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Well, don’t I feel like a meanie.

EmotionallyExhausted

Registered User
Dec 30, 2019
11
Hi everyone,

Here’s the latest on my uncle, my family and me.
So, after Christmas the daily visits dwindled a little, but now they’ve started again. I’ve heard about “sun downing” and I’m wondering about it because they’re happening mostly in the evening now. He feels the need to come every day and he always has something new to get agitated about when he visits. And sometimes he won’t leave our house until he’s got his way over something - like if he wants to give my sister cash for driving him to the hospital for an appointment or something. He’s recently offered to pay for all her petrol since she was made redundant.
I’m also looking after another uncle who has recently had an eye stroke. He’s lost the vision in his left (and unfortunately his better-seeing) eye. He has very serious problems and the loss of vision has resulted in him initially becoming suicidally depressed.
On the work front, I’ve got plans to update my office furniture and work upstairs out of the way when the weather gets better (we don’t heat upstairs in our house to save money) so hopefully the distraction from my uncle’s visits won’t disturb my work as much. My PhD is suffering!
Anyway, the uncle with dementia said that he had the written memory test at the GP. Because in his mind he thought he did ok, he has said he isn’t going to pursue a diagnosis or drug treatment. I don’t know whether I said, but I raised the issue with our mutual GP about his memory in confidence because I feared for his safety because he still drives and has had some near misses in his car. Maybe the GP initiated the discussion and that’s why he had the written test. Anyway, he is still adamant that he won’t pursue a diagnosis despite my efforts to explain to him that drugs might help him prolong what memory he has and they can put things in place to help keep him independent for longer. He doesn’t understand the implications beyond himself, such as driving or accidents in the house (he boiled a pan of cloths dry on the hob which might have caused a fire).
I’ve been discussing things with my cousin who has rung the GP to try and get some answers but few are forthcoming at this stage because of confidentiality. He’s coming to visit this weekend (but only Friday evening till Sunday morning) so he won’t see a great deal. I’ll try my best to voice my concerns in such a way that my cousin will understand how bad things are.
I’m trying my best to voice my anxiety about him to my family at hom. The problem is, they just seem to think that all we can do is “tolerate” things. But I am a believer that sometimes the biggest form of love is to help someone face uncomfortable truths, or be honest in order to be kind.
I’m struggling emotionally because I’m quite introverted and my home is a safe space for me, as well as where I work and I work full days on my thesis. When I’m trying to work in the evenings and I hear the doorbell ring, my heart just sinks. I love my uncle dearly and I can’t stand to see what he’s doing to himself.
My sister doesn’t mind the visits, but she doesn’t get them as often, and she benefits from him financially. Sometimes she can get quite short with me when I voice my upset as well. But she doesn’t have mental ill health like I do so she can tolerate much more. Plus, she’s reaping the benefits without putting up with the more draining aspects. I don’t mind her getting money, she has 3 kids, and I get my scholarship money. I just feel like no one understands why I’m so agitated. I can see his decline; I’ll gladly go to any appointments he has to make notes and help him, but how can you help someone who won’t help themselves? I don’t want to wait until it’s time to invoke the mental health act, I fear that it won‘t be as kind as it would be if he sought help voluntarily.
I’m at the end of my tether and I feel so cruel for feeling agitated.
 

canary

Registered User
Feb 25, 2014
11,616
South coast
I think this stage is one of the hardest and most frustrating stages (OK, they are none of them easy, but I personally found it the hardest) when there are problems but the person with dementia still has capacity.

I suspect that your uncle is not in denial as such - there is a little known (though very common) symptom of dementia called anosognosia, which basically means that you are literally unable to comprehend that something is wrong. My mum had this: I remember going with her to the memory clonic where the doctor told her, kindly, but definitely, and to her face that she had Alzheimers. By the time we got out she was saying - well that was a waste of time, I told you there was nothing wrong! o_O

You are never going to be able to have a reasonable conversation with your uncle and be able to get him to face the truth, because for him it simply does not exist. If you try and make him face it you will not be able to make him understand or agree and it will just make him angry or upset. It is one of the most frustrating things about dementia - they will not accept the very things that will make their life easier and allow them to stay at home for longer - its like shooting yourself in the foot.

Mum would not accept any help. I organised carers for her and she would not allow them over her threshold. She said that she didnt need any help because she did it all herself - yet one look at her home would have told you otherwise! Im afraid that you have to use stealth and fibs ( know as "love lies" or "therapeutic untruths") to get them to do things. And, yes, sometimes you just have to tolerate stuff, because they cannot change.
 

Sirena

Registered User
Feb 27, 2018
2,135
I am a believer that sometimes the biggest form of love is to help someone face uncomfortable truths, or be honest in order to be kind.
You can't get a PWD (person with dementia) to 'face the truth', because the illness means they simply do not have the capacity to do so, so please don't waste any energy on this. As far as they are concerned there IS no problem, and however you frame it they will not accept it, they will just become distressed or angry. Even if he momentarily did accept it, he would forget the conversation very quickly and deny ever agreeing.

The kind thing here really IS to tolerate and deal with it. There is no guarantee any medication would help him. My mother has Alzheimers and despite being seen early by the memory clinic, she was never offered any medication. We were just left to 'get on with it', fortunately she is able to self-fund care (she's now in a care home).

