Morning All. Last month it was a trip to the Antartica, today I hear Dad has applied for a job. He's sent me the advert and apparently has been offered an interview next Tuesday. Having read the advert it's a really senior job 3 days a week that I know my old Dad could have done with his eyes closed. Taking his CV alone he's perfectly qualified for the job. These scenarios are just tearing my heart apart. Dad also sent me his covering letter which the last sentence made reference to PSP by saying "I have PSP which is a degenerative disease that means I fall backwards occasionally". And the rest. This morning when mum called me all upset to tell me about it, when she put Dad on the phone he was either whispering or coughing throughout the conversation. Or laughing to try to make light of it all. This job would involve liaising with the public at a senior level. To make it even worse it's actually within the NHS. Do I just let Dad go on Tues (mum has said she'll go with him as the interview is in London and she can't trust him in London on his own) and see where it goes? I know inside my hugely intelligent father is screaming to be able to still express himself at this type of level, but I honestly don't think he could cope at all with this. He has to nap every afternoon, he eyes are constantly closing, the choking is getting worse and the tripping is happening regularly. Never mind the start of incontinence.
Selfishly I am so upset. Last night I said to my husband that I hope to actually spend some quality family time together this weekend. I work full time and have 2 children at primary school. This week I arranged 2 drs appointment for Dad, did the paperwork for his and Mum's tax returns and starting planning with my sister a celebration for mum's 70th birthday. My poor kids aren't even getting a look in. Do I sound completely heartless if I say out loud I 'm scared my kids childhoods will have passed me by and I will have missed it! Then I feel so guilty for feeling this way.
I am really rambling now, I'm so sorry, just overwhelmed by the maze of emotions one simple scenario can create. Sorry too if this sounds like a trivial problem to those of you further along the PSP journey. Thank you for reading, Nicky x
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Don't feel guilty, Nicky, and your father's dilemma is certainly not trivial; neither is your anxiety about your family life. You sound anything but heartless. Regarding your father's job interview, my feeling is that he has to go ahead with it, accompanied to London by your mother of course. He may be heading for an unwelcome conversation with someone, even if tactfully handled, or - you never know - he may rise to the occasion and get through to the next stage. Let's hope so because at some point presumably his potential employing department of the NHS will require him to go through a Medical. That may be the crunch but he will have given it his best shot and not been frustrated by his family's (understandable) anxiety on his behalf.
My best wishes to you and for him!
Christopher
Don't feel guilty, Nicky, and your father's dilemma is certainly not trivial; neither is your anxiety about your family life. You sound anything but heartless. Regarding your father's job interview, my feeling is that he has to go ahead with it, accompanied to London by your mother of course. He may be heading for an unwelcome conversation with someone, even if tactfully handled, or - you never know - he may rise to the occasion and get through to the next stage. Let's hope so because at some point presumably his potential employing department of the NHS will require him to go through a Medical. That may be the crunch but he will have given it his best shot and not been frustrated by his family's (understandable) anxiety on his behalf.
Thank-you Christopher for your kind reply, sorry it has taken so long for me to respond. Having accepted that you are right that it really was probably inevitable that dad should go to the interview, he decided late Monday afternoon to cancel. Relief all round I think, but I'm still so taken aback how upset it made me feel.
I really hope you are coping after your loss of Roisin, your post regarding the visit from a robin touched me so much. I know it is very early days, but please remember you are not alone. Thinking of you, love Nicky
Hi Nicky, you will no doubt have differing views but I think you should let your dad go to the interview. I had similar situations with my dad and my attempt to protect him resulted in him telling his carers I was ruining whatever life he had left. He didn't have PSP but many other medical conditions. When he was well into his 90s, he worked out how he could get from Kent to the village he was born in, in Northamptonshire. He was going by train to Wellingborough and then to the village by road. He said he scooter would go 30 miles on a full charge so he would spend the night in a hotel and then drive the 20 odd miles to his destination. Apart from saying, "Are you sure you are up to it?", I let him get on with it. He never went so all my worrying was for nothing. I had to complete numerous forms for him and Colin and read the professional's guidance before doing so. There is a statement on some, which implies ( in professional speak) if the client is of sound mind, even if what they say appears to you to be ridiculous, their wishes must be abided by.
Your own family should be your priority now, without abandoning your mum and dad. Your children will grow up so quickly, you should be enjoying them now. We have a self employed son with 2 primary aged children. He comes every Tuesday to see his dad and do household repairs and generally help. I won't let him come during the school holidays unless he brings the boys as I think it is important for the family to do things together when they can.
