Carer for a elderly parent - general questions

noclaf

I am a carer for a parent and hoping to get input from others who have been in a similar situation and anyone who may have some useful tips. My situation is that I live with the parent who has dementia, I am a carer but also get LA- arranged carers coming daily. Parent is self - funding the care, I have deputyship for said parent. I also work full-time in what can be a fairly stressful line of work, long hours etc.
Questions:
1.)when does the point come where it's unmanageable and parent requires full-time care e.g in residential. I get that will vary based on multiple factors but.has anyone been through this especially as a live-in carer situation? I may have carers coming in but I still have to do numerous other things for my parent and this can be tricky to manage with a full-time job..I do manage but only just at times.
2.) Aside from having deputyship, what else can I do to prepare for the eventuality when said parent needs a residential/care home? Would it be wise to start researching potential homes now rather than having to do it reactively when things get worse further down the line.
3.) Expenses and specifically grocery shopping...how can you determine what is fair as expenses to be covered by parent e.g: you live in parents house, you pay all the  utility bills, you take said parent to all medical appt's. If you do not pay "rent" aside  from covering utility bills is it fair and reasonable to take a % monthly to cover expenses for groceries? Again would be good to know how others have determined what's reasonable etc
4) Finally, there is no easy answer to this I assume but how do you manage the niggling stress at the back of the mind about when the times comes for needing a care assessment for the parent and not knowing how the LA will view things (read as parents property and how this could affect my living arrangements..that uncertainty is certainly slightly unsettling for me but I guess obvious answer is to try securing/arranging suitable living arrangements when the time comes. Probably no other way to sugar coat that.
Any input for the above much appreciated.

theoretica

Having had a relative who needed to move into sheltered accommodation in a hurry I think you would be very wise to investigate homes now rather than risk a rushed decision.  You are busy now, but when your parent is worse off you may well be even busier.  Once you find some you like ask about how often they have vacancies - you might want to ask to be informed when vacancies come up as the right time to move may also be influenced by when the right place is available.

noclaf

Thanks theoretica, it's actually quite an obvious point I didn't think of; nursing/residential care homes can only take new residents on when they have capacity so will factor that in and as you say consider waiting lists of needed.

Bossyboots

There is lots of help and information on the Alzheimer's forum.  Doesn't matter about the type of dementia or even no formal diagnosis, the knowledge and help there saw us through the minefield of caring for a loved one. 

noclaf

Thanks Bossyboots will take a look.

elsien

Is the deputyship just for finances, or for health/welfare as well?  
The home can be disregarded at the point the parent needs to go into care if you are over 60 at that point. There are some helpful fact sheets on the Age UK website.
With regards to potential care homes, thus will depend on what parent needs at the time with respect to EMI/nursing needs. 
Look into CHC assessments at the point they may be relevant. 
You also need to consider the cost of the home and how long the assets may last for. If they go somewhere expensive and the money gets down to the 23K limit, they don't qualify for health funding, and the LA won't pay the difference,  that leaves you paying any top up if you are willing/able, or parent having to move. 

Savvy_Sue

You may find the Contented Dementia book useful. 

Also how old are you? You don't have to answer, but worth knowing that if you're over a certain age, you won't be forced to move out and sell the house, it can be disregarded. 

As you are a deputy, it might be worth asking the Court of Protection what they would consider 'reasonable' in your situation. However they might feel that you not paying rent is not in your parent's best interests, and therefore 'unreasonable', and taking money when you're not paying rent even more 'unreasonable'. I'm not saying they would take that view, but it's a possibility. 

elsien

Also to add, you have to look after yourself. You are no use to anyone if you don't. A relative had to stop caring at the point her husband couldn't be left in the house safely, and wouldn't stay with anyone else. She was not able to have any breaks at all, and became unwell herself.
That's a decision only you can make. It is not selfish to consider your own needs as well as your parents, but it can be harder to see that when you're the one on the middle of it all. 

Mojisola

noclaf said:

I am a carer for a parent and hoping to get input from others who have been in a similar situation and anyone who may have some useful tips. My situation is that I live with the parent who has dementia,
1.)when does the point come where it's unmanageable and parent requires full-time care e.g in residential.

It's worth checking out your local homes to see which ones you would be happy with your parent spending time in.

Although some moves are planned, the transition is often caused by an emergency - either the parent has extra problems like a fall resulting in a broken hip or other health issues or the carer suddenly becomes unable to continue.

Advance planning and knowledge of the local homes will make any transition much easier.

If you are allowed to stay in the house and your parent's place has to be paid for the council, you may not have any choice about which home they go to.

noclaf

Thanks all for the input.
I am in my 30's so will assume that when the time comes my mother's share will be considered towards her care costs. I am taking certain legal steps to hopefully make things easier further down the line.I won't go into all the in's and out's but house situation is slightly complicated as half of it is owned by other parent who is in care but doesn't contribute to their care costs(due to their health history)but I have no legal powers/rights to do anything with other parents share e.g: I cannot try to sell it etc so curious how the LA will look at that, maybe a charge on property might be considered that takes away the need to sell immediately upon my mum going into care. That would be ok for me though selfishly looking at it from my perspective.
I will look into the local homes and re expenses will check with the court of protection on this.
Let's say my mother goes into a care home and her weekly fee's are £800 (arbitrary figure) so annual costs of around £40,000.00. even if the house was sold her share in the equity of the house(50%) would cover 5 years roughly...maybe a bit longer with her pensions. I'm basing that £800 per week on figures I've seen and on what my father's fees are likely to be but he receives nursing care so slightly higher weekly cost.
One other qu, my mother has lost sight in one eye due to diabetes in addition to her dementia and other conditions..she receives lower rate AA, SMI disregard on council tax and the annual £200 towards energy bills. Is there anything else she could/should be receiving or have I got it covered? I'd rather sort all that out too ideally before she ever goes into care.
I'm not keen for her to go yet given the Covid situation and I can cope right now but if things deteriorate it will be unmanageable...it's especially tricky balancing it with a stressful job..the two just won't work in the long-term hence trying to plan things out now to reduce the future stress. I've struggled for quite a few years, it makes you stronger of course but have to be sensible long term as it's unsustainable and will eventually catch up.

Rambosmum

Just to say, you could likely be able to remain living in the property should both parents be in residential care however would be expected to pay full market rent, of which 50% would go to each parent. 

As the property cannot be sold (as no one has LPA for the other parent, and assuming they do not have capacity to consent to sale) a charge would be put against the property (half the value unless other parent dies first and while property is left to parent you care for). You living in it and paying rent would be preferable to it reaming empty but it depends whether you can afford the rent?.