I am an invisible......

[DeMartin]

to my dad, the last time I visited him it was 7 trains and 3 buses. He doesn’t know me, he’s warm, safe and very well cared for in a super care home. Do I catch the first train at 05.30 and get home at 20.00, yes I will next week, can I do it as much as I want to, no. Why? Mum needs visiting, my house needs cleaning,OH needs loving, and..........
I want my memories of dad to be .......flirting with the nurses as they dressed his leg, drinking mocha supreme coffee in a cafe, eating ice cream on the beach in January.

 

[maryjoan]

I do not know how I will feel when my poor ould fella is in your Dads situation. Why do we visit? Is it for them? For the 'just in case' they remember us moment? In the hope? or is it for ourselves?

My poor ould fella's sister died in a care home 5 years ago - we used to go and see the shell of the person she was - she did not know, and it distressed us.

Will I do that for him, go ?

Or are memories better, when our person is no longer really there, or are they?
We will never know.........

 

[LadyA]

@DeMartin
No, you're not an "invisible". An invisible, as referred to on TP, are those who could be involved in helping with care, visiting, etc. but prefer to leave it all to someone else. Whether living close enough to physically visit regularly or not, invisibles are those who don't want to. Who are never available. Are too busy even for a phone call with the primary carer to enquire how the person is. From your posts on here, this is not you!

 

[Selinacroft]

Different Lingo here MaryJoan- think Helicopter! (arrive very seldom, cause a lot of noise and disturbance and then take off again)

 

[nae sporran]

Helicopter, that describes my OH's daughter perfectly Selinacroft. (you have to smile sometimes)

 

[Mary thompson]

to my dad, the last time I visited him it was 7 trains and 3 buses. He doesn’t know me, he’s warm, safe and very well cared for in a super care home. Do I catch the first train at 05.30 and get home at 20.00, yes I will next week, can I do it as much as I want to, no. Why? Mum needs visiting, my house needs cleaning,OH needs loving, and..........
I want my memories of dad to be .......flirting with the nurses as they dressed his leg, drinking mocha supreme coffee in a cafe, eating ice cream on the beach in January.

 

[Mary thompson]

Hard but he knows you are there holding his habpnd well done for making the efert your a star xxx

 

[Duggies-girl]

Invisibles have their own lives to lead and are usually very busy and sometimes quiet important. Often they work five days a week so they like to keep their weekends and evenings for themselves. They have other commitments such as family and hobbies even which take up their time. They frequently need me time and short breaks.
Invisibles are usually lucky enough to have have other less busy (in their eyes) family who are able and willing to care for the PWD so the invisible can relax with the knowledge that the PWD (often an elderly parent) is being well cared for so they need not feel guilty.

 

[canary]

Invisibles have their own lives to lead and are usually very busy and sometimes quiet important. Often they work five days a week so they like to keep their weekends and evenings for themselves. They have other commitments such as family and hobbies even which take up their time. They frequently need me time and short breaks.
Invisibles are usually lucky enough to have have other less busy (in their eyes) family who are able and willing to care for the PWD so the invisible can relax with the knowledge that the PWD (often an elderly parent) is being well cared for so they need not feel guilty.

Plus of course, carers dont have to do anything much more than a bit of extra washing, cook food for an additional person, make tea or coffee and sit and chat. I mean, how hard can it be?!!!!!
And if they are in a care home it mean you dont have to do anything!!!!

 

[Lavender45]

Invisibles have their own lives to lead and are usually very busy and sometimes quiet important. Often they work five days a week so they like to keep their weekends and evenings for themselves. They have other commitments such as family and hobbies even which take up their time. They frequently need me time and short breaks.
Invisibles are usually lucky enough to have have other less busy (in their eyes) family who are able and willing to care for the PWD so the invisible can relax with the knowledge that the PWD (often an elderly parent) is being well cared for so they need not feel guilty.

Apologies if anyone thinks this flippant, but Duggies Girl you clearly know my sister. You only made one small typo, little sis works 4 days a week not 5. You've described her to a T!

Demartin I promise you there is a world of difference between yourself and an invisible. Invisibles like my little sister couldn't give a hoot. They are wrapped up in a protective bubble which lets them think it's ok to ignore the fact that their person with dementia is deteriorating fast or to turn a blind eye to how much the carer is dealing with and the sacrifices he or she is making. So long as none of the challenges of living with or dealing with dementia are left on their doorstep they can tell themselves all is right with the world. This doesn't seem the slightest bit like you to me.

