I am starting to struggle with this whole Alzheimer’s thing!

[Fairytoast]

Sorry, the title is crap but I just didn’t know how to word it.
I’m 49 and I feel the last 6+ years of my life have have been a bit shite.
Started with DS (now 16), refusing to go to school, he was overwhelmed with anxiety, often said he wanted to kill himself. I struggled to get him to school each morning (often he wouldn’t go), had the attendance officer on my back all the time, no one to help as dh was at work, constantly asking the school to help but all fell on deaf ears. I said ds was probably dyslexic but school has only just acknowledged this the last few months......
Eventually, I got him counselling outside of school and he’s slowly turned a corner.
Then my MIL becomes unwell with a bowel tumour, fought it for 4 years but passed away 18 months ago (I sat with her in the hospice after she passed, thought that was a good idea at the time but has kind of haunted me ever since as I have huge existential fears).
Then 4 years ago my lovely mum was diagnosed with Alzheimer’s. If it wasn’t bad enough that she is bent over with painful osteoporosis, has heart disease and a pacemaker and chronic lymphocytic leukaemia, she gets dementia!
Although mum is still in the late early stages, dad does not cope well. He relies on my sister and I a lot. Calls or facetimes me most days. He is 80. He won’t have carers in yet as mum says she will kill her self if she has to have help in. So between my sister and I, we help almost every day. My sister works full time so she does what she can. I work part time as a PA for a disabled lady. I pop round to my parents most days (they live around the corner from me) and I do all of mums paperwork work, hospital and doctors appointments etc. I arranged for my mum to go to a day centre once a week and used to take her there, although she has currently stopped as she doesn’t like it. I cut and polish mums nails, I wash her hair twice a week. It won’t be long before we will have to help her wash too as she is struggling with that (dad ‘helps’ but he’s not doing it well), I do their all their washing, change their beds and wash the sheets etc.
I have my own health issues and am also probably in peri which isn’t helping. Currently having iron infusions which is making me feel crap.
I’m drowning a bit, feel so tired. Physically tired with helping out with so much (of course I do it because I want to but it’s exhausting), I am mentally tired remembering the appointments, remembering things like washing mums hair etc as well as my own families things.
But more than anything I am emotionally tired as I don’t want to watch my lovely mum who was always there for me and was always my understanding friend slowly becoming a shell of herself, I hate that she can’t remember anything from 15 minutes ago, I hate that one day she won’t know who I am, that she thinks she is on holiday and not in the house she has lived in, that we grew up in for 47 years.
I hate everything which comes as a package with this bloody horrible diseases.
And that’s it.
Don’t know why I posted that rambling but just want to reach out to anyone who may understand what I am experiencing.
Because it’s bloody crap and none of my friends understand and COVID has shut many doors for us just at the time when we really needed help.

That sounds very tough. It's all about you looking after other people; your son, your MIL, your parents, your PA job..... Nothing in there about you.

What's your financial situation? Do you need to do the part-time job? You have the equivalent of a full time job with that and your parents.

What's your parents financial situation? Could you get some help with the housework; changing the bed, running the hoover round, dusting, doing some washing and ironing. They could be their at the same time so your Mum feels more reassured about the situation. Meanwhile, you could focus on the appointments and admin.

At the end of the day, something needs to give or you are going to burn out. You need some time for you. You need time to go for a walk or a massage or meet a friend for coffee or do some sewing or whatever you want to do. I think having someone to offload to (someone you pay rather than a friend) would be really helpful and help you to put things in perspective.

Sounds like you are doing a very good job for everyone else but not yourself and that needs to change.

First contact social services for a care needs assessment. If your parents are self funding that will give you a basis to engage with care companies. If it's LA funded great, they can sort it (you mannered to push). See also cleaner/gardener/ironing service. You need to outsource as much as possible and not feel guilty about it or your own health will be wrecked. Ignore any matyrs who tell you they would consider it an honour etc 99.9% of the time they are full of bullshit.

Having outsourced as much as you can you will have the energy to sit and chat, take your dad put for break etc which is just as valuable as the hands on care.

Your DM will not kill herself if your DPs get a cleaning lady.

That won't help with the sheer grimness of what's happening to her - nothing will really change that IME, but at least it will get the laundry done, and get your DF some company.

[thank] I'm so sorry for all you've been through.

