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Stubborn - Carers UK Forum

Stubborn

Tell us a bit about yourself here.
Hi
I’m new. I have never posted a thing over the internet. But I have been reading posts when I feel rock bottom. I was seriously ill with stage 4 cancer I’m sure my husband was showing lots of signs
His posture and walk was bent and slow. Everyone said it was stress.
So two years of memory tests a couple of scans. Just MCI. But last week after a Dat scan it was confirmed Parkinson’s with Lewy bodies. He was put on galantamine 2 years ago but I’ve been watching him collapse unable to walk. Being confused He had a job where he dealt with foreign currency world wide. He can’t do number difficulties in telling the time Value of money. He has been having hallucinations for about 8 weeks. His spacial awareness has gone. He doesn’t know what room or where to go at times. Last week they changed the galantamine. I had 4 horrific days of him not being able to dress wash he was a zombie. I stopped the pills after 4 days and managed to speak to his specialist doctor who said put him back on galantamine. Well I feel bad as I resent I’m on my own with this. I have people coming to see us from various agencies but no nurse contact in fact nothing I can’t drive as I have eye problems. We are stuck. He won’t have a walking aid He gets really stressed over the smallest things. His so stubborn I have to repeat myself quite a few times to stop
Him doing something wrong ie walking in the wrong direction putting clean dishes in the dishwasher. But when he has hallucinations he won’t stop asking me questions as his hallucinating people. He tried to ring our sons to say I’m dead. I’m
Not his wife when these occur. He was a very placid quite man. I feel shell shocked to be honest ,why is the question after my really rotten two years looked forward to going out and about. I try to get him to
Look at the good bits of our life but he refuses and puts me down. He doesn’t read anymore. He doesn’t do anything unless I ask. My neighbours are good with lifts as I have a lot of hospital appointments. I take him with me propping him up when necessary. I know there is a sitting service. But this is the only time we go out. We have family who live more than a couple of hours away but get down between them very fortnight when they take us out. His eating has become messy but tells me off if I say anything. I don’t know how to act. I feel guilty about some of my thoughts. Worried sick about the future.
Hi Kate and welcome
So sorry to hear all that. Parkinson's isn't my area but I do know that the Parkinson's Society has much information, and runs local groups to support both you and your husband
Here's their website
https://www.parkinsons.org.uk/informati ... parkinsons

Let us know if you have any trouble accessing the site. They also have a phone number 0808 8000303

Am sure others will be along to offer their experiences too

Stick with us, please
Kr
MrsA
Welcome and well done for posting for the first time.

It really sounds that you could do with some more support. Are you claiming things like Attendance Allowance. Council tax relief. They could help with some outside care for him so you can get out and about and do things for you too?

Has he had a needs assessment from social services?

What about your own health? You need to take care of you too.
Welcome to the forum.

I'm really sorry to hear that you are going through such a tough time, and can't understand why you are not getting any help with your husband. There are several other forum members with a lot of experience that will help you, so I will concentrate on how you can get help and support in various ways.
Can I start by asking a few quick questions, to help us give best answers. Some seem irrelevant, but they are not!

How old is your husband?
How old are you?
Do you have any children?
Do you have Power of Attorney for your husband?
Do you have over £46,000 in savings? (Yes/No)
Have you asked Social Services to do a Needs Assessment for your husband, and you?
Did you know that your husband is now exempt from Council Tax on the grounds of "Severe Mental Impairment"?
Has anyone mentioned NHS Continuing Healthcare to you.