Coping with a parent with dementia
Discussion
My dad was recently diagnosed with memory impairment following a forced DVLA health assessment. He has been referred to the memory clinic for more tests and head scans.
His decline has definitely progressed quite a bit in the past 3-4 years. His driving in particular had got horrendous. Straddling the centre line, almost veering into cars then swearing at them like its their fault. Started getting lost in familiar places too.
Anyway the DVLA has said he can't drive until these further examinations and he hasn't taken it well at all. He's been drinking daily for at least 3 years I'd say. Not huge amounts, but 3-4 beers, which mixes with the bucket load of medications he doesn't need to be on and it just isn't going well. He apparently laid on the kitchen floor for hours last night, absolutely distraught about his licence.
It's my mother who has to deal with it as she lives with him and has basically become a carer. She's 16 years younger than him too (He's 81). She is weighing up options when the diseases progresses. A care home is a huge financial hit, the alternative is she moves out and has a carer come to the house to care for him.
Has anyone else gone through the same and can offer any advice? Especially the financial aspect of it.
His decline has definitely progressed quite a bit in the past 3-4 years. His driving in particular had got horrendous. Straddling the centre line, almost veering into cars then swearing at them like its their fault. Started getting lost in familiar places too.
Anyway the DVLA has said he can't drive until these further examinations and he hasn't taken it well at all. He's been drinking daily for at least 3 years I'd say. Not huge amounts, but 3-4 beers, which mixes with the bucket load of medications he doesn't need to be on and it just isn't going well. He apparently laid on the kitchen floor for hours last night, absolutely distraught about his licence.
It's my mother who has to deal with it as she lives with him and has basically become a carer. She's 16 years younger than him too (He's 81). She is weighing up options when the diseases progresses. A care home is a huge financial hit, the alternative is she moves out and has a carer come to the house to care for him.
Has anyone else gone through the same and can offer any advice? Especially the financial aspect of it.
You only need to pay for a Care Home from savings, if the home is in his wife's name too they cannot touch a penny of it. They may try to convince you otherwise by saying she could move somewhere smaller and more manageable but once you sell the home then they can take your Dad's half. If your mum stays put, they cannot touch the house.
Also might be worth changing the house to tenants in common too, should something happen to your mum first then at least you would inherit her half rather to it all then going to your Dad's care.
Also might be worth changing the house to tenants in common too, should something happen to your mum first then at least you would inherit her half rather to it all then going to your Dad's care.
Sorry to hear you are going through this, we had a few years of dealing with my MILs dementia, she was widowed so on her own. We were about ten minutes away, both working full-time and the only local family.
At first we had carers in for increasing amounts of time but it hit a point where she wasn’t safe on her own so a care home was the only way.
If your Mum can manage him at home with help from carers that’s great but it will be a big strain on her and a care home would allow her some life of her own. I don’t know if it’s good to do that move sooner for your Mum’s sake and so your Dad can settle while he is more able to understand what is going on, obviously that comes at a cost and he will most likely not want to be there, my MIL hated it and I can’t blame her.
The costs are high of course, my understanding is that if he has savings above about £20k they have to be used before you can get any help. I don’t know what applies to money held in joint accounts etc, others may be able you advise.
Regarding driving, what you are describing sounds like you are at the point where you have to take the keys off him. It’s awful and we had to do the same but the reality is that he could hurt himself or someone else.
At first we had carers in for increasing amounts of time but it hit a point where she wasn’t safe on her own so a care home was the only way.
If your Mum can manage him at home with help from carers that’s great but it will be a big strain on her and a care home would allow her some life of her own. I don’t know if it’s good to do that move sooner for your Mum’s sake and so your Dad can settle while he is more able to understand what is going on, obviously that comes at a cost and he will most likely not want to be there, my MIL hated it and I can’t blame her.
The costs are high of course, my understanding is that if he has savings above about £20k they have to be used before you can get any help. I don’t know what applies to money held in joint accounts etc, others may be able you advise.
Regarding driving, what you are describing sounds like you are at the point where you have to take the keys off him. It’s awful and we had to do the same but the reality is that he could hurt himself or someone else.
Steve H said:
Regarding driving, what you are describing sounds like you are at the point where you have to take the keys off him. It s awful and we had to do the same but the reality is that he could hurt himself or someone else.
