My Dad was diagnosed with PSP a few months ago, been ill for a couple of years, the trouble is, he seems to be deteriorating at a frightening rate and I am the only one who is trying to do anything about getting him help. He and is wife are in denial, they say 'what is the point, there is no cure', my siblings are just frightened and are turning to me. I am all about trying to make life easier for him and her. He is now stumbling/falling on a regular basis, struggling to walk and seems very lost at times, but refuses to discuss things or seek help. It took me 3 months to convince him to get a walking stick. He refuses to seek help from a physio or even speak to the PSP people unless he has an appointment they have given him, insisting he goes to see his GP who really is out of his depth with this.
I just don't know how to move forward in getting him the help he needs to make his life easier for him. I have researched as much as I can and have an idea of what is to come and yes it frightens me, but I really need to get him and my family on board with trying to make life a bit easier.
Can anyone offer any advice or had any experience in dealing with this?
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Stormtrooper_Rog
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I am living the same dream (nightmare) with my folks - possibly a few months ahead. In all honesty I've pushed my folks to see & accept what's going on - but the truth is that they need to come to their own conclusions in their own time. I've watched my mum falling daily - literally black & blue with bruising....but neither of them accepting that a walking frame would be a good idea!!! So frustrating!!! eventually the neuro professor who diagnosed psp this summer alerted my folks gp - who in turn alerted a the OT & district nurse.....my folks seem to listen to them (thank goodness!). So...my advise would be (from experience) to back off a bit & leave it to the professionals rather than falling out with family. Try & get the professionals in place & be there when your folks they need you. It's SO hard - but it sound like you (same as me) see it much more clearly than those directly involved. The most frustrating & heartbreaking time ever....feeling your pain X
Just a thought - but have you yourself spoken to your Dads Gp directly? I put a very tearful frustrated call in to my parents GP a few months back -literally begging him to help them even though they didn't want help. That's when the OT was called & she alerted her 'team' of physios etc. My mums GP just said ' I know nothing about it but I will do anything you ask me to' .....not very helpful but at least I now feel I can call & demand! X
I wasn't sure if that was an option due to patient/doctor confidentiality. I know my Dad will be upset with me for going over his head, but the frustration and helplessness is too much. Thank you so much for your advice, it gives me a starting point.
Its such a tricky balance isn't it! I got to the stage that I couldn't watch without doing something regardless of how my parents reacted - my Mum certainly hasn't thanked me for interferring - but I can sleep easier knowing that the professionals are at least aware of a struggling couple within their community! They're GP wouldn't keep it secret that I had spoken to him - but speaking to friends he possibly should have. I wasn't asking for information about anyone - merely enlightening the GP about a potentially dangerous & serious issue with one of his patients. Have a think About it - it sounds like you may get to the stage that u gave it choice sadly X
This is a wonderful place to get advice, help, and to have people who understand what you're going through. My husband has been diagnosed with PSP last year, but had symptoms for about 4 or 5 years before. He is progressing somewhat slow and steady. He too says what's the point, and refuses to take any medication, except what he had been taking before the symptoms started. He's not in denial, just figures there isn't any cure, and the medications that he has been offered, can't really do anything long term. I, on the other hand, wanted him to try everything. All it did was frustrate him, and make him angry. So I decided to step back and do small things to make his life easier. We would talk about each thing I wanted him to try, like a cane. Too months to get him to agree with me buying one let alone him using one. But he will use is it now. Another thing that was small and helpful was something called a bed cane. goes on the side of the bed to help getting in and out of bed. one of the best things we purchased and not too "invasive". I always say lets give it a try, we can always return "it" if you don't like it or it doesn't work. For my husband it's more of a stubborn "I don't need help" type of thing, so I tread lightly. With your dad progressing quickly, sounds like you don't have the luxury of a lot of time, so maybe pick up a couple of things and introduce them to him a little at a time. maybe adding if you don't like it, or it doesn't help, I'll take it back. You know your dad, and if this will work or not. Worth a try. I also purchased a U-Step walker. It's a little different than the standard walkers, made more for PSP and Parkinson's patients. That was VERY hard for him to accept, but he does use it now when he needs to, and he's glad he has it. My husband also, has dementia that comes and goes, and also a great deal of processing information difficulties. Will not take anything for that either. I try to reassure him, but have learned never to argue, or convince him anything different than what he is thinking at the time. It passes and he's back to his "normal". Unfortunately, it will be a long road for you and your family. You're doing right learning as much as you can about the disease, and make sure your siblings and your dad's wife learn as much as they can handle. I've even taken information about PSP to my husbands GP. She is very willing to learn as much as she can so she can work with us too.
Read this site often, you will find it very helpful, I sure have!
I like what you have to say Lynn. It's true no sense in arguing but giving hints of "if it doesn't work, we'll take it back" Most of the time it works.....I am sorry you have to deal with both husband and dad.....you are worn out at the end of the day....hope you are taking care of you....
Hi, I agree with SuzeW. Either phone or better still write. They can't ignore something in black and white. Tell the doctor what is going on, the denial, your Mum struggling to cope, anything you can think of. Use words like, safe guarding and any other buzz word you can think of, that has to trigger some action. Alway make sure you say worse case scenario.
