Hand Hold - Stress and Upset over Father's Decline while Pregnant

[CLazz92]

Hi all,

First time posting here and this whole process is very new to me so please be kind. I'm mostly just looking for a hand hold and bit of comfort as I'm having a tough morning and don't know who to reach out to.

My father has recently been referred onto a specialist clinic regarding his cognitive decline. I'd noticed for a while that he struggled to remember words or 'find the right phrase' but he constantly put it down to 'getting old' (he's 73 this year so not exactly doddering). He's got progressively worse, and it's now very hard to hold a conversation with him. He's forgetting to do things (take medication, turn the stove off, go to appointments), throwing away important letters and generally misremembering things.

We finally got him into see a GP a few weeks ago (my sister in law took him, as I live around 5 hours away) and apparently he scored very highly on a test they did and has been referred on to a clinic (as I'd said earlier), but got told this can take up to a year.

His decline seems fairly rapid. I'm 6 months pregnant, having a little boy and we have settled on a name for him. I've told my dad this repeatedly but he accuses me of not telling him I'm pregnant, or tells me I've never told him the name before. I'm trying not to let it bother me and I just brush it off and happily tell him that, yes, I am pregnant and we're having a boy and I'm sure he can't wait to meet his granddad. I'm doing all I can to facilitate things; I've been doing the 5 hour drive each way to his every weekend to clean/batch cook and generally care for things. I can't go midweek because of work and midwife appointments.

I just feel like I'm getting rapidly burnt out by it all and I've had a smile on my face for months, and this weekend when I was down it was just all a bit much and I feel like I can't hold it together this morning at work. Probably doesn't help that I am pregnant and my hormones are through the roof 😆but I have been sat sobbing over my laptop for the past hour. I'm sure I'll pull up my big-girl panties soon enough and pull myself together but today feels especially hard.

I should say that my husband is supportive and tries to help but as we are so far away, I think he struggles to know what to do for my dad without being close by.

It's upsetting to think that this is essentially just the start of it all and I should probably make the most of this time because, realistically, it's only going to be downhill from here. And yet I feel like a failure because I'm already struggling!

As I say, I don't really know what I want from any of this except perhaps a bit of a vent and a hand hold/virtual hug from someone who understands. Thanks!

Oh what a difficult situation, particularly him not remembering he's expecting a grandchild. Could you give him a reminder , like a photo of you and bump and the due date, so he is reminded every day and so less likely to forget between your visits?

Regarding day to day support and help for him. He / you dont need a formal diagnosis to access support for him , but with soooo much going on for you definitely prioritise what's going to be most important. You won't be able to do everything just focus on the most important things for you and him. ( these might be little things and might not be what other ppls main issues would be).

And yes there is definitely grief knowing that the person you love will ( and has ) change and the uncertainty of how that will happen . Its one of the hardest things with dementia, so make sure you alow some you time to decompress and acknowledge your feelings and have a good cry . Sounds like you have a good family network ad well which really helps. Just please pace your self so you don't risk burn out.

Thank you so much for your kind message and advice, I really appreciate it.

I assumed you needed a formal diagnosis to get help, so that's something I can look into. I also like the idea of sending him a photo - we have a family group chat on Whatsapp where I frequently share messages and pictures but he always forgets to charge his mobile, or never checks it when it is charged. Which is sad because he was always really into tech! I might start sending him a letter or card once a week or so with a photo in it if I get a bunch printed off.

I have considered maybe looking at getting a cleaner to come once every week to keep on top of things, and I'm in the process of getting quotes for a gardening firm to come do a big clear out of the garden so we can make it manageable and low-maintenance. That'll prevent me having to do a deep clean every few weeks, especially as I assume it'll get progressively more difficult to do that as I get more heavily pregnant/have a baby to take care of, and hopefully if the garden is nice he can enjoy sitting out there with a coffee.

