… how can I help him not only accept what’s happening but get him to engage with others who are going through the same thing?
Mum is his carer (married 55 years) and he is still at home. His main symptoms are speech difficulties and poor balance. He’s 77 and this time 2 years ago he was playing golf five times a week and hiking through the Peak District. Now he can’t walk to the kitchen without a stick. He’s always angry, especially when he can’t say what he wants to say, and he’s secretly drinking to the point where Mum has to hide the alcohol.
I see them every week, sometimes twice a week and when I notice changes, which I mention to Mum, she will often deny they are happening or minimise the significance. Eg. tremors I’ve noticed Dad having in his right arm, Mum claims not have noticed anything, but she must’ve.
When Dad was first diagnosed a year ago, Mum was very gung-ho about facing whatever was ahead (thankfully she is fit and healthy and a true force of nature) but, as the months have gone on and Dad deteriorates, I’ve found Mum dismissing or excusing some of his worsening symptoms.
It’s distressing enough for me as a daughter to see what’s happening to Dad so I can only imagine what it’s like for Mum, who lives with it every day. I think she’s exhausted and also has periods of denial herself, which is perfectly understandable - this wasn’t how their retirement was supposed to be! My brother helps when he can but he’s 100 miles away, while my sister lives half way across the world and barely asks after Dad because she’s in massive denial herself. Every waking thought is about my Dad and how he’s suffering, and Mum and how she’s coping. I cry myself to sleep most nights, terrified about how much worse things are going to get, and I struggle to focus on work or anything else.
I’m so grateful that they have each other and that Dad is still at home as I know it could be so much worse right now. But I want Dad to engage. I want him to come on here and find others he can relate to. I don’t want him to become more isolated than he already is.
We are close and sometimes I can get him to open up about how he’s feeling but Mum is very protective and it’s difficult to get him alone.
I don’t know how to help him. I’m always the Bad Cop, on at him to do his exercises, limiting his beloved beer and wine (which make him lose his balance all the more) and nagging him to use his stick, which he loathes and rejects at every opportunity. I’m losing count of the number of falls he’s had.
I just want to keep him safe but he’s determined to break all the rules as if, by doing so, he can beat the disease.
How do I get him to accept what’s happening to him and how can I persuade him to engage with others who know what he’s going through? The physical symptoms of PSP are one thing but the mental repercussions are something else altogether. Within 12 months he’s lost his sister, his brother and been diagnosed with this cruel disease. I can see him withdrawing more and more into himself as the weeks go by and my heart is breaking.
How do I help him?
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RedWriter
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My husband is 77 and I'm 75, married 54 years, with me being his full-time carer.
My husband went from being able to use a Rollator to being in a wheelchair outdoors. He cannot use a walking stick as his right hand is already so stiff with limited grip capacity. He uses a walking frame indoors.
He has also become reclusive and the only time he goes out, is to medical appointments and if there is a family get together at our son's home. We live in a very small 1 bed cottage on the same property.
The Neurologist explained that as the brain is affected it creates the apathy to do things, like exercises, participating in groups with the same diagnosis etc. Initially I would keep on saying it would benefit him to exercise to keep the muscles as strong as possible. He told me that I was nagging him.
We have had both an Occupational and Physio Therapists visit several times and shown, plus given a written list of what to do.
As speech is difficult he isn't interested in talking to people.
Our daughter lives in Houston and we're in Hampshire so she has found this very difficult to watch from a long distance, and not being able to step in to help me and her Dad if needed.
I've not been able to give you any good advice but rather to say that your feelings, your Dad's frustration at times and Mom coping as best she can and feels are understandable and we have to forge ahead as best we can.
Thank you so much for this message, everything hits very close to home. I really appreciate you reaching out and just to know that we’re not alone through this means absolutely everything and has already lifted me day a little.
Thank you again for sharing your own experience, it really is greatly appreciated.
This site was a godsend for me but my mum didn't want to know what lay ahead. She dismissed it, I think this attitude kept her going.
