Is this Dementia?

[toyotatallula]

My mother has Mixed Matter Dementia. (Diagnosed may 2021) It is affecting her cognitive ability rather than her memory. She is in decline at the moment. If things stay according to her routine she is fine. But if something changes eg carer is late or packaging changes on something she gets really confused and can’t cope. She is becoming very unsteady on her feet and is almost incontinent now. Her speech is very slow and she is forgetting
Words and getting terrible anxiety. Despite having 4 carer visits and my sister and I there every day. She says she is lonely. She hates winter and the last week or so she is going to bed at 6:30
Pm and rising at 5am. She always remembers who we are and where she is.

Is this type of dementia familiar to any of you?

My mum has mixed Dementia and she sounds like she is in a very similar stage. My dad cares for her but her anxiety and confusion means she is quite distressed a lot of the time. It must be very hard for a person living alone.

Yes bits of that resonate, my Mil had dementia (sadly passed away earlier this year). She spent more and more time in bed, particularly if it was dark because to her that meant night time. I think her brain couldn't differentiate between day time darkness and night. Oh and her anxiety was off the scale - until the Dr gave her medication for it. In the end she wasn't safe to be left alone at all, so she went into a specialist dementia home. It was a lovely place, very small, more like a family home really.
So sorry you are on this journey it's a very difficult one.

Some of it sounds like dementia but there could also be something else going on. The loneliness and going to bed early sounds like SADs which we are right on season for.

there is no harm in talking to a specialist to rule other things out.

Thank you for your replies. We had thought we were coming to a point were she needed a home as we aren't in a position to move in with her or have her live with us.

However the carers tell us there are many worse off clients living home alone.

We are having difficulties getting her Dementia clinic appointments as they are often cancelled at short notice. I guess we just keep on trying.

Ignore the carers. They just want to keep your mum on their books. It doesn't matter if there are other people worse off than your Mum, it sounds like she is ready for a care home.

Start looking now. Don't wait for a crisis. If she falls and gets admitted to hospital that will be a crisis.

Please consider everyone's mental and physical health in this. It's not just about your Mum. Guilt and sadness goes with territory I'm afraid.

Thank you @ZippyDoodle How do we go about finding a home? Do we just go ahead and make appointments at them?

She sometimes says she is struggling and wants to go in a home.Then by the time
E my sister arrives that evening she will be distraught and tell her I'm trying to get her in a home.

It's a hard one.

There may well be people worse living at home because they can't self fund a place and have to wait for the LA to decide there's no other possible option. A risk I often point out when people post they are going to give their assets to their children so they don't have to pay for care.

Yes potentially. The carers she had previously were amazing but the new people don't seem to
Notice the decline in her. She has asked for her tv to be moved to the bedroom but I'm resisting as I don't think she would ever get up
If I did that.

If she will be self funding, then yes. Check the CQC map for homes near you - it gives a rating and also info on what conditions they cater for. Make a shortlist of the ones that look promising, and start calling.

Moving earlier feels hard but it will allow her to settle and familiarise herself with things.

Going there for respite is a good one. Say it's a little holiday for you all. It won't be forever, etc. etc. If her memory is failing she won't be sure how long she's been there.

The local council should have an info booklet with all care services and homes in it. There are also websites you can search and the Care Quality Commission will have the latest reports for each care home.

I would go with a home that feels right for your Mum that is easy for you and your Dad to get to so you can pop in on a regular basis. Activities and being sociable are generally good for dementia but if she's never been the sociable type then somewhere quieter with background music and jigsaw puzzles might be better.

You just have to go and look. Look at as many as you think you need to. Not all care homes are the same. I would ask what the process is for taking people in and settling them. Can you access their notes or is it all verbal? How do they keep you updated? Look around the home. Is it nice? Does it smell fresh? What's the deal with laundry? Do they have someone to manage it or do care staff bung it in when they get a moment (not recommended!). Do the residents look cared for? Are there plenty of staff around? What are they doing? Talk to residents. Talk to family. Take it all in.

You could also say her property needs some decorating or diy as an excuse.

It's difficult. You have to tell white lies. It's the kindest thing to do.

I'd be totally on board with this and I have looked into respite before when she has been very depressed.

My sister is less sure. She feels as a sahm I should be doing more for my mum so she can stay at home.

I just know this is the hardest thing I've ever done in my life and it's dragging up old irritations I've had with mother over the years. I don't want to be resentful but I feel I will become that way if I do any more. This is having a huge impact on my family as it is.

Mum is a very passive act and doesn't do anything to help herself. She's lost a lot of power in her knees and legs because she shuffles round and throws herself down on chairs rather than lowering herself. She tells herself she can't get to look ontime so she has stopped trying. She is lonely but won't allow visitors other than sis and I.
She has carers but she won't ask them
To do anything instead saving jobs for when I go. She has decided she can't hear anything despite passing a hearing test.

It's exhausting.

God sorry that was a rant! Sorry about that.

Dementia can make someone the worst version of themselves so if they were passive when they were younger this will potentially ramp up. It will also make her a bit helpless and unable to help herself. She probably won't even realise what she is doing. Forgetting how to use something like the cooker is common and will be covered up with having salad for tea because she 'can't be bothered to cook tonight'. It is common for people with dementia to ask family members to move in to look after them.

You choose how much time and energy you want to give your Mum. Do not let your sister dictate this to you. It doesn't matter if you are a SAHM or the Prime Minister running the country. Establish your boundaries now and don't be guilted into taking on more than you want to.

It's often the case one child takes on the bulk of the work. If can throw all sorts of hurts if you had any sort of dysfunctional family relationship. I'm that person and my parents' situation has ruined my relationship with my brother.

It is the hardest thing and if you don't get a grip on the situation it will potentially get much harder.

Lots of us on here understand!

Now is the time to start looking. The careras are right there are people with more advanced dementia living at home that's because there's normally issues with funding.

Have a look at CQC inspection reports for services in your area. Enquire about repite care. If she goes in for respite, moving in will be less stressful.

Dementia is cruel. Cruel on the person and cruel on their loved ones. I'm sorry you are experiencing this.

My father has carers four times a day because he is no longer mobile. He has capacity so refuses going into a home. But a home would be better for him if only he could see that.

Also check for a UTI.