How do you get over that feeling of being totally powerless to help the one that needs you the most?
Mum is so scared of the unknown yet so brave that she keeps it all in. I hate this dreadful disease that has taken away her dignity. Mum struggles to walk, sore joints and when she forces herself to do so, she is constantly knocking into things. She is forever coughing/choking and does not have the strength to get rid of what ever is there. 'Will my coughing get better Sarah" "no Mum" "it won't get any worse though will it' 'Yes mum, it will'
I detest having to break the news to her, the news no one should have to hear.
Not one profesional has explained the illness to her, we were even advised by her consultant not to google it as its a nasty disease. Are we to go on just wondering? Of course I have googled it and as nasty as it is, I need to know what we are up against if we are to support her..
She now has disposable pants, 'I'm disgusting aren't I" " no mum it's the illness, it's cruel"
We get a wheelchair to make getting around easier, however if she sits for more than an hour she is in so much pain to get out she can hardly move. We change cars to make getting in an out easier, two months later she can hardly get in.
Eating time brings dribbling, choking and spillage. Just getting her to the table is a chore.
"What can I do to help you Sarah" mum will ask, nothing mum is the only response I can give.
Yes we have good times and we have lots of laughs, but at this moment in time when she has a cold that wipes all of her energy, and the worries of it turning into a chest infection, then the good times seem like a distant memory.
All I want is some answers from professionals and for someone to explain to my mum other than me, that she is not disgusting. PSP and what it does to the sole is disgusting.
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Sarah1972
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Oh, Sarah, you have described so eloquently the world we all have to find our way round. I too have found the experts evasive. I think its partly because, as is clear on this site, the path is very varied - although always reaching the same place ! How anyone thinks its better to not know is beyond me !!
Most of what you describe is how my husband has been. He is now bed-bound. However, he hasn't had pain, for which I am thankful.
I'm glad you still have laughs and wish I had good news - but I haven't.
I found the hospice brilliant. If you have one nearby, they usually provide counselling. The counsellor will not know about PSP but will help your mum to deal emotionally with all the indignities that come with it.
You sound a wonderful daughter and your mum is lucky to have you, as I'm sure she knows.
Thank you Jean and I'm so very sorry to hear about your husband. It's a cruel world we live in. Think I'm just having a down day today as it hurts seeing mum unwell aswell as the PSP but I'm sure you understand and have and will endure many down days.
My mum has been my rock and now it's my time to give her what she has given me. My Dad is 83 so finds it a struggle and doesn't quite understand what's going on. It's good to have this site so we can let off steam without close ones knowing how really worried we are and to give support to others when we are feeling stronger.
Hi yes no words can describe it. I am feeling totally deflated, defeated and bereft and I am sorry to say it seems endless and I am the carer! Tomorrow we go to see the consultant J is not eating well and stuff just ooozes out of his mouth. The mess the endless tissues. Every morning our flat looks a mess I just feel ................................. x
Tissues tisues everywhere, that actually made me chuckle. It's the first time that I have been able to relate to someone in this way. The times people ask what is wrong and then thinking they will know what it is, only to have never heard of it. If you try to explain they are totally baffled as it all seems to far fetched to be someone's reality.
Is such a shame that so many people are suffering, yet comforting to have people who understand. I never knew what a difference talking would make until just now when I posted this post.
Good luck at the consultant tomorrow, please let me know how you get on.
I have a meeting with a social worker next week so hoping she can provide some resources.
A truly heartbreaking post Sarah that has made me cry!! We all understand 'everything' your saying (sadly)!! Unfortunately the majority of professionals aren't as good as the dear people on here who from experience can mostly answer anything!! Psp is so rare (thank goodness) but sadly not many professionals have much information, which is why we all rant and rave here! Give your lovely Mum a great big hug and in the meantime, try (I know it's bloody hard) to look after yourself!! Psp is absolutely despicable and destroys everyone's life in the process and I hate it with a vengeance!! How dare our loved ones be dealt this shitty illness? Why? Why? Why? Lots of love to you x
Agree with Jean, if you can, please get the hospice involved!! They can often be a life saver and they do know exactly what to say at each and every step!!!!! X
Firstly, apologies for making you cry it was not my intention. Sadly it won't be the first or last time you cry.
I make sure I hug mum daily and if only for a few seconds, it makes us both feel better.