The falls with fractures really seem to accelerate the condition.
I'm not sure how helpful it would be but mum used a trolley in the house as she was more stable with both hands rather than a stick.
If your dad doesn't want to engage over the illness I'd let it be.
He can feel the deterioration and your mum is witnessing it. As I was told many times, events will take over and those conversations will happen. I wouldn't force it.
Your mum is carrying on as best she can.
Maybe I would suggest a review of meds as drinking is self medication a lot of times to cope with stress and pain, so possibly an increase in anti depressants ( or starting them) and ensure pain medications are adequate.
The anxiety when dealing with this is immense. Try and think about the issues here and now, I spent too much time worrying about what the future holds, it's such an unpredictable disease. Take the good days as there are some and be kind to yourself.
Your siblings will proceed as they see fit, just do what is right for you.
Wishing everyone all the love and as much peace as you can muster x
Dad's already on Sertraline for depression, though I'm not sure when he started on those (I found them by accident in a drawer). His symptoms have been there for a few years and it took 2 years for him to see the Neuro and have an MRI, but at least it's been done now.
Yes, I also spend too much time worrying about the future and how things are inevitably going to get worse for him. I should be living in the day, as he is doing. He's always liked a drink so I don't think he's drinking to self-medicate, I think it's more that his freedom of choice has been taken away and he's drinking because he wants to, even though he knows alcohol make him even wobblier (as it does all of us!).
Progressing to using a walker is inevitable, I think, but it's been a victory getting him onto the stick, so I'll take that for now! 😀
Ruth has been on Sertraline from the beginning - she started at 50mg and then she increased it bit by bit to max 200mg everytime she started feeling blue again. It definitely helps with her mood. It takes a couple of weeks to take effect.......
I've just read this and your words literally describe my world 5 years ago. The sequence of events .... everything.
I'm glad you have found this forum now, I really am. You are not alone.
How many times have I said you can take a horse to water but you cannot make it drink ...
My brother and I live 1,5 hrs away from our parents ... it's been tough.
My Dad has CBD (81) mum is his primary carer (79) diagnosed Dec 2019.
For years they were in denial, they spent a lot of time seeking cures. I really do understand that and don't want to sound heartless - what my brother and I saw was decline and also resistance for outside support. They are independent people yet this is a horrible disease. Both my parents are scared, fearful and deeply love each other ... wow they have been together 59 yrs!!
Get the MDT together - in my experience its a lose administrative word in the NHS HOWEVER bring the specialists together, get them to know your parents are people and not just a number - the GP is key to bring this together, make sure they are informed and know they are accountable - neurologists, palliative care, hospice, district nurses, physio ... there are so many things you can unlock in terms of aids for home, free services etc etc
I'm going to come back to you on this, we have a CHC review tomorrow that I am attending so knee deep in paperwork.
"How many times have I said you can take a horse to water but you cannot make it drink ..."
Yes, that's exactly how it feels but, having read the experiences of you and so many others on here, I realise I am wanting Dad to do what makes ME feel better, and not what is necessarily right for him, right now. So I'm going to take the advice being offered by many, which is to allow Dad to figure things out day by day, and just be there for whatever he needs me for. Mum, too. After all, they're in this together, and thank goodness for that. The thought of him enduring this on his own would be too much.
I'll also talk to Mum about preparing for what's ahead insofar as an MDT is concerned. We've had the speech and occupational therapists, but only for a few weeks each. Going forward, as Dad deteriorates, I need to make sure he gets what he needs, when he needs it, and I know that means a huge bureaucratic minefield of form-filling, box-ticking and superhuman amounts of patience which, of course, PSP don't have because time is not on their side. That's the next battle - launching into the maelstrom of paperwork and phone calls to ensure the required treatment is available when he needs it.
I fully understand how you feel - I have felt very conflicted over the years and at every stage.
I'm sat with Dad now, mum is feeding him ... he can barely communicate and I just asked him what was the most beneficial thing you did early on.
