Carer offload

Hi all, Just need an offload… no-one who hasn’t experienced living with PD understands . This afternoon, hubby who has PD is out in the garden in the sun, shorts on, doing the lawn edges with long handled shears. Apart from a tendency to fall forward off the lawn - no-one would ever guess he has PD. BUT last night, he suffered sleep disturbance, ‘the fidgets’ and huffed and puffed with frustration. he was pottering about downstairs a lot of the night. This morning he needed almost 100% assistance to get out of bed and shuffled around in his dressing gown because he could not dress himself till late morning - after spending 3 hours in the bathroom due to stuck gut problems poor boy. His mobility was very poor and slow, and getting him out to a lunch engagement was painfully slow and frustrating. Getting out of the car required the facilities of a disabled parking space - door fully wide open, so it’s getting time to get a disability parking badge. Once sat at the venue though, he looked completely fine. I am glad he is having a good afternoon - but me - I’m knackered, stressed and feeling as flat as a pancake. Dealing with the ‘ups’ and ‘downs’ is more challenging that dealing with a steady situation and makes for a sense of loneliness as friends only see him when he is out and about and on an ‘up’, and think ‘what on earth is she talking about’. If he goes to the GP to get the necessary for a parking badge - the GP will be seeing him when he’s out and about and ‘up’ and won’t understand the need.
I’ve kept a diary of help required in preparation for applying for attendance allowance - but the variability day to day and hour to hour means the form (which assumes a regular routine need for various defined types of care) is just not suitable for a case of PD - yet, I need to be around and vigilant all the time.
Totally worn out…encouragement needed.

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Hi G, just read your post and want to let you know I know exactly how you feel. It’s much the same scenario here. The nature of this lovely disease is so unpredictable and at times being the carer is totally exhausting. A lot of what you’ve written could have come from my own pen. I wanted to say, re the Blue badge, I finally applied for one a couple of months ago. (after 6 years with PD) The form was a bit of a challenge but where there could be ambiguities in my answers, I simply stuck post it notes by them with an honest answer, mostly stating that the very nature of PD varies from hour to hour and day to day and is not always defined by how far he can walk but how difficult it actually is to get in and out of the car! So always having access to disabled space has made a huge difference. My husband never had to see the GP and the badge was obtained in a couple of weeks. So go for it. I wish I’d done it sooner, especially last November when he had his total knee replacement. You can imagine what fun that was… NOT.! Good luck with it and take care. Jean

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Hi @Gardener1, :wave:t5:

I see that you’ve already received some lovely support from Jean1 and I’m glad you feel safe enough to vent on the forum. Being a carer for someone with Parkinson’s can come with it’s challenges which is why we’re here to offer you the support you need both on forum and via the Parkinson’s UK website.

With regards to your blue badge, this is something that one of our local advisers could help you with and our helpline team can help put you in contact with one. Please give us a call on 0808 800 0303 to speak to a helpline adviser to support you on this.

Do take care and I please continue to use the forum to connect with others. :blue_heart:

Best wishes,
Reah

Hi Gardener1

Can I echo Reah’s post? I’m doing the First Steps course (First Steps programme | Parkinson's UK) and today we were told that you should contact your local advisor or your local group for help with applying for your blue badge. They know exactly how to fill in application forms to get the right result.

Take care and remember you are not alone
Regards
Neil

My sympathies @Gardener1.

What about taking a video of him struggling with something most would find easy (with his permission of course!) It would demonstrate to your friends the kind of difficulties you both face and help them understand your frustrations.

Perhaps you could ask your friends to read your letter on this site and copy your letter and one of the replys to your Facebook page assuming you have it restricted to friends. My husband has Parkinsons but hasn’t got the shakes which most people seem to connect to Parkinsons, he can no longer garden which is awful for him having been a keen gardener all his life because he often falls backwards and he is frightened he will hit his head on the paving slabs. I have Myasthenia Gravis and as most people haven’t even heard of it my friends did not understand it so i copied information about it to my Facebook page and those who actually read what I posted now have a much better idea of my problems and amongst other things they now visit me rather than meeting in the nearest town. Get the info out there. If people don’t bother with you afterwards then they weren’t proper friends to start with .

Hi
I dont know your age of you and your hubbie and I dont wish to be rude, but you are entitled to apply for different forms of help.
A blue badge
PIP Personal Independent Payment
CARERS Allowance
Speak to the advisors on here, also if you fall into the bracket Age UK will help and Citizen Advise can advise
Because the illness is unpredictable please base it on a bad day not how they feel on that particularly day.
Happy to help if need be.

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Like others in this thread, your post is completely relatable as I suffer the exact same with my husband. Whenever people see him he is medicated, online cracking jokes and can be the life and soul of the party. What they dont see is how long you sometimes have to wait for the medication to kick in, the effort to just get from point A to point B is like a military operation and sometimes you do feel like you could stand there and scream…or cry…or maybe both??
Point is this is the perfect place to offload as we genuinely do know how you feel. You are not on your own. The Blue Badge is a lifesaver and it does take the stress out of trying to walk across a car park or worry that the car is too far away.
You can contact the Carers Trust - they have helped me a lot. You have a point of contact
( an actual human being) and they can help you with anything and everything and they also log you husbands details so if (God Forbid) you are ever ill or are in hospital your husbands full medical needs are on their files and they arrange care until you are feeling better.
Its easy to forget you in all this so please try and get some you time daily.
Take care & all the best
Beth