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Your tips: what advice would you give to someone who fears they're an invisible?

Scarlet Lady

Registered User
Apr 6, 2021
96
0
Don’t hang the carer out to dry. Even if you feel there is very little you can do to support on a practical level, keep in contact with the carer (and also with the PWD, where possible) just to ask how things are going. Offer what support you can, even if it’s just a friendly ear. Families are so often terrified by dementia that they prefer to close their minds to the person living with it and the carer(s) affected by it. This is cowardly. And as @olddog said, telling the sole carer how wonderful they are does not cut it in any way!
 

Annie27

New member
Jul 13, 2021
1
0
In my experience most invisibles are quite happy to stay that way as long as someone else is keeping things ticking over. Phoning or sending text messages to demonstrate their concern doesn’t really cut it. Apart from practical & consistent help, social interaction with family & friends is what’s really needed for someone with dementia even if only for a few hours a week. If a picture is worth a thousand words, then a deed is worth a thousand pictures. Show your respects to someone while they’re alive & can enjoy them rather than the reverse!
 

Lellyboo

New member
Aug 20, 2021
1
0
Make sure you can look after yourself and be able to step back to look at what’s happening as you can just loose yourself within the caring.
make sure you are doing what the person needs to be done and not what they want. I realised my husband could do things for himself and was unmotivated or just wanted me to run around! For example the three cups by his side he moved eventually. Remember if you don’t use it you loose it and I give him jobs he can do safely.
 

Bernard SS

New member
Sep 11, 2021
2
0
1. Dementia is a word not real it is not a reality.
2. If dementia was a reality everyone's dementia would be exactly the same.
3. people with dementia are perfect exactly the way they are.
4. Never visit a person who you have been told has dementia.
5. visit the person you care about and maybe love.
6. If you do not visit the person do not make yourself wrong.
7. if you make yourself wrong this may affect the way you are being that person the next time you visit.
8. My memory is not as good as it was when I was younger.
9. I cannot recall people's names, I cannot recall what I was going to say quite often now.
10. I am 80 years old now, my brain has been functioning for 80 years without service.
11. If you use a computer you will realize that the computer has a storage capacity.
12. if your computer's storage capacity becomes full, delete some information, create more storage space.
13. The mind records without the operator being aware of every human being's experience.
14. Can you imagine the size a hard disk in a computer would have to be to store all the information a human being receives in 80 years.
15. My invitation is that you take care of yourself. Don't dwell on things such as making yourself wrong or thinking you should do more et cetera et cetera.
16. There is nothing wrong with me because I cannot remember, forget things, not as quick as I used to be, there is nothing wrong with someone who has what they call dementia.
17. Dementia is a word created by medical experts to explain a symptom the patient may be suffering from.
18. That person who you think has dementia is still exactly the same person that you have always known, they may not recognize you they may not know who they are however they are still the same person.
19. My invitation to you is to go to Byron Katie's website the work and discover how to have the freedom to be with someone who they say has dementia.
20. This is the joke about life. You have never seen that person who you say has dementia. And they have never seen you.
21. They were never like you thought they were, you were never like they thought you were.
22. Everything, everyone exists as a fragment of our imagination of who they are.
23. It's time to give them a break allow them to be who they are now, you may wish they could be different be the way they used to be.
24. Have you ever wanted them to be different than they are? More loving, kinder, or were they perfect before.
25. My invitation to you is to give them the space to be and do exactly how they are being and what they are doing.
26. My invitation to you is to give yourself the space to be and do exactly how you are being and what you are doing.
27. nothing I have said in this blog is true or untrue do I believe or not believe it is said simply to bring about an enquiry over there with the reader.
Have a great day or to be precise have a great moment as when you get to 80 years old you may become aware that each moment is all you have and they may not be another one.
Bernard
 

CAL Y

Registered User
Jul 17, 2021
107
0
My husbands daughter’s visited him twice in the 6 months since the dementia diagnosis.
A month ago he was diagnosed with terminal cancer and suddenly they wanted visiting rights whenever they said so.
When I eventually lost it and told them exactly what I thought of them it caused a huge rift.
I am now the bad guy.
 

VladimirBigorra

New member
Sep 10, 2021
1
0
Advice No.3 - Don’t be chatting to family carers without respite about what wonderful social life and holidays you have… If you can make time to have a social life or go on holiday, you can make time for family carers or actual caring. Don’t say you’re busy with work or other excuse…

If you can do those you’d be helping!
Advice no.3 really struck a chord with my situation. Family who can't be bothered to make a 10 mile round trip to visit PWD after coming out of hospital following a nasty fall, but can be bothered to make a 100 mile round trip to show off their new motorhome. Sadly, some people only seem to care about themselves.
 

