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Palliative care support

User
Posted 08 Feb 2023 at 23:09

My husband was diagnosed in 2019. He has now run out of treatment options and has moved to palliative care. Just hoping to connect with anyone in a similar situation as feel there’s very little support or preperation for me

User
Posted 09 Feb 2023 at 03:11

I’ve just been put on Palliative Care too, but I continue having Zoladex every 12 weeks, Dexamethasone, Adcal-D3, Stilboestrol and Ibandronic acid pills .

I have had 17 years of a rollercoaster PCa life.

I had a phone call from our local Hospice yesterday, but like you, it was a bit vague. I have printed off the information booklet that Marie Curie produce.

 

chris.

Edited by member 09 Feb 2023 at 03:40  | Reason: Just thoughts.

User
Posted 09 Feb 2023 at 11:42

Hi Jandy, sorry to read this. There are a number of things that you can check:
- where is your nearest Maggie's Centre? Often based within the grounds of or near to a hospital, they are havens of peace and support for patients but also for relatives
- you need to know whether palliative care in your area is managed by a hospital team, Macmillan or a local hospice
- if a hospital team, they may not have much to offer partners or family members but tend to be excellent at the practicalities, pain management, home equipment, etc
- Macmillan or your local hospice usually have counsellors and / or social workers who can offer you support & advice
- the counsellor / volunteer / social worker should also be able to help you have the very difficult conversations - where would he like to die, how you feel about that, as well as any financial arrangements that need to be reviewed / updated (such as wills, accounts, home contracts like electricity, water)
- many hospices offer wellbeing programmes, holistic therapies, cancer-safe massage, day centre support, pain clinic as well as drop in services for partners / families
- if not already done so, apply for Attendance Allowance (as your husband is over retirement age) on the terminal illness special rules - you need a medical professional to complete form DS1500. Depending on your age and income, you may also be entitled to Carer's Allowance. PIP / AA is not means tested and its purpose is to help you pay for things that will make your lives easier - equipment for the home, night carers / domiciliary care if he wants to remain at home to the end, etc. Macmillan or the local hospice should be able to help you to apply
- the GP is usually involved in palliative care so phone the GP practice and ask whether they have any support for wives / partners

Edited by member 09 Feb 2023 at 11:45  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Feb 2024 at 15:04

Hello 

My dad was told he’d reached the end of the treatment road just over a month ago. His PSA is doubling every couple of months, he’s 84 but still lives on his own. Consultant had put him on a dose of steroids as a last role of the dice - but they did nothing. He is still having a hormone injection every couple of months. 

His CT scan shows para-aortic and pelvic nodes.

Most recent PSA was 30, probably 40+ by now

Consultant gave us no time-line but said he would more than likely be okay for a while then deteriorate rapidly.

Macmillan nurses have made contact and are visiting him. 

We've applied for the Attendance Allowance but not had a decision yet.

I helped support my dad through my mums 7yr dementia journey until she passed away in 2020, he was immediately diagnosed at that point - he’d kept his prostate issues secret for years so he could look after her.

It’s just so sad 😞 

 

Edited by member 13 Feb 2024 at 15:22  | Reason: Update on PSA

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User
Posted 09 Feb 2023 at 03:11

I’ve just been put on Palliative Care too, but I continue having Zoladex every 12 weeks, Dexamethasone, Adcal-D3, Stilboestrol and Ibandronic acid pills .

I have had 17 years of a rollercoaster PCa life.

I had a phone call from our local Hospice yesterday, but like you, it was a bit vague. I have printed off the information booklet that Marie Curie produce.

 

chris.

Edited by member 09 Feb 2023 at 03:40  | Reason: Just thoughts.

User
Posted 09 Feb 2023 at 11:42

Hi Jandy, sorry to read this. There are a number of things that you can check:
- where is your nearest Maggie's Centre? Often based within the grounds of or near to a hospital, they are havens of peace and support for patients but also for relatives
- you need to know whether palliative care in your area is managed by a hospital team, Macmillan or a local hospice
- if a hospital team, they may not have much to offer partners or family members but tend to be excellent at the practicalities, pain management, home equipment, etc
- Macmillan or your local hospice usually have counsellors and / or social workers who can offer you support & advice
- the counsellor / volunteer / social worker should also be able to help you have the very difficult conversations - where would he like to die, how you feel about that, as well as any financial arrangements that need to be reviewed / updated (such as wills, accounts, home contracts like electricity, water)
- many hospices offer wellbeing programmes, holistic therapies, cancer-safe massage, day centre support, pain clinic as well as drop in services for partners / families
- if not already done so, apply for Attendance Allowance (as your husband is over retirement age) on the terminal illness special rules - you need a medical professional to complete form DS1500. Depending on your age and income, you may also be entitled to Carer's Allowance. PIP / AA is not means tested and its purpose is to help you pay for things that will make your lives easier - equipment for the home, night carers / domiciliary care if he wants to remain at home to the end, etc. Macmillan or the local hospice should be able to help you to apply
- the GP is usually involved in palliative care so phone the GP practice and ask whether they have any support for wives / partners

Edited by member 09 Feb 2023 at 11:45  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Feb 2024 at 15:04

Hello 

My dad was told he’d reached the end of the treatment road just over a month ago. His PSA is doubling every couple of months, he’s 84 but still lives on his own. Consultant had put him on a dose of steroids as a last role of the dice - but they did nothing. He is still having a hormone injection every couple of months. 

His CT scan shows para-aortic and pelvic nodes.

Most recent PSA was 30, probably 40+ by now

Consultant gave us no time-line but said he would more than likely be okay for a while then deteriorate rapidly.

Macmillan nurses have made contact and are visiting him. 

We've applied for the Attendance Allowance but not had a decision yet.

I helped support my dad through my mums 7yr dementia journey until she passed away in 2020, he was immediately diagnosed at that point - he’d kept his prostate issues secret for years so he could look after her.

It’s just so sad 😞 

 

Edited by member 13 Feb 2024 at 15:22  | Reason: Update on PSA

 
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