Struggling

[audreydrs]

Hi everyone.my name is Audrey and Dale is my partner. Iam retired in NL and Dale lives in Sk. Iam in Sk now and usually spend several months a year in Sk and we use to travel about 2months a year. All that is now changed and I have to spend more time in sk assisting Dale . Iam new to this forum but have found all post informative. My partner was diagnosed last year with PSP and although I was a public health nurse for 30 yrs i did not know or even heard of this disease. Its been a learning experience for me of how this disease progresses so rapidly and this is a frightening journey we are on that has a bad outcome. We are learning together how to manage symptons and maintain mobility and independance for as long as we csn. Every day is a struggle.

[Willow_rob]

Hello Audrey, my name is Rob and I cared for my wife of 49 years as she progressively deteriorated with PSP. With an original prognosis of 2 to 6 months in the end she survived for 2 years. It was hard work and very stressful but we had decided at an early stage that the should die at home. Her deterioration was a series of sudden short declines followed by plateaus in her condition. These declines were normally caused by a urinary tract infection and I became obsessed with her personal hygiene and dipped regular samples. It was this, I believe, which prolonged her life. In the end she decided she had had enough and passed peacefully. I was extremely well supported by our NHS district Nursing team, our social Services and the charities Marie Curie and Hospicecare. My one piece of advice is for you to get help early and do not believe you are superwoman I tried to do everything and ended up safeguarding myself because I was worried I might lose my temper and harm Mary as she became more difficult to manage. All I needed was a weekend away from her (during which I just worried about her) and my batteries were recharged. My thoughts are with you both

[audreydrs in reply to Willow_rob]

Thank you for your response and understanding. as I read all the postings on this site I realize there are a number of people going through this journey. Iam learning every day of different medical aid and support that is needed in order to provide the care my partner requires to maintain his optimal health. Iam also learning to accept his limitations as his decline is happening very fast and be supportive in small accomplishments. Take care

Audrey

[Poppypolo in reply to Willow_rob]

Hi Willow Like audrey i am struggling with my husband who has had p.sp now for four years and it is getting harder. I find the help is very hard to come by yet you seem to have done well with it which part of the country do you live in?

[Willow_rob in reply to Poppypolo]

I live in Exmouth and arranged Mary's care through her GP, Hospicecare who liaised with Marie Curie. I was very lucky to have had a District Matron who had experienced patients with PSP. You have to stamp your feet and remind anyone reluctant to help that you could end up a burden on the NHS if you burn out caring for your partner. Do not accept the Covid excuse of we are too busy. You should apply for NHS continuous Healthcare Funding at the earliest opportunity. It is not means tested and is a nightmare to work through but worth the effort for you patient. I hope this helps

[Poppypolo in reply to Willow_rob]

Thank you for the reply I have not heard of the health care funding what is it all about. I find nobody lets you know what is there for the person you care for as you say with out a fight and money.

[Willow_rob in reply to Poppypolo]

Try Google "NHS Continuous Healthcare Funding" or look up "Kevin's" posts on this website. It will be a struggle to get because of the way that various CCG's interpret the rules. Mary was lucky that we lived within an area who's CCG and staff were helpful. As funds get tighter and priorities change this might change. You really need to do some research and this site is a good starting point.

[LuisRodicioRodicio]

Hi audreydrs!

I'm sorry PSP/CBD/ etc. has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself 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.

I am not a phisicyan.

During the 8,5 years in which we ere living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family I am sending you the notes-document with our experiences and our informations by the private mail of this chat.

Hug and luck.

Luis

[audreydrs in reply to LuisRodicioRodicio]

Thank you for your kinds words. This is an awful disease that robs a person of their ability to function. However we are making changes to our lifestyle as we enter on this journey. Its a hard road to travel butbeing positive anx focusing on the good gets us through each day. Take care and have a blessed Easter. Stay safe

[Mariawatters]

Hi Audreydrs . I have CBD so no experience with PSP but I just wanted to say hi and you will get all the advise you need from the lovely people on this site . So sorry this has touched your life .... stay strong x

[audreydrs in reply to Mariawatters]

Thank you. I always valued people's lived experience. We learn so much from others as to what works/ helps one maynot work for others. Nice to have such knowledge and supportive group.

[AJK2001]

Hi Audrey sorry to have to welcome you to this group but very glad you have found us. I supported & looked after my Mum during the 6 years following her diagnosis. There was alot of compromise on both sides, she moved to be close to me, I gave up work to look after her. We had tears, anger, love & hugs (hugs were so important). We also had great support from our Community Matron and employed a great team of carers (they weren't always great but working with the agency & the carers themselves, we got a great team together). The carers gave me a break ( very important), were better at knowing when to call in the GP or OT for reassessment than I was and gave Mum a change of company, which was also important. Like Rob's wife, Mum was able to fulfill her wish to die peacefully at home surrounded & looked after by people who knew her & cared about her, which to me was the best result I could have wished for. xxx

[audreydrs in reply to AJK2001]

Thank you for your comments. I have zlready made changes to our living arrzngements and spending more time living in Sk, Canada with my partner. He is still able to do his self care with little assistance so Iwill go back go my home province for 2 months ( NL) in June . I will Have support workers to assist Him while Im away and meals and housekeeping provided at our apt complex. My big compromise is I will need to moved here permanently as his condition worsens. One day at a time for now as we progress on this journey.