My father was diagnosed with this horrible illness a while back after what seems to be the usual misdiagnosis of Parkinson's. How I wish it was Parkinson's he suffers (no disrespect meant to those who suffer or have relatives who suffer Parkinson's). I've joined here because other than my mum and dad, who live 30 miles away from me, there's nobody else who knows a thing about PSP. I feel constant frustration about it due to the fact it's almost as if people who know nothing of the illness assume I'm exaggerating. I'd just like to give a back story to mine and my father's (Keith) relationship and how it is affecting me.
I suppose the earliest relevant memory I have of my Dad is waking up at about 5am after a nightmare one morning, hearing him stirring and getting ready for work (my Dad, before his retirement, was a hard working man who never let anyone down when it came to looking after his family), I ran down to the kitchen and grabbed onto his leg, he made me some jam on toast and told me there was nothing to be afraid of and I'd be safe to go back to bed and sleep it off ready for waking up for school. That memory sticks with me because it sums up perfectly how he's always made me feel - safe and protected. That relationship I had as a young kid developed into a more "matey" relationship, I'd be walking home from my first proper job and walk past the local pub to see him in there waving me in and we'd have beers and a good laugh and joke together. This went on for years, I consider him my best friend and my hero and as long as I had him I felt untouchable.
This is where the story unfortunately takes a twist that neither me or my Dad expected. He gradually started to lose his balance and kept falling "Well, he is 65/66" I used to think, as I was either there helping him up or I was reading a text from my mum describing his latest tumble. I used to carry on taking him out for a drink or 2 and I was at that point concerned but thought maybe it's a phase that will pass. Then came the more serious falls and the eventual diagnosis. PSP? What's PSP? I still remember that first night I read up on it, I cried to myself as it described his decline and physical changes so perfectly.
So now here we are, 24 years on from my Dad making me feel safe and loved after that nightmare I had, going through an unimaginable nightmare with him suffering it. I take him out in his wheelchair and he's so sweet and vulnerable, like I was as that 9 year old child he reassured so well that morning. I feel lost, lonely and confused without him there to protect me.
If this strikes a chord with anyone, please get in touch as nobody I know seems to understand this terrible illness.
Thanks for reading
Dan
Written by
DanRiley
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Hi Dan - not sure if you got the reply I tried to send you but anyway I was trying to say that I care for my husband who has PSP and we have a son who is just the same age as you and I'm sure he feels like you do about the strange reversal in his relationship with his father. You expressed it so beautifully and I found what you said very moving.
Now you have found this site you will find lots of people who 'understand'. We are all trying to muddle through as best we can and hoping to make some sense of the emotional roller coaster we are all on.
Are you able to get to a PSPA support group meeting? Perhaps you could go to one with your Dad (and Mum). You will find it interesting and supportive I'm sure and it is reassuring to know there are others in your area going through it too.
Hi Dan. I'm sorry your dad has this horrible illness. I don't know exactly how you feel as I am the wife of a 67 year old with PSP, not a son. We have been married for nearly 43 years though so know what it is like to see someone you love deteriorating quickly. We have 3 sons, just a bit older than you and I can see the sadness in their face when they kiss him goodbye after a visit. Speaking as a mum and full time carer, I really appreciate "the boys" visiting, which they do regularly. They help me do those little jobs their dad used to do. Although I have become very handy with hammers, screwdrivers, wood glue etc, it is very comforting seeing them tackle odd jobs and I think my husband likes to know I am being looked after too.
Last week our middle son had to help him onto the commode and he just got on with it as if he had been doing this for his dad for ever. I was thinking a son shouldn't have to do this for his dad but I'm sure the matter of fact way he went about it must have taken some of the embarrassment from his dad. Roles have reversed now. I am quite a strong, independent woman but without their dad beside me, helping me make decisions, I know they worry about us. It's quite amusing sometimes. One will phone and say they have all had a chat and think that............ They will suggest something that I have already thought of or am already doing. It's good to know they care.
It's going to be hard for you seeing your dad as PSP progresses, as it is for all of us but for him and your mum to know they have someone who loves them and who they love, it will bring great comfort.
If you contact the PSPASSOCIATION, they can send you cards that will fit in your wallet that give information about PSP. When my husband was first diagnosed, I gave one to everyone who said, "What's that". I still do but not so often as I think everyone in our village must know by now.
