Elderly Parents, Terminal Illness & Long Distance Care

[lookingfortheadult]

Hoping to hear others in a similar situation for advice!

My parents are early 70s but with some
major health issues. My dad has early onset Alzheimer's and my mum has cancer which is terminal. Mum is doing okay for now and primary carer for dad but when she is ill, everything goes downhill.

Our parents live 2.5 hours from both my sister and I, we both work full time and between us we have 5 kids under 6.

My question is if you've been in a similar situation, have you found a way to survive this? Even if they wanted to move, it's not possible due to house prices and mum has been adamant that she doesn't want to be in any kind of care or have carers when she's ill. I've asked her what she sees as a solution but she gets upset and says "I don't know" on repeat. My instinct is that she subconsciously wants it to be me or my sister as full time carers but I can't see how we can do this without entirely upending our lives. Last time she had major surgery she and dad moved in with my family for six weeks but it was very difficult and not a long term solution.

I have no idea how we will survive when she deteriorates (and it is a when). Has anyone found a way of doing this? I hear so many stories of people who are present with their parents when ill/dying and I don't see how we can do that.

Hoping there is a solution I haven't thought of!

I think the only thing you can do is for your parents to buy in care when it's needed. When your dad is left on his own, you will need to move him closer to you. It must be so hard with young children involved as it's not even as though you could ask for an extended period of time off work and move to them temporarily. Sorry there's no easy answers. Just make sure your mum uses local support networks, asks the local authority to do a carers assessment for her etc so that she can get respite care for your dad etc. Make sure they are claiming any disability benefits available to them ( Attendance Allowance) so that that extra money can be used to buy in care.

Your parents will need to buy in care and you need to have the conversation sooner rather than later. Neither you nor your sister can do it even if you wanted to, make sure your parents know this. You have lives, jobs, you are not living close by, you have young children who need you. They just can’t put their heads in the sand on this, the more you organise now the better. Start the conversation, and keep raising it, I know it’s tough I’ve been there. Look into it for them, give them choices and options, but make sure they know you and your sister can’t and won’t do it. We moved my mum into a sheltered flat first, then she went into a Home - it wasn’t easy but it was the right thing to do, none of us could have had her to stay due to location, jobs, unsuitable housing for her, etc.

I would start by getting care in now, just an hour a day x 5 days ... so you can find the right company before the situation becomes desperate. The other option is sell their home and move near to you and your sister .. though they will still need care if you are both working. Good luck.

I second what @ByQuaintAzureWasp says. Start the drop in carers now so your parents are used to them.

I am similar to you although only an hour away and perhaps a year or two further on from you.
Realistically i can only visit one day a week but my parents have very kind neighbours and someone is there every day.
Do they have neighbours? Or weekly cleaners?
Anybody who you can trust?
I've got access to the ring doorbell so I can check if they don't answer the door.
they also both wear a bracelet with a panic button - which links to another care provider who will send someone round if needed.
There's lots of options for this phase. The next phase will be more tricky.
Presume you've sorted POA out too.

They need to buy in care. Sell.it to them. It s OK to have domestic help.

I moved 600 miles to be with her. I would not make that same decision again. If you can find the money, buy in care.

Thank you. This is helpful, particularly the idea of starting to buy in care now to find a fit.

They probably have 1/2 close friends who regularly help (eg weekly hospital appts) but I'm always aware that people have their own lives and problems.

I'm a lot more blunt than my sister and I very clearly said to my mum that if she expects either of us to have a role in care they have to be close to either of us, if not, she will need to have bought in care or ultimately a hospice but she just cried. I've tried offering solutions re. moving including financial planning (we have POA) but I am 99% sure they will never do it. And yes, in theory I could take time out of work but I can't be away from my children and husband for weeks at a time.

I love my parents so much but practically I will have to live a life post parents (job, husband, children) and I am terrified that we will drown in their expectations. It's impossibly difficult and has made me think so much about what I will do differently for my own children.

