My partner was diagnosed with psp March 24 but had been living well with this condition for several years before that. Eating well and keeping a consistent routine had kept things relatively stable for sometime. He then tripped and fell en route to an eye appointment in January 25 . At this point paramedics checked him over in the ambulance and sent him home with advice should his condition worsen.
3 weeks later he was admitted at midnight by ambulance in an emergency, in pain and suddenly unable to walk. A &E was so ill equipped to look after him. Diagnosed with a hip fracture he had to wait in significant pain for over 50 hours before surgery. He became delirious and unable to communicate.Thankfully we had power of attorney in place which became essential at this point so that I could give consent to surgery. The surgeon advised that there was an increased risk because of psp.
He came through the partial hip replacement operation . Some speech seemed to return the following day and he began eating soft food .
He was moved to a ward with three other patients. It was noisy and challenging due to dementia issues. It was stressful for him. Staff changed daily. Medics kept asking me what his baseline was. They kept looking for something reversible that they could treat. Various brain scans came back clear.
I told them that a consultant neurologist was involved and suggested that they contact him for his expertise and input. This didn't happen.
I spoke to his community neurology nurse but she could not get involved while he was in an acute hospital.
At the end of 2 weeks he developed a chest infection. I kept asking for antibiotics but this didn't happen either.
I pushed for them to start nasal tube Feeding when he became unable to eat . This was attempted but nursing staff were inexperienced and unconfident in managing this which led to delays in starting this.
It just seemed like the window of hope was closing on us . He continued to battle as did I. He wanted to live.
I questioned whether he was on the right ward? The orthopaedic issue seemed minor now compared to the other medical issues. Medics seemed out of their depth. Two days before he died, a consultant who I had not seen before, told me they didn't think he would come back from this.
I wanted him to have privacy and dignity and I knew he would not want to die on that ward.
At my request I asked for palliative care team to get involved. They liaised with the local hospice and my partner spent his last 36 hours in a more peaceful and private place . How did we get here? Everything happened so fast. Life has been turned upside down.
The hospital experience was so traumatic which has made grieving for my partner of 30 years so complicated.
I've always supported the NHS but this experience has been frightening.
I appreciate this is not an easy read so thank you for reading it.
Written by
Freeya
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I’m sorry for your loss, unfortunately this illness ends up with the carers and family members end having to be an expert when it comes to all services including the NHS. I’ve spent four years battling for everything for Mum.
Hi Freeya, Firstly may I offer my deepest condolences for your loss.
I'm afraid your experience with the NHS is not isolated, I spent the last 5 weeks of my wifes life living in hospital with her, caring for her and trying to convince consultants what was needed for her to stop her deteriorating; I was eventually able to prove this to the consultant but it was too late, a minor chest infection escalated into her PSP symptoms becoming so severe she could not breath for herself.
This experience for me made losing her far harder to come to terms with as I felt I had failed her, and although I know I couldn't have done anymore it still hurts; I have managed mostly to put that behind me and take some comfort in her not having to spend another couple of years suffering from the increasing symptoms that PSP brings. In a few weeks it will be a year since she passed away.
Please be kind to yourself, there should be no guilt, if anything it is frustration at a system that doesn't always work and the arrogance of some consultants.
A good consultant has to know everything, a bad consultant is one who thinks he does.
Oh Freeya, I am sorry for your loss. I can identify with almost everything you have written. The end at the hospital with my PSP person was so similar.
In a way I am glad that this disease is so rare, I don't want healthcare workers to be familiar with it because I was as few as possible (actually zero!) patients, families, carers and friends to have to experience it. But I do also desperately want healthcare workers to know this disease, to know the complexities, to know what to say and what to do. I was so tired of the explaining, over and over again, every fall, every staff change, every new hospital (there were many).
One visit for my PSP person to an orthopedic ward for 3 weeks broke my heart, nearly broke my spirit. I don't blame the staff, I can still see the ward nurse manager in my mind, she was broken herself from a hospital system that was clearly letting her down too.
There is a certain PTSD to it. You will know that yourself. My advise is don't dwell on it. Don't give the disease anymore time that it has already taken from your family.
this was very hard to read but I am grateful you shared it as it will benefit others like me. Thank you and may you look back on the rest of the 30 years.
My husband has CBD and last March he was taken to hospital after becoming very confused, difficulty breathing and chest pains.
He spent 24 hours lying in A&E, wetting himself several times and drenched up his bback. I stripped the bed, dumped it on the floor and tried to wipe the bed dry. He was eventually taken up to a ward and as with your experience no one understands these conditions. Thankfully he was able to return home after a week after being treated for an infection.
He has since signed an Advanced Decision form that he doesn't want to be tube fed, ventilated, etc only pain control, should a life threatening situation occur.
Wishing you all the best as you walk these difficult days ahead xx
Freeya, I am so sorry for your loss and that the care system let you down at a time when you needed it the most.
Much of what you say resonates with my experience of recently losing my husband to PSP. After a couple of hospital admissions I vowed to try to keep him out of the setting as much as possible and got the palliative care team involved, something I wish I’d done earlier. There was widespread ignorance about PSP, and, like you, I was constantly having to try to explain the complexities of the disease to an ever changing and overworked staff. He found being in hospital both disorientating and upsetting and his lack of voice meant that he struggled to communicate needs in a noisy environment. He deteriorated significantly after each admission.
I agree there is a certain PTSD to this. I know I frequently relive the experience and wonder if I could have done better, even though I tell myself we did the best we could in the face of this dreadful disease. Meanwhile, I live in hope that the rawness will soften in time and I try not to dwell on it too much, easier said than done at times I know. I tell myself this is a normal part of grieving that’s been exacerbated by losing someone to such an insidious, complex condition that’s poorly understood by an ailing system. 💔
So so sorry for your loss. How quickly things deteriorated from the time your husband fell, then with the Dr's not having the knowledge on PSP, it really was an appalling situation to be in.I cannot imagine how you are feeling right now, how life can change so quickly. This awful disease just takes hold and takes everything.