Dort1

New member
Jan 11, 2019
1
0
I'm the sole carer for my Mum, who lives in a care home now with what has become advanced stage dementia, as I was for several years previously when she was still able to live in her own home with less advanced dementia. My siblings have played almost no part at all in her care at any point. They do both currently now live abroad, so being physically present in not now possible, though in both their cases the decision about where to live was one they had some choice about. I don't resent that, however. What I have found hard is their unwillingness to engage in any meaningful way with my Mum's care at any point. My early suggestions about them helping were responded to but so half-heartedly there was clearly little point in pursuing it, for example I recall asking one of them to help my Mum choose meal options from a list when I was arranging delivered meals for her at her home. Now that Mum is in a care home the emergency visits when she could not make her heating work etc, the liaison with the Police and Court appearances when people defrauded her, the time she set the cooker on fire and so on and so on are all in the past. I did all that alone too.

There is a lot with easy electronic comms and systems that can be done remotely to help a main carer. For example, handling finances, handling the dreaded heartless automatons at the DWP, checking in by email or phone with the home or carers and sharing the results, helping make decisions about aspects of her ongoing care as her health changes, keeping in touch with Mum's friends and family for her, and so on. And last but not least keeping in touch with the person with dementia. And chasing things up (goodness knows there is an endless amount of that !) It has all been left to me.

Judging from what friends and family have told me about their experiences in similar situations, this is not uncommon. And, if by some freak chance of fate, one of the siblings is reading this, I'd also add that telling the main carer that you really appreciate what they are doing periodically does not cut it !
(This is not specifically in response to the above.......haven't posted before and couldn't work out how to do it!)
I would like to send out some love and sympathy to all the other invisibles out there.
As seems to be the general flavour of many of these posts, we are always accused of having it easy/not caring about the pwd or the carer/self indulgent etc etc.
Have you ever asked yourself what it's like to live 100's of miles away from your loved one with dementia?
Knowing you can't be there straight away if something happens to them or their situation escalates, be there to share the load with the family carer or maybe God forbid, because you just miss them and want to see both of them?
Endless worry because you know they both need a lot more care and support than they have or will allow?
Not being able to just 'pop in' at short notice for a chat and a cuppa or take either of them out for a few hours for a change of scene?
Unable to regularly stay overnight for carer to have some respite, pwd to have some different company, some extra practical help and you to worry less?
Being able to do some nice, familiar things together, (albeit in a different way) when your loved one with dementia looks or sounds worn down, fed up or upset?
When they have difficulty with remembering you or your situation because it's unfamiliar to them?
When professional services never contact you with updates, or to keep you involved and informed about things that have happened, despite numerous pleas to the contrary?
Being snapped at by the family carer when trying to have loving and honest conversations about your concerns regarding certain things with both the carer and pwd? It's not a criticism of their valiant efforts but they seem to forget or perhaps feel undermined that a fresh pair of eyes and being one step removed from the day in, day out reality of the situation, can be really useful.
The holier than thou attitude from those who not by default but complete personal choice, (despite going offered several alternatives) wish to be the main carer, whether living directly with the pwd or not?
Being ordered by the family carer to do certain tasks for the pwd, rather than spoken with or discussed?
Being treated like an uncaring stranger because you may be unfamiliar with certain new habits or behaviours with the pwd and sometimes because you feel the family carer is deliberately keeping you out of the loop?
Issues with financial affairs and personal differences as to how this is looked after or spent?
Being made to feel guilty and that you don't care because you're constanly reminded of how little you visit and that phone calls to talk to your loved one aren't the same?
Sorry to sound upset and bitter but please be mindful of the tone of your conversations to those of us who are unable to change our day to day situation and try to understand what our perspective's like sometimes, despite your own difficulties.
Sometimes we tell you about things our kids have been up to, or other nice stuff not to be unthinking, selfish or insensitive but just for a change and so that the conversation isn't always all about the pwd. It's communication of a different sort and can sometimes help all feel connected.
For what it's worth and despite being told not to, I actually think it's right and worth thanking the carer and showing somebody your appreciation for all that they do in an essentially, thankless job. A bit like regularly reminding your nearest and dearest that you love them.
 

Sarasa

Volunteer Host
Apr 13, 2018
3,891
0
Hi @Dort1 and welcome to Dementia Talking Point. I think you have made some very valid points. It's all too easy when Dementia strikes for families to fall out over how to care for loved ones, and the help various members give can be a real bone of contention. My husband and his siblings nearly fell out really badly over getting their best help for their mother and as an outsider I could see why. Fortunately they seem to have been able to talk through their problems but there all still times when tempers flare. Using things such as texts and WhatsApp groups doesn't always help because it is so easy to misinterpret what someone has said, or to not reply when someone thinks you your have. Both those things have happened in my husband's family recently.

Edited to add.
Do have a look round at other threads, and maybe start your own. This is a very supportive and welcoming site.
 
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Violet Jane

Registered User
Aug 23, 2021
393
0
Yes, it's interesting to hear the perspective of an 'invisible'. I do think that invisibles really underestimate how undermining and criticising it can feel when they chip in with a 'why don't you......?' or a 'have you thought about......?' Invariably, the carer will have thought about these things and ruled them out because they are not possible / not available / not practical / too expensive / too inconvenient etc. The suggestions often involve extra work, which the invisible will not be doing.