He's fiercely independent (and also very much a shy home-body, always has been) so convincing him to accept help in his own home, especially if it's seen as something that's because of his age or condition, is really tricky.

So hard if you and he's really young too. Regarding foods. Have you looked into Wiltshire farm foods. My dad loves them. He stopped doing much cooking after mum died. My FIL has them too. They deliver them to your freezer and you can just microwave them.

Thank you for the recommendation - I'll have a look at them. He used to love cooking, but mostly stopped after my mum died a few years ago.

We got him set up with Hello Fresh boxes in an attempt to bring him back to enjoying cooking for himself, and he does seem to enjoy seeing what's on the menu that week and when I call him up midweek he'll tell me he's made himself curry or whatever was in the box.

I think if I notice that the cooking is becoming a bit of a chore/a struggle for him I'll go down the nice microwavable meals route.

Do contact locally alzhiemers society, they have different services in different places but some have a befriending service that might suit your dad. It's for one on one social support or think try and look for a helper / befriended rather than a carer at this stage. You don't want to take skills away from him but if anyone can help him do what he can do that's great!!
Social services should be your to do list as well but do pick your battles and priorities!

I think you need to take a breath and try and slow down a little. As you say this is just the start of it. And ime it’s a marathon, We need to pace ourselves ( been there , done it and I wasn’t pregnant and have a lot of holiday leave) Îd concentrate on getting as much help in as possible as if it is dementia he will need it ( and so will you) and the sooner the better . So a cleaner,/ home help shopping delivered / meals on wheels etc. You need to protect yourself and your little family too , it’s a long haul and you risk wear ing yourself out if not . Good luck OP

Big hug. My dad is 68 and got formal diagnosis when my baby was a couple of months old. It sounds like he’s earlier in the journey than yours but I find it incredibly upsetting, particularly thinking about eg how he will miss out on seeing his grandson grow up / his grandson won’t know him for who he is. It’s just really hard

I can only begin to imagine how upsetting this is for you whilst you're PG. unfortunately his reality is that he hasn't been told. I think it's lovely that you're gently telling him again. Have you read Contented Dementia by Oliver James?

I think a photo of you PG with the name and due date is a good one but I think I would put it in a frame and pop it onto his mantelpiece so it's in his eyeline. It sounds as though he's part the stage of looking at phones or iPads and maybe reading letters.

I think you're doing too much too. Lots of things you're doing can be bought in.

Hello Fresh is nice but I wouldn't rely on him saying he's cooked a meal. People with memory loss will often tell you that they've eaten things or been to places when they haven't.

If you're already batch cooking and leaving food for him I think the time might have already arrived where he needs meals delivered. A PP mentioned Meals on Wheels. Definitely see if they have a service like this in his area. I always think that they are usually one step on from what you'd like to admit to yourself

Have you and your DSis got POA for both health and finance? I'd see if he will agree and sign this weekend. The forms are pretty straightforward and having these will really help. You need them doing before he gets a diagnosis.

Has he got Attendance Allowance? If not, I'd make that your second priority.

If you call them and ask for the forms to be posted they will backdate it to the day of the phone call if it's awarded. You need to be honest on the forms. He needs help with preparing food, drinking, taking medication, getting to appointments etc. You don't need a diagnosis for AA as it's based on need.

One thing that might help is to download the NHS app for him so that you can see any upcoming appointments.

All of this takes time but makes life easier on the long run.

Can you get in touch with the Carers Hub close to your DF? They will have a good idea of what help is available locally.

You also need to request a Care Needs Assessment. Make sure that you're there though when they carry it out if you can be as your lovely DF will have no memory of the chaos they this awful disease is causing. They may be able to arrange things like carers, daycare, respite care etc.

I'd also fill in, and keep on your phone, the Herbert Protocol. It's a very useful document if your DF were ever to go missing. Would he agree to something like an AirTag on his keys?

All of this is a lot. It's a lot to organise and fill in but I think it might be a better use of your time than cleaning and batch cooking