Hi Dan, I'm glad you found this site. It is good for asking q's, giving answers or just venting. I'm from the US but there is a site called CurePSP.com it will send you a whole packet about psp, from definition to brain donation sites, it has it all. My husband has donated his brain (when his days are over ) to the forwarding of the cure to this evil one. My boys are in their 20's same like my girl, and they have not met anyone who knows what it is....We do need to educate the "whole village" I pray (and have faith) that you find the strength to help your dad and mom work through this to find your new normal
Hey Dan - I think I know how you feel. My dad was always there for me, catching me when I fell and not just physically, and even now, in his frail state with difficulty expressing what he wants to say, he still worries about me - and cares. I moved in with my parents last September because he was having more and more falls (although none yet this year), and I am doing what I can. It will never be enough though, he did so much for me. The ignorance is frustrating, even his own GP keeps referring to Parkinson's. I need to find a new one who does understand. One more thing on my list...
But you can still be there for each other - he is still your dad, with or without PSP. I'd take him to the pub again if he's up for it! It's sad to see the decline, when you remember how he used to be - but he's still here, enjoy the time you have with him.
I cut off one of my dad's favorite bushes in the garden a couple of days ago - he said why did you do that? Because I thought he had pointed at that bush and I know very little about gardening but I want to help. He just shook his head and pointed at the big weedy young tree that needed taking out. Ah, right, now I see! If I am frustrated with it all, it's those moments that show me how frustrated HE must be! Some days I really feel like I can't do anything right.
Anyway - that was just a little story for you, for what it's worth. All you can do is love your dad and be there for him, just try not to cut the wrong plants
My dad had bad arthritus and I remember the shock when I suddenly saw him as a weak and vulnerable old man. That couldn't be my strong dad, who climbed trees, lifted me up, sorted everything! Now he struggles to do anything. I felt heart-broken.
My dad died 15 years ago but I still remember how hard it was to adjust to.
My husband has P.S.P. and I have the same problems you feel in managing the change from him being strong and confident into him being weak and vulnerable.
Our sons are so important to us both in feeling supported and knowing they know and love the inner man, They are a source of strength to us both. I know that will be true for your parents.
We are grieving the loss of a loved one, at the same time as constantly adjusting to the changes in the present.
Thanks to all for the responses. My mum directed me here as she posts regularly (Patriciapmr) and told me it's a big help. I can certainly see why. It's nice to have people who understand to chat to.
I do take him to the pub when I'm over visiting (which I try to do weekly, work permitting), it's a different experience in that I have to wheel him there in his chair and he can only have non alcoholic beer, but once we're sat down and the conversation starts it's great. I'm visiting later and plan to take him tomorrow afternoon. I've thought about quitting work and moving home to help my mum and try to prevent his falls but I know how much it'd upset my Dad inside if I gave up my job and moved home.
So glad you got lots of supportive replies - I knew you would! Sorry I was not very good at communicating last night, it was a bit late after a busy day and I am a bit of a novice about how this site works with hidden messages etc! Do keep posting - it is very good to hear the views of different generations and for us 'oldies' to get an insight into how this horrid disease affects all members of a family. I know it is very difficult for our children, and our son in particular, but their problems are rather different to mine as full time carer.
My heart goes out to you as My farmer Dad also had PSP and was misdiagnoded for ablut 5 years and by the time we did get a diagnosis it was too late for him to enjoy any quality of life. He actually thought he was going mad because his balance and his eyesight went and no one believed he was ill. Doctors etc thought it was depression! The last year was heartbreaking but he died peacefully last month and I am glad he has no more suffering. I miss him terribly.
Thinking of you both and knowing exactly how you both are feeling.
Hi Dan, welcome to the site on the web. I know the internet get a load of bad press, but without this page, who knows which funny farm I would be locked up in now! My husband has PSP, but I can remember clearly how I felt when my Dad was diagnosed with Cancer and soon after died. I too, lost my safety net. The way I describe it, is how a young toddler feels learning to walk, safely within the arms of its parents ready to catch them. Somebody suddenly took those precious arms away! With you it must be worse, because you can still see your father, but wonder where his arms are, why they are not there to protect you. Any words of wisdom how to cope? None, too busy with the same thoughts!!!
How you cope with the present, is something that we are all here, to help get you through this. By the sounds of it, you are doing a lot right! Just being there for your Mum, is the best thing. Making sure she is alright, not too tired, coping as much as it is possible to do. YOU can't be there most of the time, YOU can't help with most of the day to day living. What YOU can do, is take your Dad out, get carers in, so YOU can take your Mum out. Take them both out, try to take some of the huge responsibility off your Mum's shoulders.
