A little overwhelming: Good morning everyone... - PSP Association

PSP Association

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A little overwhelming

Nicnic7 profile image

Good morning everyone. My Dad was diagnosed with PSP a little over 3 months ago, after we went through over two years of various tests and hospital admissions to try and work it out. I don’t live in the same country as my dad so I’m now travelling back and forth to the UK for a few weeks at a time to live with him and help him as much as I can. Then I come home…feel guilty and go back. I guess I don’t really have any questions yet - I’m doing the forms for allowances from the government and helping him trying to find new accommodation- I’m just finding it very hard. I know it’s MUCH harder for him, and I’m so angry he has to do this. I know you have already probably been through this cycle, and I’m really trying to look after my own mental health….I guess I just wanted to say this out loud. To all of you caring for someone with any of these terrible illnesses, you are amazing. I don’t think I can do it. N.

21 Replies

You might just surprise yourself. Ask for help when you need it. This forum has a wealth of experience you draw from - just ask.

Tim x

Nicnic7 profile image
Nicnic7 in reply to daddyt

Thank you. These words of encouragement really help. I’ll make sure to ask the question I need to. Thank you x

It is hard, but it's good your dad has help from someone at all, I think it's wonderful you care enough to do this for him. Having done blue badge, attendance allowance, council tax forms etc you realise getting help from the system is hard for vulnerable people.

I found I wasn't able to help my dad properly when he lived 5 hours away, like you I was taking days off work to travel there to help with everything. I got him a flat over the road which made things easier.

I know you're not asking for advice, but I'd like to tell you one mistake I think we made which was we never had any home care in place when dad was a long way away from us, we never really considered it because dad was just plodding on on his own. But we now know he was struggling and not telling people about his falls. Eventually he had a bad fall and the hospital wouldn't let him back home, and that really was a problem. So perhaps if you haven't already, have chat with dad and see if he could use a carer going in occasionally. If nothing else it's another pair of eyes to check dad's OK and it might take some pressure off you.

Nicnic7 profile image
Nicnic7 in reply to Nodbod

Thank you so much for your reply- the system is hard- just the attendance allowance form alone is massive and its taking me ages to try and do it with Dad. I just cant get over how vulnerable people are supposed to try figure this out themselves. Its a very good point you make and advice is more than welcome- I have a couple of people keeping an eye on him now, but I don't think he is 100% honest to them- seems to save it all for when I'm there. Its really good advice to consider future options, even when you want to believe you wont need them. Thank you for taking the time to share your story.

Receiving a PSP diagnosis is a massive shock to everyone involved. The implications are very hard to process, and I know it took months for me to try and wrap my head around things after my husband was diagnosed. It can feel very overwhelming at times, but you honestly have no idea what you're capable of until you have to do it - you'll probably surprise yourself! That's not to say that there weren't more than a few occasions when I wanted to just hide away and cry, and going through this taught me to ask for help, and more importantly, accept help when it's offered. You are not alone. This site is a fantastic place where people will give you great advice, but also listen when you need to vent and understand exactly the dark and unhappy places you can sometimes sink into. The PSP journey is very tough, but it's not all doom and gloom. There are lots of us who have made it through, one step at a time, and you will too. Hugs.

Nicnic7 profile image
Nicnic7 in reply to Sawa

Thank you for sharing Sawa :) on more than a few occasions I've locked myself in the bathroom and cried. Dad caught me once and he just said- "don't cry, we are not going to waste time" and he is right. The point you make about help is a very valid one- I'm not good at asking for or accepting help- this forum is my attempt at changing that and not "going it alone" and I all of a sudden don't feel alone.

Building on what Nodbod has said, get him a falls alarm, so if he does have a fall he can call for help.My Mum lived over 3 hours away when she was diagnosed. She took some persuading but I got someone to go in and help her shower & got her a cleaner. An OT did an assessment & provided some grab rails, shower seat, perch stool, long handled grabber for those things you drop. The calls people were great & would ring when Mum activated the alarm & let me know & whether she was going to be taken to hospital or not. The crunch came when she had a fall and the ambulance man told me she'd broken her arm & were taking her to A&E. They kept her in & I found it very difficult to find out what was going on, I was told she wasn't eating which worried me, then found out she was on nil by mouth because she was waiting for an operation but they wouldn't tell me for what (patient confidentiality gone mad) but I eventually found out the arm needed pinning. That was it, the worry was too much and we moved her to sheltered housing near us, where with plenty of support from carers & my husband & I she was able to stay until the end.

The other thing which I knew I wouldn't have been able to cope with if she'd been so far away was when she lost the ability to hold a conversation on the phone - it was a combination of it being too hard to concentrate, her voice getting very quiet & inability to see & hold the phone.