He had a specialist physio in movement disorders and for 5 years has come every week - this kept dad moving .... he was a golfer, played rugby, football ....
Find a specialist ... the one that the NHS provided did not have the expertise in movement disorders - I appreciate not all can afford, however if you can, Dad says this is the one thing.
========
The conflict comes from you love your parents, you can see how painful it is and you can see how you can help YET they are not where you are as they are in the thick of it.
My mum is clears she doesn't want dad in a nursing home and his wishes are to have end of life care at home.
Everyone processes in a different way, like I said as soon as Dad had his diagnosis we (my brother and I) knew and as we learnt more about CBD we had an understanding of the end of timeframe.
As the children, it's very easy to be still seen as the children and for our parents to keep us that way in their minds despite being 50 plus years of age 😀 What my parents constantly do is to try and protect both my brother and I so they are not a burden (Conflict) we love our parents dearly and will do anything to help them.
Your spot on with what you are doing - its a bureaucratic minefield out there and care differs a lot dependant on where you live, the people in the MDT but what I can say is that you are the most powerful advocate for your parents, become their expert and help to navigate the processes that provide invaluable support.
Hi Red Writer, I am sorry to hear about your dad and understand the impact this is having on him, your mum and you.
Many of us on here are carers and loved ones and we can only imagine and not feel what it must be like to have been given a PSP diagnosis that takes away hopes, dreams and plans. My husband was 62 when diagnosed - fit, strong, a sailor and golfer, intellectually sharp and independant and we were just embarking on early retirement. 4 years on he needs fulltime care and can only walk with a walker and assistance of a carer and cant do anything for himself but understands everything thats going on...it must be devastating for him and it is for me.
When given such a shocking diagnosis as PSP people do go through the stages of grief - denial, anger, bargaining, depression, acceptance. (mychangemanagement.com/navi.... We all go through this in different ways, take different times, may stick at different stages, may not move through each seemlessly, and your dad, mum and you will all be reacting in different ways. I think as family, loved ones and carers we want what is best. We can keep trying with all the suggestions, interventions, ideas of help, we can take action ourselves to try and make things easier but we cant force..
From your post one thing sticks in my mind ... how can I get him to engage with others going through the same thing?" I'm not sure he will want to and i do understand why having seen this same reaction from my husband. He had absolutely no interest in this forum and if you look at most posts there are a few brilliant PSP people sharing, guiding and informing who are quite inspirational the majority of people are carers sharing and finding information to heklp their loved one so I think that tells you you father is no different from many people with PSP - not wanting or later in the illness not able to participate on here. We also joined the newly diagnosed group because I think like you I wanted to help and I thought it would be good for my husband . I found it tremendously helpful and informative but he hated it (sorry guys) and he hated it because seeing others with the illness possibly more advanced than him was depressing and frightening. He perserved but I realised it wasnt good for him and he was only doing it for me. Fast forward 2 years + he has started participating in a Neuro Heroes Zoom Weekly Seated Exercise Class with PSP "friends" some of whom were on the same newly diagnosed group. So what is happening now may change given a little more time and experience of what its like to live with PSP
For the person with PSP it must be hard to come to terms with both initially and through their illness and I think and from what I've read on here people react in so many different ways - some want to learn everything, try everything - a "fight, fight against the dying of the light" approach, some step back and let loved ones take the lead and do what is suggested whilst other are in denial or want to know nothing. I think it is just an individuals ways of coping with a devastating diagnosis not helped by knowing at the onset there is no cure and little known about the condition.
