Hello. My name is Jayne and my husband is Craig, last year Feb 2018 at the age of 57 he was diagnosed with PSP. I knew something was wrong several months before as he had a complete change of personality, some falls but not serious. Since his diagnosis a lot of other symptoms have happened so quickly. It is almost every week he is getting a little worse. Unable to walk, dress, get to the toilet or even put toothpaste on his brush. His vision is dreadful and his eye droops, he can hardly speak, he chokes when eating and drinking. He barely sleeps and as I’m writing this at 11.48 pm, we went to bed at 10.50 and I have already been into him 7 times as he can’t get comfortable in bed and can’t move himself, Tuesday was a record and 17 times during the night I was up. We have a Parkinson’s nurse and our home adapted and we have a vertical lift but still feel there is very little support. I work full time but I am lucky enough to work from home, carers were suggested and I am considering them but as Craig is so unpredictable i.e getting up and when he needs the toilet I’m not sure how they can help at this point. I do not wish to offend or upse anyone but I I feel if he had been diagnosed with cancer it would be easier, only in the respect that we would know what we were dealing with and treatment available, with this awful disease you never know what’s next and when
Thank you in advance for reading this and look for any advice to help us through this
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Welcome to the site. You may need a full time carer since you work f/t even if it is from home. Unfortunately caring for your husband probably won't get easier as time goes on. It sounds like you have pretty decent support with the nurse and getting home adapted. I'd talk to his doctor or a social worker to see what type of aid you can get.
Thank you Ron. I am going to “road test “ carers just unsure how they will fit round us as where I live you are given a set time they come in. We will give it a go. I manage for now 😴😴
Hi, I am so sorry that your husband has been diagnosed with PSP. What you feel, what you write, none of it would offend or upset those of us on this site. We have all been there or currently are there.
I would urge you to get acquainted with the shares on different topics on this site. There is a SEARCH BAR on the upper right hand side of this page. In addition, if you want to know more on those writing, click on the circle next to the name. It will take you to the page of their past posts and stats.
I live in the USA, Los Angeles, CAlif. In many ways you are fortunate to be located in the UK. Your medical system and assistance (in many ways) I find superior to ours in the USA. Unless one in the USA has bought Long Term Care Insurance (LTC) there is no free $$$$ assistance. I would urge you to get all the help you can, so that you have the time and patience to be a loving wife rather than mostly the caretaker.
PSP is a difficult brain disease both for the afflicted and for the caretaker, and presently there is no known cause or cure.
I was the caretaker to my son whose first symptoms appeared March, 2014. He managed well until January, 2017, when after a 2nd bout of aspiration pneumonia things accelerated. There are some on this site who have cared for loved ones with PSP for more than 6 years and others for only 3.
Others will respond to your post, and those from the UK can guide you to seeking govt help. The rest of us (USA, Canada, New Zealand, etc) can offer assistance with how we responded to the struggles and challenges of PSP symptoms. I am glad you found your way to this site.
If you click on the circle next to my name you will be led to my posts....on the bottom is my first post PARKINSON'S TO PSP, the story of my son.
Thank you so much. I will take a look. Emotionally it’s difficult and being in the UK we do have a great health system so financially it’s not so much of a worry, so sad when you have to worry about money in what are already stressful times ❤️
Your post is a very typical rant from the heart about dealing with PSP! You have found a place where we all understand the trauma and frustration you are faced with.
There are many on this site who are, or have been, in your situation and will be able to give you support, help, and solace as you take this journey with your husband.
My husband suffeed from CBD, and also deteriorated quickly without any obvious reason that doctors could diagnose. So I understand you completely! My husband was in his 70s when he became less able. Your husband is very young, but there are others here of his age, and older, and sadly, some who are younger.
It helps to know what country you are in. Many who post here are in UK, USA, Canada and all over the rest of the world. I live in New Zealand. Local knowledge is already available on old posts about CHC funding in UK, and experiences dealing with patients at home and in care. You can use the search tool at top of this page.
You will find it helpful to have caregivers coming to help, and they will be needed at some point. You can then relax a bit and be more of a wife for your husband.
If you have not done so already, make sure you have powers of attorney in place, and get to understand your husband's feeling and wishes about end of life care while you can have a conversation with him. I know it is not easy!
I too have thought of comparison with a cancer diagnosis! Here we all understand what it means to have PSP, but we also know no-one seems to travel the same journey!
If you're in the UK get your district nursing team to refer you to Marie Curie who have supported my wife Mary who has PSP. Even one night a week enables me to recharge. They would most likely assess Craig as "changing" and support you. Also, if his symptoms have advanced so quickly the Parkinson's nurse should refer him for fast tracked CHC funding and a care package be put in place. Above all else you need to look after yourself. Rob
Maggie our nurse tells me that and that I’m not superwoman lol. We are waiting for the referral to do to Marie Curie one day a week and she is working with us to help me decide on the care package.