As for living hundreds of miles away, well, you can use some of your holiday entitlement to come and stay for a couple of weeks a year to help out or to give the primary carer some respite. That might mean cutting out a holiday or cutting down family time but if you really want to help you have to make sacrifices, as the primary carer is doing all year round. It's easy to come up with excuses. As they say: actions speak louder than words.
 

Melles Belles

Registered User
Jul 4, 2017
883
0
South east
@Dort1 you make some good points. There are ‘invisibles’ and then there are ‘invisibles’.
Some invisibles can only give limited help due to distance, health or other family needs.
Then there are those who won’t help, maybe hinder and/or just can’t be bothered. They do come out of the woodwork and throw their weight around when it comes to their inheritance though. We’ve got plenty of those across my husband‘s family to contend with.
 

Duggies-girl

Registered User
Sep 6, 2017
2,886
0
@Dort1 I can sympathise with someone who lives far away and I am sure that you do your best when you can but the fact is that almost all of the invisibles complained about on here do not live far away. My own invisible lived around the corner from his dad. I understood that he worked and had a busy social life but he could have popped in to see his dad for more than ten minutes every couple of weeks and he could have asked his dad how he was, instead of talking about himself the whole time. I know that this is what he did because I was always there at dads doing something.

My invisible could have offered the occasional bit of help so I could get a day off but his time was valuable, mine wasn't so I was stuck. He could have shown some interest in something other than 'how much money is dad spending' It would have been nice if he had asked why dad was losing so much weight, it would have been nice if he had visited dad when we had 'the beast from the east' and dad was frozen in, after all it was a five minute walk for my invisible but he was too busy. I know he didn't visit because I moved in for this period.

He couldn't be bothered and didn't care. He cared very much when dad died, he cared about how much money was there, how long would it take to get it and once he got it he was very happy and life was good. That was over a year ago and I haven't heard from him since. He is and always was a true 'invisible'
 

Violet Jane

Registered User
Aug 23, 2021
393
0
Yes, when a relative who provides no actual care questions why money is being spent on care or respite it's a reasonable assumption that s/he is primarily interested in his/her inheritance and is wilfully refusing to recognise what the PWD needs and what the primary care is doing. That in turn means that s/he is not facing up to the reality of the PWD's illness - and it's very easy to do that if you don't visit or visit very rarely and don't listen to what the primary carer is telling you.
 

Phil2020

Registered User
Oct 11, 2020
19
0
"What advice would you give someone who fears they’re one of the ‘invisibles’ - not around enough to help support a family member with dementia?

For example, they may be worried they’ve not:

  • Been able to visit often enough
  • Contributed as much time or money as they should
  • Helped to make decisions about the person’s care
  • Known what to say or do to support the person who’s doing most of the caring"
My guess is that some of us with invisibles - I have three all living withing ten or fifteen minutes of mum and I - don't recognise the 'invisibles' as characterised by the question.

My invisibles don't - in any respect 'fear they're one of the invisibles' - and certainly would not 'welcome advice' from me or anyone else as to what they might do to support their, our mum.

They are absolutely intent on 'not being around enough to help ...'.

No aspect of their 'invisibleness' worries them.

Nearly four years ago my sister - a nurse - knew precisely what she wanted to say to me. "you're nothing, you're no-one, you're not important".

I don't resent for a moment the support I give mum. But I will never forgive the invisibles for their behaviour.

I recognise that some people live far away from those that need support; or that some people have so much going on in their own personal lives that giving support elsewhere may be a stretch too far. I think it's wrong to characterise people who fall into such categories as 'invisibles'.
 
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Yankeeabroad

Registered User
Oct 24, 2021
19
0
Some thoughts:
1) thank the primary carer and emphasise how lucky the PWD is to have them around!
2) always ask if it’s a good time to speak when calling. So many times people ring while chaos is erupting around me.
3) Offer to be a place for the carer to vent if necessary. And that means listening and sympathising about how tough it is (and sometimes seeing the funny side if appropriate) but not judging or suggesting another way to do things. SMS/WhatsApp/IM are great for this sometimes.
4) offer to do something specific to treat the caregiver. Order a takeaway for delivery if you think their having a tough day for example.
5) again — thank the caregiver and tell them what a great job they are doing in a difficult situation.
 

Duggies-girl

Registered User
Sep 6, 2017
2,886
0
Nearly four years ago my sister - a nurse - knew precisely what she wanted to say to me. "you're nothing, you're no-one, you're not important".
Spot on @Phil2020 my invisible never actually said those words but he did say 'I do work you know' and 'we work hard and deserve a life' I apparently was worthless as I didn't work (gave it up because dad needed full-time care and was also very ill)

4) offer to do something specific to treat the caregiver. Order a takeaway for delivery if you think their having a tough day for example.
5) again — thank the caregiver and tell them what a great job they are doing in a difficult situation.
@Yankeeabroad Those are those great ideas, especially no 5 but a 'thank you' is not in my brothers vocabulary. My SIL (a nurse) once said to me 'if you ever need to offload, you can always ring me' I would have liked to offload a fat lip and a black eye to her but I never had time.

I don't see them anymore.