 

[Bunpoots]

Invisibles have their own lives to lead and are usually very busy and sometimes quiet important. Often they work five days a week so they like to keep their weekends and evenings for themselves. They have other commitments such as family and hobbies even which take up their time. They frequently need me time and short breaks.
Invisibles are usually lucky enough to have have other less busy (in their eyes) family who are able and willing to care for the PWD so the invisible can relax with the knowledge that the PWD (often an elderly parent) is being well cared for so they need not feel guilty.

You must know my brother too. Last time he saw dad, at a family bbq at my house, he told me he was too busy to see dad at the weekends as he'd just bought himself a boat and a warehouse .

This doesn't sound like you Demartin.

 

[jugglingmum]

Well - the description of working 5 days a week is certainly a typo as far as my brother is concerned, he got made redundant years ago and had inherited money from an elderly aunt (I was cut out of will - long story) so hasn't worked again.

Moved mum near me, so it is a 4 hour round trip for him, he owns a car, comes once a year. He was always too busy with his life before mum was ill, only saw her once a year then, she saw me every 6 weeks (she travelled here, as her house was barely habitable - she was a hoarder - another long story), but I rearranged my life to fit her in when she came, as kids got older this got harder, but kids love her and love seeing her, and can wind the clock back for half an hour when she comes.

Ironically before she got dementia, mum used to be desperate to see brother, however now she is still with it enough to be aware of what I do and what he doesn't do, I know this will change.

 

[eddiesgirl]

To my mind, it's a matter of priorities, and this was what surprised and disappointed me about my invisible bro.

I know he did love our little Mum and doubtless found it hard to deal with her diagnosis, but she wasn't so much low down on his list of priorities as not on it at all. Granted, he lived an hour-and-a-half's drive away and wasn't in a position to have any practical involvement in the caring side of things, but the one thing he could have done was make a regular commitment to come and spend time with her, maybe ferry her round a bit to local scenes of her earlier life & childhood. (She was unfailingly sweet & never difficult to manage, and I'd never have simply 'left him to it.') But this would have involved setting aside most of one day every 6 weeks or so - one day of his free time that, come the designated day, he might have wanted to use for something else.

So what she got was the odd hour or 45 minutes (an appalled carer told me about that one) maybe twice a year tagged on to a visit up this way when he came to see his friends. Fair dos, he always visited on her birthday.

It was the affront to Mum that hurt me most - that, and knowing that he ran around like a mad thing after his wife's parents. (S-I-L told me after her father's death, straight-faced, that "He couldn't have wished for a better son-in-law." Ooooooh, the temptation......!)

Funny they were both keen to be involved in all the socially-visible stuff, like hospital visiting in her last, short illness, and introducing themselves all round at the funeral, which I'd had to organise single-handed while fielding emails from said S-I-L reminding me "it's important that everyone feels they have a voice in the service."

Sorry about the rant (surprised myself there.) I don't often look back in this spirit, but doing so now only confirms how really dreadful their behaviour was, both by omission and commission.

 

[northumbrian_k]

My wife's only son is so busy that he can't even telephone us, although his mobile is surgically attached to his ear. He prefaces each rare email (to me, not his Mam) with a tale of where he has been, how busy he is and so on. He is a true Invisible not like @DeMartin who clearly cares greatly about his Dad.

 

[MaryH]

Had an interesting dinner last night at my brother since a cousin was visiting from out of the country. This is the 3rd time my SIL saw Mom and I in 2 years and 10.5 months since Dec 30 or so 2014... My BIL's mothers funeral, my nephew's coming home with his first serious girlfriend from abroad (and she was trying very hard to impress them too for some reason) and last night. I think she saw Dad twice since he skipped the funeral so just nephew's dinner and apparently once in hospital.

My SIL wanted to impress the cousin and was saying all kinds of things about she telling my brother he should visit mom more like last time telling my nephew she told my brother to go and walk with dad every day when he was once a week when we are lucky.. Dad is mid stage Alzheimer and Vascular Dementia (3.5 years ago with MCI) and has a stroke Aug 22 where he is paralyzed on the right side.. Mom has recently been diagnosed with Vascular Dementia to and is frail from a heart attack 4 years ago. I had to deal with Dad, Mom, moving them to a single floor flat and cleaning out and fixing their house with some help from my sister and minimal help from my brother..