It sounds like he has understood he shouldn't be driving hence his reaction to it. If he continues to drive, hiding the keys might work, but may have unintended consequences eg. He assumes he's lost them and keeps turning the house over looking for them. Worse blames his wife for hiding them and gets angry.From what you describe, I don't think there is any chance he'll pass a driver assessment. If possible get the car (with his agreement) sold, moved or rendered inoperable.
The cruelty of dementia is that once you solve a problem (this problem will go away on its own as he will forget about driving sooner or later) then there will be a new series of problems to deal with. There's no standing still and no opportunity to come to terms with what's going on.
Put the focus on getting as much support for your mum as possible. Local Authority Social Services assessment, carer assessment, benefits review (attendance allowance), council tax expemtion. Alzheimers Society may offer support and services but may be patchy.
If he's still in contact with memory services, would be worth keeping them informed about his drinking and behaviour and considering whether he may be depressed (common and can be a useful intervention to treat independently of dementia)
^^^ totally agree.
I’m not suggesting hiding the keys, he does need to know he can’t drive any more but that doesn’t mean he won’t try, trust me on this. The reality of knowing this is a step in your decline must be impossible to get to grips with.
In the end we simply took the MILs car away and set up with a local taxi firm to be able to take her anywhere, they were really good and looked after her well. In the OPs case I’m guessing his Mum may drive so the car could need to stay where it is.
I’m not suggesting hiding the keys, he does need to know he can’t drive any more but that doesn’t mean he won’t try, trust me on this. The reality of knowing this is a step in your decline must be impossible to get to grips with.
In the end we simply took the MILs car away and set up with a local taxi firm to be able to take her anywhere, they were really good and looked after her well. In the OPs case I’m guessing his Mum may drive so the car could need to stay where it is.
We're going through this at the moment. F-I-L has got to the point where he cannot live alone so has moved in with us.
One of the things he's repeatedly said to us is "Don't take my car away from me " but it's now at the point where we're going to have to.
His licence is up for renewal in 2 months and recently he has suggested selling the car and not renewing the licence, but then a day later he want's to drive it again.
Add to this he has noticeable attitude swings from quite pleasant to basically a grumpy old sod who talks to my wife like she's 5 years old, however very rarely in front of me so I suspect he both knows what he is doing there and that it is inherently wrong.
Mrs RJ is really struggling and is looking for a counsellor to talk things through with.
What makes it worse is that when he talks to her brother or sister on the phone he is all sweetness and light and happy to chat, whereas the minute he gets off the phone he reverts to the silent treatment in the chair in the corner.
Please and thank you are occasional, usually with a hint of sarcasm attached, however we are effectively stuck with him here as the siblings both live in the UK and are quite happy to leave all the hard stuff with us.
f
king disease sucks.
One of the things he's repeatedly said to us is "Don't take my car away from me " but it's now at the point where we're going to have to.
His licence is up for renewal in 2 months and recently he has suggested selling the car and not renewing the licence, but then a day later he want's to drive it again.
Add to this he has noticeable attitude swings from quite pleasant to basically a grumpy old sod who talks to my wife like she's 5 years old, however very rarely in front of me so I suspect he both knows what he is doing there and that it is inherently wrong.
Mrs RJ is really struggling and is looking for a counsellor to talk things through with.
What makes it worse is that when he talks to her brother or sister on the phone he is all sweetness and light and happy to chat, whereas the minute he gets off the phone he reverts to the silent treatment in the chair in the corner.
Please and thank you are occasional, usually with a hint of sarcasm attached, however we are effectively stuck with him here as the siblings both live in the UK and are quite happy to leave all the hard stuff with us.
f
king disease sucks.Been through it end to end with FIL & MIL and It’s a really nasty journey for everyone involved, sad to say 
People here have covered good ground and given good advice..
On the car front, we replaced his car with a really good buggy so he could retain some independence and it worked quite well, he was a professional driver to so was especially attached to his car (or what was left off it)
Good luck and lean on services as much as possible to relieve his wife as she’s the one who will suffer most
People here have covered good ground and given good advice..
