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?

Not there yet but it’s a concern, little things like impatience, and I’m not the only one with this issue at this age. Sorry it’s starting to progress. Make sure you are practical and get all your paperwork etc in order, it’s a horrible task mostly because you are admitting there’s a problem but will be so much better for you long term

We did LPoAs, wills etc a couple of years ago. He is still very much competent to deal with lots of things. Others, not so much...

You may know this already, but there are organisations you can call:

Alzheimer's Society
https://www.alzheimers.org.uk/get-support

Admiral Nurses
https://www.dementiauk.org/information-and-support/how-we-can-support-you/what-is-an-admiral-nurse/

They're very kind and extremely helpful.

I would ask them if there's a caregivers' group for partners anywhere.

Who gave the diagnosis. In the area I work if the memory clinic gives a diagnosis of MCI they are able to self refer back to memory clinic. They tend to do another cognitive assessment and would consider another head scan if needed. That way you can have better understanding of what changes have taken place and they can sign post for support.
If it was neurology then often they have a direct referral process, sometimes this can be via person and sometimes this needs to be via GP.

I’m in the same boat, husband is now mid stage young onset.
its really really hard

Yes - I actually came on today to see if there were any posts about partners. My partner was referred to the local Memory Clinic last year and had an assessment by an Occupational Therapist as well as a Neuropsychologist. His brain scan didn’t reveal anything. Some of the tests showed problems with his memory but the consultant (and I) felt that there was something else going on. This is because he also falls fairly frequently and experiences problems with speech. He also experiences sensory hallucination throughout the day, that means that he has to keep washing himself.

The consultant referred him to a neurologist and he is undergoing further tests, as they suspect a progressive neurological condition. It could be Parkinson’s or several other conditions. This is well as the memory problems.

my partner’s condition is therefore not the same as your husband’s but I understand how you must be feeling, as I am experiencing all sorts of worries and feelings myself. I can also see that his symptoms are getting worse.

I can’t fault the attention to detail on the part of the NHS and I am hoping that he will receive a proper diagnosis over next few months. I am lucky in that my adult daughter lives at home, so she can see what is going on and we can discuss this. I also have friends to talk to - but at the end of the day, it is the shock of realising that your partner has completely changed and that there is no prospect of going back to the life that you had previously led.
.

My husband has had lots of neurological investigations; he has balance issues and speech concerns as well as the MCI. Came back negative for everything but they now suspect small vessel damage in the cerebellum as the cause of some of his issues.

Anticipatory grief is real. I mourn the things we can no longer do - meals out, wandering round new places, a couple of drinks in the pub.

He niggles about stuff that never bothered him and is disengaged from stuff that mattered.

It is utterly shit.

@SpanThatWorld I know exactly what you mean. I was only saying to my daughter that I just can’t believe the speed in which all these changes have happened. It was really brought home to me. when his travel insurance was cancelled because he is undergoing these investigations. The other thing is that my partner doesn’t really accept that he now needs some care from me.

The surprising thing about this condition is how quickly it can develop. My DW has gone from being alert to not knowing who I am and does think that we have servants!
She also thinks that we 2 homes and there is another man in the house.
We are awaiting an appointment at the memory clinic, who knows when that will take place. They do not have a phone number and the Dr's surgery only have an email address which which is for NHS use only.

Mine has Alzheimer's, vascular dementia and Korsakoff's dementia. MCI started about 10 years ago. A massive deterioration happened following a critical illness in 2020. Had to move hime to a care home in 2024 as I simply couldn't manage him at home. Violent outbursts and sleep deprivation made us both unsafe.
There are so many difficult things. My poor DC. Though they're adults, my heart breaks for them as they lose their dad day by day. One DC just got engaged and, while I'm overjoyed at their happiness, it's tainted by the sadness that their dad doesn't understand and won't be at the wedding. I didn't want to give up work but felt I had no choice. I feel robbed of the retirement we should have had. Watching him deteriorate all the time is excruciating. And this isn't my first ride on the dementia rollercoaster. I know what is still to come and I wish I could fast forward through the next couple of years to a place where my life can restart. I'm not able yet to take the steps needed to create a more fulfilling life for myself but I look forward to the time when I can.

@mbonfieldYou may have tried this already, but when my DP was referred to the Memory Clinic, although we were not given any contact details at first, it was possible to find them on the relevant hospital trust’s website. If you google the name of the trust and then ‘Older Persons Mental Health Service’(this in itself is upsetting, as they are not necessarily ‘older people’)it should come up with a list of services including those covering dementia. This should include phone numbers that you could use to try and find out more about appointment waiting times.

I'm so sorry, you can register as a carer-you get very little, but will have some offers of things for yourself.
If you've got kids, I would talk to them to explain things and so they can support you as much as possible.
Also make sure this info is on your medical record (as a carer) as I think if you're listed as one, they make more effort to get you appointments, or so I was told.
It's great you're looking after him, I'm sorry to say I've known people abandon their partners at the first sign of illness/them not being exactly what they 'd dreamed of, more often than you'd think. And I don't underestimate how hard it is, and there might well come a time when you can't cope, and please look at options for that. Support groups can help.

Mayim Thank you for the advice re contact details I have located a phone number and will give it a try later today.

I'm in a similar position and really, really struggling.

DH has been diagnosed with Alzheimer's off the back of a head injury where he suffered a bleed on the brain. This was 11 months ago and he is completely unrecognisable.

Prior to the bleed there was some mild decline but easily put down to retirement, ND, and ageing in general. Our relationship was suffering badly and I had asked him to leave on several occasions - he refused and I should have pushed the matter but didn't. Then he had the bleed and is now in no way able to live independently so I'm stuck with him at home.

I've categorically refused to give up work (I couldn't afford to anyway, even if nursing was a hidden forte of mine) and we're currently waiting for a care needs assessment. He needs daily carers as a minimum but my fear is because we're still together I will be expected to continue bearing the load.

Meanwhile he is rude, unpleasant, disengaged and lazy. I'm told that this is the Alzheimer's but in truth it's just a worsening of his previous behaviour, coupled with a much lower level of social awareness and empathy. It's utterly exhausting to live with, and watching his decline in front of my eyes is heartbreaking.