Importantly too apathy is a key symptom of PSP....many times I was frustrated by the lack of interest and effort in trying things, my husbands resistence to talking about his illness etc but I realised that it wasnt just his way of coping it was the illness stopping him...i still get frustrated .....daily
So what I would suggest is try whatever you can - some things will be accepted, some not, some perhaps will be later after consideration or when mum and dad see the need and as things change. Making a list and taking action may help you too, to feel a little more in control and that you are helping/ achieving something so for what its worth here are some of my experiences and ideas that may be helpful and worth considering if you havent already:
- Does your father have a neurologist? if not try via the GP to get a referral. Our neurologist talked to my husband about PSP. Its funny he always listens to the medical professionals
- Do you have a Parkinsons Nurse or Neuro Nurse? if not ask the Neurologist or GP about this support
- Do call the PSPA Helpline - talk to them about your frustrations, they are there to listen and they can also help you id any support services in your dads area useful now or in future,, if they have a link volunteer in your area, how they or you may help your mum, and I would advise - get what you can before you need it
- The PSPA have great resources from written information and advice but also Newly diagnosed group Zoom sessions that if your mum & dad didnt want to participate in you could or you and mum could. They also have carer groups, pamper sessions again of great value for you and mum and more recently via PSPA Neuro Hero exercise classes on zoom which are very well thought of
- Perhaps go with mum to see the GP - ask about support in the area, ensure both of you are registered as carers at the sugery so you can act on dads behalf. They can often link you in to other services such as carer groups, social prescribing- in our area they were brilliant and whislt my husband couldnt do the hobbies he used to he does now go to a supported allottment group and art group with carer accompanying him, and many of the health support departments your dad will need in future - SALT, Continence Nurse, District Nurse
- Check if you have any charities or hospices that support pallative patients not just end of life. In manay areas different charities such as Sue Ryder, Macmillan do support PSP - again the PSPA are likely to know this for your area
- Im trying too, to think of ways to help your mum. It seems like she needs a break. Are there any of dads friends that would come and sit with him whilst you take mum out and at least then she could have a break and you may be able to chat more freely or you come and sit with dad whilst mum goes out.
- Quite soon I found I couldnt leave my husband alone - he would fall everytime I left so I found a company that had male carers and engaged one to come firstly once a week for a few hours, then twice a week. It was a hard sell at first but worked as it was male company and a change and he would take him out or just chat but importantly keep him safe. This proved to be a good plan as needs became greater we were able to increase care with trusted carers and now have them under CHC funding
- Alcohol - I think this may change. My husband started with always wanting a drink, to occasionally to now only wanting cordial. But is fixated on chocolate and even thoughj he cant walk unaided he will try and get up to seek out chocolate if were not careful. Could I suggest mum replaced beer with non alcoholic variety as there are some good brands now and perhaps to reduce the wine intact make it a glass with a meal and water it down a little... just an idea
Hi. I was wondering about the zoom seated exercise class you mention. How do I find more info about it? Are you on UK time zone? My father’s gym cancelled his seated class and we are struggling to find another.
Thank you so much for taking the time to write such a detailed (and extremely helpful) reply. You're absolutely right, I can't force Dad to engage with anything, especially if it's going to make him feel worse. I think I had a simplified notion in my head that information is power and the more he knows the more prepared he will be, but of course that's nonsense. The simple truth is that he's scared and the last thing he wants right now is to read about how much worse things are going to get. So I'll follow your advice. One day at a time.
In answer to the points you raise:
- Does your father have a neurologist?
He's seen one, who confirmed the diagnosis, but he doesn't have one attached to him who he can see on a regular basis or ask questions of. Dad's still not at the stage where he wants to know anything else about PSP other than the fact that he has it.
- Do you have a Parkinsons Nurse or Neuro Nurse? No. I don't think this has even been mentioned to us as an option. Perhaps he's not considered far enough along yet?
- Do call the PSPA Helpline - talk to them about your frustrations.
Very good advice. Advance preparation, I am realising, is going to be key, rather than seeking help when the need arises.
- Ensure both of you are registered as carers at the surgery so you can act on dads behalf. That's great advice, thank you.
-Are there any of dads friends that would come and sit with him whilst you take mum out and at least then she could have a break and you may be able to chat more freely or you come and sit with dad whilst mum goes out.