Can you suggest to your Mum that the care is ( mainly) for your Dad as he is best to get used to people now because as his condition gets worse it will be necessary ( all true, it’s nigh on impossible to look after someone with more advanced dementia without some outside help)

For your Mum is there any way you having a chat with Macmillan to get advice might help?
Maybe tell your mum you’re worried and ask her for your sake to at least have a ‘home help’ in a couple of days a week for cleaning /shopping etc ( and more maybe once she gets to know the person)
. Good luck OP and best wishes.

They'll have to have either carers coming in or move to a care home.

Before having my own family I did drop everything to care for a terminally ill parent. I wouldn't do that again - even if my own children and job mean it would be impossible - it's one of the toughest things I've ever done. It almost cost me my job that time, and that's before I was the main breadwinner and a parent.

Since then the surviving parent has had to temporarily go into a CH to recover from surgery, for instance. It's the reality when the daughter has so many other calls on their time.

I have had to be very blunt about it. There was a strange belief that "compassionate leave" would mean I could take weeks off work on full pay to do caring, which isn't the case at all!

Good luck, it's a really tough thing to have to face.

Agree with everyone else re: carers.

My parents were quite resistant to carers at first but actually quite liked having people popping in.

The other reason for getting carers in now is that it'll get your Dad used to them now and give him a better chance of staying home after your mum passes. It's going to be a lot to cope with at once if they don't get help.

I'd also make it absolutely clear you're not going to be able to provide care.

When my Dad was ill my Mum started telling me I could get insurance that would cover me to take time off for care! At the end of the day they will have to face up to things but it is hard.

Clear discussion with them now about buying in care and not relying on you. If they move closer you'll see them more, but you still won't be able to care for them.

I spoke to her about it again today. She agreed but got upset again. She always says "I don't expect you to care for me but I don't want anyone else to". I pointed out this is basically the same thing and making me feel guilty is not helpful.

I think I just need to ride out the sadness. I'm also going to start reaching out to care providers in their area to look what's available. It's a bit of a minefield to find someone good that we could trust.

I thought we'd have a few more years before it being needed but double diagnosis has been a bit of a brutal reality check.

Echoing others. My mum was anti-care because she didn’t want people in her home. My dad has dementia. We did a slowly slowly approach - “why not get someone in twice a week to help dad shower?” “Why not try meals on wheels?”

it was always with a “if you don’t like it, you can cancel it” approach - but once it was actually happening, she was ok with it and never cancelled anything!

I would start by getting care in now, just an hour a day x 5 days

An hour a day may be tricky - I think a standard care visit is 15 minutes!

I've done care at a distance (minimum 1.5 hours travel each way) for several years. If it had been my decision, then carers, and subsequent CH, would have happened much sooner, and the CH would have been much closer. I had to take over as prinary carer and manage the impact of decisions I hadn't made.

Ime, you need to be really firm about your boundaries and their expectations, which it sounds like you're doing well. If it makes your mum feel sad, that's ok. Maybe she'll get past the saddness and make a decision. I'd explain that if she doesn't make a decision now, then one will likely have to be made when there is a crisis, and she may not have a choice in that situation.

It's very difficult, but stay firm, like you're doing.

Would they both agree to having the a care needs assessment, are they known to the community cancer care team and alzheimers nurse.

My parents managed with my mum, physically disabled and on palliative care, managing my dad, (who had dementia but they refused to acknowledge this).

She sent him to the shop. Sometimes he'd go 3 times in the day before he came back with the milk they needed.

They had a cleaner. She could prepare food. She'd sit at the end of the kitchen and micromanage him whilst he heated it. She was on oxygen so couldn't go near the hob.
She held it all together until very shortly before she died.

Then it became a bit of a fiasco.
They were 2hrs away. I had 2 children under 3 and I'm their only child.
There were nights Dad sounded so disoriented on the phone that I'd have to drive down in the middle of the night to check on him.

He drank, but tried to persuade me he was sober until I threatened to call an ambulance because he'd clearly had a stroke and was slurring his words... When he'd admit to a glass of wine (bottle of wine and half a bottle of scotch).