Don't burn yourself out. I nearly did as I had a full time job but took responsibility for my mum with Altzheimers, my dad and now my husband with PSP who was diagnosed before dad died, 22 years of caring. Now I make sure I have time to myself by having sitters twice a week. Does your mum get time off?
Your dad may decide he doesn't want to go to the interview anyway so try not to worry, it may never happen. If it does, it would be his decision, however fool hardy.
I hope you have a lovely weekend with your family. You will never get this time again so make the most of it.
Hi Nanna B, thank-you so much for your as ever helpful reply. I always get a better perspective when I read your posts! And guess what you are right, Dad decided not to go, so what did my unnecessary worrying achieve, nothing! I had a lovely weekend in the end, took the kids to see my cousin's son in his school play, seeing my kids singing along with big smiles on their face really cheered me up no end.
I have been meaning also to thank you for a previous response you gave to one of my previous posts. You mentioned your recollection of feeling fearful and overwhelmed at the earlier stages of PSP and how the turning point came when your local hospice became involved. On the back of that I emailed my parents local hospice at 10pm one evening with a brief summary of my parents position. At work next morning at 8am they had called me back. The kindness with which they talked to me caused me to sob but actually it felt a huge weight off my shoulders to finally talk to some organisation who cared - a sincere thank- you. Next plan is to actually visit them with the longer term hope I can get my mum and dad through the door too, one step at a time I know!!!
I loved your post about your ikea table, I'm very glad for you that you have such lovely friends. I hope you and Colin have had a peaceful day, love Nicky x
Hi Nicky, I'm so pleased things worked out better than you thought they would and hope your dad remembers he can't do everything he used to. Nothing cheers you more than seeing your children enjoying themselves does it? With Christmas speeding towards us, there are sure to be many more moments like that.
Colin didn't want to go to the Hospice day centre originally as the only contact we had with hospices before was due to friends and family members who had cancer. Our local hospice continues to be a great help to us.
I hope your day is stress free although with a full time job, two small children and a dad with PSP perhaps I should say as stress free as possible.
Perhaps if he is told by an out sider that he really isn't suitable for the job market he might listen. The trouble is it is a fine line to tread if his dreams are shattered he could fall into apathy where he doesn't do anything because he can't be bothered or he feels he can't achieve an outcome good or bad.
it does sound like he is trying to push the boundaries but don't forget the goalposts keep moving and he is having trouble keeping them in sight. My other half did have some strange ideas about six months ago couldn't stand without assistance but he was going out to cut the grass he was going to decorate the hallway. So after a few oops I can't do that anymore scenorios he has accepted his limitations but it don't stop him dreaming.
if he does go for the interview perhaps the trip to London will make him realise that the job and the holiday are just dreams. Jxx
Hi jane thank you so much for your response. You're right, it would be so helpful if Dad had friends who could gently tell him it's not such a good idea, but sadly most of Dad's friends are skating completely around the whole PSP topic because both mum and dad are! Having said all that my worries were unfounded as Dad ended up cancelling on Monday afternoon, so perhaps you're right, he realised his limitations off his own steam. I read your post about Colchester hospital with interest as mum and dad are in Wivenhoe, so good to hear they actually know what PSP is for a start!
Hope you and Brian have had a calm day? I often wonder if I should just advise Dad to come off the Sinemet, do you still believe coming off this medication has been right overall for Brian?
Here's hoping for a good rest of week for you, love Nicky x
Sorry, I have no advise! At the end of the day, it Is HIS life, to do has he feels fit. Yes, I agree, going will be bad, but what can you do? Perhaps, if your Mum refused to take him, or do anything at all towards it, he may realise how unrealistic this job is.
The one thing I do know is, you can't live his life for him! You have your own to live, your children to bring up. This is far more important! That may seem cruel and uncaring, but remember we are put on this planet for the sole purpose of reproducing and getting our children to adulthood. Your Mum and Dad have done their bit, now it's your turn.
Of course you can help your Mother and should, BUT not at the expensive of your own family.
My husband has PSP, my mother has got alzheimers and could do with me helping a lot more than I do. But I can't, of course I feel guilty, there are only so many hours in a day and they have to be devoted to S.
So please stop feeling as if you are heartless and uncaring. To me, you sound like you are caring too much and need to give yourself break. Spend some quality time with you husband and children. Get some normality back into your life, then you may have some strength to help pick up the pieces, if or when your Dads interview goes pear shaped!