The toughest stumbling block my sister and I have is my dad. He is in complete denial over the situation he is in.
My sister and I have sat down with him with plans of action etc and one day he says yes let’s go for it, next day he back tracks.
I have arranged for them to have a carers/needs assessment 3 times, he agrees to it only to cancel at the last minute.
I know mum won’t kill herself if she has a carer etc but she gets so distressed and upset that dad will get angry at us and say no, it’s not happening.
Dad has a vast amount of money in the bank but is scared to spend any of it incase mum needs to go into a care home, he worries if they don’t have the money (he has ££££’s).
It’s such a sticky situation and my dad has started to naturally expect my sister and I will come in every week and do stuff like the laundry, cleaning, wash mums hair etc without really questioning it. He knows we are both stressed and he knows that it’s because of their situation but chooses to gloss over that and will say I’m stressed because I have teen children etc or tells me it’s my carers job and I should give it up (don’t know where he thinks I will get the money from if I don’t work?)
We have left things for a week or two just to see what happens and it was madness. Mum had no underwear left, her hair was greasy and unkempt, the house was a mess. There was washed linen in the basket which stank because he’d started washing it, pulled it from the washing machine then forgot and it sat in the basket festering.
We have become martyrs in many ways but only because if we take a back seat nothing gets done.
Dad would rather be pottering in the garden faffing about in his shed than actually doing anything in the house, That is partly because he’s in denial, partly because he’s scared and frightened of the situation and also because he’s a stubborn old git and he thinks it’s my mums job to do all these household things like she used to but of course she isn’t capable any more.
It’s a bloody crap situation and if we get firm with him he just digs his heals in and gets stroppy and very nasty (he’s been like this all his life, not a new thing!).
I know we need to sit down and have a plan of action but we also need dad on board, without his agreement it will just become a nightmare situation.
How do others with a stubborn parent cope? Surely we aren’t the only ones in this situation?

You need to stop doing so much. Its clear your parents are in a position to fund whatever help they need, so they should fund it. Do nothing, and if it all goes to shit get social services involved. I bet your father wouldn't expect his children to do everything for them if he had two boys.

Sorry you're going through this, it sucks. Maybe your Dad needs to hear it from someone 'official', like a social worker, etc. His pride is getting in the way of your Mum's care, and I think I would involve them now, as he's clearly not going to do anything to help. He's had your Mum looking after him all his life and now doesn't know how to look after her.
If you can, try to put some emotional distance into the actual issue, get help, and don't let him or anyone else make you feel guilty. Good luck!

My mum is on her own now and in denial about her dementia and the help she needs. It's hard but sadly sometimes things won't move forward without a crisis.

I feel for you and am in a similar situation although my stubborn parent is the one with declining memory so starting to be more amenable. The other parent buries their head in the sand. Have you got power of attorney set up? I have just done this after months of talking and "thinking" about it so that is a relief. Would you ask your father to meet you half way with a cleaner to start with. Slowly introduce someone so they get used to the idea of help. Sell it as a way of remaining in their home and keeping a level of independence.

my advice would be to be there whilst any help is there for 2 reasons

1. Assure your Mum re strange folk in the house
2. Parents wont feel vulnerable if someone different letting themselves in etc

Get them a key safe - carers/cleaners etc always knock or ring before letting themselves in AT FIXED times so you can write up a schedule. Key safe means if there are any requirements for ambulance etc they too can use the code. Social service can help arrange this.

I would get someone in to help YOUR DAD more than Mum - so cleaners/housekeepers, gardners etc. Get them to work WITH him so he can get to know them, gets some social aspect from it and so on

Look into something for your Dad to get him out of the house and away from caring duties if your Mum wont leave/go to her club.

The washing etc is going to get worse as your Mums ability to cope lessens, consider having a service for them as it gets overwhelming when actually you need to spend time as your Mums daughter not just her carer. If you do have a carer in talk about her as your help rather than for your Mum for e.g.

Make sure you have LPAs in place so you can decision make for Mum OR Dad. Financial and Health.

Whilst I appreciate your Sister is working FT, is there anyone like her DH that could do a few things as well?? Even if its get the shopping sorted, cut the lawn do a hedge, keep up with the recycling and rubbish, make sure the work load is split between you evenly so you can both be a daughter to your parents as well as carers

Most of all look after yourselves, get your own families to do more at home to free you up to help with parents this could be a number of years yet so you need systems and processes in place to keep you going when you hit roadblocks

Its hard and I feel for you. As a society we are not supporting each other in these situations. But it is doable and you wont regret doing it and being there for them.

Oh and make things like a photo board of people they see regularly with large print names and jobs so they can feel like they know people and have a reminder - we did this and for regular visitors too

Also not sure how physically able your Mum is anymore but we found our Mum was capable of folding washing until the last two or three weeks and it kept her amused and she felt less useless.

This sounds so tough. Might be worth speaking to admiral dementia nurses for advice. They will have seen it all before.
Apply for attendance allowance for your dm to fund cleaner/ gardener?
Also, reduction in council tax due to diagnosis? Then you can say to df that the care is paid for. But you must protect yourself.
Good luck

Thos sounds completely unsustainable. I have to say that my sister and I got a lot bossier, pushier and angrier with my mum in recent years and I'm not saying that was great, but it did work sometimes.

Thanks all for the advice.
I got mum attendance allowance 2 years ago but it just sits in her account accumulating! I’ve told them to use it for things to make their lives easier but it never happens, so frustrating.
We have LPA’s so that helps for medical stuff etc. And the council tax reduction.
Sadly, we don’t have Admiral nurses in our area but I will try ringing the helpline.
I do have details of a local care organisation who help with a whole hist of things. I will contact them today.
RB68 thank you for the advice of the photo board, good idea.

