Hi,
As my Mum approaches the end of journey with PSP she wants to prepare her end of life care while she can just about communicate.
What did you discuss with your loved ones about end of life care? Did you involve any professionals in advanced care planning and preparing for end of life care? Do you receive any palliative care from a hospice or someone else, and if so what does that involve and how did you get it?
Thank you everyone
hi jkc
so sorry you are having to write this at such a young age
unfortunately or fortunately I never did discuss this with my husband as he couldn’t communicate and I didn’t know how he was feeling about it
My husband passed away on 6th December 2022 I cared for him at home
We never spoke about dying only about living that’s the way I chose to deal with it
Obviously your mum doesn’t want to put the burden on you if that’s what she wants then I suggest you just help her with it
It’s good she can communicate let her have her say and support her there are people that can help you with it I’m sure try not to do it alone it’s heartbreaking for you to touch on this with your mum.
I suggest do it and then just go forward as best you can
Hugs to you both
my poor brave husband lasted 10 years with this awful disease he just kept going he wanted to be with his family forever x
Justkeepclimbing, contact the PSP Association helpline. They will be able to give you all the information you need. You should be registered with them anyway as they run local support groups and there nay be one near you. My wife and I sorted wills, Power of Attorney and funeral arrangements (prepaid with order of service for both of us for ease later) as soon as diagnosed when she could make decisions. Through our GP we initiated carer help and then a proper package through social services (may be more difficult these days due to increased demand). Make sure you get the Attendance Allowance or its recent replacement (not income related) 🙏🙏
Hi justkeepclimbing!
I agree with Dance1955 and David750.
By internal mail I send you the most recent version of a document where I have compiled the symptoms that can appear on the PSP trip. Includes the final 6 months.
In our case, we decided that the patient would be cared for in her house until 1 day before her death. For this, it was necessary to hire trained people who cover 24 hours, 7 days a week, plus another person 4 hours from Monday to Friday. In addition, the support of a doctor or a nurse, on demand, the last 3 months. All of them coordinated by a main caregiver.
A big hug, luck and courage.
Luis
My advice would be to contact your local hospice, many include neurological disases in the illnesses they take in their wonderful care.Their advice and guidance with all sorts of decisions will be invaluable to you as a family.
Hold her tight.
Thank you for your reply, we have been in contact with the hospice before but that stopped before covid, so I will try to reinitiate that and see what advice they have
I would also recommend Hospice care. Not sure if you are in the US or which state, but hospice can go for quite a while (a year+) so good to get involved in to find what is offered and timeline they can give
So sorry you are having to deal with this.
Our GP was brilliant, he was so supportive and had put an advanced medical directive in place, so that our community nurses and/or any paramedics attending my husband knew what he wanted. This included a DNAR and detailed other relevant information.
We had completed Lasting Power of Attorneys some time ago. He was adamant he didn't want a PEG and he wanted to stay at home, which fortunately he was able to do. He died peacefully at Christmas 2019, four and a half years after diagnosis.
I do hope this and earlier advice helps.
Keep on keeping on.
Thank you for your reply, I was thinking of getting in contact with the GP as we don't have an advanced medical directive in place that I know of, so I will do this
Hi, we have done an Advance Decision ( living will) Plan earlier on, whilst my husband was still able to talk and made his wishes known. You can contact Compassion in Dying for a form and we did it with a good family friend who was able to ask the questions without being too emotionally involved. We then give the GP a copy and keep a copy ourselves. My husband is now not able to talk, but we know his wishes when his condition worsens, so does his GP. Hope this helps. All the best to you both.
My husband was keen to discuss everything before it was too late. He attended a group day at the local hospice once a week. This gave me some respite. They were wonderful. They organised a meeting about talking through all our concerns. At the end they were the palliative care team as I nursed him at home - as we both wanted. He was clear that he didn't want a feeding tube and this was a help when these decisions had to be made .It's important to know her views as it helps when you become their voice.
