Terrified about the future and losing our home

[notsure12345]

Long story short, partner has family history of early onset, which i know means our future is basically destroyed.

At the moment we are particularly anxious and concerned about what would happen with care costs if our worst fears are realised and I can't find any answers by googling so wondered if anyone can help.

We own our home and it's my only asset for retirement etc. I have no savings and my pensiomn isn't likely to amount to enough to live on.

My fear is that as well as having been cursed with the likelihood of this despicable illness I will also lose all my assets and any hope of a life because my partner could need decades of care. I am not capable of being a carer for any length of time as I have to travel a lot for work

Please help me get a handle on what the future looks like if the worst happens. I have lived with this crippling uncertainty for too long. And of course I feel like a monster for thinking about this side of things but it's quite a big deal when you're still in your 30s and have no idea how to secure any sort of a future.
Thanks you

 

[kindred]

Long story short, partner has family history of early onset, which i know means our future is basically destroyed.

At the moment we are particularly anxious and concerned about what would happen with care costs if our worst fears are realised and I can't find any answers by googling so wondered if anyone can help.

We own our home and it's my only asset for retirement etc. I have virtually no savings and my pensiomn isn't likely to amount to enough to live on.

My fear is that as well as having been cursed with the likelihood of this despicable illness I will also lose all my assets and any hope of a life because my partner could need decades of care. I have various MH conditions of my own that mean I am not capable of being a carer for any length of time.

Please help me get a handle on what the future looks like if the worst happens. I have lived with this crippling uncertainty for too long. And of course I feel like a monster for thinking about this side of things but it's quite a big deal when you're still in your 30s and have no idea how to secure any sort of a future.
Thanks you

Yourfuture may not be destroyed. It is not always passed down. If the worst happens and your partner needs care, then your house would bed disregarded for any financial assessment as long as you are living in it.
Obviously, the social services would go through the options of putting a care package in place - an increasing number of daily visits, before they considered a care home. You would be assessed on your ability to pay. Please, please do not assume the worst.
You do not have to be carer for your partner, although it would be better if you left arrangements in place.
But all this, surely, is theoretical? Please don't let it whip up your anxiety sweetheart. Sometimes the worst does not happen. with warmest wishes, Kindred.

 

[notsure12345]

understand I would not be kicked out of our home but what about my assets. What am I supposed to live on if I can't sell my property. How do I ever move on in life .I don't want to be stuck somewhere for the rest of my life.

 

[nellbelles]

Hello @notsure12345 and welcome to TP.

I hope we can help reduce your worries a little.

I have attached the link to the Alzheimer’s help line I wonder if talking to someone would help clarify some of your issues
https://www.alzheimers.org.uk/get-s...5.1282197276.1537783722-1370286491.1335957541

 

[kindred]

I will assume the worst until we can be certain it's not going to happen, but I couldn't deal with it if was was bad news, so it's limbo for now.

I understand I would not be kicked out of our home but what about my assets. What am I supposed to live on if I can't sell my property. How do I ever move on in life .I don't want to be stuck somewhere for the rest of my life.

Ok. I believe there is some kind of test you can do to find out if you have the condition, but you and your partner's GP may not agree with this. i see why you feel stuck in limbo. Please take each day as it comes at the moment, Iknow you want reassurance about the future. Are you working at the moment, full or part time.
warmest, Geraldine (kindred)

 

[notsure12345]

Thanks for the links. Hoping someone here can answer my questions though as I don't think I can say any of this out loud.

 

[Shedrech]

hello @notsure12345
welcome from me too

maybe you can check out now what benefits you may currently be entitled to, and also look at possible future circumstances - here's a link to the gov site, the info may help you
https://www.gov.uk/benefits-calculators

https://www.alzheimers.org.uk/about-dementia/risk-factors-and-prevention/genetics-of-dementia

any financial assessment for care fees is done ONLY on the finances of the person needing care - so should that ever be the situation for your husband, only HIS finances will be taken into account - YOU are not expected to pay for his care
it is also possible for him to agree to half of any private pension of his to be passed on to you
should you wish to 'downsize' if he no longer lives in your property - strictly, half of the proceeds of the sale should go to him, however it is understood that this may not leave you with enough to purchase another property so, again, it would be possible to use some of his share of the funds, but his share in the new property must be acknowledged
https://www.alzheimers.org.uk/get-support/legal-financial/who-pays-care

