What is Palitive care

My husband is now 13 yrs with PD
He has been extremely poorly admitted to hospital with AKI and stayed in for 6 months +
Since coming home our life has changed dramatically.
No holidays,breaks, going out for meals, I don’t like people calling because the house is such a mess because of my husbands PD.
He has terrible days and the odd better one, he can’t control his bladder and can’t have a catheter in case of infection.
He wears sheaths with bags but they are hit and miss.
I’m forever changing the bedding,his clothes, today has been bad 5 lots of fresh clothes washing is endless.
My home constantly smells of urine, I am forever scrubbing cleaning, disinfecting spend a fortune on washing powder and the like.
My husband can’t get upstairs so his bed is in the lounge, so we have no comfort in there anymore.
What happens next? He can’t keep still, can’t stand up, can barely walk.
I won’t put him in a home because I owe it to him to take care of him.
I worry constantly if I can’t cope he will have to go into a home and I would have to part with our savings to pay for care.
Will my husband eventually be offered Palitive care? Is this free, I haven’t a clue.
Is this the end for us both, it seems the only way out is to give up everything we have worked for all our lives.
I’m sure there are so many more pwp having to deal with these horrible burdens day in and day out.
Thanks for listening xxxx

Hi hollytree29

Why dont you give the Parkinsons UK helpline a ring at 0808 800 0303 to discuss the situation.

Personally I dont live in the UK, but I am sure there are options available for both you and your husband.

Have you checked with your pharmacy regarding different incontinence products?

I know it is difficult.

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Hi Hollytree,

Anaa’s suggestion is excellent. We’d strongly encourage you to reach out to the helpline on 0808 800 0303. It’s a free call and completely confidential. Or have a look at this section of the website which offers a few different options for carers who need a little help when things are overwhelming: Our support services | Parkinson's UK.

We hope you’ll take advantage of these tools and feel better soon.

Wishing you the best,

Forum Moderator

Many thanks Annaa I will enquire through the site and call the helpline as well.
Our pharmacy doesn’t deal with my husbands incontenence aids.
I found the nightingale nurse helpline who provide these through our GP, no offer of anything else.
As we wait for a appointment with urology been waiting months, just hope they can sort something else out xxxx

Hello there.
Palliative care is the relief of symptoms rather than treatment. The emphasis is on emotional support and maintaining quality of life
My husbands care has moved to being palliative since December. He is now under the care of our local hospice team.
Yes I would ring the help desk. You certainly need more support.
You need input from an experienced Parkinsons nurse, as well as the Parkinson’s local advisor.
Yes there is help for you through CHC funding but you will need informed help to access this. There is a charity called Beacon who can help you and there is details on the Parkinson’s website.
It is not easy and depending on your local Integrated Care Board can be a bit of a postcode lottery. This type of funding is a bit of a political hot potato at the moment.

I think it is best for you to ring the help line as a first step and take it from there.

I have been through all you are experiencing at the moment including AKI and 6 month hospital stay and more. We also are under the incontinence team who provide all the products including the ones you mentioned.
I don’t really want to detail all that I have dealt with but would like to invite you to private message me for more personal support.
Additionally you can contact Carers Uk for an assessment for yourself to access the support you most definitely need.
I hope that by reaching out in this way you will gradually achieve your wish to keep your husband at home. However the bottom line is we can only do our best. We are all different and everyone’s situation is different
Although I have at times reached breaking point I have no regrets and now feel hugely grateful to all who have supported me during the darkest of times. It is important to be honest about your feelings.

Much love to you


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Hi there - do get in touch with adult social services and ask for a care needs assessment - really tell them how much you are struggling and about the incontinence. Once you get through these hoops, they will look at what package of support you need. If you have savings over £23,000 you will need to self-fund but if not, it will be funded from the council.

Once this is done, you will also be assigned a social worker who can help you navigate all this and she will help you get what you need.

You’ll need to fill in a form and then you will go into a waiting list for the assessment. BUT don’t wait for them to call you - after you submit the form, call them after a week to say you really need the assessment. It took me some persistence to get through the gatekeeper on the phone but I said I was struggling and my husband was double incontinent and they escalated us up the waiting list.

We have gone through a similar period. Eventually my husband was talked into a convene through continence team. It has been life changing. Sheath for bed with a bag that can be emptied and used for 7 nights. There are medications for day time like Mirabegron but has he been checked for an enlarged prostrate?

Have you checked with occupational Therapy about a stair lift? Have you spoken to your PD nurse?

Hello Hollytree29
Very sorry to hear how things are for you.
As others have said you need to call your local adult social services asking for urgent help, they need to understand you are close to crumbling so ensure you get this over to them. You meed to call your local carers support group also urgently snd say you need help.
Parkinsons UK helpline maybe the best to call first - They used to have people they could call on yo help you locally with maybe better able to deal with Social services.
As far as palliative care goes my understanding is this is offered when a person is at the dnd of their life, a joint decision made by the health team supporting you, I don’t understand it as being something you can ask for. I maybe wrong and again Parkinsons UK I am sure will know.
Really my reply is of little help only yo repeat what others have already said, but I did want to send my sincere wishes and hope you quickly get some support. Very best Wishes Jane

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