Wishing you strength in the future. Love Jean xxx
Thank you Jean for your reply, this is the kind of thing I was wondering about. We were in contact with the hospice but this stopped before covid so I think I will try to reinitiate this and see what advice they have for end of life care. Best wishes xxx
We were very lucky and our Community Matron carried out this converstaion with Mum, whilst I was present and put together an Advanced Decision plan & DNR. We didn't have a Health Power of Attorney which was an over sight but we did find that all the health professionals we dealt with honoured the Advanced Decision, once they were made aware of it's contents.
It was the most difficult conversation I have ever had but it was well worth it, as even though I was very close to Mum and would have probably made the same decisions without the AD, it took away that element of questioning about whether you are doing what the person would wish. Mum was very clear, she didn't want a PEG, she didn't want life extending treatment, she wanted to stay at home if she could and which she did with the support of a great team of carers, myself and a very understanding Community Matron, who organised end of life drugs & a GP visit near the end to make the very end as less stressful as possible.
Mum had also written down the readings & music she wanted for her funeral, which was another big help,
With regard help from the hospice, Mum went to their day centre once a week for a few months which she enjoyed but there wasn't sufficient places to be able to continue to go. We never looked into respite, relying on 4 carer visits a day and myself spending the afternoons with mum. This meant she was tired by the evening and slept well, so wasn't getting up and as I said we managed end of life at home, which having been through hospital deaths, was a much better experience for Mum & myself.
We engaged a wonderful palliative care practitioner about halfway through our PSP journey. She took over my husband's primary care once the neurologist could no longer help and I found her holistic approach really helpful. Sometimes symptoms can be masked and I know hubby was far more comfortable after she took over, as was I.
She also helped us have that tough end of life conversation around what medical interventions my hubby would want. It was something I was dreading and know I couldn't have done it on my own, but she was very gentle but knew what questions to ask so he could clearly indicate (thumbs up/thumbs down) what his wishes were.
Hubby stayed at home until he passed. Once he became bedbound and stopped eating and drinking, the palliative care doctor visited him at home every day and administered a syringe driver to keep him calm and pain free. She also looked after me during those last few weeks by answering all my questions and keeping me calm and focused.
It might be tough to think about these things, but they do really give you and your loved one peace of mind when the time comes.
Good luck! Big hugs
when my husband was diagnosed, we discussed advanced directives and had the documents prepared to include what headed and did not want. He did not want a feeding tube. It is good to know what they want when they can still express their preferences. We also prepaid for his funeral including his wishes. He also made the arrangements to donate his brain for definitive diagnosis and research. He had palliative care for 2 years. His neurologist recommended starting hospice about 6 months before he passed away. He stayed at home with the help of some wonderful caregivers. We always talked openly and honestly about his disease.
Warm hugs!
Thank you for your reply, I'm very sorry to hear about your husband. I think we need to discuss advanced directives somehow, although we've aldready passed some as Mum has had a PEG for quite a long time now and we use it everyday. Also funeral arrangements, and I would love to discuss brain donation with her (of course her decision) although I don't know how you actually donate. Who provided palliative care if you don't mind me asking? And were the advanced directives just a conversation between you and him or with someone's assistance? Thank you very much and best wishes
You can check with CurePSP about brain donation. Another possibility is checking with the local medical college. His neurologist referred us to NPalliative Care in northern Michigan. We discussed our advanced directives together, but our attorney also had some recommendations based on Ray’s wishes. I will tell you, having these hard discussions and making decisions now will make things easier in the future. I am comfortable that I honored Ray’s final wishes.
You might try compassionate friends also
it’s so important to get their wishes recorded whilst they are able to communicate. My husband was in denial for a good while but my hospice councillor advised to discuss his wishes in side by side situation in an informal situation (eg on a walk, sitting on a bench with a view) This enabled me to discuss his wishes and the hospice then helped to put together his ‘end of life wishes’ in a recorded document that the hospice nurse and consultant signed, making it official. It is essential to do this before it’s too late, they need to be able to communicate and understood by the professionals recording their wishes. Their wishes can be overruled my the medical profession but it is very rare as it could end as a prosecution against them. Hope this helps.
Advanced/end of life stage
End of life care plan - cbd
Question for UK PSP patients and care givers
End of life