Dad had friends at the golf club but he's cut everyone out since he became ill. He's extremely bothered by the fact that he can't hold a conversation but, even though I've tried telling him that his friends won't be expecting him to chatter away, he's not interested in reconnecting with any of them, so it's just him and Mum (and extended family who we see every month or so). Mum has lots of friends and I do go and sit/stay with Dad whenever she needs a break. I'm so thankful that Mum has that outlet, but wish Dad had a similar circle so they could both get respite from one another/the situation. Mum is the powerhouse, always has been, so Dad is used to being dependent on her.
It sounds terrible, but out of the two of them, I'm glad it's Dad who has PSP and not Mum. Dad would fall apart if Mum was ill, but Mum has always been the stronger/logical/practical one.
- I found a company that had male carers and engaged one to come firstly once a week for a few hours, then twice a week. It was a hard sell at first but worked as it was male company and a change and he would take him out or just chat but importantly keep him safe. This proved to be a good plan as needs became greater we were able to increase care with trusted carers and now have them under CHC funding.
I'll definitely look into that!
- Alcohol - Could I suggest mum replaced beer with non alcoholic variety as there are some good brands now and perhaps to reduce the wine intact make it a glass with a meal and water it down a little... just an idea.
Dad loves his red wine and beer. On beer he's OK, but one glass of red wine just renders his legs completely useless... but he insists on having it. He's still in the stubborn phase of "nothing is wrong with me", though the numerous cuts to his head over the months would suggest otherwise. I think it'll take a bit longer to convince him to cut down further on the alcohol because it's one of his few pleasures now. Christmas will inevitably mean the rest of us staying sober so we're there to pick up Dad when he falls.
Thank you again for sharing so much of your time and your advice, you've really helped me. x
Thank you for post. I have PSP, first diagnosed with Parkinsons in 2019, I was 59, then PSP 3 years later. My speech is not good which frustrates me and my partner more so! I am still driving so I do have some independence which for me is my normality. I meet up with my friends once a month and although my speech is limited I do join in using the app Speech Unique but I am also quite happy to just sit and listen. I know that this disease is going to 'get' me one day but I am fighting the inevitable. Your post is heartfelt and whilst I understand your frustrations and concerns, you being there I am sure deep down is appreciated.Take care xx
Thank you for taking the time to respond, Golden63! The more I learn about the aids available to help his speech (and preserve it forever), the more I am excited by this. Thank you for sharing.
So you’ve got lots of good advice hear, but just a few thoughts from you Dads perspective, which sounds similar to my Mum a few years back.
1. I don’t want to go to support groups or online as I don’t want to see/hear what could happen to me.
Not everyone wants to reach out to others, whilst PSP and CBD (my Mum has both) causes differences in the brain - they still have their own personality - has your Dad ever reached out the way you want him too? Dont expect him to do things that might be the way you cope.
2. Exercises - Mum said what’s the point? You’ve told me there’s nothing you can do and they are difficult so I’m not doing them. Mum even told me the SALT mouth exercises is that’s she’s not a performing monkey 😂
3. You need support too, seek it from everywhere you can. The PSPA had some funding for counselling, it helps. You might want them to do lots of things but they are their own people too and you have to be there to support without pushing them into things things don’t want to do.
Your Mum and Dad are probably proud independent people who don’t want to burden you or your siblings - so take it slowly find out everything you can and offer support at their speed. Everyone was telling me I couldn’t cope looking after Mum and she needed a carehome for 6 months but I didn’t want to hear it- she’s my Mum I should be able to do this. Looking backwards they were right but I couldn’t admit it until I reached rock bottom.
This is the hardest thing any of you will do, but try to remember he’s still your Dad and your Mum and how would they do things before this diagnosis?
The forums and groups are great if you want them, but you can use them to help them. But they also give you a details you may not want to know as a sufferer.
Keep strong and seek support for you as well as them - this is a tough route for everyone. Xx
You've absolutely nailed everything, there. I need to think more about Dad and how he feels most comfortable dealing with things, as opposed to what makes ME feel better. This Christmas might be the last one where Dad is still relatively mobile and communicative, so I'll make sure we all make the most of it. Thank you for this.
