I am an invisible......

[love.dad.but..]

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 and at Dads end of life the day before he became unconscious it was my arm he stroked, my face he smiled at, My hand he held and they are final memorable moments of my dear dad my two sisters will never take comfort from and I know in my heart I could not have done any more for my dad than I did I made no excuses of why I couldn't I rolled up my sleeves and got on with it...my sister's know they didn't and there will come a time of reflection in the future when their lives aren't so busy that I hope are filled with regret...mine won't be.

 

[Kazzy2016]

To eddies girl and friends

You sum it up so neatly.
We all have “invisibles” inthis sad journey, and we all get to the stage of wanting to express anger at them.
Mine never ask how I am when they bother to get in touch, there is no monetary help yet they travel often.
However they miss the trust that those we care for have in us and will never share in the good times that do briefly occur.

Just remember to keep smiling.

 

[mitz]

Post deleted.

 

[Duggies-girl]

@mitz

I think you have got the wrong idea of what an invisible is, you certainly don't fit the description of an invisible and neither does your sister. In fact you have both been very caring, especially in giving up your job. I am just hanging on to mine part time but I don't know how much longer I can keep it up.

My invisible sibling is fully aware of the situation but chooses to ignore my predicament and that of the PWD (his dad) because to be honest he is not interested and has better things to do. He spends a lot of his spare time on days out at the coast because he and his wife enjoy long walks and pub lunches and spending time together (can't blame him for that I suppose) but couldn't he once in a while take his dad with him or even share a cup of tea and a chat.

To be fair he did say that he could do my dads shopping online and have it delivered to him but he would not put himself out have lunch with dad. He can't wait to get out of there and does not even take his coat off. Like you I do everything for my dad and I feel that as he is not too bad yet it is a shame.

That is not a happy medium but it could be if my brother shared even a little bit of responsibility

That is an invisible.

 

[love.dad.but..]

I feel I should defend some of the 'invisibles' who I feel are sometimes given a rough deal. I guess at the beginning of my mum's dementia journey (diagnosed last December but problems before then) I might have been considered an 'invisible'. I worked full time in a stressful job and had a 4 hour daily commute. I also used up all my annual leave and one day of each weekend on mum going with mum to medical appointments and stocking her fridge, cooking etc. I was also allowed to work 1 day a week from home which enabled me to make phone calls etc. My sister, who's a stay-at-home Mum to a teenager whos at school, managed other appointments etc while I was at work. However she was soon unable to cope as her son has special needs, and after she had a bit of a meltdown in which I was accused of caring more about work than mum, I gave up work with the intention of working part time. I had hoped we could share responsibilities with me working part time Id be able to help more but still support myself. Its absolutely not an easy option to give up ones income. People work for a reason. In my case Im single, self-supporting and have a mortgage. But i did give up work. The part-time never materialised because once I was in place caring for Mum I was left to it. I am now here 24/7, dont get any respite, have no income and can't sleep for worry about how I'm going to end up: no savings, no job and no home. Thats why the invisibles cant give up work. Seems there's no happy medium. There's no support for part time. You either be a hated invisible or you give up work to care and end up left with nothing right when you come into retirement. If there was more support for carers to work part time or get respite

and they too could live a balanced life, there would be no need for the sometimes awful predicament of the invisibles. Sometimes really they are stuck between a rock and a hard place. This dementia is rough for everyone but if carers were better supported to work then it could be less destructive.

You are not the invisible to which many of us refer. My take on invisibles are those close family members particularly who often have the time, ability and can easily help spread the load for the main carer in small ways but choose not to get involved...often not at all. Not even a phone call to the main carer to see how they are coping, do they need anything even if just a chat to offload if nothing practical can be offered and often invisibles don't even ask about the pwd. Months and Months without any contact ...lack of interest, worried that they may be asked to help, worried that they can't face seeing or hearing about the decline of the pwd..I don't know why....all understandable maybe but someone has to take on the challenges and care. We can all do only what we can do and some are more capable or have more opportunity than others but it shouldn't be just one person's load...if practical help isn't needed or cannot be offered just sharing the mental load with phone calls is a help.Most of us have difficult circumstances to work around and have to often make life changing adjustments to care for a pwd and not everyone can do this but generally they can still show they care and still show an interest and maintain contact. Invisibles slip off the radar for months...my 2 sisters. I gave up trying to keep them involved but I still don't understand how or why they distanced from Dad...he was our dad after all.