I have made an appointment with her dr for next week as I can't believe there is nothing that can be done, at least for the pain. I'm currently giving her CBD oil which to my surprise all except her consultant have been supportive of. It has made a huge difference but I worry now what she would be like if we were to stop using it.
She is also seeing the occupational Health weekly for the next 6 weeks so hopefully that will help a little. I understand there is no cure but there must be something the professionals can do to help.
It took so long to get a diagnosis (even then they say it could change ) that now we have one what happens next. No one has told us what to expect or what help she can have there are many people involved but no one seems to tell us anything.
I think you're right when you say there is little knowledge out there and the professionals don't want to tell you "I don't know"
Anyway thank you so much for your kind words, I have finally found some people who do understand and I think this will get me through so I can support my mum the way she so much deserves. Xx
Hi Sarah, no worries, your post was very heart wrenching and I totally understand that!!
My dad has fentanyl patches for pain, ask about those, they do help, with paracetamol too (the paracetamol can be in liquid format)!
The professionals apart from the hospice (in my opinion) are useless! Is that their fault? Yes a lot of the time it is! But I think they just think there is no cure so what can we do? Wrong!! There's lots that can be done to make life easier, does your mum have speech therapy or and physios? Whereabouts are you? I think the help differs in each area, sadly!
You sound like an amazing daughter! Well done you!! X
Thank you so much for your kind words it really does mean a lot and I know mum appreciates it too. Mum used to live in York up until May this year and has since moved to Lowestoft in Suffolk so we can be together and I can give her the support she so desperately needs. Unfortunately that said she has had to start all over again with the medical side of things. She will see Occupational Health once a week for 6 weeks to have physio and has her first appointment with the speech therapist on Friday so hopefully they can help with her swallowing, social worker is coming next Thursday so hopefully she will have some ideas what help is out there. The positive is we have all just moved into a lovely bungalow so she no longer has to struggle with the stairs. It was actually built for a disabled person so is ideal with large walk ways and heightened toilets, with walk in shower room, (that she doesn't like as the floor gets wet ha ha ha.
We have a little dog that she totally adores and he keeps her company when I am at work by sitting on her knee.
Most days we manage really well and have lots of fun whilst we can, never knew a wheelchair could bring so much laughter. Today though was a bad day and expect a lot more will follow, but we will take it in our stride, just as everyone else has to. My brother is coming for the weekend so that will put a smile back on her face. Where abouts are you and do you get much support? Xx
We are in Surrey, my Dad is sadly now in a nursing home, yes we have received support, but I don't feel there's ever enough and you have to fight every step with everyone! That is why I could not have managed without my lovely friends on here for the past 2 years! They've taught me so much and I'm happy to pass on any useful knowledge to anyone that needs it! It's a hard journey (that's an understatement) but somehow we have to get through......im pleased that you all live together in a nice bungalow that is readily adapted. Keep in touch x
Think I will be looking here for my main support, my marriage is failing and to be honest I have new priorities now with my girls and my mum that I really don't have the energy to fight for it anymore. At least everyone on here understands. That really is a big help xx
Sarah I hate PSP so much, it is so sad to see our loved ones suffering every day, George is not in pain, but gets very agitated ever day, so tiring. Sending you a big hug Yvonne xxxx
Thank you Yvonne, I'm lucky with mum as she often gets the giggles which are really exaggerated, she even apologises but I love hearing it. Hope your getting some help xxx
Sarah, it is hard I know. But I feel pleased for you both that you have both a complete understanding of how each of you feels, and that you voice it - while you can!
That is something I regret in my care for my husband. He rarely opened up to me how he felt, keeping all bound up inside - as he learned to do as a child when life was difficult on his own.
I simply accepted this and did not try to question him - he got grumpy - nor did I try to enlighten him as things progressed - I got grumpy!
Therefore we neither of us knew what the other was thinking tho I guess we had an idea after being married 50 years.
I commend both of you for your openness to each other, and your sharing of the way forward together.
We still shared moments together. He always enjoyed a forbidden chocolate and it was a cherished moment! In those shared moments after each day in hospital, PSP/CBD did not intrude. I think it helped us both feel 'normal'.
Keep that love and understanding going! It will say more than words, when words can't/won't come!