Im really at a loss at what to say, you and your husband went through so much, my husband was diagnosed with CBD December 24, having mild symptoms for for 2 years. Im always very aware about him falling as I hear it so much of this happening with this condition. Medical professionals all need to be made more aware of the symptons and outcomes of this desease so they can make better choices in treatment of any kind to help with more of an understanding.
May you find peace in your memory's, strength from family and friends and support from all.
Hi Freya, so sorry to hear of your loss. Especially in such appalling circumstances
. I know you will be hurting so much at the moment. But in your heart deep down, you know you tried as hard as possible to get your partner the right treatment. Sadly there isn’t any understanding of PSP generally.
May your beloved, for ever rest in peace.
Sending you a hug also. My heart goes out to you.. 💜
At the end of the path marked by PSP, caregivers, and especially the primary caregiver, feel uneasy thinking about the inevitable mistakes made and thinking about how things could have been done better.
These thoughts are common among the caregivers I know.
I propose four ideas:
- Admit that the void left by the person who has left cannot be filled by anything or anyone. We have to learn to live with it.
- Given the ignorance and lack of medical solutions regarding PSP, CBD, etc., the caregivers have done a great job informing themselves as best they could and making decisions about a disease in which one learns on the fly, without a safety net.
- Once the end is reached, the caregiver should consider that with the information and help available, they have done everything possible and should not feel guilty about anything, even the mistakes and moments when the situation has overwhelmed us. We are human and imperfect. Those who have done what was in their power and with the knowledge they have been able to acquire are not obligated to do more.
- Finally, there is life ahead. Open doors and windows to affection, solidarity, hobbies, and dreams so they can once again take center stage and fill as many happy hours as possible.
Very well said Luis. I fully agree with your 4 ideas. This is very much the kind of thinking that is helping me come to terms with the large void in my life ❤️🩹.
🎶 My social smile comes out again
Glass in hand, I've a word for one and all
But deep inside I'm crying just like a baby
I'm all grown up but I never learnt how to crawl 🎶
Thank you Luis for your positivity. I know your comments are so valid. Grief is raw right now but yes, friends, family and strangers are helping me navigate each day.
Such fine words and advice. I have not seen you suggest those four ideas before - you definitely need to repeat them for all of us frequently. (And to think Engish is not your first language - either you are now fluent or Google Translate is getting very good 😂!)
I am so sorry Freya what an absolutely awful experience. I do hope that with time this final memory will lessen and you happier memories will rightly come to the forefront.
I am so sorry that your experience was so poor. It seems to be a lottery across the country as to whether you get good care on the NHS. People with PSP seem to cause confusion because very few medics are familiar with it and it seems to make them stand back from doing the essential things and the patient deteriorates while they are pondering.
My husband was relatively lucky really because when he got worse the GP referred him straight to the neurological ward which could not happen your case because of your partner's hip. My husband had had a similar experience the year before when he broke his hip and could not walk and barely communicate. He did come through it but only because his condition was not so bad at that stage. I was tearing my hair out to get them to feed him properly as he was gluten free and was going up three times a day with food.
You obviously did everything that was humanly possible for your partner and managed to enable him to have a peaceful death. Remember that as you grieve. Cathyx
I am so sorry for your loss and the trauma surrounding it. There is rarely a good end for these diseases - people can spend months if not years entirely dependent on others with no means of communication and then slip away over days and days of uncertainty or they can be taken from you in a blur of trauma. You have done what you can and they are now at peace and released from this disease. You probably are not ready for this yet but you may want to consider raising a complaint with the hospital.
Thank you for your message. I will be making a formal complaint with the hospital. There were so many issues that they need to address. Things need to change
I’m so sorry to hear. My Dad had a similar journey, except he has now been in hospital almost constantly for 6 months. The staff there aren’t equipped either and he is depressed and miserable. He has regular episodes of ‘rocket chair’ and they use inappropriate methods to restrain him when they are too busy. I’m very sorry for your loss but well done pushing for a more peaceful end. I hope that brings you some condolence.
I'm so sorry to hear your story but glad you are able to share it. It make me feel thankful that my dad has received the care he did 2 weeks ago at the hospital and to be able to be there and advocate for him. You never realize how much a relatively minor thing for a normal person can take so much from someone with a neurological disorder as I am now learning. My father was barely able to respond and not able to move when I took him into the ER. I was fortunate that the hospital staff were running every test and scan, and re testing to find the cause of his fever, even though they admitted to not being aware of his condition. At one point they told me it was possibly stage 4 metastatic cancer. They were ready to accept that preliminary finding and talked about end of life care. Through all the tears I told them to keep testing until we had definitive answers and so glad I did as it turned into only minor things and not cancer. He is on the road to recovery but I wonder if he will ever get back to the piont he was 3 weeks ago or have some of those skills been lost. We as caregivers are their biggest advocates but can only do so much. Try to take solice in knowing you did everything you could for him and gave him peace in his final hours.
Dear Freeya, your post made tough reading. What a terrible thing to have happened on top of all the difficulties that this disease brings. My sincere condolences. 💟
Thank you Leosta I deliberated for some time whether to post anything but felt I could not just let it go without a word given the experience we had. I hope you are ok. Take carex
I am so sorry. Most of us have much longer to come to terms with the disease and the way it is heading. Sadly I think when a PSP sufferer goes into hospital, it almost always has bad consequences. Luis's words above are as good as any I have seen here.
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