Heady, many thanks for your kind words. Why does it take people you don't even know directly (but have come to care about very much) to actually get through to you? You are right, I do need to get the balance back towards my immediate family, they need to be my priority.
I tried to remedy that a bit over the weekend and spent lots of time relaxing with the kids and giving and getting lots of cuddles, just what we all needed!
You sound so strong Heady, but I'm sure your days have their challenges. I hope S has been having a better week, and that you in turn have been able to put yourself first occasionally? Take good care of yourself, love Nicky x
do not feel guilty at all - you have done so much 4 your father but at some point he will realise that it is all a dream - i used ot have these dreams way b4 PSP was dxd but do not nay more and try to see life realistically - it may be boring but it si LIFE
Hi Jill thanks so much for your words of encouragement, you truly are an inspiration in my eyes. I am working on putting my family first a bit more, we had a lovely weekend just taking it easy which was good all round.
Dad cancelled the interview late Monday afternoon, so all that stressing for nothing. I need to learn to not let things get to me quite so significantly.
I really hope you are having a good week with no falls or any other untoward events! Take good care of yourself love Nicky x
We all seem to struggle with guilt. There just isn't a "right way ". We can only do our best and I explain to my husband that sometimes I stop him doing things because of my anxiety. He would attempt to go on the roof etc, It must be so hard to not be the person you were ! He still wants to be what he was and I understand that but he isn't. I say it isn't me stopping him . Its P.S.P. He doesn't always accept that.
He is lucky to have you. I agree with those who say you must not lose precious time with your young children
Jean, many thanks for your response. It is so hard isn't it when they quite rightly still want to be the same person as they always were. This PSP really is the most challenging thing I think I've ever faced, but I do hope I will learn more compassion along the way, just wish guilt wouldn't get in the way all the time! I hope you and your husband have had a good week overall. I think my New Years resolution is to get my priorities right and put my family first while still loving and caring for my parents...we shall see! X
Thank you. We have had good times. It was Chris' birthday and so lots of love and support. Please try to kick guilt out of your life. Its wasted emotion. You are only human - and clearly a loving and caring one but we have our limits and they are sorely tested by P.S.P. !!
Chris is taking sinamet and it seems to help him. We also found the local hospice a godsend.
As grandparents I know we don't want the children to suffer because of our needs. But I also see benefits to our little 8 year old of helping grandad. He has compassion, and its lovely seeing him helping grandad with his shoes or when he falls - whilst being young enough to freely express his resentment at the losses of grandad on the football field. We can learn from children. love from Jean
Thank you Joandbear, what kind words, I really do appreciate them. You never quite feel like you're doing enough but it's nice to have people on here to make you feel supported. I'd be truly alone without this site, what a godsend. All my love to you Nicky x
It is very difficult. I also have two kids (twin girls but that's for another post...lol). My hubby, the girls and i moved in with my mom last month to see if I can consolidate my journeys btween home, work, my mom's home and checking in with dad at hospice (he was eventually discharged and now is in a nursing home). I am constantly anxious and many times do feel selfish in thinking about things I could be doing for my me and my kids. I feel selfish thinking that somehow I have been cheated from my family, from my dad. I get very angry that this is the way we have to spend his remaining time on earth. That he is trapped in his own body. I feel your pain. It is frustrating.
I am not sure what would be the best way to go about this but in my experience my dad had and at times still has a hard time facing the reality. That his brain in playing him into thinking he can still do things while telling his body otherwise. It was also difficult for my mom to come to terms with what was ahead. I too had my setbacks. Eventually reality check conversation had to take place and these conversation happened many times and with various professionals involved and sometimes just us.
Perhaps just allowing him to interview is all he needs to feel better about himself. He may not get the job and he may know this. This might be his way of feeling like he has some power and control over himself for now as this will not be an option as the illness progresses.
Oh Jess, I really appreciate you taking the time to respond, especially knowing how time strapped you are, thank-you. I wish you weren't going through the same emotions as me, but I feel so much comfort knowing there are other people out there who truly "get it". It's so difficult to explain to very caring friends who are just at a very different stage in their lives, how do you really express the weight of a constant grey cloud over your head? I think we must take comfort in knowing we are truly trying our best, we can do no more. Please do try to take care, all my love Nicky x
Every emotion we will feel as awkward or as terrifying will be as normal as it can be. We will not have all the answers but I am glad we can vent, share, cry and even laugh through this forum. It's hard for others to understand the uniqueness of our situations, the range of motions and emotions but don't be afraid to step back while moving forward. Many times I've had to plan conversations with my parents because even as advance my dad is denial lingers and if the wrong thing is said it is off with my head...lol. check out when you need to take care of yourself (and don't feel bad) but don't give up. it is a journey that has left me redefining myself and others (for good or bad) over and over again. Many hugs!