We eventually moved Dad up near us to a small flat but he was unable to cope. He then spent 10 years in residential care. For the first few years he was able to navigate the village and was able to go to the shop, or come to ours. Then he started getting lost (or thinking he was clever by telling staff where he was going but lying about it so they couldn't find him. he thought it was funny). They stopped letting him out (all legal protections in place).

It was hard. Always hard, sometimes very hard.

It's a really shitty place to be. I'm sorry you find yourself here.
You may just have to be really firm with your mum. The difficulty is, if she has capacity, she is entitled to make bad decisions. If your dad dies not have capacity, and she is making bad decisions that affect him (such as declining care) then it is a safeguarding concern.

Defo talk to social services as ops have suggested

Tell her that if thing are put in place NOW she will be able to have input and choice. If she leaves it too late then the choice will be taken out of her hands. Ask her which she would prefer.

I agree @CurlyhairedAssassin - I also would initially use the words 'home help' and once they get used to a cheery face popping in regularly it is I think a bit easier to introduce new people/services when they need more nursing care requirements.

My own preference is for private care where you have the same couple of 'home helps' all the time if at all possible

I think for many proud people it's the actual digesting that they are unwell and need some external care that's hard to digest - rather than the actual care once it's ongoing -

That's really tough. Try to keep really clear communication with your sister so you are united in the conversations you have with your parents and able to support each other. At the end of the day the two of you will be left and this kind of situation puts such a strain on the best of sibling relationships.
A really hard part of all of this is that you are so desperately trying to juggle your own family ,work etc that you don't have space for the important conversations with your Mum as she nears the end of her life. I would dash to see my Mum in another city and she would always worry about how tired I looked. I was of course exhausted having made a huge effort to get there and would then feel guilty that I wasn't always lovingly in the moment with her

I think it's also an issue with facing your own mortality too. There it is, smacking you in the face. It must be really really tough. I can totally understand the being in denial.

@Orphanannie68 your experience sounds very much like our future. I think we would move dad to be nearby if (or when) mum died. Most likely in residential care but my husband has suggested considering a small annexe in our garden as he's familiar with our house/village. We'd have space for something very small. Dad is in excellent physical health. He still plays sport weekly. But his mind is not good and he is heavily reliant on mum despite them not actually having a great relationship. When she's in hospital he spends a lot of time sitting on the sofa with his head in his hands in panic.

Does anyone know if you can combine private bought in care with anything available through social services etc? We have had support from the Alzheimer's society which has been brilliant and they suggested it may be too early for a care needs assessment. I'm wondering if there is anything else I'm missing?

You can combine paid for care with state funded care in theory, but in practice if you’re getting state funded care you probably can’t afford private care.

My advice would be - suss out all the options so you have solutions in your mind when you need them, but stop trying to force your mum to make decisions she just can’t make at the moment, and to do things (like get carers in) that she doesn’t want to do and doesn’t yet need to do. She will get there when she needs to (and if she doesn’t then you will have to make the decisions yourself). Right now I can see why she doesn’t want to think ahead - there aren’t many silver linings to her particular set of clouds.

At some point your dad is going to need people coming in to help him: know the process for making this happen, the costs involved, whether it will be state funded or private, and if private have the number of local care agencies up your sleeve.

Do not build your dad an annexe in the garden. Sooner or later, people with dementia tend to become incontinent and need more care than 4 short visits a day (which is the maximum). Better to move him once to a care home than twice to your annexe and then a care home.

OP your dad cannot be moved to a new house if he has dementia, so that idea is a non-starter.

I'm assuming your mum will die first. That leaves him with a progressively worsening illness.

Start looking at care homes for him. It's best to be prepared for this well in advance.

In the meantime, tell your mum that she needs to arrange carers and cleaners. If that's too much for her, you could help.

Care needs for people with dementia change all the time. Your parents may start with one visit a day, and move on to full time live in care.