Is there a benefit in knowing?

[FawnDrenched]

Hi, I am unsure if my mum has dementia but reading up on things it does seem pretty clear cut.

She is 82 and over the last few years she has closed down. It is really sad to see the person she is now whilst remembering her past self. She is very child like and has a number of obsessions the main one being her health. She is absolutely convinced she has a stomach problem which manifests itself with the thought that she has not been to the toilet (number 2). A good example would be last Sunday. We got a call at 07:30am and she said that we (my dh and I) had to look after my Dad as she had to go to hospital. I would say that I have heard this so many times now. I explained that she was fine and would be fine. 20mins later another call and another explanation that she was fine. A short while late and Dad calls to say mum is in a state and they have called the Dr. out. This really frustrates me as they are forever calling a Dr. or an ambulance. The Dr. comes out on Sunday to tell her yet again she is fine. I call to ask what is happening and she said the Dr. came out and he says she is fine though she does not believe him. I say that she has to stop using these services are people are genuinely ill. She gets angry and says she will never call me again. Fast forward 3 days and the phone rings and here we go again she is going to die and needs a Dr. I explain she saw the Dr on Sunday and she is adamant that she did not.

My dad has type 2 Diabetes and is very housebound and unsteady (yes his own fault despite years of hassle from me). He goes to the Drs every other week. Mum goes as well and always ends up making the appointment about her and gets a checkover.

She repeats herself over and over again and where my patience is thin my Dh is great and caring. My sister lives 2.5hrs away and my brother in another country so it is just me and my Dh.

She is paranoid about security, about dying and often just sits with a blank look saying nothing or sat on a stool in the corner with a face mask on.

I could go on and on but I guess most of you have seen all this before. It is not possible to hold a conversation with her of any kind.

We do have lasting PoA for both health and finance and have had it in place for a couple of years but only use the finance one to look after everything for them or rather my Dh has.

There has been a worsening of the situation gradually for years but recently there has been a step change and it is awful to see.

My question after that very long explanation (sorry) is:

Is it worthwhile knowing if she has dementia and if so why would that be as materially nothing would change and we would just have a label?

Thank you. My mum is caring for my Dad in that she cooks albeit they eat the same meal everyday (honestly) and she puts the washing on (last week I arrived and she had one small hand towel and a tea towel in the wash). I am also worried she does not have the capacity to understand the situation and my get very angry (she does on Occassion) if I suggest a Dr's appointment.

Thank you again

Sorry to hear you're going through all this, I think the referral for the memory clinic is a good step. Although benefits and social care assessments should be done based on needs, a diagnosis very much helps.
If she has Alzheimer's (which accounts for over half of all dementia cases), there is medication which can help. My dad started with Donepezil in the earlier stages, which definitely worked as he didn't take it for 3 days when he went away with some friends and had a huge temporary decline in that time. He now also takes Memantine, as he is heading for the later stage. He had started to get aggressive (never like this before the dementia) but now is also on Risperidone, which was an absolute game changer and now he is pretty chilled out.

Thank you. Yes I agree that benefits should be based on need.

I missed a call from Mum's surgery late yesterday as I was busy at work. I will call them first thing on Monday. The good news is that they are now calling me and including me in the discussions which is really positive.

Something to calm her extreme anxiety would be helpful but I am not sure if that particular horse has already bolted.

I am not sure how the type of dementia is diagnosed. Maybe MRI/CT or just from the experience of the therapist/memory clinic?

thank you

I would not have conversations to 'keep DSis up to speed' or whatever as it is annoying to be given suggestions to make DM's life better / things you can do to help when it's you who has to do it all. I think siblings feel guilty they aren't doing much and they give you 'helpful advice' to appease their guilt. So avoid discussing it.
A carer/cleaner/cook going in for a couple of hours might help if DPs agreed to it. It provides an interest in their lives and would break up the day.

Thank you. I avoided telling my brother as he is in a different country but my sis told him and he called to unload his guilt.

A cleaner is a great idea, and they can both afford it and need it. Mum can't cope with people at the house so each week she would be hyper anxious and she would constantly call me to check if he/she was coming.

I did update sis last night and she said ..do you think I should come down? I said no because its more work for me as she stays at our house. Last time she came she got really arsey with us because she was feeling crappie. She later sent a text to apologise. Lots of words an no action.

Thanks

Getting a diagnosis may help in terms of giving you access to care. So having someone come in to the house to make sure they have food and clothes washed rather than them relying on your mum cooking and washing.

She may get access for medication if that helps, some anti anxiety meds may benefit her. But the GP needs to know the issue isn't stomach problems but anxiety from dementia.

It may also help with support for your dad, if his carer has dementia he will need more help too.

I'm really sorry you're having to think about this. My MIL had alzheimers and was very, very anxious with it. It's a horrible thief of a disease. It steals time from family with their loved one as they are no longer the same person. And it steals time from the person with the disease because they are lost and anxious.

@ThorsBedazzler

thank you. Did the anti-anxiety meds help your MiL and if so do you happen to know what they were?

The Dr. did say she was has been aware of Mum's anxiety for a while, which is not surprising as she spends so much time there. I would have hoped that the GP could have flagged this up a while ago but then they are so busy and time pressed that I guess its not always possible

@FawnDrenched sadly they only just got the meds right just before she succumbed to pneumonia and passed away a few weeks later. I don't know which meds she was on, but they went through quite a few before they found something that worked.

Covid had exacerbated her decline unfortunately. She ended up repeating numbers and a few words as her anxiety escalated.

I hope you find something to help her.

@ThorsBedazzler I am so sorry and thank you for your good wishes. I will ask about medication once we have the diagnosis. Its difficult to see the person now that was at one time so full of life and joy.

Mum continues to deteriorate and at the weekend she once again started complaining of feeling ill. This time it was her chest and she had trouble breathing. We knew this was only going one way and on cue yesterday she called out an ambulance. I spoke with the medic on the phone and explained this was the third such incident in less than three weeks. I gave her medical history etc. He said they had done an ECG and she had better readings than his own heart. I apologised several times and once checked, mum declared herself fine.

Called the GP this morning and she is going to chase the memory clinic appt. If it is in the next few weeks we will wait but if it is longer she will prescribe Citalopram with the hope it will calm her down. The GP had already called my mum and she said she would not take any new medication unless I (her daughter) was responsible for administering it (ffs).

Dad is in a real state and it is for him that we need to try to find someway of calming mum down. Give it a couple of days and the cycle will repeat with another illness. She will have no memory of this event.

I feel for anyone going through this as it is relentless and I feel so sorry for Dad who has serious physical issues as well as not being able to articulate what is happening. He started talking at length about someones dog when the medics were trying to get information out of him.

I just want to get a camper van and keep driving.

Getting a diagnosis is (in my view) valuable in that it acts as shorthand for lots that's going on. However, as you know it's not going to change how your mum is or make life any easier for you or your dad. Do you have a view of what you want/need for your parents - do you think your mum is safe at home, or does she need residential care? Would she go? etc etc. Make sure you are registered with the GP as her and your dad's carer by the way, there are some benefits by way of accessing a little bit of funded respite.

@LadyGardenersQuestionTime thank you

Too early for that conversation but they have been married for 60+ years so I strongly suspect despite their difficulties they will not want to be parted. That said I spoke to my sis this morning who suggested something similar.

The GP said once we have the diagnosis we can chat about a care package (not sure what this means).

I am registered as having PoA with the GP. It sounds like registering as a carer is different. What benefits would this bring as the GP is now happy to discuss things with me?

thank you

You might get some benefit / off load to people going through the same as you on the Elderly parents forum on here.

It's called .

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