I know these are things which you probably don't want to hear & it must feel so overwhelming at the moment but it's better if you do think about the future and plan rather than having to make snap deciscions because you've reached a crisis point.

On a plus side PSP does make you appreciate the small things in life, Mum & I always enjoyed each others company and we could still make each other smile right until the end.

Good luck on your journey, use this site & also the PSPA website & help line. xxx

Nicnic7 profile image
Nicnic7 in reply to AJK2001

I really appreciate you taking the time to reply. And you are right- I don't want to hear some of these things, but I know I have to listen. I've never been a good planner- partly Dad's fault (I cant still blame him :)) as he lives life day to day- hence the fact that some things are really not in place. I already did the power of attorney for health and finance so that I can always follow the medical journey and always be able to ask the questions, linked medical records etc- just these practical things that I've started to do. The speech/communication thing indeed over the phone is starting to become an issue so I seriously need to think about moving home at a point. Like yourself and Mum, Dad and I have had a brilliant time recently, just sitting together and watching TV and chatting, making photo albums and just being...I'm sorry for your loss and I know the time will come for me too. Thank you for your kind wishes.

Hi Nicnic!

By internal mail of this chat I am sending you our experiences and information gathered in 8.5 years living with PSP as well as a general idea about the phases and symptoms that you will encounter along the way.

I suggest that you read the part of the information dedicated to caregivers first.

I hope this helps you make up your mind.

The opinions of my chat colleagues have always been very helpful and their help has been a relief on many occasions.

Hug and luck.

Luis

Many thanks Luis- Ill take the time today to read through everything. Its so helpful to me as a reference to little things I notice and practical things I can do. I really appreciate it. Hugs

Hi Nic, it's devastating to get that diagnosis, isn't it? My instant reaction was "Fuck, that's not me .......surely I can do something about it", and within days put in place an action plan. True I seem to be the other end of spectrum: aged almost 80, diagnosed 2.5 yrs ago, and pretty healthy otherwise. But my action plan of Therapies, Diet, Supplements and Targeted exercise have kept me from any rapid deterioration. I also have a partner who is now registered as carer, which is great.I am pretty independent and autonomous, and have just passed my disabled driving assessment again.

So I've learned a huge lot of practical stuff since diagnosis, now written up in 3-A4 pages. Very happy to send this to you. Better by email, so if you will, please send ur email address. Saves cluttering up a mass of space on this site (also, of course, a possibility)!

Do remember - and also ur Dad - that PSP stands for Please Stay Positive! Which area is he, by the way?

With love and lotsa positive vibes. Timbow

Oh Nic,I forgot to give you my own address, which is twillcocks2@gmail.com. Timbow

It is. And if you knew my Dad, you would be like- there is NO way. Dad has always been super healthy and annoyingly energetic. I think that is the worst part- its like one extreme to the other. Night and day. Your story is inspiring with regards to your continued independence and I would be very grateful if you would be willing to share your learnings - I've tried to start Dad off with supplements and some dietary things, but he just forgets or I don't know....doesn't have any belief in them. I just want to scream: JUST TRY IT, PLEASE.Regardless we are going through this with humour and love, so you have now changed for me what PSP stands for :) Leeds/Otley area. Ill send you my email. Lastly, I am sorry for your diagnosis- I hope you maintain for as long as possible how you are now. Thank you once again xx

Willowden profile image
Willowden in reply to Nicnic7

Hi, I just noticed you put Otley/Leeds area. I help care for my mum there. If you would like to contact I can send you a private message later?

Dear NicNic, yes, any diagnosis of this kind is totally overwhelming and I truly feel for you and your dad right now. My husband was diagnosed with PSP 2.1/2 years ago after about four years of hospital appointments to every specialist imaginable. I am still managing to look after my husband at home and on my own (we have no other family). I never thought I would be able to cope for a month let alone as long as I have but as this ghastly illness progresses, so does your ability to cope somehow as you gain more knowledge and experience. We both know I will not be able to keep him with me until the end and that at some stage, whenever that may be, he will have to have full time nursing care in a home. It is all so heart breaking but acceptance and total honesty by both patient and carer is an absolute must for both your survival. You will find inner strength and eventually find a way to protect your own mental health also. I not say this because I never thought it possible that I would cope this long. I hope this helps in some way.Sending hugs and understanding.

Thank you so much for sharing.

I'm here crying again- its so lovely that many of you have taken the time to reply to what was just me saying something out loud. Trying to get the diagnosis has been such a trial. He was diagnosed with severe vitamin B12 deficiency and we thought YES, thats it, Then it wasnt, and after a few more months we got this awful news. I was with him when we got the diagnosis.