Hi Sarah - another Sarah here! My dad has PSP and is very advanced/end stage. By far and away the most helpful people have been the hospice and the neurology nurse - she helps with medication adjustments (the GPs have NO clue) and makes great suggestions to make him more comfortable. My dad is in hospital at the moment (after horrible respite nursing home neglect) and I've found it absolutely STAGGERING how few professionals have even heard of PSP, never mind know anything about it. If I hadn't joined this group and read avidly, I dread to think of the extra suffering my dad may have endured. Whoever said to you 'don't google it' needs to be shot! No one else will advocate for your mum and you need to be as informed as you can be in order to be able to help her when she has no voice. It's a heartbreaking and hard road that no one can prepare you for. I've had to almost shout at the doctors in the hospital on several occasions - one of them was speaking loudly in to dad's face asking him to move to his left, he asked him three times. I had to point out that he has no mobility and isn't deaf. He declared him free of infection as 'he had no temperature'. He , along with tens of other health professionals who've seen my dad, were completely unaware that you can't rely on temperature with PSP . I had to insist on a urine dipstick, and sure enough, my dad had a urine infection. It's scary how little they know. Read everything you can! This group is wonderful and has saved us so much trouble. I'm really sorry about your mum and your situation, but sounds as though there is lots of love - you have to focus on that bit to get through! Sarah x
Sarah, thank you so much for the info it's really useful. Just sorry you only learnt about it through experience with your dad. I find people talking really slow and loud to mum and often quite patronising, telling her how pretty she looks grrrr!!
I think mum is edging towards the end of the middle stage but I so hope I am wrong.
I never realised about the temperature so that is handy to know thank you Sarah and any other advice would be very much appreciated.
Mum has a very kind occupational therapist who has taken the time to read up on mums condition so that is positive. Her consultant however is useless and offers nothing.
What sort of medication do you feel helps your Dad?
Phoned the doctor today and he has prescribed antibiotics so hopefully she will start to feel better soonThank you so much for responding
Hi Sarah, good to meet you under the circumstances.
Your mom sounds more advanced with psp than my husband.
He was incorrectly diagnosed for 4 years.
after an MRI scan in NOV 2016 it was a clear case of psp.
At last it all made sense ... the falls, the tunnel vision eyesight, the mood changes, the disappointment of giving up driving.
Lately it is a mission to get him out.
One person on either side of him lithely carrying him. He doesn't want a wheel chair so I don't know how we are going to convince him.
I am dreading all the possible things he may still go through.
I did it on my Owen for 4 years but now I am tired. 74 next month
I now have a nurse but my Barry preferred me to do it all. He is going through a confused stage at the moment so we walk from room all day.
He has a wonderful sense of humor and he is not unhappy. Just disappointed. He was a long distant sea swimmer and spent years on the sea overseeing my young swimmers.
Of course all that has gone now.
Some days he is awake for 4 hours and other days he is up for 10 hours.
His body is very ridged and bent over and he is a dead weight to lift I recently had back surgery. So all this is getting hard for me.
As you continue with this group you will glean much information and support. Wishing you strength and humor during this time.
Please stay in contact. And Yes ! You are allowed to swear. Try to let go of those pent up emotions. Love to your mom. Althea 💛🙏
Hi everyone. It is bitter sweet reading these comments, that we have loved ones suffering so much but we all offer support and information which is a godsend. At present my mum is in hospital which she has been in for nearly 6 weeks and noone really under stands what is happening including myself. She is now not able to use her legs at all and is totally stiff from her waist down. She is also tearful most of the time but I don't know if it's due to frustration of being in bed for the last 4 weeks, stuck in hospital, depression due to PSP or a mixture if everything. We don't seem to be getting anywhere. She doesn't get physio or OT at all because they say she is so 'ill'. Feel so helpless.
Love to you all in this awful battle. PSP is evil xx
Hi Sarah
I have PSP. Kevin, my husband, is typing for me. He has read all of the posts in this thread to me. I agree so much with what is being said.
You are not useless. You clearly do a lot, but I know it never seems like we can do enough. That is the way of illnesses like PSP. Trying to to do everything and getting it all correct will exhaust you. Get as much support in as you can as early as you can. If you go under everything breaks down. So rule one of being a carer is to care for yourself too.
When I first had a diagnosis I spent a lot of time on this forum reading about it. It helped me enormously. The PSP Association have some good articles online describing it too.