S has a son, who lives very close by, but rarely comes near us, is really struggling to come to terms with this illness of his father. I am at my wits end, I just don't know what to do, he needs help, but me the "wicked stepmother" knows nothing. It's all " whoa is me" I'm just the mug that has to look after his Dad. Your advise would be appreciated!
Dan, we are here to help, please feel to ask any question, vent any feeling. You were saying about Parkingsons, I feel the same about cancer. Not PC in this world, when SO much money is ploughed into research for its cure. Hey ho.
Hi Dan - my Dad has PSP as well. It's so hard to see them like this isn't it? All those times they were able to 'make it all better' when we were little kids. Now its our turn. I know we can't make it all better, but we can comfort and love and support and show that no matter what, they will always be our Dad.
It sounds like your Dad really enjoys his outings with you - keep it up. They are good for him and good for your Mom too - she'll need those breaks. (No idea how your mother is, but mine, sadly, isn't very good at coping and even worse at asking for/accepting help.) Do you have siblings? Any other family close by you or your parents?
I'm glad you came here, Dan. This site is full of warm, caring, humorous, wise and insightful people. Ask anything. Go on a rant. (I do waaay more reading here than posting as I'm not entirely sure of what I even want to say or how to say it most of the time!) - it's just comforting to know we are not alone on this journey.
Stay strong, be gentle on yourself and cherish every moment (the good ones and the tough ones) with your Dad.
Many thanks for the response. It's always reassuring to read the responses of people going through the same thing. I never thought I'd talk to anyone but my mum that understands PSP.
I think he does like to get out and about with me, he was always out socialising before he was ill so it must be odd for both my parents to see so much of each other. My Mum enjoys a break and I get to spend some precious time with my Dad so it's good all round really. Saturday was difficult, he was falling asleep sat outside a pub with me, it was very humid however and he's not started the day too good (balance wasn't on great form). I won't sugar coat it, I don't deal with it all too well when I'm back home on my own as I've always been so close to my Dad, but I mostly manage a brave face when I visit. I work in a customer facing environment also, so as with any customer service role I get my fair share of awkward situations which grate at me that bit more currently. On the flip side I go out of my way for the nice customers and they often make up for the bad ones.
I'd love to hear what kind of days out people with relatives who suffer PSP, recommend? I'm not sure if he gets bored very fast when we're out in pubs currently. That's possibly due to him having to have 0.0% beer!
I understand what you mean, '...when I'm back home on my own...'
That punch-in-the-gut dose of reality. Having a good cry can be a much needed release so let those tears flow my friend. Have you thought about/or joined any support groups in your area? There aren't any PSP specific support groups where we are but there is a caregiver support group my Mom attends.
The place where you work - are they understanding/supportive? Is it possible to take time off here and there as needed? Working with 'Joe Public' is NOT easy, even when we are in top form! (Good for you, going out of your way for the nice customers.)
Days out - we try to go to places Dad always liked going. Visiting friends & relatives, favourite restaurants, cottage...etc. We try to keep these outings fairly short as he does tire quickly now. When he's ready to go, he is very clear that it's time (he tries to get up, or starts pointing to the door). If Mom ignores him, he'll start saying "home" repeatedly.
I find that Dad's 'good' days fluctuate - even times of day. Mornings seem a tiny bit better (he seems more alert and stronger), unless he's had a tough night (up several times trying to 'go'). He too can appear bored (eyes closed, leaning heavily to one side and/or head drooping forward), but I've found that he's actually still very much aware of everything going on around him. Because his speech is all but gone, I ask him to give a thumbs up or thumbs down - keeping the questions simple and one at a time.
Is your Dad able to talk at all? How do you communicate with each other?
My work place are quite understanding yes, as much as anyone who knows nothing of the illness can be I guess. The owner of the company I work for has been nothing short of excellent, regularly emailing me to see how things are. My Dad still talks yes but he seems to be getting quieter and quieter and gets frustrated when we can't hear. I seem to still get some decent conversations out of him, which is good as we used to spend hours in the local pub chatting. He's always been quick witted and sharp and every now and then he'll come out with a short, witty response to something and that always makes me laugh.
I'm going to try and think of something to do other than just going to the pub so he doesn't get so bored so quickly.
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My rock... my hero... my dad