I think that denial is a healthy defense and needs protection not confrontation. Support him if possible with modifications. Like, "why don't you and mom check it out and see if they are the kind of people you want to work with." He is checking out the situation, not applying for the job, therefore he can decide to not do it and not they are rejecting him or he is too ill to do it. Also there is the put it off strategy. " How about waiting until next month to apply, after you see a bit more what the PSP is all about." sometimes that helps.
Save face. These are proud men and need the illusion of possibility and strength. Soon enough the reality will be made present to them. Support as long as possible. For example..do job research rather than apply, do vacation research, rather than plan to go. Anything that delays. Going head on against denial will not help and just make you the bad guy.
It is terrible to watch this process; it is heartbreaking. But I do not believe they experience it this way. You are the one who knows the truth and for you to watch this struggle is painful. You are not in denial and must deal with the truth..let him enjoy his denial..it will not last long and it also is part of the illness.
Another thought..what makes this hard, and made it so hard for me...was the separation between my husband and me. We had always shared the same reality, but with my knowing something he refused to believe made us separate in a way I never experienced before in our marriage. It means you are alone in this reality while he is in denial.
My husband has just been diagnosed with psp and hasn't accepted the verdict. Do you think it best to remain that way or am I to be the monster to tell him the reality of the condition and what is to come!
Hi Katie, Sorry, but you are always going to be the monster in this awful world we find ourselves in! Be damned if you do, damned if you don't. Just do and say, what ever YOU feel happiest with, you have to live and be accepted by the person you see every day in the mirror! Please don't forget that!!!!
it has been v uplifting for me reading all your posts -i do not think i am in denial of this PSP but i am in denial that i cannot do much any more for myself my partner or the cat!
it is difficult to accept that, and is v frustrating for the other half in our lives
i do not have children(and therefore no grandchildren) and for the 1st time in my life i am glad as it is so painful watching a parent going downhill with this PSP or anything like it ....
my dad died.aged 92 in september after a short illness ( born with true YORKSHIRE grit) and is now at peace i hope form the life he ha sled since my mother's death in1997.
sorry not to have any good advice for you at all other than what the others all say on th e site
it has been v uplifting for me reading all your posts -i do not think i am in denial of this PSP but i am in denial that i cannot do much any more for myself my partner or the cat!
it is difficult to accept that, and is v frustrating for the other half in our lives
i do not have children(and therefore no grandchildren) and for the 1st time in my life i am glad as it is so painful watching a parent going downhill with this PSP or anything like it ....
my dad died.aged 92 in september after a short illness ( born with true YORKSHIRE grit) and is now at peace i hope form the life he ha sled since my mother's death in1997.
sorry not to have any good advice for you at all other than what the others all say on th e site
it has been v uplifting for me reading all your posts -i do not think i am in denial of this PSP but i am in denial that i cannot do much any more for myself my partner or the cat!
it is difficult to accept that, and is v frustrating for the other half in our lives
i do not have children(and therefore no grandchildren) and for the 1st time in my life i am glad as it is so painful watching a parent going downhill with this PSP or anything like it ....
my dad died.aged 92 in september after a short illness ( born with true YORKSHIRE grit) and is now at peace i hope form the life he ha sled since my mother's death in1997.
sorry not to have any good advice for you at all other than what the others all say on th e site
it has been v uplifting for me reading all your posts -i do not think i am in denial of this PSP but i am in denial that i cannot do much any more for myself my partner or the cat!
it is difficult to accept that, and is v frustrating for the other half in our lives
i do not have children(and therefore no grandchildren) and for the 1st time in my life i am glad as it is so painful watching a parent going downhill with this PSP or anything like it ....
my dad died.aged 92 in september after a short illness ( born with true YORKSHIRE grit) and is now at peace i hope form the life he ha sled since my mother's death in1997.
sorry not to have any good advice for you at all other than what the others all say on th e site
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and hug sand xxxx to u all
The definition of "heartbreaking"........
How to handle PSP sufferers inner frustration?
I haven't blogged in a while; A little update!
My Dad
