I am scared and need help pulling up my big girl's panties

[Frazzledmummy123]

Having read so many posts on here by people going through so much worse, I feel like a bit of a fraud on here however I don't know where else to turn.

My dad is going downhill in so many ways and I am struggling to manage my emotions with it. Over the past 5 years since his downturn started, he has gradually lost most of his mobility so doesn't get out much (inaccessible house, see previous posts for more info). Nowadays, he just sits sleeping in his armchair when we visit, and seems quite spaced out a lot of the time.

He lives with my mum who is his carer, and I suspect dementia however this will not be faced up to which is really stressful to deal with. My mum is queen of denial, I have no siblings and wider family are pretty useless.

Today, he was in a bad way. He didn't look good, could barely keep his eyes open, and was very confused, including mistaking somewhere he took me as a child for taking my son, and he also thought it is Christmas Eve.

I know I need to pull up my big girl pants and deal with it. However, it is so hard and I am really struggling to watch him going downhill like this. I know things aren't going to get any better which is scary. Obviously I realise it will be much scarier for him (and my mum), but I have never felt so out my depth emotionally and just needed to vent in a safe place to people who understand.

It IS scary when you suddenly have to carry an emotional burden for you parents. Practical stuff - although exhausting - is one thing. Seeing a deterioration and being unable to do anything about it is something else. How often do you see your parents, are you physically close?

My mum was similar when my dad was ill - her anxiety made her snappy and unpleasant to me when I wanted to get help for him although when he eventually got a diagnosis (after every other test/procedure had shown nothing of concern) I realised that there was nothing that could have been done for him anyway.

I've no real advice but lots of sympathy and this is a great space for support.

Get him checked for UTI immediately. This can cause the symptoms you describe. DParent developed sepsis after a UTI and nearly died.

Obviously dementia is a possibility, but please call doctor and have his urine checked.

It's does sound like a UTI

I'm another suggesting get him checked for a UTI. My dad was rambling on about how the government were trying to force him out of my childhood home - they moved out in 1986! After antibiotics he was back to normal.

What do you want to achieve here OP?
Do you want to offer more support or do you think your parents need outside help?
Most older people want their lives to continue as normally as possible, for as long as possible. People with mild dementia are often better in a familiar home environment.
But, it's so much easier if you can have conversations around their expectations while they're still well enough to fully engage with you.
Do you have power of attorney for them?

I'm feeling your pain, we had this with an elderly relative, and there's no easy answer.
I echo a pp, get him checked for a water infection, it can cause a lot of confusion.
That said, you've described a gradual deterioration over the past few years, so it may be time for further help or at least a review.
We found that the relationship reversed, our parents needed a lot of support.

It isn't a one size fits all solution, and there's no easy answer, but keep on posting.
x

I’m not feeling upset about my father’s deterioration, maybe I’m just callous, maybe I was too busy trying to sort things out for him, but what I find gives me comfort is that he’s not distressed, and that there are still flashes of the old self, he’s still in there somewhere.

There will be good days and bad days. It won’t always be as bad as today. Look out for the good moments, try not to dwell on the bad.

Think you do need to put your big girl pants on not so much to help your dad but to help your mum. My dad has dementia, not too bad at the moment but it won’t get any better. My mum refuses all help but is slowly letting us do things. The chemist mucked up his medication so I’ve not taken that on and sorted out normad boxes and delivery. My sister has been doing their online shopping. Me and my sister in law have been giving the house a quick clean and other siblings now starting to do small things from taking the bins out or whatever but we have had to increase it slowly and never mentioned it. Now we’re looking at getting them a carer and cleaner but again we plant the seed and by the time it’s needed we have everything in place. I’m luck that myself and my siblings and all our partners are all on side and all working as a team. My nephew is training to be a painter and decorator so he’s going to start decorating their house ‘for experience’ another nephew is a carpenter who happens to have ‘spare’ grab rails the list goes on. It will get hard especially if you have to do it alone but speak to social services and go from their. I’ll be calling them in the new year for a chat.

Thank you everyone for all your words of support and advice. I appreciate them all.

To those who suggested a urine infection, I will get that checked out, however there is previous of similar (and he didnt have a UTI then) so not sure if that is the problem.

To the pp who.said about helping my mum, and online shopping, etc. I habe tried to get this arrabged however without meaning to drip feed, my mum can be very difficult and refuses online shopping because she isnt seeing what she is getting, etc. She refuses a lot of help as normalises things that need addressed. Excessive tiredness becomes just his age and cites family friends whose husbands fall asleep in front of TV. A fall which clearly happened due to him not using a walking aid was the 'rough pavement' or shoes he was wearing.

I do try to help best I can, however when my mum is trying to normalise everything that is impossible.