I find it very hard to balance but the illness isn’t him, he’s still there even though any times it feels like they aren’t. ❤️
Vent here or look to some of the Facebook groups there are enough carers out there for support. There’s one called caregivers of progressive Supranuclear palsy - worth joining
Hi RedwriterIt sounds like your parents are going through the five stages of grief.... My mum was diagnosed in 2021 with CBD and she has gone from being a very independent woman to now being wheelchair bound, having to be fed and living in a residential home. Life is so unfair but you have to do the best you can! Just being the supportive daughter that you sound like you are will be enough. Like your dad, my mum doesn't want to speak to other sufferers, but I keep chipping away at her about this forum and slowly she is starting to ask questions and seems to have a little interest so who knows....
Thank you Pudsey, I think you're bang on. I need to just be there and "chip away" and keep listening. This forum has been so wonderful, you are all so generous with your time and advice. For the first time in a year I don't feel so lone. Thank you all. x
I am sorry your Dad and Mum and yourself are going through this,
Your story is so similar to mine and I understand how you feel.
My Dad(80) was diagnosed in September 2023 with possible CBD and after referral to a neurologist it was confirmed it was PSP, although he does have symptoms particular to CBD.
My Mum also 80 is his carer. Myself and my sister live about an hour away.
My Dad started to withdraw from things he used to enjoy previously before his diagnosis as his walking was affected. His right side is worse and his balance is getting increasingly worse. His voice is much quieter too and his takes him time to say what he wants by which time the conversation has moved on. On the positive side he has recently started going to the gym and an exercise class more often(he listened to my husband regarding exercise) and I do feel that exercise does help. One of the classes is run by a physiotherapist he saw and my Mum goes to this with him, which is great for her health too. My Dad is mainly negative to any suggestion of change. This is I’m sure for the same reasons as all of the stories here that the person with the illness does not want to give in to it and accept it’s happening to them. (My Dad did recently say to my husband that he didn’t think this was how he would end up) Like your Dad he was always very active and independent and not being able to do things such as driving or DIY is frustrating. If anything needed fixed my Dad was always the person we went to.
Like you I just want everything in place for him and to know that he is safe. It’s such a strain on my Mum as well as she is constantly worrying he will fall, which he is more frequently. They have their bedroom upstairs and bathroom downstairs. He can still manage the stairs at the moment but they are looking into alterations they can make in their house or move to a bungalow. They don’t want the upheaval of either of these options at 80 years old but unfortunately something will have to change.
I don’t feel I am in a good position to offer you advice as I feel I am going through much of the same as you.
What I would say is what others have said and just keep chipping away. You are not alone although it does feel that way.
My Dad has seen various healthcare professionals with regard to this and also some have recently been a great support to my Mum.
Dad was referred by his GP to a geriatric clinic and it was the doctor he saw who suspected CBD (he is still reviewed by her around every 6 months). She referred him to a neurologist who diagnosed PSP (he has been discharged from neuro but I think only because he sees the other doctor). He has referrals to SLT and Physio. He doesn’t see either on a one to one basis now but does attend a physio led exercise class. Je has had a visit from OT who have suggested some changes and supplied some aids for him to use. They have also had a visit from an architect via OT to hopefully suggest changes for one level living so they can stay in their home of 50+ years. Social work have also been involved and helped my Mum with form filling and Mum was also referred by GP to see a counsellor as she was finding it difficult to cope with everything. She is hopefully going to get involved in some groups through this route. Unfortunately we as carers need to seek out this help and I know each individual needs different things.
One thing we did which my Dad may or may not have to use was voice banking. I heard about this on a PSPA zoom meeting and asked Dad if he wanted to do it. His speech therapist said it was his decision and he has his voice banked now. At the time of doing this his voice had deteriorated but I think the recording we have is a good reflection of his voice. His speech therapist was a great help with this. I’m not sure where you live but PSPA website has a link to Speak Unique and the funding you can get, if this is something your Dad would be interested in.
