Angry Dad with dementia - tough to visit

[Getitgirl]

I think I’ve found my people 🥲

My lovely dad, who is in his mid 80s, was finally diagnosed with vascular dementia before Xmas. My mum and I had noticed a steady decline in his behaviour/mobility etc since covid times. Following multiple hospital admissions, social services finally swept in and he has been in a v. nice care home since new year.

I am in my early thirties, single and have just taken a new role in a nearby city (90 minute drive away). I have been coming home at weekends - partly because I have a flat there and partly to see him and provide some moral support for my mum. Yesterday was another terrible visit.

Dad is so angry. There is no conversation only demands for meals and drinks. Most of the time he is sleeping or nodding off and the moments he is awake he is barking orders at my mum and me/care home staff. This is exacerbated by his profound deafness, but he refused hearing aids several years ago and is now painfully frail despite having a powerful temper still!

Yesterday’s visit left mum and I in tears. He was annoyed we were talking and then annoyed when we weren’t because we weren’t administering food and drink quickly enough(!) Put simply, it’s like dealing with a grown toddler having a tantrum. I’m so sympathetic to his ailments - there are sooo many - but I feel the need to look after myself too. The man I describe isn’t my dad IYSWIM, he just sounds a whole lot like him.

I’m wondering whether it’s doing me/anyone any good if I maintain my weekly routine. Coincidentally i have several weekend trips planned with work and friends over the next month so I won’t be ‘home’ for the next few weeks. But I don’t know whether I reinstate my visits once they have passed. I know others will relate to that feeling of it being a duty and nothing else.

Any advice on how I navigate this? I know it’s the dementia not my dad, but being shouted at is reminding me of his ferocious tempter in my childhood and it’s hard to separate the two! I don’t want to leave another visit and have to sob in my car on the regular. Equally I don’t want to look back and regret not going more often. Please help.

Understand completely. Would only say that your mum probably needs all the support you feel you can offer.

Put simply, it’s like dealing with a grown toddler having a tantrum

That's exactly how I would describe the hard times

I'm sorry op it is so tough grieving the person they were while they're behaving completely out of norm for themselves
It's harder on the family than the person (imo)
Be kind to yourself and try to remember it's not him. It's a horrible illness and I wouldn't wish it on any family. Take all the help you are offered too xx

Does he know you anymore? I think it’s important to strike a balance between visiting enough for your own sake, but not so much that it’s counterproductive for your own wellbeing. Would he remember that you have been? If not, I would consider cutting g back. You can support your mum in other ways such as spending time with her alone.

I've got no experience of this OP but want you to know that my friend is going through the exact same. She visits her dad just to check he is being treated well and leaves.She can't bear it.

Her mum died a few months ago but rotates her visiting with other family members who do exactly the same when they get there. So check all needs are being met and leave - unless he is in a good mood - then leaves when he's not.

I'd say you need to focus on the impact on your mum. You don't want one of you "going under" as a result of him. Do what his behaviour (within reason) permits you to do. Its not your job to put up with abuse and fot it affect your mental health x

What does your Mum think? Presumably she will continue to visit on her own if you felt you don't want to go weekly. Do you spend much time with just her or do you always have to be with your Dad?

She must be quite a few years younger than him and so probably welcomes the "break" of being in the company of younger people like yourself. I think you should give each other permission to be kind to yourselves in these particular circumstances.

I came on to second maintaining visits for the sake of your mum. Take her out once a week for a coffee. Dementia is a cruel dist and robs people of their retirement plans. It can be worse for the partners.

For your own sake I'd say no, don't visit. It isn't helping you - or him, from the sound of it.

But presumably your mother will still be visiting, and you might want to support her, if not every time maybe at least sometimes? Talk to her about it.

Thanks all.

To those asking, my mum and I are close and I see her separately every time I’m home. We do other stuff besides visit and check in regularly. She visits dad during the week (andhas a similar reception from him and no, he won’t recall who has or hadn’t been). She has encouraged me not to go if it’s to my detriment. But I still wrestle with the guilt.

As you have a natural break in visits coming up, I'd suggest not making any decisions now. It's often easier to get a clear view when you're not right in the thick of things, so have the break and then reassess after that.

Maybe decide that you will see him every other week after the trips?

Still regular but a bigger gap between visits. You can still see your Mum.