there are benefits that can be claimed, based on need not income, eg Attendance Allowance and Carer's Allowance, and also a disregard of his Council Tax so you would be assessed as a single occupant

it would be sensible to organise Lasting Powers of Attorney for both of you (it's wise for any adults to arrange these for 'just in case') and both have up to date wills
https://www.gov.uk/power-of-attorney

putting these in place may settle your minds about your legal and financial position, which may help you to carry on with life together with less fear of the future - none of us knows what's ahead and even a family history may only mean an increase in the risk of having any condition rather than a certainty

 

[oldman1952]

Hello notsure12345, has your other half or yourself noticed any changes in his behaviour or health? You state that there is a family history of early onset dementia and it depends on what type of dementia it is. Yes sometimes dementia starts early but normally at around 60, however if the family is affected by Frontotemporal Lobe Dementia which can effect people in the younger age groups. You can ask your GP to check your partners DNA for an markers to see if he to is carrying the Gene that causes his families type of dementia.
As I said FTLD effects people as young as 20 or younger and there are different types of the disease. If it is FTLD and the behavioural type his behaviour will change so that he might steal things from shops but is unaware that he is doing so. He can become selfish and disinhibited. Say things to people/friends that is out of character and upsetting to them, he does not know that he is doing it. Memory problems might come on later in the illness where he forgets where he was going and might get lost for quite sometime but usually does get back to home on his own. Watch to ensure that he is not using the savings or money in your accounts to buy presents for friends or get involved in scams, again this is apart of the illness. As is being abusive towards yourself and family.
If he does get any form of dementia there is lots of help out there. For the first year of the illness there is what is called a link nurse who is there just for you and your partner and your family. She/he works within the with the local HNS mental health/dementia team for the elderly. They help you to come to terms with the illness and answers any burning questions you might have regarding the length of the illness. They also help with the getting financial assistance and talks about future care that you might need like respite care in the future if and when you want a special break.
So as regards the future if he does develop a dementia, you will not be alone. Alzheimer Society will be there for you. Best regards Oldman1952

 

[oldman1952]

Hello notsure12345, has your other half or yourself noticed any changes in his behaviour or health? You state that there is a family history of early onset dementia and it depends on what type of dementia it is. Yes sometimes dementia starts early but normally at around 60, however if the family is affected by Frontotemporal Lobe Dementia which can effect people in the younger age groups. You can ask your GP to check your partners DNA for an markers to see if he to is carrying the Gene that causes his families type of dementia.
As I said FTLD effects people as young as 20 or younger and there are different types of the disease. If it is FTLD and the behavioural type his behaviour will change so that he might steal things from shops but is unaware that he is doing so. He can become selfish and disinhibited. Say things to people/friends that is out of character and upsetting to them, he does not know that he is doing it. Memory problems might come on later in the illness where he forgets where he was going and might get lost for quite sometime but usually does get back to home on his own. Watch to ensure that he is not using the savings or money in your accounts to buy presents for friends or get involved in scams, again this is apart of the illness. As is being abusive towards yourself and family.
If he does get any form of dementia there is lots of help out there. For the first year of the illness there is what is called a link nurse who is there just for you and your partner and your family. She/he works within the with the local HNS mental health/dementia team for the elderly. They help you to come to terms with the illness and answers any burning questions you might have regarding the length of the illness. They also help with the getting financial assistance and talks about future care that you might need like respite care in the future if and when you want a special break.
So as regards the future if he does develop a dementia, you will not be alone. Alzheimer Society will be there for you. Best regards Oldman1952

 

[notsure12345]

Thank you Shedrech

The problem is, I think, that I don't really have much at all in the way of finances that aren't his or at very least 'ours'. I put everything I had into our property.

I now have no savings and my only thing I have to my name is my share in the property, so obviously I will need to protect that if I am going to have an independent life going forward. I would not see any purpose in living if I was unable to move and support myself, so I need to know how to do this but have no idea. It's only a small flat so downsizing wouldn't be an option I don't think.

Does it make a difference that we don't own the house jointly but have our own individual 'shares'? I can never be sure if this makes our situation better or worse.