My Dad would not want to be involved in a group discussing his illness partly because he doesn’t want to think about what is to happen but also because he has never been one to share his feelings. I don’t think my Mum would be either but she is now at a point where she feels she has help she can call on and although the day to day is very hard she is being as positive as she can be. My sister was in denial and I’m still not sure she fully accepts the situation.
I feel I am the voice of doom and gloom sometimes but we need to be prepared. It’s finding a balance I suppose.
Gosh, yes, our stories do sound incredibly similar. I've not heard of voice banking so I'll certainly be researching that. Dad's never been a chatterer, he's always been quiet (being the youngest of 7 boisterous kids is probably the reason!), so it's ironic that now is the time when I long to have a lengthy conversation with him. Thank you for such sterling advice.
A horrible situation for you... I really sympathise. I am 83 male, PSP diag 7yrs ago, and still able to truck on, but far slower and wobbling gets worse. Sleep comes occasionally, and sleep pillls help but leave me groggy. BUT I face it, talk and write about it, so now its a way to communicate, empower myself, and still enjoy life.
There's truth in the saying " Theres none so deaf as those who do not wish to hear".
At some point ur Dad will wish to hear,
And if he does not, the that's his free choice, and you will need to detach fom this scenario..... prob with difficulty, and `I trust with support.
'"Strength to ur elbow" and my very best wishes. TimbowPSP.
I can only think of one thing to add. My husband never liked being treated differently. Conversations that started with "you can't do ..." or "here's what you need..." rarely worked. What tended to be effective was levelling the playing field a little. Let him help you.
Ask for advice from him. Ask for help in ways he is still able to provide it. "I'd like to improve my putting - could you show me?" Even small things like "could you pass me the..." or "hold on to this while I..." would emphasize that you don't see him as helpless - or useless!
That could lead to conversations like "I'd like to learn more about PSP - would you mind helping me find out about ..."
I wish you the best. There are hard days ahead. Be kind to yourself too. It sounds like you are suffering with anticipatory grief - which is normal, but can also run you down when your parents need you, so try to accept that you cannot "fix" this 🌻🫂
Thank you Bergenser, that's good advice, particularly including Dad in conversations. As he's never really been a talker, its easy to talk over him. Sometimes I'll be sat at the table with both of them and Mum will be updating me on things but referring to Dad as though he's somewhere else, not actually sat right there with us! So I do try and make sure he's included in the conversation even if he's unable to contribute verbally.
Dear Redwriter. I understand sooo much of what you have said and feel your love, for your Mum and Dad and your frustration and sadness.My husband has PSP and it has come as a great blow, crushing.
Its bitter sweet that we are still quite youngish 64/ 67 and I have the energy and some knowledge of nhs practitioners and services, so i'm really my husband's advocate.
For us creating a plan / routine is imperative. Otherwise I know we would be lost.
We've joined a chair yoga group which is fun and purposeful. The coach is lovely and half the session is set to our generations music. There are many of us with varying degrees of mobility. Many of us continue to sit on a chair throughout the session.
We have also just secured a physio plan through referral by GP and I asked him to refer us both for exercise on prescription. Ive got some health problems, too but i would also go as my husband's carer.
The gym coach has devised a great plan for us. Realistic expectations and we can record some improvements i'm sure.
Just sitting on the bike with a back rest maybe really helpful for your Dad and your Mum will benefit also.
I never thought ny husbsnd would agree to these activities, he is a golf player and had no interest in the gymn or yoga!!! But here we are by some miracle have foubd these gems, because he does recognise there are benefits for his upper and lower body strength. Also having a purpose to the day is really helping and socially we're getting out.
Maybe your Mum and Dad could make some small steps re exercise. One thing to begin with . 20 min in the gym would be a start.
Its also very easy for all of us to get into the habit of having a beer or a glass of wine. Why wouldn't it? It makes us feel relaxed.
But of course more than one or two small glasses of wine isn't good for us.
My husband likes Guinness and they do Zero % alchol now, which he thankfully enjoys. So he'll have them when we're watching the footie at home.
He meets up with his friends on a Friday night and will have 3 pints of real beer then.