Brother thought we could declutter their house in 4 weeks, fix the house in 1-2 weeks with Mom and Dad moving to a hotel (where his wife's family have stayed for months at their house over multiple years) and sell the house with them in it... I know it was not workable with PWD and dad only left the house 8 times in 2 months prior to that of which 7 was for medical appointments and 1 for their anniversary brunch... Brother got upset with Mom deciding to move after he persuaded her not to for about a week that he "lost all inclination to help us declutter, pack, move and fix mom and dad's house". So he did almost nothing for about 6 months and did not visit Mom/Dad till 48 hours after they moved (after in house for 38 years) since he was helping his 19 year old daughter to do an assignment and they are 10 minutes by car.

I lost my temper and said outright that that I have been asking for help for over 2 years and once a week is not enough under the circumstances and he left me to do 70-80% of the stuff and once a week with the current circumstances is not enough. He promised to call for evening medication check for mom and did it twice a year ago before stopping without a ward. A recent request for him to resume evening medication check got a "duh you are crazy, you live with Mom"... He sourced a meal a couple of times and stopped.. Shopping which he could add to what he does for his own family and take 15 minutes to drop it off was done 2x and stopped. I am pretty sure my SIL knowingly tried to take advantage of me and told him that he does not need to do them since I would not let Mom and Dad suffer and if he does not do it I will.. I turned traveling project since I can see that with their low involvement, either Mom and Dad will suffer or I come back after 12-15 hours of travelling and working 40 hours in 4 days to a pilling list of to-dos for Mom and Dad and likely drop dead from exhaustion after a few months.

So how does one motivate an invisible??? I am at a lost and have been biting my tongue for over a year and half now since I wanted to say a lot of stuff but while all true would damage the relationship..... Like my SIL is a Bitch of the first order (and I was brought up to not speak poorly of others). I just wanted to shoot straight for a change but stopped short of speaking what I really want to say.. My cousin was saying their 4 siblings got together and took care of their mom for 14 years and it is hard but we need to get together and do it.

 

[love.dad.but..]

I had two invisible sisters as well...lack of interest in all things dad his care ..his financial affairs...summed it up most of the time! Has continued in their lack of wanting to maintain contact with me in the 9 months after his death...just minimal in acknowledging that I am finalising dads affairs and I have tried so hard to keep them interested...so just have to accept we are family but very different ideas on being a sister. Both mum and dad plus my twin brother are no longer with us so only half the family it was but frankly I feel like the only one left!

 

[Prudence9]

Duggies girl you have described my brother to a T!

DeMartin, this is not you, you obviously care deeply, why else would you even post?

Sympathy to and empathy with all who have posted, I intend to have nothing to do with my invisible when my caring days are over.

 

[Duggies-girl]

I am lucky in that my dad has some very good neighbours and they all have my phone number. They don't interfere, they just keep an eye on him and one helps him with his bins. None of them has a good word to say about my brother as he rarely visits and is in and out within a few minutes (he is known as the minute man)

I doubt he ever gives a thought to how dads fridge is kept so well stocked or even whether there is food in there. How does it get there?

Does he wonder if dad ever has appointments to be kept (quiet likely for an 88 year old with declining memory) Who takes him?

Does dad need tablets and if he does how does he get them?

How does dad get his money out of the bank? (considering he does not know how to use a cash point) Does dad even have any money?

Dad can no longer drive so how does he get to these places? perhaps he uses the bus (if dad managed to find the bus stop he would forget what he was looking for before he found it and then forget where he was going and why)

Is dad a bit lonely when he has nothing to do but watch TV? Perhaps he would like some company for a couple of hours or a trip out for a pub lunch?

Does dad need a haircut? no never needs a haircut, gets done by magic.

Perhaps he phones dad, No, I check his phone for calls and they are nearly all from me or a couple of old friends who still call him.

Still he needn't worry about dad as he knows he is well cared for. Dad is fine on his own and is no trouble to him.

 

[eddiesgirl]

But little Mum said to me, "You make me feel safe." She gave me the priceless gift of her absolute trust every day.

This is what the Invisibles will always miss out on, and I think on some level they know it. (And they know we know they know it, although most of us are far too polite to say.)

 

[Duggies-girl]

But little Mum said to me, "You make me feel safe." She gave me the priceless gift of her absolute trust every day.

This is what the Invisibles will always miss out on, and I think on some level they know it. (And they know we know they know it, although most of us are far too polite to say.)

Yes @eddiesgirl you have summed that up perfectly and yes I am too polite to say anything.