 

[love.dad.but..]

I can of course understand your concern about the what ifs in the future but it maybe that your partner will not have to deal with early onset as a risk percentage of some illnesses within families do not always pass on. It is sensible for anyone to consider their financial future whether there is a possibility of illness or not however whilst still currently in your 30s and perhaps your partner that age also...so much can and probably will change with pension and benefits in the future years before you may need to access...figures may not be that relevant at this time for you to make some decisions. It seems a shame for you both to worry about whether he will or won't be affected by early onset rather than trying to enjoy the here and now.

 

[notsure12345]

Please assume I have done the necessary research and have a good idea of the likelihood. It is frustrating that in several years of living with this hanging over us, most people still only want to dismiss our fears which are unfortunately very well founded. I will not go into the details here, thank you.

 

[kindred]

Please assume I have done the necessary research and have a good idea of the likelihood. It is frustrating that in several years of living with this hanging over us, most people still only want to dismiss our fears which are unfortunately very well founded. I will not go into the details here, thank you.

OK, understood. Are you both working and if so, what are your jobs? Let's look at the likelihood of future employment etc. I understand so well that you do not want your life to be subsumed by this, of course not. Let's stick with the practical issues.
warmest, Geraldine (Kindred).

 

[notsure12345]

Can I DM you? Many thanks

 

[kindred]

Can I DM you? Many thanks

I'm not sure what DM means or how to do it!!
warmest, Kindred

 

[kindred]

Can I DM you? Many thanks

I get, it means direct message. Yes.
warmest, Geraldine

 

[canary]

If your OH gets dementia then your home will be disregarded as long at you are living in it. Disregarded means exactly that - the home wont be counted and after he passes away then the house will be left to whoever he has left it to in his will and the Local Authority will take no further interest in it. No-one will come demanding that the house is sold to pay for his care. It doesnt make any difference whether you own the place jointly or as Tenants in Common.

If you decide to move and sell the house while he is actually in a care home then it is different. You will not be living in that house and when it is sold theoretically half of the sale money will be his (the other half is always yours), but if it is not enough to buy somewhere else you may be allowed to use some of his share of the sale.

With this in mind it is a good idea to make sure that the place you are living is where you want to live long-term. If you want to move, then now is the time - before there are any problems.

Any shared bank accounts etc would be considered as half yours and half his when assessed, but if you wished, you could get separate bank accounts so that you know that yours wont even be looked at.

Have you got POA? I honestly think that getting that is more important than anything.

 

[love.dad.but..]

Please assume I have done the necessary research and have a good idea of the likelihood. It is frustrating that in several years of living with this hanging over us, most people still only want to dismiss our fears which are unfortunately very well founded. I will not go into the details here, thank you.

I am sorry if you feel I was dismissing your fears...I wasn't...perhaps others on TP can offer advice.

 

[Shedrech]

hi @notsure12345
May be best to keep posting on the open forum, as an online safety measure

I guess you have reason to believe there's a posibility of dementia for your partner

financially, it's maybe best that you keep your funds separate as much as you can ie each have an individual account to pay in income and a joint account into which you each move an agreed amount regularly and from which you pay household bills, that way it's all clear
if you have joint savings, maybe split them now and each have a separate savings account

you both might now also agree on who has paid what towards the mortgage, and if it hasn't been 50/50 alter how much each of you pay from now on, or at least document amounts so far and both sign that you agree, maybe write each other letters and send them through the post

if you are working, make sure you yourself are in a pension scheme, same for your partner - check whether there are benefits in each for the partner (the rules will show this)

as for the property, it is safe as long as you live there, you cannot be made to sell it to pay for his care - if you move out leaving your partner there, you'd have to rent or buy another property but your half of the 'share' is still yours and if the property is sold to pay care fees, you have to agree and will receive your share of the proceeds

might you go talk with the CAB as they may well be able to help
and there's the AS helpline
0300 222 11 22

 

[notsure12345]

Thanks for addressing my questions. I feel absolutely dreadful even asking them but I worry every day about what might happen to us.
I unfortunately have a disability that means I haven't been able to have a career which is why I don't have much in the way of a pension but I have still done what I can to put money aside since this became an issue.