Hearing loss is a significant factor in dementia
Too late for your dad but a warning to others to get it treated asap

Yes I agree hearing loss can contribute to the risk of some types of dementia. However vascular dementia is caused by high blood pressure and atherosclerosis (narrowed blood vesels due to fatty deposits etc..) smoking caused my dad's vascular dementia.

But hearing loss causes social isolation which is a big problem.

My DF has Parkinson’s and dementia. I visit him about once a month. Today he was in a throwing things and trying to kick people mood. It’s very much toddler trying to get attention mode. I don’t think I could cope with visiting every week even if I was near enough to make it possible, I go som don’t feel guilty if/when anything happens. I don’t think either of us really get any benefit of me visiting more often as DH is very much in his own world a lot of the time, even with DM. Try every other week to start with and see how you feel after that.

Sounds like too much to me. I do sympathise. My Dad didn’t have dementia but he had a nasty temper anyway and when he was terminally ill he was so foul to my Mum when we were visiting in hospital that I decided to cut short one visit and take her home. It was awful. On the one hand he was in a frightening and terrible position but he was shouting at us, claiming we’d ignored calls (we hadn’t) and all this on a general ward. I just decided to prioritise my/her that day as the visit wasn’t going to get better.

It's sometimes helpful reflect on what your dad would have wanted when he was still fully "himself".

We get very caught up in responding to the current problems and trying to make things better for the person with dementia as they are now.

But in his current state, your visits may just be providing him with a different face to shout at, and not really improving his day.

If you could go back in time to when he was fully himself, would he want you and your mum to visit and be shouted at?

Once MIL no longer recognised me and couldn't remember her last meal never mind the previous week I didn't feel bad about missing the odd weekly visit. It didn't seem to be of any benefit to MIL who would give me five minutes and then head back to the lounge. It was very much a duty, if it had any benefit it was as a performance of family interest for the care staff. In your shoes I'd be enjoying the next few weekends away and then ask your mother what she feels is the best thing to do.

Your visits are more for your mum than dad tbh. I went through this with dad. Vascular dementia left him an empty shell of the amazing man he'd been. We were fortunate that there was little anger (tho I wouldn't have blamed him if there had been). Largely sweet but non verbal. Very hard work to soend time with, but I look back and am so glad I did. He lived in he same town as me so I saw him most days. He lived at home with mum and a carer, so there was a lot to physically do for him. At least you are spared that bc your dad is in a home.
All cases are different, but his condition will kill him OP - a matter of time, possibly not much. Id continue going while you think it's helpful to your mum. And for your own eventual peace of mind.
Only my opinion based on my experience.

What @Mosaic123 says.

In its crudest terms your DF has been altered by dementia to be a new version of his former self. It sucks. He will probably converse with around 10 different staff members across his waking day, so he is getting a variety of human contact and he's not directing his frustration at anyone of those people relentlessly. The 'stress' of him is shared by the team.
He is not alone, so if you don't visit him, he has someone else to bark orders at and will see far more people had he been with your DM at their place. The care home in these trying and difficult circumstances is the best place for him.
Both you and your DM will be carrying a huge amount of stress, guilt and worry. The months prior to you DF going into the care home will have been tough emotionally. In the nicest possible way, you and your DM need a break from him to recharge and replenish your strength. Now he is safe and as settled as he probably will be, you and you DM can dial back the visits until you feel better able to handle them. You and she are the important ones going forward. You need time and space to process the changes and so going as frequently to the care home isn't giving you this time. I say this as someone who had 8 years of visiting care homes so you meet an awful lot of families going through these periods.

And also what @Knotaknitter says. If he is unaware it is you, then take time off.

That’s a good point about how much interaction he’s getting with staff etc, @Mum5net There is also a big roster of relatives (more local than me) who pop in, so I’m under no illusions that my presence wouldn’t be missed - by dad at least. Weirdly his anger seems mostly directed at mum and me and there’s that worry that we’re now ‘the enemy’ but honestly we have no idea what’s going through his mind. Thank you for including me and my mum in your post, too.

Many friends etc will default to asking me about my mum (totally understandable!) which I appreciate, but I want to scream that I’m also losing my dad and that isn’t easy either. Ironically mum is used to receiving calls from his sister et al that only ask about him so we’re both experiencing the different side of the coin.

Agree with the poster who said taking a break will help. I will reassess how i balance how awful these visits are with how much I want to be present now there is such an obvious decline

She has encouraged me not to go if it’s to my detriment. But I still wrestle with the guilt. I would take up the offer and not go. It’s not doing you any good and it sounds as if it’s not doing him any good either