When your partner starts to decline...

[SpanThatWorld]

Unsurprisingly, most of the posts in here are about parents etc.

My husband has a diagnosis of Mild Cognitive Impairment which I am sure has started to progress.

Anyone else in the same position?

My husband has late stage Parkinsons and vascular dementia. He’s, very recently, suddenly become bed bound and has carers four times a day. It’s so sad. I regret all the things we didn’t do.

My husband has ppa.. primary Progressive Aphasia..his speech and articulation are pretty poor now. He gets frustrated and does have some mood swings - understandable. He seems as sharp as ever with a lot of things but can't always follow a TV programme plot. He's still who he was but much more so...Hard to explain really. Like any form of dementia it's hard on us both- not what we expected.

Yes, DH has LBD. Diagnosed now three years ago, following him getting sectioned. I gave up work at the end of last year to become a full-time carer. It is hard. Financially we are okay, which is just as well as PIP and carers allowance would not go far. Medical support is very hit and miss in my area, and I know varies a lot from region to region. Admiral nurses were really good though. About 2/3rds of friends are no longer in touch. Dementia is frightening and they want little to do with DH now he is very different. World has gotten smaller. We can no longer go abroad. We had a very difficult flight the last time we tried it. Even going to restaurants is hard. Sometimes fine, but often he just stands up and says I want to go home and keeps doing this until we leave. Drug control is important. Even with good drug control I can still get some bad outbursts of paranoia and aggression. I find it very upsetting to be accused of affairs and being a slag. He would never have talked like this when well. Future is much more of the same. Some days I just need to focus on getting one foot in front of the other. Hard on other relatives too. My youngest son feels it. My eldest son sae it as an opportunity and got DH to sing a POA (which is ridiculously easy to do). Cost us a large amount to remove and then he made a safeguarding complaint to SS. Also really stressful. Under dementia you have to be so careful of (close) relatives. I know that I am not the only person where someone’s money has effectively been taken by a relative.

@Cyclebabble I’m so very sorry to hear about your situation.
I don’t have anything to suggest, but please know you are heard tonight x

Thankyou

@mbonfieldhow have the appointments gone?

@Whenindoubthugitout@Mayim
@Justbecauseyoucandoesntmeanyoushould

how are tou all getting on?

There are a few more on the thread who are going through similar. I’m sorry if I’ve missed you out

@TinyMouseTheatre, I'm OK, thank you. DH is safe and well cared for.
I've been busy with house projects. It's hard making all the decisions alone and spending money on a house I won't live in long term but can't sell while DH is still alive.
One of our DC is getting married next year. I'm overjoyed, but there is the shadow that DH will not be at our child's wedding. I'm sad for DC that their Dad won't be there. I'll be there as "mother of", but without the "father of" our child. I never anticipated attending my child's wedding without my husband.

We really do expect that they’ll be there for all of these life events don’t we? I can totally understand the sense of grief that you must feel.

Have you got a supportive DSister or friend that could help you on the day?

@Cyclebabble how awful that your son is using your DH's illness in such a manipulative way. I'm so sorry. I understand when you talk about how hurtful his words and behaviours are towards you. They don't have capacity so aren't aware, or don't necessarily intend to cause harm, but they do. Their lack of capacity stops us from labelling it as abuse but the impact on the victim is no less than that of intentional abuse. Yet, we're expected to pick ourselves up and move on no matter what they say or do.

@Justbecauseyoucandoesntmeanyoushould Thanks. You do have to keep telling yourself it is the disease, it is not him, but it is hard. As for our son, yes it is shocking and I never thought he could do something remotely like that. However, I know from discussions elsewhere that financial abuse of dementia sufferers is relatively common and mostly comes from relatives or carers. I would be very careful with any finances. Also worth doing a credit check to ensure no loans have been taken out.

I think you’ve posted about you “D”S and the POA before? It truly is awful for you having both your DH have this seagull disease and you S use it for his financial gain