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

[HarrietD]

Every issue our magazine includes real life experiences, and they'd like to hear from you.

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

Feel free to share your thoughts below, and they may be featured in the next issue of the magazine.

Thanks everyone

 

[Violet Jane]

1. Don’t criticise what the primary carer is doing (s/he will be trying his/her best).
2. Make concrete offers of help rather than vague promises (and make sure that the offers suit the primary carer rather than just you).
3. Don’t swoop in and put a lot of things in place that can’t be maintained by the primary carer once you’ve gone again (eg a regular class or trip out).
4. Don’t minimise the PWD’s problems (eg ‘Oh, it’s just old age’; ‘it’s just Mum’s funny little ways’; ‘Mum was always a bit forgetful and disorganised’); the primary carer wouldn’t be doing what s/he is doing if it wasn’t necessary.

 

[Jaded'n'faded]

Ask the hands-on carer what would help THEM.
Say, 'How can I help/support YOU?'

And LISTEN.

Believe the carer not the PWD!

 

[Sarasa]

I think if you are worried you are an invisible you are half way to helping. We were very aware that we didn't do as much as the other children for my mother in law, but we lived furthest away and my husband was still working full-time. We did do a few remote things and tried to make sure we were available when needed to cover holidays etc.
Do ask what is wanted rather than what you think is needed. My brother in law was the principle carer for his mum and one sibling thought getting a cleaner in would help them both. MiL hated it and BiL ended up having to pick up the pieces. When help was essential it took a long time to persuade him it was necessary.
Do be careful when replying to emails. My brother really made me cross by telling me to chill when I sent him an email outlining a lot of problems our mother was having. I'm sure he meant it in a supportive way, but it didn't have that effect! As @Violet Jane says it doesn't matter if you can't do much, but do do what you promise. Again my brother let me down on several occasions when I could have really done with him visiting my mother as he'd promised.

 

[nae sporran]

Don't tell the carer what to do. Listen to them telling you what is being done.

 

[Violet Jane]

Very, very good point, nae sporran.

 

[jennifer1967]

to take time and take an interest in whats happening. this can be done at any distance. and feeling like the carer can phone them. in other words two way communication. try not to try and fix the issue the carer might have as it might not be fixable

 

[marionq]

@Sarasa ”do what you promise to do “ is very good advice. When I found myself by default responsible for my sister in law I hoped that her blood relatives would step up to the mark. Full of generalised offers and goodwill but nothing I could pin them down on. In fact two relatives who stepped up and did some visiting had never made any promises . I was very grateful for their help.

 

[Starting on a journey]

Don’t be invisible! Step up to the mark.
Ask what is needed and help, even if it’s limited ….just a few days off in a year would make such a difference to carers!!

 

[Duggies-girl]

Ask the carer how they are, let them talk and listen to them. Don't change subjects or try to brush things under the carpet, it won't help the carer. All I wanted my brother to do was take an interest in his dad and ask how things were going. Just having him listen would have been a great help, I knew he couldn't help much but just an acknowledgement that there was a problem would have been wonderful.

 

[jennifer1967]

to be led by the carer

 

[PatRayH]

Mums invisible daughter lives in Spain but criticised me for not talking to her and not letting her know what was happening. No support or sympathetic ear. For instance what would be the point in telling my sister that ..'mums loo was blocked again and that I had to call dyno-rod, ask neighbours to let him in, speak to a dyno-rod engineer on his mobile phone to encourage him to enter when confronted with an upset PWD'.....when shes in Spain thousands of miles away.

 

[HarrietD]

Thanks so much everyone for taking the time to reply. These are all brilliant suggestions so far.

 

[olddog]

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 !

 

[InElysium]

Advice No.1 - The one overriding advice has been covered in previous posts. Concrete. Promise.

Above all, if you’re wanting to offer to help, only do so if you can and will make the time and effort. If you think there is a 1% chance you might cancel / change plans, don’t offer.