We have relied quite heavily on information on this forum. It has enabled us to ask the right questions with professionals and to get the right equipment and support.
I can understand your mother being frightened. The unknown is frightening. Having information can be grim, but at least I know what to expect.
PSP robs me of dignity more and more. Having someone who recognises that and who says that is the way it is and that it does not change the way they see me really helps.
Its a hard road, but it is do-able. We never thought we could make it this far, but we have. The people here who travelled ahead of us lit the way.
Chris is now bed bound and carers three times a day from the hospice - fast tracked from hospital. All gone downhill.
I just wanted to say that listening to the lovely carers who see to Chris has been a revelation to me. They joke with him, stroke his hair, perform the most intimate tasks so sensitively.
I must also say that I found that at the hospital too. There are more people with PSP here perhaps. [ S.E.London ]
Hi Sarah, I felt just like you, every single day of Steve's journey and I related to all your antidotes. Unfortunately apart from the comments from your Mum. Steve lost his communication skills, quite early on.
Now I am on the other side, I look back in horror and total awe at what I did for him. How was I allowed or able, to lift him up off the floor, after he fell once, whilst being transferred to the commode, after just receiving an enema. The DN had long since left! But I did, it was all part of my "normal" day. I have recently been on holiday with a group of single people. We all had sad tales to tell, but the look on people's faces, when I described some of what we went through, (the extremely sanitised version!!!!) told me, I was far from useless. Jot down on a piece of paper, the things you have had to do for your Mum today, then really read what you have written. I promise, you will be amazed of what you are capable of and what you now consider routine.
We all feel useless, failures, nobody can take that away, our loved one's are only going one way and that in our book is failing. The only thing in life that is guaranteed, is death. Our job, as carers, is to keep our loved ones as comfortable and as happy as is possible. From what I have read in your posts, you are achieving this and more. So instead of beating yourself up, I'd say, open a bottle of wine, celebrate your wonderful new found skills in caring. Raise a glass, put your feet up and take a well deserved rest, oh and by the way, you can put thickener in wine as well, so your Mum can join in!
Dear Sarah, Answers from the professionals is as useless as we are all feeling. I am in contact with my husbands neurologist every day via email. She is one of the top in her profession. She wants to do a study on Barry as he is her fist PSP patient.
She tries hard to answer my questions but doesn't have the answers.
At this point in time I think it's too late to do a study anyway as I don't want to subject him to all that.
He was misdiagnosed 5 years ago and in Nov 2016 was diagnosed with PSP.
According to what I read on this site I would say Barry is in the final stages but how long is the final stage ?
It's all one big PUZZLE and we as carers of our loved ones are battling to put in the pieces.
I pray for strength for you and peace of mind for your precious mom.
Please stay in contact with this group seems all we have is each other.
Firstly thank you to everyone who responded to my post, it really does help through them dark moments..
Anyway, mum is feeling much better and the chest infection has gone and her energy come back. Or at least some of it.
I have just had two weeks off work so have been able to spend lots of quality time together with my mum, my marriage is back on track so things are on the up. So much so I have just popped into the garden for a cheeky ciggy accompanied by a glass of wine.
I have left mother sitting in the kitchen with two punnets of strawberries to chop. She will probably stuff herself with half of them so I make sure I give her plenty to allow enough for the rest of the family. I will then get her to make us all an Eton mess that will make her feel both useful and occupied, best bit being she doesn't have to worry what it looks like, I just hope she leaves enough strawberries to go round. Oh and bought two boxes of meringue as she has rather a sweet tooth haha. I love that woman to bits and love seeing her happy and laughing. Chocolate Eclaire are the funniest, she doesn't half make some strange shapes with them.
Back to work next week so it won't be long before her anxiety rises so got to make the most of it
Just hope your all having a positive day too, if not stay strong, scream cry whatever helps. Just please remember that the feeling will pass and things will look up again. Maybe just for a few minutes but they will come.
Thank you again for all the wonderful support you have shown me, kindest regards, a much more positive Sarah xxx
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and I think this will get me through so I can support my mum the way she so much deserves. Xx
Feel so guilty for how I'm feeling
Feeling so sad.
Will this poem help? I hope so. I couldn't say what I'm feeling better having lost my dear wife May 4, 2014
I am so tired...