On the car front, we replaced his car with a really good buggy so he could retain some independence and it worked quite well, he was a professional driver to so was especially attached to his car (or what was left off it)
Good luck and lean on services as much as possible to relieve his wife as she’s the one who will suffer most
MIL got dementoid a couple of years ago, the FIL coped really well bless him but eventually he had to chuck it in so we found a care home for her. It's a really great place, lots of care and attention, good food and really caring staff who work their socks of to provide stimulation via activities and trips out. It's very very expensive buts she's mum, so there's that. FIL died late last year so the house has been sold and that should see her through.
She simply doesn't know who anyone is anymore which is heartbreaking as she's a really intelligent woman used to be a teacher. She does get a visit from a member of the family almost everyday and she enjoys that although she's spending increasingly more time in bed. It's so sad to see loved ones slipping away.
She simply doesn't know who anyone is anymore which is heartbreaking as she's a really intelligent woman used to be a teacher. She does get a visit from a member of the family almost everyday and she enjoys that although she's spending increasingly more time in bed. It's so sad to see loved ones slipping away.
I have mentioned before on threads like this, that I work with dementia as part of my job, from initial testing, to diagnosing and then supporting people through all aspects of the illness. If anyone needs any specific support or has any questions then I am happy to try and help via DM and signpost you in the right direction.
Sympathies to you all OP.
My MIL had a horrid last few years and her husband was the carer.
My own Mother has just been diagnosed with Alzheimer’s.
Once more than £23,750 or so in savings then generally not eligible for NHS support.
There are many comments made about CHC / continuing care but the criteria seems hit and miss.
I noticed an advert on tv yesterday about Compass offering their services in terms of securing CHC but would urge caution on using them.
Might be wrong but it seems like they charge with no guarantee.
Your Dads house is safe from any financial assessment.
Obviously care can be available in his own house ( at cost ) and this is something to discuss with the assessment team.
I would urge you to perhaps concentrate on him not driving even if that means some tough actions.
My aim for Mum is to keep her out of needing a care home for as long as possible.
If that means that either way her savings diminish to the minimum then so be it.
Best wishes and good luck.
My MIL had a horrid last few years and her husband was the carer.
My own Mother has just been diagnosed with Alzheimer’s.
Once more than £23,750 or so in savings then generally not eligible for NHS support.
There are many comments made about CHC / continuing care but the criteria seems hit and miss.
I noticed an advert on tv yesterday about Compass offering their services in terms of securing CHC but would urge caution on using them.
Might be wrong but it seems like they charge with no guarantee.
Your Dads house is safe from any financial assessment.
Obviously care can be available in his own house ( at cost ) and this is something to discuss with the assessment team.
I would urge you to perhaps concentrate on him not driving even if that means some tough actions.
My aim for Mum is to keep her out of needing a care home for as long as possible.
If that means that either way her savings diminish to the minimum then so be it.
Best wishes and good luck.
OP: it’s a very tough issue to deal with, I’m afraid. You have my sympathies.
My wife and I went through this from 2016-2019 with her parents.
My brothers and I (each in a different country !) now have Mum with dementia, and she’s also going through a divorce from an abusive relationship - well, the sons are dealing with that!
Get as much help as you can from social services for home help stuff, and with the support from your father’s GP. It takes quite a while to get things sorted, so even if help might not be needed now, by the time it is needed, it’s too late to ask for it, IYSWIM?
My wife and I went through this from 2016-2019 with her parents.
My brothers and I (each in a different country !) now have Mum with dementia, and she’s also going through a divorce from an abusive relationship - well, the sons are dealing with that!
Get as much help as you can from social services for home help stuff, and with the support from your father’s GP. It takes quite a while to get things sorted, so even if help might not be needed now, by the time it is needed, it’s too late to ask for it, IYSWIM?
My thoughts are with you OP.
I’ve posted this link in other threads but please, please buy this ebook and follow it to the letter…
https://caretobedifferent.co.uk/product/how-to-get...
Did it for my FIL and got all his care paid for. The professionals that you speak to and are responsible for care will start by denying knowledge of this process. When they work out you know more about it than the normal person, they’ll tell you you’ll never get a high enough score. Then social care will ask you about finances.
Make them follow the process and absolutely NEVER disclose financial details until they have completed all assessments.
Good luck, it’s hard but worth it.
I’ve posted this link in other threads but please, please buy this ebook and follow it to the letter…
https://caretobedifferent.co.uk/product/how-to-get...
