't want anything more than the love he so obviously shows us!
Pat and heady i have just read out your comments to Brian and he said we bring our kids up to go out in the world to make a new life and ultimately a family of there own and that must be thier priority in life. He loves the family contact ie phone calls bits and pieces on facebook and texts also the odd visit.
But he said he would hate to feel a burden on them. And because I'm 20 years younger i knew i would probably end up as his carer. Janexx
Hi, Dan! You sound like a wonderful son. My guy's son is very similarly situated although much farther from us - the other side of the continent, in fact. He has also offered to come, but I had to assure him that his father would hate to be the cause of his losing his financial stability. He'd really hate it, and has been quite adamant about it. (Mind you, I'm sometimes not so sure on my own behalf that I'd hate it so much, but that's NOT my call!) If down the road he could come without harming his prospects, that would be a different matter. For now, it would actually make my guy unhappy to have his son come, knowing it might harm his future. So, my advice to you is: don't wipe out your father's sacrifices for you, and don't feel guilty! Hang in there, and please do keep in touch. Love and Peace, Easterncedar
I agree with above comments. We have three children, all leading very busy lives. What we hope for our children is that they will be happy and independent. As it happens our youngest son has moved back home because his marriage is breaking up. We are supporting him but encouraging him to move on as soon as he can. It seems to me more important that he rebuilds his life.
Contact and love we need. Practical help too.
Try not to waste energy worrying. Having made the decision, move on.
Life is tough, isn't it ? You are a good loving son and will make your parents proud.
I was in a Hong Kong clinic and was diagnosed with PSP the day my mum, back in England, had a stroke and cancer was also found as part of her examination. Obviously, she died within the year but never knew my condition.
The state and the charities provide excellent care for people like your dad. True, I did have a great brother who went to see mum every weekend possible. However, getting the local hospice and her GP properly involved (the latter took a lot of nagging over the phone) meant: (1) she got good care; (2) she heard from me over the phone every day; (3) she never had to know her son was dying too. Dan, I don't know whether that makes any sense to you but all I mean to say is that life goes on and that is the way I am sure your parents would wish it.
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