Of course PSP brings along personality changes and stubbornness. Or they may totally agree and then do the exact opposite. We just have to navigate this journey as best we can. Sometimes our family may think we're suger coating something, but we're not, its often just easier to be as positive as we can, to get through the day.
I hope some practical solutions re exercise may help and knowing we are here for you will give you some reasurance. We totally understand your worries.
There is absolutely no way my husband would attend a group or come on here, however we have joined speech and language zoom sessions and the PSPA support group on Zoom, which he is finding helpful, so that's definitely progress. Perhaps your Dad could join the Speech & Language sessions. They are fun too.
I hope this has helped a bit and perhaps your Mum and Dad will consider the exercise groups. Getting up and out will make a difference to their overall daily routine.
Thinking of you all. From one brave heart to another. Huge hugsxxxx
Thank you so much for your wise and kind words, Kirkie. I'm going to spend much of the Christmas break reading and digesting all the wonderful advice from you and other members, and begin 2025 with a more positive outlook. I'll also make sure Dad has a great Christmas. There will be a houseful of us, so hopefully Mum can have a break from all the heavy lifting (literally!) and we can spoil her, too.
I have little to add to the magnificent contributions of Richard33, Millidog, Harsacceptance, MRYaffle, Oumarusk, Kelmisty, Pudsey123, timbowPSP, Bergenser, Kirkie64,.....I also want to acknowledge RedWriter's resilience and his strong will to know and act positively.
It is a pride to belong to a group with so much courage and collective effort. You are formidable and it would be fair if this magnificent organization that is PSPA led to international scientific research programs that alleviate or cure the different variants of PSP. With cancer, AIDS, etc. notable advances have been achieved. Why not also with PSP?
I can only point out several aspects that can help:
1) The patient tends to withdraw his social activities. In our case we tried to attend meetings, meals, small parties until we observed incipient signs that it was pathetic to do so. During that period it was very positive and the group of friends reacted very positively although there will always be some "blunders".
2) It is also common for the patient not to want to go out in a wheelchair. They do not like people to see them in that state. We looked for less busy areas taking advantage of the sun when possible.
3) The care of the caregiver is essential. In our case we selected a group of caregivers to cover 24/7, so that everyone had their own regular and sufficient life as well as vacations, also and especially the main caregiver.
4) In our case we were able to modify the house to have on the same floor an adapted bathroom, a hospital-type bed and a folding wheelchair so that it could easily fit through the doors and we could take it in the car or on the plane.
Hi! My husband is 75 and was diagnosed nearly 18 months ago - had been trying to get a diagnosis for about 2 yrs. Had to go to London for the diagnosis and at that time he was able to travel on the train without any aids - the deterioration has been quick. Even though the neurologist and various medics have tried to convince him that unfortunately PSP is incurable, he too is in denial. He says I’m not a good wife cos I haven’t made him better! Don’t forget that dementia sets in at some point so maybe it’s not possible for sufferers to process the reality of what’s happening to them. I assume you live in the U.K. We live in Southend on Sea and access to all the support agencies is amazing. Get in touch with Age Concern - my husband goes to the day centre twice a week and loves it. The OT is also involved and has supplied different equipment to make life easier.
Meds: your dad should be taking anti-depressants - these have helped so much BUT u may have to trial different ones b4 u find the right one (took about 5 months for us, allergic to 1, another made him violent etc). Now on Sertraline which is gentle and effective. DO NOT LET HIM DRINK ALCOHOL if on anti-deps. Also ask about Keppra for anxiety - that has helped a lot. Try to get mum to join this site - maybe over time she will realise that denying all yr dad’s problems is detrimental to his well-being.
Thank you Rosie, that's all very sensible advice. I'm continuing to read and research and have a list of things I want to find out more about once the festive season is over. Thankfully we all had a super few days without incident, and feel thankful that, for a week or so at least, PSP isn't dominating our lives.
Festive wishes to you and yours, and everyone else on here who has been so generous with their time.
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