MIL has vascular dementia and alzheimers ... we were going through the same issues until DH lost it a bit, and said crossly(he NEVER, EVER raises his voice normally)

"its not YOU that needs carers, it's US, we need to feel you are safe and well."

She realised then, and although not happy, she let him arrange them... just to help us out. Then, when they were "tolerated" it was easy to increase their hours.

BeyondMyWits I feel we are heading that same way. If my dad doesn’t accept help soon I will break and lose my temper which I never do. My own health issues are starting to have a massive impact on things and I can only take so much.

@Fairytoast don't feel guilty if that is what is needed. Right now your dad is not considering you at all, if it takes you getting cross, then that is what it needs. It'snot nice, you will feel shit immediately afterwards but sometimes politeness just wizzes straight past their ears.

In the nicest way, you and your sister are your own problem.

Dad would rather be pottering in the garden faffing about in his shed than actually doing anything in the house

So what? You have actual teens to look after and prioritise and care for.

You need to not go for a few weeks. It will feel horrible. And don’t be available when your dad rings. There’s no need to be rude, just say you are busy and can’t came this week/can’t do whatever chore it is.

Then in three/four weeks time you might find your dad much more ready to have a serious conversation with you.

So basically, it is four weeks of cold turkey for them and you but by March you could be on the way to having a more co-ordinated and realistic response to the situation.

Do you think you could do that?

A few months ago, we left everything for a couple of weeks but it was poor mum who ended up taking the brunt. I don’t want that as she has always been such a kind, caring mum and I don’t want to see her suffer. She ended up with no underwear as dad hadn’t done any washing, she is bent over with osteoporosis and she developed a fungal infection under her stomach folds as he hadn’t supervised her showering and forgot to spray the anti-fungal cream in that area and the house was an absolute mess.
This was just leaving it 10 days so God only knows what would happen after 4 weeks! And if I don’t see dad for a day or two he will constantly FaceTime or ring me, it drives me insane.
I need to sit with my sister and organise for someone from a carer organisation (we have a couple of contacts) to pop over and start with some kind of befriending service for mum and hopefully we can go from there. It will be a battle though and horribly emotional as mum will hate it because her memory is literally 5 minutes long, each week will be like the first, this is the problem with the day centre, I had to pull her out because she forgot each week and hated it as she said it was the first visit, every week and she didn’t know any one. Often wouldn’t get out of the car, this was after a year of going there every week.
It has become a nightmare and it’s been drip, dripping for so long that somehow we have allowed this to go on under our noses without realising how much of an impact it actually had on our lives until now.
I am annoyed with myself for letting it get to the point where I am now quite poorly with a few health issues and trying to juggle so much and very upset that dad is aware of this yet is still ok with me going round and doing stuff like stripping beds and doing the washing (this was yesterday) whilst he was outside polishing the bloody door knocker ffs!
It hasn’t been helped that all support has disappeared due to COVID, at the beginning of her diagnosis we had contact with Alzheimer’s U.K. and we were going to start visiting their dementia cafe then that was out on hold and hasn’t restarted, we are on a waiting list for that and all other support is online which dad refuses to do.
The Admiral Nurse service has been disbanded in our area.
I tried to get them to go to a local dementia cafe in the next village, they went once and dad said it wasn’t for them. When I am feeling better I will see if I can take mum myself.

It’s so hard.

It does sound as though you are allowing your dad to ‘steal’ time from you and your children. It’s difficult but it’s limited and he gets what he wants from you at a huge cost to your own family and to your enjoyment of life.

You must step back. Tell him to use the anti-fungal spray. He NEEDS to feel the impact of what is going on before he will understand that external help is essential and that help isn’t his daughters as slaves.

I agree that it's unfair on your DM to try and get your DF to step up by indirect tactics and simply withdrawing your labour.

You need a straightforward conversation with your DF. Someone needs to do the housework. He won't or can't do it, it's grossly unfair to make you and Dsis do it, hence get a professional. Can you or Dsis find someone suitable? I think it would be genuinely difficult for him to do it himself.

Personal care is a different issue, but it sounds like you've got a source of information there.

Is "getting angry" with your DF in a controlled way something you are capable of doing? Or does he have a friend he would listen to if they told him he must accept professional help? You need to find a way of getting through to him or you will end up I'll and unable to help, then there really will be a major crisis. Sometimes it needs tough love. I know it's hard to do, I have a wardrobe full of the t shirts and I'm still having some battles.

It sounds as though DF needs to feel it, more than discuss it. Anything can be said in a discussion and then forgotten or rowed back on, as OP has experienced.

He is saving money by using his daughters’ unpaid labour. At huge cost to them and their children. That’s not a discussion point, that’s a reason for his daughters to stop.

To be honest, your dad forgetting important stuff and doing pointless activities like polishing the doorknob is a bit of a flag for his own mental degradation... has he been tested?

Quite often a husband or wife's issues will go unnoticed for a longer time because the primary dementia sufferer takes up everybody's head space.