I look after both parents and make precise care plans that I know are achievable. One with dementia, one with limited mobility. What I despise most of all are excuses and last minute cancellations. That is the reason why I have managed for so long by myself. Zero respite. I don’t complain about lack of respite because I’ve done it for so long. I don’t have commitments elsewhere.

Everything goes to plan with contingency. What I hate is a third party plan that results in cancellation leaving no time for backup arrangements.

I don’t need to hear anything, if you want to offer, it has to be 100%.

Advice No.2 - carers without transport. If you have transport and can provide transport for a carer for shopping or appointments, that is invaluable. Subject to above advice - be reliable.

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!

 

[Duggies-girl]

Don't plaster pictures of your nights out, holidays and meals out all over facebook. It is not appreciated and is thoughtless.

This is what I would add to Advice No. 3 above.

 

[Carlyken]

I completely know the situation you refer to I also have a sister in law who lives 100 miles away can never pick up the phone to enquire how her only surviving brothers health is he has very advanced Dementia and l l his wife is his sole carer ,when she does on the rare occasion give a call its to tell of their countless holidays and of the attention that they give to a widowed neighbour its not sour grapes on my part but a little understanding of our situation we have not enjoyed any social outings for the last 3 years ,and like so many since Covid our home is the only place we see , Why l ask myself do some people seemingly abandon you when Dementia strikes we are still the same people and care because we love

 

[olddog]

Advice No.1 - The one overriding advice has been covered in previous posts. Concrete. Promise.

Above all, if you’re wanting to offer to help, only do so if you can and will make the time and effort. If you think there is a 1% chance you might cancel / change plans, don’t offer.

I look after both parents and make precise care plans that I know are achievable. One with dementia, one with limited mobility. What I despise most of all are excuses and last minute cancellations. That is the reason why I have managed for so long by myself. Zero respite. I don’t complain about lack of respite because I’ve done it for so long. I don’t have commitments elsewhere.

Everything goes to plan with contingency. What I hate is a third party plan that results in cancellation leaving no time for backup arrangements.

I don’t need to hear anything, if you want to offer, it has to be 100%.

Advice No.2 - carers without transport. If you have transport and can provide transport for a carer for shopping or appointments, that is invaluable. Subject to above advice - be reliable.

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!

I agree 100%. If people really want to help then make a truly firm commitment. If people want to feel better about themselves by pretending to help they actually make life more difficult for those that are commited.

 

[Roxbyterrace]

When siblings or other family say they will ‘support’ you, clarify what that means. If you are the main Carer and perhaps have long distance family sit down and agree who is responsible for various aspects to support you. Sometimes all that happens is they state the obvious, think the odd days in a year are a great help and don’t actually know what you need long term. Make clear what you need and expect. They may ask stupid questions when you need something ordering for mum. Question why mum keeps buying the same things, even if they are cheap, harmless and give her pleasure. You know that having 100 puzzle books and a drawers full of batteries, sweets and little teddies is not bothering anyone but those detached from the situation. You do get frustrated at times and can quickly be accused of having a meltdown and not coping. They might think that so and so ‘having a chat’ with mum is better than anything you can do. They likely won’t have read and studied as much as you will have done. Or seen the many facets, varying moods and random behaviours you have. They will insist on arguing with the loved one rather than validating their reality. You know that you are on your own, and invisible, until your loved one has a fall, needs hospitalisation or presents a safeguarding concern. This is when the ‘supporters’ suddenly become experts with amazing hindsight on preventative strategies. And whatever you try to do, it’s possible that you will always be ‘bad cop’ to your loved one while those dropping in and giving them a little holiday or day out are bloody wonderful. There can be times where you really need to share an awful episode but also something quite funny without being unkind. This sounds negative but caring is not a competition, you do it because you love somebody and even if you don’t, there is empathy for those we care for / look after with the condition many of us might end up with. The way I see it is watching someone walk away from you down a tunnel. They know you are there but at some point will stop turning around to wave.

 

[Scarlet Lady]

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!