I can relate to what you are saying so much, my dear husband was diagnosed with PSP in September last year and sadly passed away on Boxing Day. It is a cruel condition and like you describe his symptoms got worse very quickly. He was in hospital from July to Dec 17th and I fought long and hard to get funding for 24 hour care at home which we did get but only had 10 days in the end. Definitely get carers in as they can deal with the nights so you can get some sleep and then enjoy time as his wife rather than carer but it is hard having people in the house 24/7. My husband was 58 and we even had to adapt our wedding plans and marry in hospital because of bloody PSP and had to cancel our honeymoon. I wish you well on your PSP journey and this sight is amazing for the support and understanding that it offers, we are all here for you
Thank you Sarah. I have said to our nurse that the times that the carers would be useful would be during the night but she said that was not available. How long do you think your husband had PSP before the diagnosis?
Thank you, I feel better already for posting on here
It’s really hard to be sure as there were issues and he had a brain operation in Nov 2017 which was to remove a cyst and we thought the cyst was causing eye problems, dizziness and light head problems. However the surgery didn’t make much difference so I think it was probably the PSP causing those issues. To be honest he never really got totally well following that op. I would definitely push for CHC funding, Steve had a tracheostomy from July last year right up to when he passed away so that was an added complication in his care but it’s the exhaustion that you need help with. I am still struggling with exhaustion now as it takes a long time to get back to normal or should I say a new normal as I don’t know what normal is anymore! I wish you well and do stay in touch, where abouts are you in the U.K.? I am in Birmingham
I’m in Birmingham Sarah. Well Solihull but the same place lol. On the back of a lot of the comments and advice I will start looking into things. Our nurse Maggie has referred us to the Narie Curie, just waiting but she said they will be a big help. Thank you Sarah x
I can’t believe that you are so close I am so close to Solihull. I am at work now but will message you again and if you would like we can try and meet up sometime
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
By private mail I´ll send you our particular experiences on PSP-RS that we hope you can find useful.
I am not a phisicyan. The information I´m sending you by private mail is a compilation of our own experiences and of the people who participate in the PSP chat. The information is made with good will and my best technical criteria that I have been able to contribute, thinking above all in guiding caregivers who have exception made of PSP associations chats and support to face this unknown disease.
So sorry to hear you've the need to join us. The advice you will find here is invaluable as this frightful disease varies from patient to patient. I can't add to the above advice but know tgat we are all there for you.
My goodness your husband your husband is so young. My husband died from this terrible illness 3 weeks ago, he was in hospital for the past 11 months of it. He spent the last 2 weeks in bed, which he never done up until then as he was too weak. I know exactly what you are saying about the (cancer), I often said this myself. Poor you, I feel for you both, it's not a great journey ahead. Bless you both. X
I am sad to hear about your husband. How long ago was he diagnosed before you lost him x
Welcome.
I am asked if I am going to get help. My reply is how will I know they can handle him? I am so attuned to his every shift, lunge and freeze. Anyone walking in her cold would have to have had prior experience working with this disease to be able to be of any use.
I also thought cancer would be easier to deal with. Told one potential care giver I thought people who got cancer were lucky. It can be treated. I had two types of cancer which only require cutting them out.
It’s not that I don’t want help but I’m not sure how they would fit round him. Some mornings he wants to get up at 6am and they go back to bed an hour later, other times he does not get up till 11. It’s difficult . I know I can’t carry on the way we are but I feel as his wife I should be caring for him, it’s a guilt thing I think xx
Larry’s current wake up time is 3am. I take him downstairs put the TV on and go back to bed to maybe sleep sometimes. Today I woke at 2 and didn’t go back to sleep anticipating him waking up. I got him up at 3:45. He was awake. I understand the how would help work with this kind of schedule.
You shouldn’t feel guilty. You are doing the best you can. That’s what I tell Larry. I’m doing the best I can.
First, I am sorry for all you are experiencing. My mom was diagnosed 3 years ago. It is quite unsettling at first when a loved one is diagnosed. The sleep disruption is a real test and I completely understand what you meant by the cancer comment. Completely.
Advice? Take good care of yourself as you take care of your husband's needs. Establish routines, especially around things he enjoys (TV shows, books he like to read, but can be read to him, etc) One thing I had to get used to was realizing that my mom was still "all there" mentally. It is a curse some days because she knows that her body is betraying her, but more often than not, it is a blessing. She still laughs heartily at jokes or funny things on TV. Take things a day at a time - be kind to yourself.
Thank you. He does have a chuckle at things and our 2 beautiful grandchildren make him smile. I keep having to remind myself it’s not his fault when he has called me for the 5th, 6th time during the night. xxx
It's a very very tough journey, for both of you, my husband was that diagnosed 3yrs in July, but looking back, had it for at least 5yrs. Get as much help as you can, as you will need it. Xxx
Hello Jayne. I am Eileen. I am sorry to hear your story. The early part sounds so familiar. Our diagnosis came November last year. Bill however is 85 now but was such a fit 83 year old passed for much younger. Bill’s deterioration seems slower but when I think back a few months I see so many changes. I am taking us to a caravan in Dorset for a week and I don’t know whether to look forward or dread. You echoed my thoughts when you said at least with a cancer diagnosis you know more of what to expect. Thoughts with you xx
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