Did it for my FIL and got all his care paid for. The professionals that you speak to and are responsible for care will start by denying knowledge of this process. When they work out you know more about it than the normal person, they’ll tell you you’ll never get a high enough score. Then social care will ask you about finances.
Make them follow the process and absolutely NEVER disclose financial details until they have completed all assessments.
Good luck, it’s hard but worth it.
Paulsd said:
My thoughts are with you OP.
I ve posted this link in other threads but please, please buy this ebook and follow it to the letter
https://caretobedifferent.co.uk/product/how-to-get...
Did it for my FIL and got all his care paid for. The professionals that you speak to and are responsible for care will start by denying knowledge of this process. When they work out you know more about it than the normal person, they ll tell you you ll never get a high enough score. Then social care will ask you about finances.
Make them follow the process and absolutely NEVER disclose financial details until they have completed all assessments.
Good luck, it s hard but worth it.
TBF frontline NHS staff have no worthwhile knowledge or training in funding mechanisms. Their role is to assess, advise, support and treat in re medical conditions. They may interface with CHC and LA and provide information to them but they don't make the assessments or decisions in re funding. I would take the position that it is not appropriate for frontline staff in a clincial role be the arbiters of funding but, boy, does it suit the politicians to hide behind a clinical front line and keep the mechanisms for funding obscure. I ve posted this link in other threads but please, please buy this ebook and follow it to the letter
https://caretobedifferent.co.uk/product/how-to-get...
Did it for my FIL and got all his care paid for. The professionals that you speak to and are responsible for care will start by denying knowledge of this process. When they work out you know more about it than the normal person, they ll tell you you ll never get a high enough score. Then social care will ask you about finances.
Make them follow the process and absolutely NEVER disclose financial details until they have completed all assessments.
Good luck, it s hard but worth it.
This is frustrating for patients, their relatives and NHS staff. It's a feature of the broken relationship between health and social care. See also 'bed blockers'
Sympathies to all in this situation, it is horrible for all concerned.
One thing not mentioned so far in this thread is that a person suffering from dementia will qualify for attendance allowance. It amounts to around £80 per week which helps to pay for (in our case) a paid person to come in for an hour each day, 5 days a week. They change hearing aid batteries and fit them into the ear. Make sure that meds have been taken, food is in the house, drive to local shops etc and then just sit or chat to the subject over a cuppa.
It all takes pressure of the relatives
One thing not mentioned so far in this thread is that a person suffering from dementia will qualify for attendance allowance. It amounts to around £80 per week which helps to pay for (in our case) a paid person to come in for an hour each day, 5 days a week. They change hearing aid batteries and fit them into the ear. Make sure that meds have been taken, food is in the house, drive to local shops etc and then just sit or chat to the subject over a cuppa.
It all takes pressure of the relatives
So as an update they did bloods on him and discovered he is very low in B12 levels, so he will be having regular B12 injections soon. If the recent decline is due to B12 deficiency, there can be some improvement to symptoms once it's corrected according to the GP. I'm not holding my breath but it's going to be better for his overall health regardless. If he wasn't so stubborn and constantly refused to go to the GP it may have been detected months/years earlier.
oddman said:
Paulsd said:
My thoughts are with you OP.
I ve posted this link in other threads but please, please buy this ebook and follow it to the letter
https://caretobedifferent.co.uk/product/how-to-get...
Did it for my FIL and got all his care paid for. The professionals that you speak to and are responsible for care will start by denying knowledge of this process. When they work out you know more about it than the normal person, they ll tell you you ll never get a high enough score. Then social care will ask you about finances.
Make them follow the process and absolutely NEVER disclose financial details until they have completed all assessments.
Good luck, it s hard but worth it.
I ve posted this link in other threads but please, please buy this ebook and follow it to the letter
https://caretobedifferent.co.uk/product/how-to-get...
Did it for my FIL and got all his care paid for. The professionals that you speak to and are responsible for care will start by denying knowledge of this process. When they work out you know more about it than the normal person, they ll tell you you ll never get a high enough score. Then social care will ask you about finances.
Make them follow the process and absolutely NEVER disclose financial details until they have completed all assessments.
Good luck, it s hard but worth it.
Thanks for the link, will be purchasing the e book soon.
Meanwhile, you say "the professionals you speak to". Can you say who these professionals are so I will know if I am starting in the right or wrong place? It is social care, local council, medics, for instance? Thanks
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