Immediately thought UTI too. Confusion a major symptom.

It's such a shame your mum is the queen of denial, as this is really your stumbling-block to being able to help much. But getting old, it must be frightening to acknowledge how much your quality of life can deteriorate.

She has probably got used to normalising your dad's situation in her head, as a way of coping with it, especially as all these things creep up in tiny incremental ways from one day to the next (boiled frog syndrome).

In a perfect world, you'd somehow manage a conversation with her to find out what the current burden of care is on her (it sounds as though he is "easily managed" if he just sits in a chair, but might he be wandering and falling in the night?), what she takes for granted (but may be too much) as part of her role "in sickness and in health", what her fears are about making any changes, etc. However, in real life these conversations can be extraordinarily difficult to have with someone who doesn't want to have them.

Good luck OP

Sometimes you have to pull rank. "Well I know you're not worried Mum, but he's my dad so I'm going to find out more about this / speak to the doctor. I'm concerned about him. You're going to have to let me do this, if only for my own peace of mind."

Maybe put it to your mum that it's impossible for a single person to be household manager, nurse, carer, wife, companion and more 24 hours a day and it might be a smart move to outsource the tasks that are less enjoyable so she can give more to the ones that really matter. It would be a gift to your dad if she could do that. Only she can be his partner, lots of people can do the other stuff.

Another way of approaching your mum might be to suggest that if she had more time/energy/whatever she could concentrate on doing things with your Dad that they both enjoy. At the moment she has probably backed herself into a corner by doing everything she can herself. You don't realise how much this is taking out of you till you stop doing it.

My DH is terminally ill and I have just recently arranged for a carer to come in every morning to get him up and dressed and provide a bit of company. I felt bad about this because it was something I could perfectly well have continued doing myself. Two weeks in and the benefits to both of us are huge. I'm no longer the one who does the heavy work and has to deal with the 'I don't want a wash/breakfast today'. Everything is left clean, tidy and put away which has reduced my frustration levels enormously. I get to do more of the nice stuff for both of us, as I now have time and energy for it. He gets the benefit of a new face to chat to, and someone who is experienced in different ways of doing things who can offer ideas.

Hi OP

When your kidneys cannot flush waste, it causes a build up of toxins that enter the brain and cause dementia type symptoms. My dad suffered with it numerous times in the last years of his life.

Sending big hugs, its hard. Be gentle on yourself.

But getting old, it must be frightening to acknowledge how much your quality of life can deteriorate. It is. It’s a one way journey to life imprisonment with no choice about basic things like what to eat, when to go to bed, walking in the garden when you want.

Thanks for this. Obvious when you think about it, but I hadn’t twigged the mechanism for UTIs causing confusion

I had similar. In the end, I approached adult social services and it ended with one of my parents being sectioned for assessment.

What is their home like? Is it suitable for people with their needs? I suggest it might not be suitable for your dad and his mobility problems and that your mum is refusing to accept the actual situation - it could be that she fears losing her home to care costs if your dad needed to go in a home, for example.

There's no really good answer here, but you need to look at what would be hardest to bear. Your dad being neglected because your mum doesn't think she needs help would be hard to process in years to come - lots of what ifs there...

And I was terrified of standing up to my parents. Honestly, they needed help.

This is a really positive way of framing why some additional support now might be a good thing.
Aging is inevitable, but doesn't have to be incapacitating. With the right equipment and help, remaining fit and well and at home can be prolonged.
Sorry to hear about your DH MontyDon

Thank you @Beamur.

For the OP, one of the most helpful things for my DH was a riser recliner chair. He can rest comfortably in it when he wants but he can also get up much more easily and he's considerably more mobile as a result. It has freed me up from getting drinks, taking to the loo, and generally worrying that he may not have everything he needs all the time.

We got ours from CareCo who have a variety to try - this is important as they need to fit the person they're for. They can be quite expensive but perhaps it would be a good joint Christmas present from the rest of the family?

We've had a lot of help from the local authority in providing various bits of kit to make life easier and safer, some were obvious (like half steps at the back door) and some I didn't even know existed. These were all arranged after a visit from the OT from the palliative care team. I don't know how you access this without the palliative team's involvement but adult social services might be a good place to start. You might be able to get your mum onside for this if you emphasise the safety angle - if she's blaming his shoes, pavements etc for his unsteadiness it makes sense to get his home environment checked out for hazards.

Good luck.

All of this is worth considering.
My DSis and I used to trot out sayings to each other’Path of Least Resistance’ and ‘Least Worst’.
Putting it rather sadly it is the beginning of the end, so remember it is perfectly likely you will be grieving your DF and DParents for the way they were as this unfolds. Be kind to yourself. You don’t need big girl pants, you are sad for the inevitable