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Advice with my father

DaveCr1968

Registered User
Jul 5, 2020
58
Hi all

I'm new to the forum and apologies for the long post. I need advice.

It is pretty obvious that my dad has had dementia over the past few years. He was diagnosed in 2012 with short-term memory loss and it has got massively worse. He is 86 now and sometimes doesn't recognise me, his own home (where he lives) and is becoming verbally aggressive, plus he gets up all hours wanting to go home. He seems to be living decades ago but does still wash and shave, etc. He can make a cup of tea but that is about it.

My mother was caring for him (somewhat in denial) but she is now in hospital and I have realised that he is far worse that I thought (even after him calming down a few days after she was admitted). When she gets out of hospital (likely a slow recovery), she will be in no condition to provide care and I cannot be here indefinitely. Dad has been reassessed and the local memory clinic has diagnosed dementia. Also, I'm not sure I am the best person to be providing care and think he may need some professional help.

I have a meeting with social services next week and will be talking to his GP, but any advice is welcome regarding what to do. I can't believe how draining it is, particularly calming him down and having the worry of my mum's illness, plus trying to work from home.

Any advice is welcome.

Regards

Dave
 

TNJJ

Registered User
May 7, 2019
1,827
cornwall
Hi all

I'm new to the forum and apologies for the long post. I need advice.

It is pretty obvious that my dad has had dementia over the past few years. He was diagnosed in 2012 with short-term memory loss and it has got massively worse. He is 86 now and sometimes doesn't recognise me, his own home (where he lives) and is becoming verbally aggressive, plus he gets up all hours wanting to go home. He seems to be living decades ago but does still wash and shave, etc. He can make a cup of tea but that is about it.

My mother was caring for him (somewhat in denial) but she is now in hospital and I have realised that he is far worse that I thought (even after him calming down a few days after she was admitted). When she gets out of hospital (likely a slow recovery), she will be in no condition to provide care and I cannot be here indefinitely. Dad has been reassessed and the local memory clinic has diagnosed dementia. Also, I'm not sure I am the best person to be providing care and think he may need some professional help.

I have a meeting with social services next week and will be talking to his GP, but any advice is welcome regarding what to do. I can't believe how draining it is, particularly calming him down and having the worry of my mum's illness, plus trying to work from home.

Any advice is welcome.

Regards

Dave
Hi. As you have had the assessment it will depend if you are self funding or if your dad is going to need SS.
Also if you haven’t got LPOA for finances and health and Welfare then I suggest you try getting that.
It will all help to get things in order.
If your dad doesn’t have Attendence Allowance then apply. I would try and get the higher rate as he does get up at night and needs supervision.
Also has your dad been assessed for “capacity “?
My dad has “fluctuating capacity “ which doesn’t help when he says no to going into a home(he has carers).

If you are self funding you can organise things yourself and get carers in .
If not you will have to contact SS and get them to organise carers as it definitely sounds like he needs it.
You could also organise respite for him which would give your mum a break.
I hope some of this information helps.
 

kindred

Registered User
Apr 8, 2018
2,526
Hi all

I'm new to the forum and apologies for the long post. I need advice.

It is pretty obvious that my dad has had dementia over the past few years. He was diagnosed in 2012 with short-term memory loss and it has got massively worse. He is 86 now and sometimes doesn't recognise me, his own home (where he lives) and is becoming verbally aggressive, plus he gets up all hours wanting to go home. He seems to be living decades ago but does still wash and shave, etc. He can make a cup of tea but that is about it.

My mother was caring for him (somewhat in denial) but she is now in hospital and I have realised that he is far worse that I thought (even after him calming down a few days after she was admitted). When she gets out of hospital (likely a slow recovery), she will be in no condition to provide care and I cannot be here indefinitely. Dad has been reassessed and the local memory clinic has diagnosed dementia. Also, I'm not sure I am the best person to be providing care and think he may need some professional help.

I have a meeting with social services next week and will be talking to his GP, but any advice is welcome regarding what to do. I can't believe how draining it is, particularly calming him down and having the worry of my mum's illness, plus trying to work from home.

Any advice is welcome.

Regards

Dave
welcome, Dave, and I am glad you have found us. All sympathy with this situation. You will need to be firm with the social services as you are there with your dad. They often act as though if there is a carer in place - that is, you, nothing more needs to be done.
Consider stressing that you need to leave, you cannot provide care any longer. Ask about emergency respite - whereby your dad would go temporarily into a residential home while your mother recovers. You would probably need to pay for this but it is clear that your mum cannot provide care either at the moment.
Social services may offer to send in carers several times a day and you will need to think how you feel about this, is it going to be enough, especially with no cover at night.
Please write down all your concerns and what is happening so these points are addressed.
Others will be along with useful links.
warmest, Kindred
 

DaveCr1968

Registered User
Jul 5, 2020
58
Hi. As you have had the assessment it will depend if you are self funding or if your dad is going to need SS.
Also if you haven’t got LPOA for finances and health and Welfare then I suggest you try getting that.
It will all help to get things in order.
If your dad doesn’t have Attendence Allowance then apply. I would try and get the higher rate as he does get up at night and needs supervision.
Also has your dad been assessed for “capacity “?
My dad has “fluctuating capacity “ which doesn’t help when he says no to going into a home(he has carers).

If you are self funding you can organise things yourself and get carers in .
If not you will have to contact SS and get them to organise carers as it definitely sounds like he needs it.
You could also organise respite for him which would give your mum a break.
I hope some of this information helps.
Thanks for this. I suspect we have missed the boat with power of attorney but I'm looking into that next week.

The memory clinic assessor has mentioned the attendance allowance and both are eligible to apply. They already have some help for gardening and stuff. The fact he is up most nights is hard work and the memory clinic asked me if I would be OK leaving him on his own overnight. The answer was very much no.

