Should I keep going to see my dad?

onlyroz

Alice_Walker wrote: »

I'm sorry but I can't imagine ever turning my back on a loved one when they were ill. How would you feel when the inevitable happens, knowing you'd not been there? I'm not disputing how painful it is to watch a loved one go through this horrible condition, but walking away should not be an option.

I really wouldn't be so quick to judge the situation of other people. My husband has valid reasons not to visit his mum beyond her not knowing who he is. After years of being largely ignored by his parents apparently it is now him who is neglectful.

Michtaylor09

Please educate yourself about compassionate communication. You have to put yourself in their world, not expect them to remember yours.
There is an online group called Talking Point. They will give you a lot of information.
IMO the worst thing you can do is stop visiting. He may not know who you are, but you know who he is...

Mr_Toad

Both my parents had/have dementia. My father passed away after two years in a home and my mother is currently in a home.

I helped Mum when she was Dad's carer, before he went into the home, then moved in with Mum to help her when she started to get to the point where she needed someone about.

I was fortunate that I worked from home which made it possible.

I did a carers course with the Alzheimers Society, one day a week for five weeks and it was very helpful.

One of the main things it teaches you is that once a memory is gone then it's gone, as if it never existed. It is absolutely no good playing the 'You remember' game and constantly reminding the sufferer on the basis that eventually they will remember. It does not work!

It would be the same as me constantly saying to you 'You remember when we were astronauts and spent a week on the moon.' You'll never remember it because it isn't true, they don't remember it because the memory is gone, erased, not forgotten.

People with dementia cope with this not being able to remember and the pressure to do so by playing along and pretending they do remember as this stops the relative from doing it. Press them too hard and it soon becomes apparent that they don't remember at all.

We were advised to lie to them. If they ask where their deceased husband or wife is and when they are coming to visit them don't remind them that they can't because they are dead as this will be like them hearing it for the first time and cause them the pain of loss and bereavement. Lie and tell them later today or tomorrow as they won't even remember asking the question let alone your answer.

When Dad died I took Mum to the funeral, when we got back to the home the staff were concerned about her. When they asked her how she was she said she'd had a love time at the baby's christening! Her great granddaughter sat on her knee though the service.

As a result of this advice my Dad and now my Mum were/are very happy.

I have seen so many distressed people in the care home made that way because relatives think they are helping by constantly going down the 'You remember...' route.

Some people who were on the course with me refused to accept that the memories were gone, it can be hard to accept but it certainly helped me and, as a result, my parents.

When Mum reached the stage where she no longer remembered who I am I stopped visiting as it upset her when I did go. She couldn't understand who I was or why I was there and would get agitated.

I still go to the home to drop off personal items and money for hair and lunches out, staff take some of them to the pub for lunch once every couple of weeks, and she is very happy. She doesn't miss me because as far as she is concerned I never existed.

Yes this is very painful for me but I said my goodbyes a long time ago and I'm not ashamed to admit that it still makes me cry occasionally.

I know some people find this impossible to do but in reality the visits are for them and not the person with dementia. It's about doing what they perceive as the right thing.

Dementia is a terrible illness that I wouldn't wish on anyone.

I hope this helps and I wish you luck with whatever course of action you decide to take and please don't let the judgement of others influence your decision.

GlasweJen

I think Mr Toad has a point, even if you stop visiting your dad because it's upsetting him I would still call into the home every once in a while with a reason of some sort to be there so that you can discreetly keep an eye on him from a distance.

FabFifty

Mr Toad - Thank you for this fantastic explanation. Brought a tear to my eye but very insightful.

Mr_Toad

FabFifty wrote: »

Mr Toad - Thank you for this fantastic explanation. Brought a tear to my eye but very insightful.

Sadly I have lived with the consequences of dementia for over 10 years. I am an only child and little or no other family so there was only me to deal with it.

What is so sad is what it reduces people to, they become a shell that looks like a loved one but the inner person is gone. It is also indiscriminate in who it strikes.

I had a privileged idyllic childhood with my wonderful parents and I would have loved for them to have spent their latter years with their memories intact. They have missed out on seeing their grandchildren grow into wonderful adults and have children of their own.

It has affected my children who were very close to my parents. My daughter and my Dad were inseparable when she was little. She used to go to work with him in the holidays, he had his own building and civil engineering company. She could make a bobcat and a JCB dance by the time she was 7, odd really because I was never allowed anywhere near one!

On the down side she also had some very colourful language, something Dad got endless grief about from Mum when she heard some of her more colourful comments. This despite the fact that I never heard my Dad swear.

troubleinparadise

You wouldn't make a person with a broken leg do a 10 mile walk.... So don't try to make a person with memory problems remember things!

My mum's dementia meant she couldn't remember how to do things, but could remember people, events and her bank balance quite easily - not all dementias are the same, nor do the same-named dementias affect different sufferers in the same way.

Whilst your relative might not appear to remember you, there may well be a sense of familiarity which can be a comfort. If a particular type of conversation is causing upset, avoid it. It is no good sticking by "our" sense of normal by not wanting to lie if by telling the truth you upset a person with dementia - what has been achieved there?

I had to run with the harsh truth that visits upset me because of the way things were, but did not upset my mum - and not going wasn't the answer to that.

There are no easy answers; I'd recommend the Alzheimer's Society website and forum for more information:

https://www.alzheimers.org.uk/

Mojisola

troubleinparadise wrote: »

not all dementias are the same, nor do the same-named dementias affect different sufferers in the same way.

This is really important - you have to find what is best for the person. It's worth trying a range of things that people will tell have worked with their relatives but, if it doesn't suit your relative, move on to something different.

Also, not everyone can cope with seeing a loved one disappearing into dementia. If you really can't - or if your visits upset them - accept that and concentrate on making sure they are well-cared for without actually having to visit face-to-face.

GwylimT

When my grandfather had advanced dementia we wouldn't have dreamed of pushing past memories onto him, as far as he was concerned we were some nice people who has come to have a chat or push him around the garden.

Pricivius

You've had some really helpful replies so there's not much I can add, but I would say this: the decision to continue visiting is yours and yours alone. If there is no way to visit without upsetting your dad, then I can see why it's not in anyone's best interests to continue. However, before I could make that decision, I would try all the options I could think of for making those visits work.

My step-father had dementia, although due to the many varieties of the illness, he never forgot who we were, so I appreciate that your situation is different. However, some conversation would upset him and some would make him laugh and some things he would love to do. I would say try anything and see what reaction you get; the strangest things can bring a positive response.

- kids' toys: my step-dad and I played with toys and balloons quite a bit. Just something for him to fiddle with and interact with. Something to touch and hit and stroke and make a noise.

- music: singing is a great way to interact. Just the tune, if the words have long-gone, was enough to bring a smile to my step-dad if it was from a favourite musician or tv show.

- limericks and silly poems: my step-dad seemed to regress to his childhood in many ways and he loved it when I read silly poems or nonsense rhymes to him.

Most importantly, as others have said, be in the moment. First names, no pressure, let's try some things and have some fun. It doesn't matter that you have no idea who I am or our shared history, it only matters that we can connect at least a little in the next hour.

Good luck with whatever you decide.