You have been very brave and I know I have to do that too- but this has really floored me. All of a sudden there is something I can't control. You are right about the knowledge and experience- its also partially as I dont know everything and every time I go back, something has changed. The information I have been offered so far here is a huge help.

As you say the honesty is important- we have to realize one day things will change so much that we cant continue like this.

Thank you for your support and for everything you are doing for your husband- you're amazing.

SilP profile image
SilP in reply to Nicnic7

Hi Nicnic7, sorry I don't have any great practical advice, but I also live in a different country from my mum who has CBD. The guilt of not being near her is enormous and I keep on thinking I should relocate, leave my life, to be closer. It's hard and there is no right or wrong answer. I agree trying to find poeple that can help is key, whether that's a carer, a nurse, any type of support network. Do it asap, before it becomes an actual emergency. It's a tough journey for everyone involved so try and be kind to yourself

You’re safe here to express yourself openly and freely with no judgement.

My advice, get your dad an aid now to make transition to later phases easier on everyone. My ex’s family took 8 months to get an aide ……. Just horrible.

For you, I strongly suggest starting to work with community outlets- senior citizens group, church’s …. Good people who are live close to your dad.

Basically, it just SUCKS. sorry for bad language but it’s the truth.

Best thing I can say is to try to take it a day at a time. Get as much help as you can and/or try to be a step ahead with looking toward future needs and possibly assisted living places. Best thing about this forum is we all understand. We start where you are, scared and nervous, but this really does help whenever you need advice. 9 months ago I was where you are, my moms has CBD, and I would run to the closet and cry too when I was overwhelmed. But with the help of this and family we’ve been able to help mom the best we can. Big hugs. This will be a difficult journey for you both. Your mental health is very important too, so make sure to take care of yourself.

I meet my.lovely lady that I've taken care of going on 7 years now because I have a cleaning business in town. And she has no family that is willing to help her or close friends. So I told her I would be there for her to help her. I've been her everything finding staff, managing her and staff. I had no choice to get help because I have a very accomplished cleaning company I run and work full time doing so. But for the last year I've worked day time cleaning and evening and weekends with her. I feel the same way I can't do this but by the strength of God I am still able too. So yes get as much help as you can even if Dad resists. My lady can't process how hard and bad things are. She is just coming around to taking serious her days are very numbered. As she has been declining rapidly since January. And yes they get very forgetful to do simple task. I love ready and the support from this group. We just have to remember as hard as it is on us they were the ones giving a death sentence as nobody has survived this evil disease. Good luck and strength to you!

Hi Nic

It is one hell of a shock. It floored me when dad was diagnosed 5 years ago. He was then walking, talking, able to shower himself, make a cuppa, all normal things. Now it's very different

My advice to you is cry, you are grieving for losing your dad to this. I cried for many months after he was diagnosed. I didn't know what else to do.

But while crying you also need a plan of action.

These are things that I have learned....

1. Record his voice.

Get video, audio clips. Have him tell you stories about his life, little things that he got up to. What you are like a a baby, how he met your mum.

Get a go pro, you can have him record things onto it, asking for a cup of tea, cake, a wee, bed anything that he won't be a able to say or do going forward.

2. Get lasting power of attorney for health and wealth. Now not next week, now.. as you will need it sooner rather than later.

3. Disabled badge.

4. Council tax reduction

5. PIP. Its a mind field but it can be done. Always paint the worse picture to their questions.

Ie can the person button their shirt.

You could say yes as dad can do it 4 our of 7 days but what about those other 3 days when be can't? Therefore you have to answer no because he can not do this all day everyday.

6. Contact your local carers centre. They can help set up support for dad. They can arrange to come in and shower him, do shopping etc. If you have under 24k in savings it should be free..over that the council cap is £100 per week.

They might be able to help with filling in the PIP forms

7. Get in touch with your local occupational therapist, speech therapist and social worker.

The OT can supply equipment to help you and dad. Ie walkers, wheelchairs, hoist at no extra cost.

8. Wet room. If you don't have one, look with the help from the council or social to get one fitted. It makes life so much easier.

It is overwhelming at first and I felt like I was going to drown. I can only describe it like having 2 dad's. My childhood pre psp dad who was the light of my life, full of fun, energy and wickedness. And now my psp dad who is still the light of my life but who I feed, wash, watch TV with and fret over. As much as I hate what this has done to him and the family, I feel privileged and honoured to be able to be there for him and my mum to show him how much he is still loved and wanted.

Take care of yourself.

Pj xx

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