I think I will have to be firm with SS as it will be a while before my mum comes out of hospital, so effectively I need help. I live 180 miles away......
 

DaveCr1968

Registered User
Jul 5, 2020
58
welcome, Dave, and I am glad you have found us. All sympathy with this situation. You will need to be firm with the social services as you are there with your dad. They often act as though if there is a carer in place - that is, you, nothing more needs to be done.
Consider stressing that you need to leave, you cannot provide care any longer. Ask about emergency respite - whereby your dad would go temporarily into a residential home while your mother recovers. You would probably need to pay for this but it is clear that your mum cannot provide care either at the moment.
Social services may offer to send in carers several times a day and you will need to think how you feel about this, is it going to be enough, especially with no cover at night.
Please write down all your concerns and what is happening so these points are addressed.
Others will be along with useful links.
warmest, Kindred
Hi Kindred

The issue is that we don't have an idea when mum will be out of hospital, let alone her condition. Even if she gets to full health (she should), she has struggled for the past year, particularly in the evenings. I think this is known as sundowning??? Dad has all the symptoms, including mobility issues.

The issue is indeed cover at night, so carers in the day may be OK when mum is back to full health but if she takes 3 months to recover (possible), I think I need to make it clear to SS that I am looking after him temporarily and need to go back home. I'm already shattered after a week.

I'm more feeling guilty because I almost feel obligated to provide care. I have rapidly realised I am not the best person and need to consider dad's welfare.

Regards and thanks

Dave
 

TNJJ

Registered User
May 7, 2019
1,827
cornwall
Thanks for this. I suspect we have missed the boat with power of attorney but I'm looking into that next week.

The memory clinic assessor has mentioned the attendance allowance and both are eligible to apply. They already have some help for gardening and stuff. The fact he is up most nights is hard work and the memory clinic asked me if I would be OK leaving him on his own overnight. The answer was very much no.

I think I will have to be firm with SS as it will be a while before my mum comes out of hospital, so effectively I need help. I live 180 miles away......
You most definitely will.SS don’t provide overnight care . You will need to be firm with them as they have the “Duty of Care” and will try and offload it onto you. But as you live 180 miles away that will definitely come into play. He is a “ Vunerable adult “ who is at “risk” if there is no-one at home. These are key phrases if you should ever need to use them,
 

Zcat

New member
Aug 30, 2019
9
Hi Dave
I have a similar problem with mum 40 miles away and is in the sundowning phase of wanting to go home.
She is now packing bags and keeps threatening to go for the train but thankfully had not done yet.
After speaking to Carers Link they advised a medication check with her GP as they can prescribe something to calm her at night which should reduce symptoms. However, Admiral Nurses Helpline (who are amazing for advice) agreed in principle yet stated to be aware of side effects and only consider it as a last resort.
Food for thought. I have not yet requested medication but have emailed her GP to update him and asked if he can help at all.
Try Admiral Nurses, they will send you loads of quality information.
Good luck x
 

DaveCr1968

Registered User
Jul 5, 2020
58
Hi Dave
I have a similar problem with mum 40 miles away and is in the sundowning phase of wanting to go home.
She is now packing bags and keeps threatening to go for the train but thankfully had not done yet.
After speaking to Carers Link they advised a medication check with her GP as they can prescribe something to calm her at night which should reduce symptoms. However, Admiral Nurses Helpline (who are amazing for advice) agreed in principle yet stated to be aware of side effects and only consider it as a last resort.
Food for thought. I have not yet requested medication but have emailed her GP to update him and asked if he can help at all.
Try Admiral Nurses, they will send you loads of quality information.
Good luck x
Hi there

Thanks for this. I intend contacting his GP tomorrow now that the diagnosis is back from the memory clinic.

I will try Admiral Nurses today.

Dave
 

canary

Registered User
Feb 25, 2014
13,923
South coast
Hi @DaveCr1968
I honestly think you are looking at permanent residential care here - although SS might want to start off with respite care (which can be made permanent before he would come home).

It sounds to me like your mum has tried to hide all his symptoms and manage it all by herself, but it has taken a terrible toll on her health. In three months time (when she comes home) your dads condition will have progressed - today is the best he is going to be in the future - and I really think it extremely unlikely that she would be able to continue. She might think that she could, but at what cost?
 

DaveCr1968

Registered User
Jul 5, 2020
58
Hi Canary

I would tend to agree with you about the residential care and I have said to myself that I would look after him for a maximum of one month. Thankfully, I can work from home and have a really supportive team, boss and company. He is OK as I type this because he is eating, but he changes very quickly and is very unpredictable in the evenings and overnight.

However, from the feedback from here (really useful) and mum's friends, it has dawned on me that she will need help, regardless of her condition in the future and am not sure what this looks like. Mum was always insistent that if she could look after him she would, but not sure she can any more. This has all come to a head now she is in hospital (seriously ill) and it has become evident how much my dad has deteriorated. I visit once a month generally, so don't see the full story. I'm not sure she has hidden anything but suspect she has been in denial until a year or so, when she started to struggle with the overnight antics.

Regards

Dave
 

DaveCr1968

Registered User
Jul 5, 2020
58
Hi all

As an update, SS have been today and whilst dependent on mum's condition when she leaves hospital (this is looking much more positive now), they are looking at a home care package for my dad but are concerned about overnight safety. The hospital will assess mum separately but it is likely both of them at home with a few home care visits per day or another scenario is dad goes temporarily into residential care with mum at home until she can manage (along with home care). Worse case scenario is dad goes into permanent residential care with mum at home and this will be the night time antics (that are getting me down).

My dad did not respond well to SS....... If there were any doubts before, there aren't now!

Dave