Choosing care support for help with DH

The first point of call I think would be to organise an assessment of his needs by the local social work department. You are also eligible for an assessment of your own needs. Can also recommend contacting your local Citizens Advice Bureau first (they will be taking telephone calls ) . They will advise you on your financial options eg any benefits for which you are eligible. I would imagine the Parkinson' s Society could also talk you through the next steps. Wishing you well. Do look after yourself. I am sure someone will come along and give you lots more advice.

My OH had PD and I found myself in the exact same position as you are now.

Firstly it is very important that any "erratic behaviour" is dealt with medically. Some of the PD medications can cause mental symptoms........my OH had acute paranoia....he thought I and others were trying to kill him, that I was sending messages through my hearing aids etc. . Your OH needs to have a review of his meds if his behaviour is changing. And......YOU must keep yourself safe.

As his disease progressed, I found myself gradually doing more and more for my OH: helping him dress and undress, helping him to the toilet, helping him to get clean etc. It sort of crept up on me and I realised that I needed some help.

Sadly my OH fell and fractured his femur and his care needs rocketed following the surgery.

The sort of help that we received - or more accurately that I fought tooth and nail for! - was as follows:

- aids around the house, including rails in the shower, a ramp to the outside, a wheeled commode, a standing aid, a wheelchair for getting about outside etc. All free on loan. Depending on where you live these come through the district occupational therapists - sometimes employed by health and sometimes by social services. You would need to ask which for your area.

- a hospital bed, with air mattress.

- carers 3 times a day, who got him up and dressed, helped at lunchtime, and came and got him ready for bed. We then progressed to a live-in carer as he was very ill and hard to care for.

When it comes to paying for the carers:-
If HE has more than £23,250 in savings he will have to pay for any care - Social Services will make a contribution if he has less than that. It is important to note that any savings in your name are ignored, as is the value of the house as you are both living in it.

So....if he is over the savings threshold, then you can simply get hold of a care agency and organise whatever care you feel you need.

However, it is a good idea to talk to the local SSD and ask them for an assessment. Even if he has to pay for care, they can advise on where to get access to the things you need. He is legally entitled to a full assessment as a Vulnerable Adult.

We had help from the local PD association, and they also paid for a carer to come in while I went to choir practice each week. Contact Parkinsons UK for information about your local groups.

The local hospice also helped us - he had one respite stay and also made use of their music therapy and mindfulness groups.

But first of all he needs a full medical review in view of the fact that his behaviour is changing. We had an excellent PD nurse who was simply wonderful and would monitor his condition and change his meds when needed.

Please do feel free to pm me at any time - I am happy to help if I can.

Also, do you have Power of Attorney? As his disease progresses you will find yourself needing to deal with all the finances, and the whole thing is easier if you have PofA.

I am sorry that your OH has this cruel disease; it is not what we plan for and I understand how stressful it can be.

Another PS - he might qualify for Attendance Allowance - it is not means-tested and most people with PD get it easily. Citizens Advice could advise you on how to word the somewhat complicated form.

I was lucky in that I had been a social worker with adults with brain injury so knew how to fill these crazy forms in - I would strongly advise that you have help with this if you are unfamiliar with these forms.

Thank you. I have PMd you, Luckygirl. Onwards and upwards!

I think there is a motability payment available too if you drive? Luckygirl may know? And a blue card for parking which is for the person not the car so relatives can take him out and use disabled spaces. We got help from district team - discharge team arranging bath handrails, railings outside for steps at door. Vocal carers agency (Edinburgh/Midlothian) arranged for POA forms and an appointment with their lawyer to fill out the forms - telephone due to covid. This was free for DH though I paid for mine at same time as you just don't know what is round the corner. We had to pay GP's to assess capability and pay for the forms to be lodged with the Public Guardian's Office. It is horrible PD. DD1's FiL has had it for 10 years and has Lewy body Dementia early stages. His wife is in similar position to you. My DH recently had a stroke not PD but this is why I now know a bit about the help. Learning every day. Good luck with everything. I made a list and ticked things off. We are in Scotland so might be a bit different if you live near your name GrannySomerset

I suggest that you get a Benefits Check and I think that CAB or AgeUk would be able to help you.

Lucky is the person to listen to.