A question to anyone who has experienced of dementia

[Frazzledmummy123]

Hi everyone,
I know nobody can give me any definitive answers as everybody's experience is different, however I thought I'd ask on here because some of you have, or have had, first hand experience.

DF (88) has been having confusions for several years now, dating back to 2019 when first noticed something. He lives with DM (84) who is his carer, but also the queen of denial and can't or won't face up to anything she doesn't want to unless absolute crisis point. As a result, his confusions have never been addressed and despite me almost reaching breaking point trying to get her to see about them, we are now at this point.

Long story short, the past few months he has got considerably worse very quickly, and she can no longer hide it, so has finally admitted he may have dementia and has agreed to speak to a doctor.

I am not being an armchair doctor here, and I'm aware a lot of things like UTIs, etc, can cause confusions. However, he has had a check up a few months ago where bloods and urine, etc were all checked out and proven to be ok. His confusions are characteristic of dementia, for example, verbally aggressive while was never like that before, he is worse in the evenings, saying he spoke to someone on phone when it was someone else, getting time periods confused, forgetting a relative had passed away.

What I would like advice on (best you can) is, when dementia speeds up after it being relatively slow, what does this mean? Does it mean he is now going to go downhill quickly, or can it plateau again? Obviously as I don't know what type of dementia we are dealing with, it is difficult for anyone to give me any idea. But any guidance or experience would help.

In my very limited experience it tended to be steps and plateaus. My DM was never aggressive, just a bit moody but the first indications with her were hallucinations - auditory mostly but occasionally she would see things as well. Compared to your situation where you have concern for the well being of both parents things were easier for me. My mum was widowed and living in the granny annex so I only had to worry about her and me - my husband was supportive but not so involved in her care.

I don't know what would have happened to us if there had not been a crisis and the lovely experienced carer who came to get mum up that day had not thought that she had had a stroke. Those were the magic words that brought the paramedics and got her admitted to hospital where her dementia could no longer be explained away. From there she moved to a rehab unit and then to a care home where she stayed for nearly 3 years before passing away in the summer with my cousin and I by her side.

Maybe alongside the GP appointment (if your parents will allow you go with them) it would be good to have a call with an Admiral Nurse. I spoke to one when mum was in hospital and I knew I was not going to be able to care for her at home any more - alongside the dementia she was also crippled with arthritis and each trip to the bathroom took me half an hour alongside the other demands on my time.

It can be a long journey and it's scary. I don't know how I would have coped without the folk on this page, especially the Cockroach Cafe threads.

Sorry for your loss 💐. That sounded very stressful, and I'm not surprised that it was a crisis which led to the breakthrough, as often that's always what has to happen before any progress is made in treatment.

Unfortunately my parents would never agree to keep going to the appointment with them. I just have to hope my mum is truthful when she tells me how the appointment went. However, I don't deny I am worried she will postpone the appointment as he'll have a few good days and decide to not call 🙄. I'll end up having to notify their GP myself if that happens. Or, she will tell me he passed the memory test at the doctor surgery which I know.would be lies given how he is at the moment.

Someone mentioned admiral nurses to me recently, I'll certainly look into that. Thanks.

Sorry to hear about your dad OP.

It depends on the type of dementia. Vascular dementia tends to be more sudden steps down, Alzheimers is a gentler curve. But that is generalising, and there are other types of dementia too.

Often what happens is that there isn't really a sudden step down, it is just that the person has been masking their issues and no longer can. That happened with my mother (Alzheimers) and we thought she had a UTI, but she didn't, it was just that she reached a tipping point where her problems became more evident. It didn't lead to other sudden step downs, that was back in 2016 and she lived another 9 years, declining slowly but seriously.

It's impossible to predict the course of the illness, because even two people with the same type of dementia will have very different timelines and experiences. It also depends on the type of care they get (and will accept).

If your dad goes to the GP appointment and the memory test points to concerns, he will be referred to the memory clinic to see a psychiatrist, and for a head MRI.

So sorry you are going through this. My dad had Lewy body dementia with Parkinson’s. To be honest it took a lot of medications trials to find what was right for him. It can be very trial and error to start.
hallucinations and mood changes were our biggest issues to start. Then one day in year 3 it was like a light switch clicked and he just fully went mentally. Sounds bad but it became easier then as before that he would get upset as he would understand what was happening. When he fully went mentally he just lived in his own little bubble and was happy enough. The drugs are there to try prolong the progress of the dementia just make sure they keep trying till they find the right combination x

I think you need to speak to GP first of all as it is important to get a diagnosis. There are many different types of dementia which can present differently and also vary in symptoms for each person. For example, vascular dementia is like lots of mini strokes which can affect blood flow to the brain. Each time the blood flow is affected, there can be a dip. For other types of dementia, the change can be more gradual, but as you’ve said, behaviour can also be exacerbated by UTI’s or other factors. Knowing the type of dementia will allow the appropriate help or medication to be given.

Once a diagnosis is made, it helps to unlock available support, so it’s important to get to that point.

At least your Mum has accepted that he needs to see a doctor, which is a good start - can you persuade her to let you attend if possible?

Sending hugs as it is a difficult and worrying time for you - hopefully you will get the help and support needed.

Do you have POA? If not try get that sorted soonest.
Also might be worth speaking to the GP about your concerns. They won't be able to give you any information but we found this useful in that the GP took my mothers denial with a massive pinch of salt....

As previously mentioned each person's pathway through dementia is different. My Mum was referred to a memory clinic but became too distress to complete the scans and tests so never had a formal diagnosis. However that made no difference to the care offered by local authority.

Going down the GP route will only take you so far - it's social services who assess and arrange care packages. So suggest to your Mum that you contact SS so they can do a carer's assessment to support her in her caring role. Yes they may have to pay for it. What sort of input would help your Mum ? Parents can be awkward when it comes to arranging help - trust me I know. Basically if she agrees to any support, even if you think it's not enough / wrong direction - get it organised asap. One way in is to offer for someone to be with your Dad whilst your Mum goes out for time to herself. Does she have a group / club she enjoys ?

A couple of things for you -

Please don't make anyone a promise you will never consider a care home. There are some instances where a care home is the best option for everyone and it's bad enough when everyone agrees, and the last thing you want on top is feeling guilty because of that promise. say something along the lines of "we'll do what's best at the time. Let's not get hung up on that now".

Second thing - dementia can be like watching a slow motion car crash, where you know something awful is going to happen and there is nothing you can do until it happens. This is how it is and it's not your fault, and there is nothing you can do to prevent it, especially if those involved are refusing help and support.

A third point - make contact with your local Alzheimer's group / Age UK - they have lots of information, local contacts and good source of support. Most run social groups to get sufferers and their carers out of the house.

I agree - get a POA for your Mum, sounds like it's too late to set one up for your Dad.