We had this problem, when my mother first started showing signs of Alhzlmers, the doctor refused to listen, kept telling Mum we had been in to see her, Mum then going mad at us. Eventually someone did take notice and she was rushed into a residential home, far too soon. When a little action and help before, might have saved that. Of course there is that patient confidentiality, but there is nothing stopping you TELLING the doctor.
Your parents are going to need support and in time Carers coming in, to help your Mum. I have had my husband doing some sort of gym, multi directional exercise classes, now a personal trainer at home. I am positive this has helped keep him strong, even though he had been wheelchair bound for nearly a year. Your Dad will need the speech therapist to help with the decline in speech and his swallowing, sooner rather than later. Nothing will stop the progress, or even slow PSP down, but I'm sure all these things help, if only because you think you are doing something. The OT will help in getting things that can improve your father's life. Our's got S a fancy knife and fork set, kept me from feeding him for a couple of years. It's the little things, that us mere mortals, know nothing about, that can make a world of difference.
Hospices are brilliant! Most have day centre's, which your Dad could go to, they will offer your Mum some support. They might be a good place to go, if you get no luck with the GP, to get help. They are not there for the dying, but to help people with life limiting conditions LIVE.
Try and get your Mum to join us, we are all Carers or sufferers of PSP, we tell it how it is and are here to help each other, along this lonely journey that PSP has put us on. Make no mistake, PSP is evil. You and your family can't NOT do it by yourselves.
Hope you will stay with us, feel free to rant and rave, ask for advice, or just need a shoulder to cry on. We are always here, someone in the world will be logged on.
I am so sorry you are going through this, seemingly all alone! In a 12 step program the first thing is that the person seeking help must step out of denial before they can be "cured" . No one else can fix them or cure them or make them even comfortable if they choose not to believe the source of their problem. let me reiterate, NO ONE can fix them.....unless they admit there is a problem....that no one honey, is you. So since you are not in denial, all you can do, is take care of you. You are driving yourself mad and everyone is allowing you to go there not realizing that you have physical and spiritual needs that are bein drug through the mud because of PSP. "How do I fix me?" you might ask...well how bout these:
1 Accept your dads 'decision' . That's your own denial being broken.
2 If you seem to still be having too much anxiety over this, maybe your own gp and you should have a talk....I hate to admit it but Klonopin has gotten me through some weird anxieties.....I don't take it chronically only when needed...
3. Get involved in stuff that helps you feel successful a. A good exercise program that helps you reduce tension and strengthen you lower back to catch dad '''' and not go over yourself (and by the way, sometimes you gots to just let him go on over! Sorry dad). b. volunteer soemwhere that admit they have needs and would love your help. c. Get some sleep...don't lose sleep over this it won't change anything but your own neurology...try to drive or even fill out that form when exhausted! d. Continue to educate yourself about PSP...you don't have to be in denial it exists. e. Educate your dads gp and anyone else who will be helping dad....If he won't make the appt's maybe his gp will!
4. Finally dear, Breathe deep, relax your shoulders and lean on the greatest comfort there is, God. Even though in all my deep faith I stumble and fall (Spiritual PSP Hahaha) The Lord is still there reaching out for me! And remember too, that we are hear for you....
Good luck, and God Speed
AVB
Trust in the Lord with all thine heart; and lean not on thine own understanding. In all thy ways acknowledge Him, and He shall direct your paths. Proverbs 3:5,6
Do not be anxious about anything , but in every situation, in prayer and petition, with thanksgiving present your requests to God. And the peace of God which surpasses all understanding, shall keep your hearts and minds through Christ Jesus. Philippians 4:6,7
I have read everyone elses posts and they have wonderful ways of helping your dad. Please know that when I say accept your dads decision that does not mean to ignore it. I just want you to be in a place that allows you to stay healthy and at peace. Someone said to introduce this site to the wife...a great idea...dad too....
One thing too that you might do is find the immediate furnishings that could cause harm if fallen on, and move them. Show wife that her trinket shelf etc. is in dire need of a safe place WHEN dad falls. a walk around the house, may help wife make her own decisions as to what to move.....
Like Heady and everyone (even me) have said, go ahead and educate and discuss with your dads gp, your dads diagnosis and what he will need....It's amazing how my husband will listen to others and ignore me.....so get your gp to talk to your dad and create a team that will help dad! again good luck and God speed
Its a tricky one because they are right. There is little help and no cure.
However we have to manage things as best we can. Its difficult doing that because the person with PSP wants to keep on doing things and the carer wants to protect them and it creates problems.
If your mother would use this site it helps counteract the feeling of isolation.
Most of us relate to your descriptions of your dad resisting using aids.
My GP had never heard of the disease but, to his credit , he then read up about it. We rarely see him but when we do he always listens to my view of what is happening.
He should arrange for the neurological team to assess your dad's needs.
Then get in touch with hospice. Agree with Heady. Chris goes once a week to the day centre and loves it.
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What we don't know
My husband has been diagnosed with PSP aged 48
Where to begin.....
Eyesight problems