If you become further worried about your uncle's ability to drive, you can contact the DVLA to raise a concern, and they will contact him.
 

EmotionallyExhausted

Registered User
Dec 30, 2019
11
Hi; thanks for replying so quickly! It’s weird - he knows he has a dementia (which one we don’t know) - if you ask him, he’ll say “I have dementia”, but he won’t proceed to have a medical doctor confirm which type. He just seems to think that he can carry on with it indefinitely and just let it develop. I said to him that he could do things like drugs if it’s Alzheimer’s or see an OT ata memory clinic to see what practices he can put in place to improve/maintain things.
I will look up the symptom you mentioned and learn more about it to see if I can improve my understanding too.
I’m trying to delay the inevitable and make things as kind as possible for him - I do not want to see him sectioned, it would be incredibly distressing for him.
 

EmotionallyExhausted

Registered User
Dec 30, 2019
11
You can't get a PWD (person with dementia) to 'face the truth', because the illness means they simply do not have the capacity to do so, so please don't waste any energy on this. As far as they are concerned there IS no problem, and however you frame it they will not accept it, they will just become distressed or angry. Even if he momentarily did accept it, he would forget the conversation very quickly and deny ever agreeing.

The kind thing here really IS to tolerate and deal with it. There is no guarantee any medication would help him. My mother has Alzheimers and despite being seen early by the memory clinic, she was never offered any medication. We were just left to 'get on with it', fortunately she is able to self-fund care (she's now in a care home).

If you become further worried about your uncle's ability to drive, you can contact the DVLA to raise a concern, and they will contact him.
[/QUOTE]

Thank you, Sirena. My worry is that things will go down the sectioning route and I’m scared that it will frighten him.

I’m also scared to contact the DVLA for that reason cos I think he’d get distressed and angry too.
 

canary

Registered User
Feb 25, 2014
11,616
South coast
It doesnt have to get as far as sectioning - it didnt in mums case, although it may go as far as some sort of crisis. In mums case she had a TIA, ended up in hospital and went from there to a care home. If she hadnt had a TIA, though, then I think her wandering would have triggered it. While she was in hospital I found out that she had been going out at night, dressed only in nighty or dressing gown and knocking on neighbours doors in the wee small hours. That would have deemed her unsafe to stay in her own home too.

I would contact SS safeguarding and tell them about things like him boiling pans dry, so that he is, at least, on their radar.

Anosognosia doesnt have to be like my mum, who denied that there was anything wrong with her at all, but it can also be that they will admit to the condition, yet deny any of the symptoms.
 

imthedaughter

Registered User
Apr 3, 2019
194
There's quite a lot between this and sectioning, like a social services assessment, which you could request. And I would, if you haven't already, get his LPA sorted out. You don't need a solicitor and you don't have to be an attorney but something should be put int place now while he has capacity otherwise it could be very expensive down the road!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Thank you, Sirena. My worry is that things will go down the sectioning route and I’m scared that it will frighten him.

I’m also scared to contact the DVLA for that reason cos I think he’d get distressed and angry too.
[/QUOTE]
Please do contact the DVLA -but if you are uncomfortable with that ring the GP & explain your concerns & ask if it’s appropriate for him to still have his license
 

EmotionallyExhausted

Registered User
Dec 30, 2019
11
Thank you for the reassurance re: the sectioning, and I hope it never comes to pass. I will keep in regular contact with the GP in confidence. She knows about my caring responsibilities with my uncles. His son has LPOA, so he'll have to keep in greater contact with us about him, and I'll be sure to discuss things openly and honestly. I'd be afraid to contact social services, but I'll advise my cousin and let him decide. I suggested that he discuss the wider implications of seeking a diagnosis too (ie for the safety of others as well as himself). All this advice is so helpful, because I can then tell his son on how to proceed - it's pretty uncharted territory for us. My auntie (before she died of pulmonary fibrosis last year) was afraid to be in the house alone with him because of how precarious her own state of health was, so I used to come and spend full days with her and let her discuss her fears and she made him promise to go and get checked. He maybe masks more with us, whereas my aunt would see what was going on beneath the surface. I miss her very much, but I'm glad she hasn't seen how things are starting to decline further.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Thank you for the reassurance re: the sectioning, and I hope it never comes to pass. I will keep in regular contact with the GP in confidence. She knows about my caring responsibilities with my uncles. His son has LPOA, so he'll have to keep in greater contact with us about him, and I'll be sure to discuss things openly and honestly. I'd be afraid to contact social services, but I'll advise my cousin and let him decide. I suggested that he discuss the wider implications of seeking a diagnosis too (ie for the safety of others as well as himself). All this advice is so helpful, because I can then tell his son on how to proceed - it's pretty uncharted territory for us. My auntie (before she died of pulmonary fibrosis last year) was afraid to be in the house alone with him because of how precarious her own state of health was, so I used to come and spend full days with her and let her discuss her fears and she made him promise to go and get checked. He maybe masks more with us, whereas my aunt would see what was going on beneath the surface. I miss her very much, but I'm glad she hasn't seen how things are starting to decline further.
(((Hugs)))